starting Remicade

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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/15/2006 4:52 PM (GMT -7)   
Kinda out of commission.  Knees very swollen and still in quite a flare.  Had a good story from it at least! LOL.
Began Immuran friday nite.
Seeing GI guy wednesday.
We all agree to start Remicade in 6 weeks.
Wish me luck! 
Erin (no concussion..thank God)
(still with a fat lip...still not very sexy....looks like collagen mayhem or something) 

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/15/2006 6:41 PM (GMT -7)   
Ok, why do you have to wait 6 weeks? What is the Immuran for? I'm such a rookie... :)
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/16/2006 8:58 AM (GMT -7)   
Umh?...the Immuran I have to take as an "induction" before Remicade. eyes
"like induction to the hall of fame or something?" LOL. 
that's what he said....induction before Remicade.  and that it will also be helpful for the RA and CD flare as a bonus.
But the GI & rheummy both said the same thing...so I guess between the 2 of them, they must be right!
At the point where I don't care...WHATEVER!....just make it stop!!!! Had enough.  I'll swollow quarters if that's what it takes. LOL.
:-)  

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/16/2006 9:53 AM (GMT -7)   

I'm guessing there is another post regarding the fat lip? I'll take a look.

I'm glad your starting Remicade. I hope it does wonders for you!!!! I'm sorry you have to wait 6 weeks though, that is a LIFETIME when you are in the kind of pain you are in!

I've never taken Immuran, let alone heard of it before here.....I'll have to look that one up. Is it helping anything yet? Or is that one that needs to "build up" in your system for a few weeks before you see any results?

Good luck, I'm thinking of you!

:-) **
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/16/2006 10:36 AM (GMT -7)   
don't know too much myself about Immuran, personally.  no experience with it...but i know "about" it and it is another immunosuppressant.
 
does the Remicade burn when they infuse it?
 
i sure hope it works wonders...i want to go back to work.
 
hah, my fat lip has gone down.  just purple now.  knees still swollen.
 
haven't noticed any change since on the Immuran...but then again, the knees are shot! and by putting all my weight on my elbows & shoulders...they're caput too!  we shall see!  

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 1/16/2006 3:32 PM (GMT -7)   
Hey Erin, congrats on starting Remicade. No, it does not burn while infusing. I sure hope it helps. The Imuran is best if you take it at bedtime. Some peeps tend to get a little nauseated on it, that why my gi said take right at bedtime. So far, after 3 yrs of it no problem with it. Also, my gi says the imuran enhances the effect of the Remicade. All of his Remicade peeps take Imuran. But, it will take a good 3 months to build up in your system. Usually around infusion 3 most peeps start to feel a difference w/Remicade. I go tomorrow for mine, every weeks I am plugged in and being beamed up. LOL. Hugs, Susie


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/16/2006 8:57 PM (GMT -7)   
Susie to my rescue! Thanks my friend...I too hope to be beamed up! The Imuran I've actually taken without food the past 3 days....no nausea, BUT THANKS FOR THE HEADS UP. I'de rather not even chance it, so with food and at night I shall take.
So chances are I'll be remaining on Imuran while on Remicade?
How are you doing with it? How's your joint pain?
See, I'm throwing all my eggs into this Remicade basket. I really have no plan B. I'm very confident and have a lot of hope in starting the infusions...but then again, after every RA treatment so far has failed/or not worked up to a remission point; I don't want to have false and clouded optimism ya know? I would be terribly heartbroken if the Remicade failed as well. I want to be able to work at least once or twice a week! And be a good, healthy girlfriend and wife for my honey....and open his beer for em darnit! It's scary that I've gone through almost all options. Maybe total joint replacement! I'll be the bionic woman.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/16/2006 11:09 PM (GMT -7)   

Hang in there, Erin. I hope it works for you as well. You so deserve some relief!!! Focus on that before you plan your next college and career move, though ! tongue

Wife, eh? Something I missed???

I did not have any stinging problems with Remicade. I just rmeember how coooollllld the saline solution is before they give it to you! tongue

 

**


 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/17/2006 11:23 AM (GMT -7)   
:-)  Thanks Camama.  Were you happy with the progress you made with the Remicade?
LOL. No, you didn't miss anything!  I didn't elope over the holidays.  But I do want better for my honey.  He deserves it as much as I do.  I would actually like to clean, cook...etc.
I'm sure it is no fun for him dragging me around and not feeling well.  I'm sure he's sick of seeing me in pain.  (In all honesty, he should be helping me take my pants OFF....not helping me PUT THEM ON!) LOL. tongue
...."focus on that before you plan your next college/career move..."
What are ya tryin' to say!!  I dive into things without looking! LOL ...no you're right on that. Guilty.  How did you know I was planning something?? Oh that's right...mother's instinct.  Geez...I'm easy to read huh?
I just have so many things I want to do, and I'm tired of putting my life on hold...can ya blame me? 
So what was it like for you with Remicade therapy?  Why did you start it and when did if any...did you feel results?
I ask because I want to hear "real" stories of people's experience and success or non-successes with it...not ones from a pamphlet which are glamourized!
Did you have a port? or did your veins hold up OK.  mine are pretty good, they're quite beefy veins!  a phlebotomists dream. LOL.
Did you start enbrel yet??
{{{{{{{{{{{{{ hugs }}}}}}}}}}}}}}}}
erin

Black Jack
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 1/17/2006 5:59 PM (GMT -7)   

Dear Ducky,

My wife just sentenced me to this site: no insult intended. My point is I had a discussion with a relative who was taking Enbrel and she was all over the board--to not having p/a; to taking Enbrel with no complications, and being cured in one day(!); and from having no complications from Enbrel, my questioning led her to say that she was taking Enbrel while pregnant and went full term, but the baby was born dead (I remember that sad occasion, but I was not told why the baby was dead.); then she said she had congestive heart failure while taking the drug.

See what I mean by "sentenced"? I've been deteriorating since June, seven months, and I am now under the care of a 4th rheumotologist. The first one treated a sore elbow with a cortisone shot. I soon had pain in my index, middle and ring fingers on my right hand, same side as the elbow. She prescribed "The Purple Pill" and Mobic. For each of four visits she asked me why I had rashes on my knees. I told her I had no idea that I did. She suspected lupus, but I had one marker out of four, and she dismissed it. My father's sister has Lupus.

Soon I was nauseous from the mobic and Nexium, so she took the Nexium away. Strange move, I thought. I happened to tell my pharmacist that my stool was black and he told me that I was having upper stomach bleeding from the Mobic. I quit it and the doctor.

My second rheumotoligist found ankylosis spondilitis and p/a, but he wouldn't treat either until a dermotologist confirmed the psoriasis, which is now truly psoriasis. My kneecaps and elbows are a deep purple; they sometimes bleed, and I am a regular at the dermotologist now. My dermotologist is a good doctor, whom my wife went to a few years ago, and he was disgusted with having to make my diagnosis. That was enough for me to look for another rheumotologist.

My third put me on sulfazine, which made me car sick, and I'm on the road every day. She said she was going to be available to me--but turned out to be a "pill." By the way, she disagreed with the Ankilosis, and chalked it up to aging. I'm fifty-two and in great shape, although I battle major depression, OCD, etc. "What a strange trip it's been...."

She criticized the dermotologist' meanwhile my body continued to deteriorate and the sulfazine did nothing. 

 

My wife squeezed the name of a good rheumatologist out of him, and I see him now, my fourth. He diagnosed me with p/a, ankylosis spondilitis, tendonitis, one more condition, and AGE. He has prescribed Enbrel, but his receptionist/? dropped the ball when my drug plan refused to fill the 50 mg./weekly prescription. It's eleven days later, and no medicine. I don't want to blow the whistle on her, and my reading about Enbrel scares me. (Some people manage to get dealers'-size dope from their doctors, but I was offered no pain medication, and I'm suffering, afraid to ask, lest I be labeled as someone seeking percs, etc.  

 

My father died at thirty-eight of coronary thrombosis; two of his brothers did; my grandfather did--at age fifty-five or so, and I've been on cholesterol-lowering medication for sixteen years. I figure at fifty-two I don't need my immune system compromised. I'm afraid that heart disease or some other latent disease is going to surface.

I'm thinking I should find a wind tunnel and search for The Tin Man and hang around with him.

My right elbow now has a quarter moon of fluid and debris between my forearm and socket. The ligaments there have pulled away and have hardened into a lump. The elbow feel as though it's on a string--I shoveled snow yesterday and my elbow is pain today. I bumped it earlier and wow! My right fingers are stiff and sometimes feel as though they are splintered and bones are pushing into my hand. I have the bottom two discs--L4 and L5 bulging; the cartilage is going, going....and I have deterioration in my pelvis. My neck gets so stiff and painful by the end of the day now. My shins feel as though someone whacked a bat across them. My knees are going. My fatigue is bottomless. It takes me three to four hours to loosen up and have a mind in the morning. I can then work--mildly, hardly--for two hours or so, and I'm turning into an oak chair again.

Any advice? I work a full-time job and I teach two college freshman English courses a semester. It's a matter of time before my full-time employer starts asking why I'm not a top producer anymore. Where am I going? scool

P.S. My wife's looking at the length of this message and she says you'll probably lob tomatoes at me for my longwindedness. scool


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 1/17/2006 6:30 PM (GMT -7)   

Hey Erin,

You asked and here goes; When I started Remicade 3 yrs ago I had terrible veins to begin with. After doing some infusions and the nurses becoming very frustrated because all my veins wanted to do is blow, my dr rec a port be put in my chest. This decision was made after it appeared I would be a lifer on Remicade until something else came down the pike. Keep in mind Remicade is the only med I can take. I did have a terrible reaction on my 3rd infusion, Remicade site says that is when it usually happens and it happens right after they increase the rate of flow. I fit the picture perfect. I was given iv benadryl & soluable medrol immediately. Waited a awhile and resumed the infusion at a lower rate. From that point on I am given pre-meds and have not had one problem. I did a little research and found that Imuran is also given for arthritis. By the way dogs are given Imuran for arthritis. When I first stared Remicade not only did it help my gut, but it also helped my joint pain for a long time. Then the OA kicked in full force and Remicade does not help OA.

The only pain I ever had was from multiple sticks, a nurse pushing the iv pre-meds too fast. My veins actually got burned once from a nurse pushing the benadryl too fast. An area of veins turned beet red and it was weird looking. The Remicade is mixed with your saline drip so there is no burn there.

Do not expect immediate results from the first or second infusion. Most can tell a difference after 3rd infusion. I have rarely heard of peeps getting good results on 1st or 2nd one. Lets hope you are one of the lucky ones that do get immediate relief.

The infusions for me last 3-4 hours, due to pre-meds I take a long nap. Be sure to take a book or something in case you don't fall asleep on your own. The nurses monitor your temp/bp and iv site every 15 mintues the 1st hour. They are in there messing wih you every time you turn around. They will ask if you are doing ok. So take something to entertain yourself with. I drove myself until the 3rd infusion but I no longer do it now.

If you have a reaction on your first infusion don't panic. They can give you benadryl and soluable medrol and you will be fine. Insist that your dr tries it again with pre-meds. On the cd board I have read some peeps reacted on 1st infusion and dr refused to let them have anymore. Thats wrong, they need to be given pre-meds. In fact, I don't know why they don't pre-med everyone thats on it.

My infusions for maintenance is every 4 weeks. I never made it 8 weeks. Your dr needs to tailor your maintenance doses to your needs. Your initial does of Remicade are given at 1,2 & 6week intervals, then on to maintenance doses. DO NOT LET YOUR TELL YOU THAT YOU CAN ONLY HAVE IT AT 8 WEEK INTERVALS. When I 1st saw my gi I was so bad off, keep in mind I had a resection done out of the country 7-4-02 saw my 2nd gi on 10-30-02, that he said if the Remicade only lasted 2 weeks he would give it to me every 2 weeks. My resection surgery led to a myriad of other problems. I have not been well since the surgery, but it was an emergency surgery and they did save my life.
 
Have your Remicade and relax. There is just too much negative hype on alot of drugs. But, you are looking for quality of life same as me, and we will try anything to achieve that. If you have a problem on Remicade let me know. There are so many little things too many to list, ok.
 
Be ositve that it will help you. Get your head on straight about it. Believe me, its no big deal, only what we make it in our minds. Anymore questions let me know. I am 3 yrs into Remicade. Hugs, Susie


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/17/2006 9:57 PM (GMT -7)   

Hey Erin,

1. Yes, I know you and you did leave a few hints in your post about your "plans" - I can see you now planning your phd and private practice before your first infusion! tongue

2. I've told you before about my Remicade experience before, but here goes: At the time of my infusion, I was a mess with pain but also my psorisis had gotten so bad in my hands that my thumb was loosing chunks of skin. It was so painful! After my first infusion - I kid you not - my skin improved w/in 48 hours, I was also feeling slightly better (but maybe that was because my thumb wasn't so painful! ha ha!) By the 2nd infusion I was definetly feeling better. And by the 3rd intial infusion, we went on a family camping trip in to Colorado where we got stuck camping in snow and rain at 9,000 ft. I was in Remicade heaven! I was floored at how GOOD I felt and how I was not bothered by anything!

From that point on, I was loving the med. I could finally fight a cold instead of it being a 3 month ordeal. My joints felt much better. I had denied taking solumederol due to a past problem with Deltasone. I did take Benedryl. I do have small veins and getting the IV was the worst part. I did eventually start having mild perpetual cold symptoms, but nothing that knocked me down or interfered with my life.  I did 8 weeks for quite a while and moved to 7 weeks.

Unfortunately, after 18 months, I slowly started having some allergic reactions during the infusions, eventually it lead to a couple of bad flares where it was like I got the anti-remicade infusion. Then, I started becoming seriously ill with infections.  Mind you - I've always had a very weak immune system and was stricken with actue mono 7 months before starting Remicade that affected my liver and spleen and probably should NOT have started the infustions so soon afterwards. I had started w/ a new rheumy who didn't quite "get" how sick I was with mono, in fact, I had just been given the OK 6 weeks prior my 1st infusion to lift more than 5 pounds. After my 2nd infusion, I had a mild relapse with the EBV. Because of all the health issues I have in general from the psoriatic arthrits and the weak immune system, my system gave out and my liver went bad last year after about 20 months. I stopped Remicade and have slowly been recouperating this past year. My liver has improved, though appears to be slightly damamged - this could be because over the years I've put on an enormous about of weight from immobility and have not been eating well due to depression gorging.

Do not let this scare you. I know a number of people who have GREAT long term results with Remicade for CD AND ARTHRITIS! As well as people who did NOT get relief from Enbrel or Humira, but did from Remicade!

Good luck! ** (no, I still have not started Enbrel)

 

 


 


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 1/17/2006 10:38 PM (GMT -7)   

Hi Black Jack and welcome to Healing Well.

I'm so sorry to hear your experience these last 7 months. Unfortunately, most of us here (if not all of us) can releate to your situation AND pain!

You have done the right thing in your continue search for the right rheumatologist. So many of us have limited choices and have the same problem with them. They all want to "start from scratch" and pooh-pooh other doctor's diagnosis. My new rhuemy (because my old one left the practice) did the same in wanting a dermatoligist to "confirm" my psorisis after all these years, and the dermatologist did the same thing yours did.

The doctor taking you off Nexium and not trying something else is weird. (Prevacid helped me tremendously when I was on azulphidine.) There are so many meds out there that will help buffer your stomach from medications and are important for your well being. last thing you need is additional problems! There are just as many meds for arthritis as well. If you have a family history of heart problems and Enbrel could make it worse, then yeah, maybe you should look in to other medication options before starting Enbrel. HOWEVER - I believe someone here on HW stated that a lot of those problems/warnings so RARELY happen that you really have to weigh the pros and cons. So many people get such great relief from the meds that the benefits outweigh the risks. You have to also take in to account that by having an auto-immune disease you are automatically at higher risks for some of these diseases. You also have a hereditary factor that increases that risk with your heart. And these factors were mentioned, but not taken in to account when they did the studies on these drugs.
 
Also, when you DO have the added risk factor, as you do, I believe the doctors monitor you closer and are supposed to do regular testing to ensure it is not affecting your health in a negative way. You possibly need to see a specialist in that area to keep you in check - for instance, I take Plaquenil, it can affect the eyes, so I'm supposed to see an opthamologist every 6 months, I'm told. I say "supposed to" because my rhuemy never sent me to one, when my PCP found that out, she was fuming mad and gave me a referral to one.  You need to stay EDUCATED and ON TOP of your doctors for your own sake. If you don't like one doctor's answers, get a second opinion!
 
If your doctor feels Enbrel is a good idea and you've exhausted the other options, give it a shot. You may just say, "why did I wait so long?" Make sure you are monitored for heart problems, and if you start having other continuing health problems - you can stop the medication. You're immune system will build up and get back to normal if you discontinue.
 
One last note - constant pain like you are in is going to cause depression. You are already aware of it. Get help with that, it will help with the pain.  And make sure your docs do a full blood panel on you to ensure nothing else is going on with your body causing this extreme pain and swelling. 

Good luck.  **
 
 
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/18/2006 5:58 AM (GMT -7)   
yeah Good Morning BlackJack yeah
 
Glad you found us here, and I am very happy that you decided to post!  Welcome to Healing Well... Hhhhmmmm were to start.. Well, first of all, I'd like to say thank you to CaMama for welcoming you to the forum as well as giving you some great advice.  Thanks CaMama!  You're the best! :-)
 
A lot of what CaMama said is spot on... I don't think she put it in her post, but she suffers from PA also... seems as though we are finding a lot of people have it, which is great, it helps with the diversity on this site...
 
I am sorry to hear about your relative and her baby.  It makes me wonder what her rheumy was thinking?  Before I got put on Enbrel, my rheumy asked me if I was pregnant, I replied No.  He then asked me if I had planned to have more children in the future.  Again, my reply was No.  And he said, "Good, because you cannot go on Enbrel if you are pregnant or trying to get pregnant."  I didn't ask for any other explanation other than that since my hubby and I have both been taken out of the gene pool.
 
I am sorry it has taken you 7 months to finally find a rheumy that has diagnosed you correctly.  I don't know if you are familiar with my story, but here it is:
 
Oct 2003 - Noticed 4th toe on rt foot swollen and purple.  Went to dr. Diagnosis:  Jammed toe
Nov 2003 - Noticed toe wasn't getting better, went back to dr.  Diagnosis:  Hammer toe, due to jammed toe.
Dec 2003 - Noticed pain in toe was spreading to other toes.  Diagnosis:  Flat feet, you need orthotics.
Jan 2004 - Referred to podiatrist for orthotics.  Did a bone scan.  Diagnosis:  You have multiple fractures in your toes, feet and ankles. 
Feb - Dec 2004 - Underwent MULTIPLE tests, MRIs, Bone Scans, X-Rays, Labwork. Diagnosis:  Neuroma?  Arthritis?  We have NO Idea (that is actually what my podiatrist said).
Jan 2005 - The pain is now in both feet and 8 out of my 10 toes are swollen and purple.  I start looking online to see what I can see about my mysterious pain.  On an arthritis website I find a little blurb about PA.  I clicked on the link and all my questions had been answered.  yeah
Jan 2005 - Took all that I had printed off the internet to my Podiatrist to see if I had diagnosed myself correctly.  His response?  "Why didn't you tell me you had psoriasis?"  eyes
Mar 2005 - I get to see my rheumy for the first time.  Within 10 minutes of looking at the plaques on my hairline, scalp and back and seeing my toes he says, "Yup, you've got PA.  I'd like to start you on a relatively new drug called Enbrel."
 
Prior to Oct 2003, I had ALWAYS been very active.  I am a 32 year old mother of 3, and I am in the Air Force.  I am an aircraft mechanic, so I have to keep somewhat in good condition to be able to work the long hours, and do a lot of the heavy manual work.  I read all the literature on Enbrel and saw a lot of the sites out there that HATE it and think it's the worse thing for you.  But what it boils down to is what CaMama said, you've got to weigh your options.  There are side effects for everything out there.  I brought these same concerns up with my dr.  I remember the conversation clearly...
 
"Lymphoma, did you say chance of lymphoma?  Are you kidding me? "  His response, "Rory (my real name), did you take birth control pills?"  My reply, "Yes", Him:  "Did you ever smoke, or have you ever been around 2nd hand smoke?"  Me:  "Yes."  Him:  "Do you breath air that has been polluted with carbon dioxide from car exhaust?"  Me:  "Yes, Ok. I get it.  Everything causes cancer, right?"  Him: "Pretty much.  But with medicine you have to tell everyone that there is a chance, it is slight, but there is a chance.  Tylenol, people use it all the time.  Use it to much and it can destroy your liver.  It's up to you, weigh your options.  Try it, and if it's not right for you, then we can try something else."  So I did.  And since then, 95% of my plaques have cleared up.  My toes aren't swollen anymore.  I can walk without a limp now.  I can stand for longer than 5 minutes.  I can even dance again.  I can chase my kids and my dog around the house and play.  I can work on airplanes and not have to sit down to rest.
 
I too have a history of bad health.  I have a whole truckload of things wrong with me auto-immune wise.  My dad has high blood pressure.  My mom has diabetes.  My grandfather died of CHF.  My grandmother died of a stroke.  My aunt just recently had a stroke and both my sisters have thyroid diseases (as do I). 
 
I get bloodwork done every 3 months to make sure everything is going ok with my body and the Enbrel.  If you have a good doctor, he/she will continue to monitor you since you have a history in your family of multiple diseases.
 
Like my rheumy told me, the choice is yours.  They aren't gonna force it on you.  But for me, it has been a godsend.  I also know people that it didn't do anything for and they are still out there looking.  I wish you the best of luck BlackJack, it is a tough road. I know, we have all been there. 
 
Please forgive my long windedness, but wanted you to know, that you are not alone in your plight.  We all have very similar stories.  And what works for me, may not work for you.  Hopefully you've got a good rheumy now and they can steer you in the right direction. 
 
I wish you pain free days, please let us know what you decide. - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/18/2006 10:01 AM (GMT -7)   
Re: Remicade,
Thanks CaMama & Susie. Camama...you are way too funny and psychic!  Awe schucks...ya mean I shouldn't be planning those things? LOL.  A girl can dream can't she?.....you're good!
 
Question for Black Jack:  Are you in the U.K.?
Well, if it makes you feel any better....your sentence to HW won't be a bad one.
Under the circumstances, keeping in touch with the folks here is one of the best things you can do.
We will try not to plummit you with tomatoes.
I read your post in depth.  It's good that you stated everything....whatever is going on in your life does effect your health.  That was a scare with the still birth, I'm so sorry about that.
Looking forward to hearing from you soon.
Sincerely,
Erin

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 1/19/2006 12:35 PM (GMT -7)   

Hi Blackjack,

I too wanted to welcome you to HW. I do not have any of the conditions you have. Instead I have severe osteoarthritis in all my major joints. I have had 2 knees surgeries a year ago. The final dx from those is I need 2 new knees. I am 52yrs old. I have constant swelling in my elbows, right really bad and its very painful. I cannot take any NSAIDS, its like drinking gasoline on my stomach. I also have crohns disease and have been on Remicade for 3 yrs every 4 wks.

I have arthropathy of the facet joint @L5-S1 which causes terrific back and hip pain. I had a morphine pump implanted June of 05, to help controll the pain that is all over my body. I do not tolerate morphine so I a cocktain of 4 different drugs in it. Its finally beginning to work. I go into congestive heart failure rather easy on certain medications, all steroids and opiates. My increases in my pain pump are done at only 10% of a noraml dose.

I am monitored by my gi since I am on Remicade and people with CHF have to very careful, some can't take the Remicade because of this problem. I do labs every 4 months to check the liver. My pain dr also monitors me as well. I do feel like I spend 90% of my time wither at the hospital or a drs office, but hey if they can keep me going its worth it.

Depression-oh what a bugger. Yep got that too. I take Lexapro and it really keeps things in check for me. I am not a weak person, you will find we are all very strong peeps, the average bear would not endure what we do in order to have some kind of a decent life. Get to a dr & get your depression under control. You will be amazed at how much better you will feel.

As for the gal that did not order your meds. Well, I just don't know what to tell you there except you will have to keep a check on her.
 
Again, welcome, hope you will hang out with us. Hugs, Susie


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/19/2006 2:54 PM (GMT -7)   
hey Black Jack, how are you doing?
just checking in.
erin 

jay5
Regular Member


Date Joined Mar 2005
Total Posts : 144
   Posted 1/20/2006 9:09 AM (GMT -7)   
Erin,Hi this is Jay4 Gracie's grandma,Just wanted to wish you good luck with your new meds!!Your a very spcecial gal,Hope it works out and you can get on with your life,Your too young to let this get you down!!You go girl!!!Thinking about you.Gracie wanted me to tell you to hurry and get well!she is doing much better,doesnt have to go back to hosp.for 2 months,her mom and dad joined a support group,on www.curejm.com and put gracies bio on there,she is in the 6 row i think the thrid one.blonde hair blue yes.she wanted me to tell you.again good luck,we are praying for u!Gracie and Grandma Jay

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 1/20/2006 2:36 PM (GMT -7)   

awe, thank you so so very much.  that means a tremendous amount to me.  i wish you & your Gracie & family nothing but the best in 2006.

GodBless, Take care,

Erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.


Black Jack
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 1/23/2006 9:36 PM (GMT -7)   
Ducky, Erin, straydog, jay4--I've been feeling terrible about not writing back. I never expected to find such good people.  (I hope I haven't missed anyone here.)
WOW! I'm in need of sincere people caring--and that pocket's filled now. I hope that I can return the love and help.
Well, this note will be short, but I have to post so that you know that you've reached me and given me hope and that I haven't turned a cold shoulder.
I'm just so fatigued, in pain, and overwhelmed. Straydog, I've been treated for depression for the past eighteen years, since I turned thirty-nine. Depression became too demanding a lover, a relationship gone bad. We met when I was seven, reeling with grief and disappointment. I've been called a melancholic--a hard-sounding word, but as good as any, I guess. I don't think I will every completely let that lover go. She's got what this brooding man needs.
I'm being perfectly honest.
I've tried to make my avocation my vocation, to borrow Robert Frost's words, since they hit the mark. And I'm a professional poet and writer--a part-time college teacher, as well. I say this so you know which one of me leans on metaphor. Yet, I'm letting myself fall away from that, somewhat. I was caught up in the "power play" literary writers shove each other to get into--though once I squeezed through that door, I experienced the ugliness of ambition and the various crumbling cliffs friendships sit on. I've been "in" with some successful writers, but I made a good run from them. I love literature and seeing students linger at the end of my class. Helping a student smile about learning and finding that amount of self-esteem he or she's been looking for is a blessing upon me whenever I  get to be that kind of teacher.
A long digression..., but I want to let you know a bit about me.
Anyway, I've had all kinds of meds for depression--and one doctor who's an ambitious @#@#@ and had me in a study without informing me, until he nonchalantly slid it by me. I was more stressed out by him and the drugs I was taking, which were developed and used to treat  pyschoses. When I realized what I was into, I stopped seeing him and quit a multitude of drugs without thinking I should step down from them slowly. What a physical and psychological crash. I cried in bed as often as I could get there--and panicked through the day, as only two close friends cared to care and say they saw what I was going through and helped me. But, I shouldn't blame anyone: I've become a master at hiding my various pains, so, really, who could know what I was going through.
What's devastating about the psoriatic arthritis, which is hitting me harder and in more places everyday, as well as the spondylitis, which has me squirming in pain as I sit here typing, is that I'd just recovered, found strength in myself after four years of coming up from that fall, and I quit a nullifying drug I was taking at a high dose--nortryptilene (sp.?)--and for a month before I was pulled under by the four types of arthritis I have, I was feeling pretty well.
Anyway, I have to go now....The spodylitis is a murderous bonus to my p/a. Someone told me that my neck will eventually lean forward. I don't know about that, but I have to say that last week I took three days off from work--and felt guilty--but I couldn't hold my head up and I had about two hours a day of energy. Do any of you have spondylitis? Do you feel what I am from that darned monster....I was paralyzed last week. Actually, I have been for awhile and still am. So much at once. The p/a, I'm finding out is a fiend: I'm getting familiar with sore eyes and blurry vision some days, a kneecap or a leg or an arm swelling up, a new node somewhere, worsening psoriasis--I have a little hole in the skin of my left elbow. I have to give up leaning on my elbow!
There's more, but....I have four syringes of Enbryl in the crisper, but I can't start it until a sudden-onset prostrate infection gets cleared up, and it looks like it will take that refill to clear it. So, after laboring over starting Enbril, coming to a decision that I have to take it--even though I work in a "sick building," now I have to wait.(Isn't it beautiful how we have to swallow such euphemisms--the building is "sick," not me? There's mold spore in the ductwork and the issue is being dodged for about six years now.)
Heck, a long note after all. Too much whining? I just don't know. Supervision at work is being judgmental and I realize I have to watch what I say. An unwanted and unwarranted job change was already tossed at me today. Man! I had good reason to be stressed about going into the office today after being away from work insanity for five days.
What is it about sickness, that it brings out the worst in employers? It's worse than ironic. People you have coffee with at break time, talk about your dreams and dilemnas with, they always manage to stun me with their hardness and ignorant rush to judgment and coldness?
Sickness hurls us into unforeseen dimensions, and without sharing it with others who are suffering too, you can go mad from the absurdity of the collective mind we all live with and by.
Thank you all, and I apologize if I'm off topic here.
Sincerely and with best wishes, Black Jack

Black Jack
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 1/28/2006 9:24 PM (GMT -7)   

Hello, my friends. Erin, I didn't thank you in my last post. I want to apologize to all of you for being a bad correspondent. I am just "dazed and confused."   Tonight I turned up Leonard Cohen's cd FIELD COMMANDER CODY and expected to share his immense sadness. But I broke down. I'm starting to cry now. darn. CaMama, you tuned in on my depression. Well, it and I have been kicking each other around all my life. I've been on many different meds for about twelve years. (I had many years of self-treatment. Thank God my wife is a forgiver. I'd always been able to jump safely from whatever wire I'd been dancing or dying on.  It just kills me: I had this depression behind me for a good month before I came down with p/a. Have I mentioned that I have ankylosis spondilitis? L4 and L5 disks are bulging; cartilage evaporating and pelvis bone deteriorating. As happy as I am with my rheumy, he acknowledges that my neck is stiff in the morning. "Stiff!" Pain and not being able to hold my head up. Last week I took Wed, Thurs. and Fri. off--to have a long weekend, to try to get my footing. I also have tendinitis and a fourth arthritis--I didn't care to remember it.

I can't forgive a great portion of humanity. Leonard Cohen made me think of a duality with his words tonight. He sings of "the broken-hearted many, and the open-hearted few." I don't want to offend anyone and add those who don't belong on my list, but we are those people, no? I've listened to those words at least fifty times, and only tonight did I realize that it is often the "broken-hearted," or, let's say, those who suffer, who are the "open-hearted few." I'm privileged to find all of you. I work with a lot of broken hearts and they are hard as my bones used to be.

This p/a is horrible: one day my a leg swells; often now, I have pain, swelling, and a little trouble seeing; my right forearm is out of its socket and I try to go on as I always have--strong, a good work ethic, but I pay for it. My right index, middle, and ring fingers are stiff and painful. My lower spine hurts so bad tonight that vicadin can't relieve it--the pain has traveled down my left leg all day. I don't know how some of you do it, but I hoard my vicadin and don't take what I need. Doctors just don't like to give me pain killers. Is it because I "put on a happy face" and pretend that I can handle whatever comes my way?  My rheumy refers to "stiffness" and I wonder if he's ever known real pain? Right now, I hurt in many places; I'm fatigued; I'm lonely; I feel as though I aged into a seventy-year-old man who's woken up on a bench under the El in NYC on a mid-January afternoon.  When my father died at thirty-eight of a heart attack, I lost my man, my hero, a love that's irreplacable. He had three brothers, but none of them stepped forward for my brother and sister and I--though Uncle Davy tried, but he was so far gone into alcoholism that he'd lost his job soon after my father died. When my grandmother died, he ended up sleeping on that bench I mentioned above. What a tragedy. My mother, who has suffered a lot of pain in her life, turned bitter very young and she became a true sociopath. That's a story for another time, perhaps never here: you all have your own histories, for sure. But my mother inflicts pain in all its guises. I turned to loving (with an unavoidable undercurrent of rage and self-pity) and I never was able to save her. She lives now as King Midas did, unable to hold any living thing.  Okay....I'm the complainer on this site, aren't I? But I'm scared as hell. I have depression, liver that makes bad cholesterol and I keep the ratio of good and bad in check through meds, since I can only lower the bad (There's no good in me! Laughter.), in order to keep the ratio right.  I mentioned to my supervisor that my eyes sometimes bother me and, and don't know how some people shoot right for your gut, how they seem to do it instinctively, but he said that maybe I should not work on the road, i.e., driving four days a week. But as my wife says, if I were taken off the road, I'd still have to drive from Branford, CT to Hartford and back everyday--a good eighty-six miles. (There, Erin, I didn't forget your question about whether or not I live in the U. K. Well, I have to add this: I'm a bronx boy, projects in the fifties, where I loved friends of any race and religion they happened to be. My first girlfriend was black. We held hands walking to and from kindergarten. Erin, there's nothing like growing up in NYC without prejudice and what a time I had. The sixties and early seventies were youth- and people-friendly years. What's happened? No one has enough and they envy what the other person has. When my first professional chapbook of poems came out, a close friend--a full professor, where I worked as a part-time adjunct in the English dept., actually said he "envied" me. I knew that was the end. The word passed into me like a rattler. When my second chapbook came out, he turned his back on me. I tried to soothe his ego, but I let go, eventually. Let me tell you: there are power circles in every field. I was in with a few groups of big-crap--whoops! I mean "shot" writers, and I learned that too many were businessmen and women; I was into writing for the love of words and communicating feelings and thoughts as one. The only way I can relate to the world. I can't be either emotional or intellectual alone; the two are married in me.   Well, here's a big crisis today, besides the fact that I am constantly thinking about why I can't get enough pain relief from doctors (I have a prostrate infection, by the way, and it did not clear with fourteen days of Levaquin. I'm continuing it for another five days and then in to see the urologist. What the hell will take place at that time. Doctors, doctors, labs, labs, x-rays, x-rays, pain, pain, new symptoms, unsympathetic supervisors, working full time and teaching one course, which I love, but I can't keep up the pace. I am so tired, so stressed out, so wanting to have the time I need to adjust to what I've become, and what's to come. I'm fifty two and I've worked for money since I was thirteen. Always excelled, but the rewards didn't follow--likely, because I'm an individualist. I don't carry "yes" on my lips and I don't like clicks. I like people and Christ and whatever sect and race kind people are; I like to give away whatever I can.  Anyway: I received a call fromt the editor of a national literary magazine. It gets around and the editor has turned it into a well-known literary venue, where top poets publish. So, it has reached its twenty-fifth anniversary (I'm not even sure of the age!) and out of thousands of poets who have published in it, forty of us have been picked to reappear in its anniversary issue and we are further blessed: we are each writing a few paragraphs about our lives as writers. It's really great....I guess. You know, I can't make contact with the editor. I am so far under that I can see letting this used-to-be-golden-opportunity to open myself to others--and have them open up to whomever, as a consequence of my writing....Well, I don't know why I won't allow myself any joy about this, and I don't feel any accomplishment, either. I am afraid that I am going to remain stunned in my new life, and say, "the hell with everything. Nothing means anything to me anymore."   I don't like what's happening to me, and I know that a key to my living again is to leave my full-time job. Yet, I've joyfully invested so much in my children's lives that I'll remain broke into my next incarnation.  I feel like a man in a coma dreaming that the medical establishment, my supervisor, et al,  suddenly realize that I am alive and pleading for humanity under my shroud of outward unconciousness, that my tears have carried my song of lament, and they realize they know the words and the tune--it is in their souls too. And as they look upon me without judgment, without fear, I wake up.   More nonsense, huh? I am glad you are out there, my friends. I fear that, however, that you are becoming sun, and I am rain. Black Jack


Black Jack
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 1/29/2006 10:22 AM (GMT -7)   
mad  Hello everyone, I posted last night, and I don't see any replys. Am I in the right place? Well, I know the answer to that one: When have I ever been?  CaMama, thank you for your kindness--your long post.  I don't know how to be forceful when it comes to asking for pain meds. I have a deep guilt that I am "a bad boy."  I'm always afraid of being judged. So, I internalize various ogres I have contact with, and I let them burn my mind.   Yes, I am in a deep depression. Cried myself back to childhood...and there's more.  My poor wife. She's so positive about life; she doesn't care that her closet is basically empty.  She doesn't know that she is, but she's the most charitable person I've known; she helps everyone in our circles.  Of course, my twenty-year-son and my seventeen-year-old daughter shut themselves away from my wife and I, but I KNOW that I am a bad influence and the more I crave their love, the more they seem to pull away. I don't stop them, but I have noticed that I say and do all the things I hated in adults. I can laugh about it if I'm prone to letting myself find peace any given day. I'm not sleeping the past few months and I'm having nightmares. Oh! My older sister: she always call when I'm not home, pretending she thought I might be. Something is dead in her path toward me. I am the only family member she has contact with, so my wife, Paula, and I always attend functions, whether we want to, or not. We don't want anyone questioning her about why no family members ever show up.  Anyway, I dreamt last night that she called and I told my wife to tell her I'm not home. There's plain truth in some dreams, huh, CaMama.
Have I alienated anyone. If so, it's never been intentionally. I hope to hear from you CaMama, and all the other members who have reached out to me. Blessings all, Black Jack eyes

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 1/29/2006 2:01 PM (GMT -7)   
Hey Black Jack... we are here, just kinda hard to get us sometimes... How often do you work? How many hours a day? You mentioned your kids alienating themselves from you, do they live nearby? What does your wife do, she sounds like an amazing woman... So if the infection in your prostate goes away in 5 days, do you still have to see an urologist? Is that what is holding you up on taking the Enbrel? What about MTX or Plaquenil? Hang in there BlackJack, we are all still pulling for you, you are not the rain, just having a bad day... it will get better... take it an hour at a time.. minute at a time if need be... Hugs to you - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


bunch
New Member


Date Joined Jan 2006
Total Posts : 11
   Posted 1/29/2006 2:02 PM (GMT -7)   
Dear Black Jack

I know that we all need someone to support us and we're all here to support you. We all know the pain and I very well know the depression. I have been diagnosed with clinical depression now for about 8 years now. If you need to talk, I'm here.

hugs

Loretta

Black Jack
Regular Member


Date Joined Jan 2006
Total Posts : 26
   Posted 1/29/2006 6:56 PM (GMT -7)   
eyes  Ducky and bunch, Thank you for posting. I don't feel abandoned now. What a baby I am now? I will post tomorrow and answer some of your questions, Ducky. bunch, thanks for your comraderie with the depression. I've been there so long. My psych/my only other friend, besides Don. He put me in perspective: "There is an attraction to morbidity," he said in conversation one day. What wisdom seeps out of us sometimes. You know, no one can expect another to know your particular pains, but with depression, people see you as they wish. We all have fantasies about what another person is. So, when I'm hurting in my mind and body, as now, I want to run because that "me" is invisible to all. Well, God bless them. I cannot wish them knowledge of pain.   When no one answered my posts I felt like a spider on a dead thread.  Enough. Ducky, I have been in unbelievable pain since yesterday morning. I feel like chewing my back off my body. It feels as if its in a huge steel trap. The pain goes all the way down my left leg, to my foot. And today my knees--both, which are usually sore, felt as though they'd been twisted backwards. My rheumy was compassionate on the phone a few weeks ago, but in the office he warned me of getting "hooked" on pain meds. What's wrong with these people? I hoard the small stash of vicadin I have, but not yesterday and today. But there's not a stitch of relief. Nothing. Aspirin like crazy. Annisette, though the urologist said no liquor. I don't ever have liquor in the house, but I've been needing a shot or two at night. No sleep. I will be open and tell more of my personal life--I owe it to all who have been so good to me. Right now, I need an out of body experience. I've got to get out of this chair and pace, pace, pace, like Macbeth, after he's killed King Duncan.  I don't want to keep complaining to Paula--feeling like I'm repeating "a tale told by an idiot, full of sound and fury, signifying nothing." MacBeth, Shakespeare.  Here I went off again. Peace, Black Jack
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