36yo mom, RA, moving so fast, scared to death

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momwithra
New Member


Date Joined Mar 2007
Total Posts : 13
   Posted 3/3/2007 6:32 PM (GMT -7)   
out of no where, Jan.  Have been in hosp more than out since then.  So scared, 36yo, two boys, on mtx and scheduled to start remicade next week.  The pain is unbelieveable, the meds, so much, can't work, great husband and family thank God.  Nothing seems to help.  Don't know what I'm looking for, maybe just words of encouragement, first time to even think about an online chat.  Just reaching out.  I started a journal, keeping track of my meds and myself, easy to get lost in the pain.  I went to the gym and rode a stationary bike for 5 minutes in tears.  I don't care what I have to do, my family needs me.  Thank you. 

Dx. RA Jan 2007
36yo mom of 2, professional (dr's can have RA too)


marion0323
New Member


Date Joined Feb 2007
Total Posts : 13
   Posted 3/3/2007 7:27 PM (GMT -7)   
hi sorry to hear you hurt so bad, iv'e been in that much pain to. what meds. do they have you on? for me the predison seems to be the best thing for the flare ups. try to rest if possible, if you over do it that just flares it up that much more. hope this helps.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/3/2007 7:35 PM (GMT -7)   
Hey momwithra.. welcome to Healing Well.. so sorry it has to be under these conditions... When did your pain start? Where does it affect you? When did you start MTX? Hang in there, and come here as often as you like... we are a great bunch, and know what you are going through in more ways than one.. take good care, and see you on the boards!

Duck
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


Swanfleweast
Regular Member


Date Joined Nov 2006
Total Posts : 147
   Posted 3/3/2007 11:53 PM (GMT -7)   
momwithra,
I too am sorry for the pain you are in. We all are in some kind of pain wether it be severe or moderate..we still have pain. I remember how scared I was too and still am in some ways but I am learning how to cope with it. There are so many meds out there that can help you. Try not to be afraid(I know better said than done.) Marion0323 is right about the steroids. If it weren't for the steroids I don't know what shape I would be in. That's the very first med. they gave me and it took the pain away tremendously. I am recovering from a very bad flare but the steroids is what is helping me through it. I want to be off of them due to other complications but you gotta do what you gotta do..And also about rest, your body tells you, you need to rest, then rest.
I was actually not able to move very much but after taking them they gave me so much of my life back to me. Ducky is right, this forum is awesome..they give you so much support and they are always here for you. I have got more info and help from the people on this forum than from any of my doctors. They are actually going through the real thing. It's great that you are writing a journal. I do and it really helps because I can't remember everything. I just handed my Rhuemy 8 pages of symptoms and diagnosis..he actually liked it. I really detail mine..like how many hours I sleep..med changes...med reactions, levels of pain and what helps it,... everything. Do you mind my asking, what was it that put you in the hospital? I really hope that they find the right treatment for you and you can get some relief soon.
Many blessings to you,
Lori
Fibro, RA, Pleurisy:11/06, Pericarditis:12/06, Vasculitis in main arterie to the heart:12/06, Myositis on the heart muscle:1/07, Mitral Valve Prolapse:1/07, Heart Murmur:1/07
IBS:1992, Anxiety, Depression, insomnia,
 
 Meds: Serax, Prednisone 10mgs, Prilosec, Hydrocodone/acetaminaphen, Robaxin, Mobic, Nortriptyline, Baby aspirin, Enbrel 
 
Vitamins: Calcium, Magnesium, Folic acid 
 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 3/4/2007 5:19 AM (GMT -7)   
momwithra, u have come to the right place! tongue   i too have never chatted on line before but this place have been God sent for me.  as many others here i am a mom with ra and i can remember the pain being so bad i thought i would never make it through my daily routines. marion was right prednisone was extremely helpful getting through the bad days until the mtx kicked in.  the bad part of it is u gain weight but for me the pain decreased immediately to a functional limit.  i have been on mtx for a year now and for the most part do ok on it.  it was hard for me getting off the prednisone as i hurt badly again and maybe i went off too soon but i am now adjusted to my levels of discomfort and doing well. :-)
 
i know when u r in so much pain it is hard to imagine u will get better but u will! it might take time to build up drugs in ur system and play around with which ones work and which ones dont for ur body, but if u want fast relief get urself some prednisone! skull   the evil wonderdrug
 
i hope u continue to post here as we are all going through the same journey in life and understand your fear and pain all too well. good luck with the treatments. 
 
how r u doing on the mtx?  take care ~*yalinda tongue

momwithra
New Member


Date Joined Mar 2007
Total Posts : 13
   Posted 3/4/2007 3:42 PM (GMT -7)   
Wow, thank you all so much. Just to hear other voices like mine is amazing. Although, i wouldn't wish this on anyone. Okay, prednisone was the first thing my docs did. The pain started at the beginning of Jan. I had a flair about a year ago but we didn't know what it was back then, and it went away in about 4 weeks, this one didn't. This time my doc ran the blood work and there it was. What put me in the hospital (Pain!!) it was out of control. We tried morphine, no help, then demorol and phenagran and IV prednisone and in about 4 days I was able to cope at home. They then tried to taper me down on the prednisone (way too fast) which we think is what landed me back there, pain again, just too much for me to handle, took another 4 days, but i can see it's a learning process of what your body needs and me actually listening. I also am on a pain patch 100/mg and I still have to take 10/325 lortabs throughout the day, I try so hard not to take these. You would think with all this pain stuff i would feel loopy, but no, just pain. Now i'm on 30/day of prednisone and tapering down over the next month to 10 mg where my doc just wants me to stay for a while. I just took my 6th dose of mtx and I am scheduled to start remicade next friday. I am scared of that med, but at the same time i wish it was tomorrow.

This is me in a nutshell.
Dx. RA Jan 2007
36yo mom of 2, professional (dr's can have RA too)


momwithra
New Member


Date Joined Mar 2007
Total Posts : 13
   Posted 3/4/2007 3:47 PM (GMT -7)   
One quick question for you guys out there

Flares?? What is your life like, do they come often, do you have times without pain, do you know when one is comming on? It's hard for me to imagine not being in one. Just thought I'd see what you have experienced. If it's going to be like this from now on i'd better buckle up.

again, thank you soooo much!
Dx. RA Jan 2007
36yo mom of 2, professional (dr's can have RA too)


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 3/5/2007 8:11 AM (GMT -7)   

hi momwithra,

So sorry to hear of the difficulties you've had.  with repsect to your question about flares, i can share my experience with you.  Before my current cocktail of DMARDs (plaquenil, enbrel, mtx), I had little to no relief for the past  year to year and half.  I can relate to what you're feeling, but it does sound like you may have had it a bit worse than I did.  Hang tough until your doctor finds the right combination of meds.  Remicade, although a somewhat scary drug, has been a wonder drug for many.  And you'll have to take it under supervision, so if an allergic reaction happens you'll be in good hands. I believe that Erin has had a few remicade treatments and she can offer you insight on that particular drug.  I was on enbrel for about 9 months.  It is a good drug, but it did take a while for it to actually kick in for me (about 5 months).  The magic for me didn't happen until my rheumy added mtx to the enbrel last summer--within a month or two I was a completely different person.  But it is different for everyone.  Prednisone can be a life-changing drug and can get you through until you can find something more permanent. 

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/6/2007 3:01 AM (GMT -7)   
hey there mom! oh boy, never had plans for this huh?  sad
i am so glad you found HW...whatever one may lack in support & info from physician's and family or friends....i'm sure you'll find here.  it's become quite a tight-knit little family. :-) but, this is what we do...we keep each other hanging on & help through the really rough times.
 
flares??? hmmm....well yeah they stink! you'll know the difference when you hit a flare because the joint pain will feel more acute (maybe more swelling or more throbbing)...more than the usual RA pain. 
in bad flares though...it's like critical to have some prednisone on standby. if you can tolerate it, it's a lifesaver.
prednisone has kept me a number of times from having to go to the ER for RA. (me too...i was racking in 2 or more ER trips per month due to RA pain.)
 
the joint pain i have gets to be almost like intractable pain...downing dilaudids & everything and barely getting a grip on the pain.
 
i'm 26 now & have been being treated for RA since 2002. (@ age 16 i tested + for RA but never got treatment for it...so it got out of control come age 20/21 to the point of disability)
 
i went through Enbrel for 2 years, Humira for 1 year and i just started Remicade in October.  It IS NOT BAD!!!!  not bad at all. depending on how severe you are...you can get infusions every 3 weeks, every 4,5,6 or 8 weeks.  i go every 3 weeks @300mg. {i think today was my 7th or 8th infusion?}  they premedicate with antihistamine and/or a steroid or tylenol.
i never had any infusion reactions except for low BP...of course i'm really immune suppressed, but i take 4 other immunosuppressants along with the Remicade.
 
the docs & nurses keep good tabs on ya with labs & appts and all...
starting aggressive therapy for RA when it's progressing rapidly is so important.  i wish i would have done this when i was 18!  i would have perhaps had my career if i had! (nursing) but, as is life.
i can't work either due to RA (struggling to get SSDI since 2004) ...can't be on my legs for more than a few minutes. and a lot of mobility problems. so life now is a day to day thing.  i try to shower, dress, and sometimes that's all i can do.  but you accomplish what you can.  believe me, it takes a LONG time to adjust to a change like this.  i went from working 2 jobs plus college, AND a social life AND running to basically bed rest & trying to do 2 or 3 tasks a day if i can.
 
adjusting, coping & learning to live with this is an ongoing thing...like so many have already said..it's a journey.
 
i'm glad you have a good hubby. it's a blessing to have a great partner...my honey is my rock.
 
so what's your thoughts on Remicade?
 
so nice to meet you, write back soon!
you will get through this.
erin


Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 

Post Edited (erin.K) : 3/6/2007 3:13:45 AM (GMT-7)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/6/2007 3:15 AM (GMT -7)   
by the way...everyone who has posted to this thread...YOU ROCK, what wonderful support we have here.
it's a beautiful thing.
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 3/6/2007 9:07 AM (GMT -7)   
Hang in there Momwithra!

It will get better, all you have to do is never give up.
My story, I went from a very athletic 40 something, who could ride my bike in the Colorado mountains all day long, to barely able to walk up or down stairs. That was about 2.5 years ago.
Now, with the help of a couple of good docs, Prednisone, MTX and Enbrel, I am able to ride all day long again.

It was hard for a while, probably 6-8 months, while I was being diagnosed and treated, but my life is pretty normal, as normal as it can be and still give myself shots every week. The physical thing was not the toughest part for me, I'm kind-of used to that, but emotionally, I had a hard time, a really hard time ... and still do on occasion.

Your docs are really important in this and they want to help, but I'm a personal responsibility kind-of-guy, you have to do whatever you can do as well. At a minimum, you should be on the docs to help you understand (unless you already have a medical background) what is happening and what ALL your options are, question them, learn what you can do on your own, but just don't give up!

Hopping off my soapbox, it really does suck, everybody here knows it. Some folks are still climbing the hill, I'ld like to think of myself as being at the plateau. But at least once a week, I still feel sorry for myself, then I beat myself up for being a big baby, then I'm OK again. You are the best asset you have in this fight.

still trying to make peace with my RA ... Craig

momwithra
New Member


Date Joined Mar 2007
Total Posts : 13
   Posted 3/7/2007 8:15 PM (GMT -7)   
:-)  thank you Erin, Craig and Elcamino.  I just read your notes to my husband, I am in the right place, I hope I am able to help others as you are helping me.  It sounds like I need to just accept my need for the pain meds and concentrate on rest and exercise.  I have made it on the exercise bike two times for 10 minutes.  No goals that I can't reach, trying to ride 10 min every other day, of course you all know this is so much more than 10 minutes, it's the getting there and back...shower, half a days work.
 
Craig, you'r story, very inspiring and real at the same time.  So sincere, I guess we need it to be okay to feel sorry for ourselves every now and then, just not drown in it. 
 
Okay, I get to start remicade friday morning and I can't wait!  My doc gave me a script of prednisone 100# 5mg just so I always have it on hand and can self dose up if need be, so it sounds like I'm on the right track.  I do think i have a good team of docs. 
 
I went to a nuritionist yesterday, thought i'd pass along what he suggested for me:
EPA-DHA 6:1 2000mg/day, the effects of NSaid's counteract this somewhat, blocking both the good and the bad prostoglandins, which is where the cardiovascular complications come in heavily,  but every little bit helps.
Kaprex Al (combo of vit D 500, zinc, and selenium) 3/day.  He suggested a 25 hydroxy vitamin D3 blood test.  Evidently a percentage of you and I are greately lacking in that area and it is one thing we can suppliment. 
Pro-Biotics (the good bacteria for the gut)
Ultra-inflamx (a anti-inflam drink) Not for the rest of my life, but helpful in the flares.
 
All of these are Metagenics products, I know there are a million different brands.  This one you'll have to get from the pharmacist (some pharmacies have it behind the counter) or a dr's office.  Out of all of the reps and brands that came my way while i was treating patients, this company seemed to be well policed, and ethical.  It at least is one of a handfull that "self police" for the validity of their contents.  Sorry, that's the Chiro in me, sometimes it comes out. Really, I just can't have a diet of hot fudge sundae's, which the steroiods sure are not helping with.  At some point it's just like Craig said, taking responsibility and not giving up. 
 
I thought he was reasonable in not making any crazy claims, just try to reduce the inflammation in my body and give my body as much immune support as possible in conjunction with my medical scripts and treatment.
 
Me and my hubby have a trip to cancun scheduled in 4 weeks (has been scheduled for a very long time) I'm going to go and I'm going to feel as good as possible, even if it's feeling good in my mind!
 
You know today has been just one of those bad pain days that you wish wouldn't happen and I wasn't going to even look on the computer, but I am glad i did. 
 
I don't want to just pull from others and not give back, so if I can help anyone at all please let me!
 
I'll let you guys know how Friday goes!
 
Dx. RA Jan 2007
36yo mom of 2, professional (dr's can have RA too)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/7/2007 8:42 PM (GMT -7)   
yeah  yea!!!!!! yeah friday's your BIG DAY!!!  i was so excited my 1st Remicade Tx.
 
ooh yeah thnks for the info about that ImunX drink/supplement...wow, it's an antiinflammatory?
 
Craig is super...we all love em'!
 
you know...those small goals are important.  nowadays i feel "accomplished" if i can successfully shower every day.  sounds pathetic, but there was a long time when i couldn't even do that! (when the RA goes through a particularly rough phase for me...even a bath is out of the question)  so i am happy with what i am ABLE to do.
 
i'm so glad you found a great place here!
 
your trip will be great.  it'll make you feel even better!
 
take care
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


zeekman
Regular Member


Date Joined Mar 2007
Total Posts : 39
   Posted 3/11/2007 11:24 PM (GMT -7)   
Reading this thread made me realize how strong you all are. Before I had any symptoms I thought I was bulletproof...now I realize that anyone can be afflicited but it takes a STRONG MIND to get through it. You are all warriors in my opinion.

magsmom
New Member


Date Joined Mar 2007
Total Posts : 9
   Posted 3/22/2007 5:58 PM (GMT -7)   
I got a diagnosis of RA in January.  At first, mine was moving so fast that I was really scared.  I've been on Methotrexate and Folic Acid for about 2 months.  I still have pain and morning stiffness and swelling that does not go away, but my condition seems somewhat stable.  At least, it isn't getting worse.  This week, I am going to Methotrexate injections and am doubling the Folic acid to help deal with the incredible fatigue I have after getting my once/week dose. I am so sorry that YOU are having such a horrible time.  At first, my shoulders and wrists just throbbed at night like an abcessed tooth.  I felt panicky and worried that I'd have to quit work.  After reading many of these posts, it seems that some more surprises might be in my future.
 
For today, I am going to try to remain hopeful that my symptoms can be subdued.  At first, I felt upset that I had to give up my 5 spin class/week regimen.  I thought I'd get on medication and get right back to life as usual.  Now, I'm hoping to stay out of a motorized scooter for my future mobility.  My message to you is HANG IN THERE!  I really think your doctors can find something that will get your symptoms under control.  My good friend was just diagnosed with undifferentiated connective tissue disease in June and she was hospitalized several times with EXTREME symptoms.  She now takes Plaquenil and AZ-something and is starting to get some relief and has started walking and feeling hopeful about her situation again.  I hope this helps!

momwithra
New Member


Date Joined Mar 2007
Total Posts : 13
   Posted 3/24/2007 1:53 PM (GMT -7)   
Hi everyone! 
 
I ended up in the hospital again sad The last wrote, i was about to get my first Remicade tx.  I did, but that night it was the ER and then admitted for 4 days with a morphine pump.  I do have to say that for the first time since Jan I had some pain relief and I almost felt guilty for it.  The ER was not due to the Remicade the cycle had started the day before, I just held off because I was determined not to miss that first treatment.  The third time in the hospital in two months, my kids are scared, I was trying so hard to keep that fear from them. 
 
Now, I think I'm doing a little better (don't say that too loud)  I had my second infusion two days ago.  It has to turn around, I'm sure of that, and I really missed you guys. 
 
My pain patches are at 200mg now and I'm on morphine instant release 45mg every 3 hours.  But, I am able to function, get up and around even took the kids to the movies today.  A week ago I couldn't even drive. 
 
How is everyone doing?  I had my first experience of a "front" coming through and it corresponding to a really bad day, have you guys found this to hold true at all, or was it just a bad day?
Dx. RA Jan 2007
36yo mom of 2, professional (dr's can have RA too)


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 3/24/2007 3:58 PM (GMT -7)   
Hey there momwithra.. good to hear from you.. sorry you had a stint with the ER, those are never fun.. I am glad though that you are finally getting some relief, and that you are able to do more things now, good for you! Oh yes, I can feel a storm front coming in a couple days out... I am very much in tune with the weather! :)
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/25/2007 10:03 AM (GMT -7)   
:-)  Hi mom!
Missed you too!
I don't know how much this will console you if at all...because you are much different since I feel you have a ton of worry & concern for your children (and I don't have children but I'm sure I'de be the same way); due to RA I have landed in the ER & have had numerous admissions as well.  In the last 7 years I average at least 9 to 10 ER visits per year from RA & complications & joint pain and yeah they did admit me for several days too.
 
It's a "chronic" condidtion and I felt so silly being there because I felt it was an emergency per say & it tok me a while to understand (and from the ER doc preaching it to me) that although RA is a chronic disease...there will be times where emergency medicine & hospitalization are necessary.
 
Those wrods put me at a little peace.
 
So now I'm kinda used to the drill you know?....severe joint pain, flares...ER, get a bag of steroids & pain meds & if need be gotta stay a few days till it's manageable at home.  And as the years have gone by I get less and less upset about it.
 
Well Mom...you rest well for now.  I just wanted you to know that I my sympathies were with you.
 
(((((((((((((hugs))))))))))))))))))
erin
ps...yeah, dampness, storm fronts, rain, snow....the joints swell & throb more here as well.
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 3/25/2007 11:03 AM (GMT -7)   
Hi there mom,
 
Oh boy do I know how you feel!! I'm so sorry to hear you are hurting.  Gosh it is frustrating isn't it? For me, I just had a really bad cold and caugh last year, and a couple of months later, my knees and hands started hurting terribly, so I went in to see my pcp, and he thought maybe I had lyme disease or something like that.  Ran different tests that would have those symptoms, such as RA, lyme, even Lupus, all negative.  Finally gave me Ibuprofen and a referral to a Rheumatalogist.  Now 16 months later, I have gone through just about every NSAID, plaquenil, Sulfasalazine, a couple of Medrol dose packs and finally back to Plaquenil.
 
I had my checkup yesterday, and I am in an awful flare, where my hips and knees hurt so bad, I had  two darvacets and they didn't even help with the pain.. I think finally, my rheumy will do something even though I have tested negative on my RA tests twice now.  Wrong!!  Three weeks ago, we decided to try the sulfasalazine but it made me sick, so he tells me my options are to just be med free for awhile,(this is how I feel med free!) or go back to the plaquenil, with a small dose of mtx to start out sad    I tell him, I hurt so bad that I can hardly sit or stand..and that I drive so much to get my children back and forth to school and I also attend classes.  There are days that I drive 100 miles. .finally I leave with a prescription for a medrol dose pack, and will start once again with the plaquenil.
  
Seriously if I had a positive RA results, I think I would have better luck eyes and he always asks about my hands, well my knuckles are much larger than they were a year ago and the swelling is always gone by the time I get to his office.  I guess I don't have the outward signs he seems to be looking for.  But my official diagnosis is inflamation unspecified.
 
I think I am going to go back to my pcp and tell him my hips are hurting the way they are and there is something wrong.  I just can't stand it any longer sad
 
I told him my hair was coming out when I wash my hair, and he looked alarm but didn't know what to say to that one, I guess he just thought I was having quite a flare. 
 
I am so glad you have a supportive family, this is key when you have something like RA.  Also, if you can get the right medications to control your pain, that is fantastic!  There are so many helpful people on here, who have been through this.  Hang in there, you are not alone!
 
I read a few of the other postings that you were able to get pain relief and that is good to hear.  It is so hard when you have children/family and you have to push yourself when you hurt so much.  I think it has gotten old for my family, so often I just try to pretend I don't hurt, at least when they are around.
 
Big hugs and hang in there!

cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 3/25/2007 6:26 PM (GMT -7)   
I hate the ER, sorry you had to go through that.
But, it does sound like things are looking up, always go with the good stuff.

stay tough ... Craig

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 3/25/2007 9:54 PM (GMT -7)   
Welcome,glade to have you so sorry that you have had to deal with all of this pain.I know I can relate as to where you are coming from and being in that much pain is just plain awful.I'm so glade that your pain meds are helping to keep the pain to a level that you function.I would like to ask a few questions if you son't mind.What brand is the pain patches that you are on?Dose the instant morphine work better than the demerol?I'm on oxycotin and i'm pain patches mine are 50's and mine is the generice brand and the maker of mine is Sandoz.The last time I was on the pain patches they were the name brand not the generice.I have noticed with ones i have now i break out bad but with name brand it did not do me this way.Are you having any problems with you pain patches?
Curley
.........
 


momwithra
New Member


Date Joined Mar 2007
Total Posts : 13
   Posted 4/5/2007 11:48 AM (GMT -7)   

I've missed everyone, how is everyone doing!!??  It seems that I find myself thinking of you guys when I'm at my worst and that's really not what we are all about.  So, today, is a good day and I just wanted to say Hi.  There is a light, in the middle of all of the tears, I just know it!

My 2nd Remicade started to make a difference (I think), went to the doc yesterday and he sent me straight to the IV and doubled the dose. So I'm on twice the dose for my weight and every 4 weeks instead of 8.  I have doc's that are being very aggressive and I am greatfull for that.  He doesn't want me to crash and end up back in the hospital.  The patches are generic for duragesic they are fentelyl I'm on 200mg now, (went up) and 45mg of instant release morphine every 3 hours, this seems to be holding me steady. On 40mg pred daily going down by 5mg a week, once I get to 20mg we're going to stay there for a while.  Every time I go under 20 I end up in the hospital.  I'm on my 11th week of MTX.  Maybe things are coming together.  The pain is around a 5 most of the time, I know that's high, but how greatfull I am to not be at an 8-9. 
 
Starting to look at the good, not the bad all of the time.
 
Guess what, I am going to Cancun with my husband for a week, we leave tomorrow.  My docs have been working so hard to get me to the point that I felt good enough to go.  The airport and resorts are ready to transport me with carts etc.. and I'm going to do nothing but lay on the beach!  I'll have a vergin umbrella drink and read a good book for everyone!! 
 
Oh, for those that are bored.  I don't know about you, but I'm used to having a career.  I own and opperate no less than 2 businesses at a time.  Well, that has all stopped, (maybe that's why I'm here in the first place), anyways, I went searching for something to fill my time and my soul.  Polymer Clay.  I know it sounds corny, but there's a little machine that works the clay for you so your hands don't hurt, and I've actually made some pretty cool art for the home.  (the word art is used loosely).  Point is, it's helpful to have something to "put yourself into"
 
take good care and I'll write when I get back.  I'm going to do my best to stay out of the mexican hospitals!
Dx. RA Jan 2007
36yo mom of 2, professional (dr's can have RA too)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/5/2007 12:36 PM (GMT -7)   
You made my day Mom!
Have fun!
Be sure to hit Senor Frogs!
(i'm sure my picture is on the wall....LOL...oh the fun i had there! LOL)
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 4/6/2007 8:11 PM (GMT -7)   
Glad to hear your going on your trip!!! I went to Mexico when I was having problems and the change of scene helped. I got a wheel chair at the airport in Phoenix because the gates are so far away. It is good to do normal stuff. The clay is a great idea. Art ( which is not limited to oil painting) is great it gives you a space to clear your mind. There is a zen component to it. I do fiber art and make art quilts. It lowers my stress level. Have fun on your vacation dearie.......
Harley Diva
 
....RA, HPT,  drugs: MTX Enbrel, bp meds,folic acid


nannamc
New Member


Date Joined Apr 2007
Total Posts : 13
   Posted 4/8/2007 4:23 PM (GMT -7)   
hi all i have just found this site i cant find a site like this in aussie land i am 68yrs young and have jsut been told i have ra i have been in pain for the last year but put it downh to age related but this last week i was crying in agony with my knees nothing i took seem to work or take away the pain so had xrays blood test and the lot now ben told i have to give up my tap dancing which i have done for many years but so be it i cannot get in to the reumatoligist until27th june so i am living on pain killers at the moment tramadol and osteopanadol but not eally atken the pain away i hope some of you will take me into your forums and make me welcome as i need al the info i can get all for now take care
nannamc

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