Just Dx with RA

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sweetpea66
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 11/21/2005 9:26 PM (GMT -7)   
 Hi!
 
 I am new to this forum.  I have been under the Fibromyalgia forum under healingwell and found it quite helpful as I was diagnosed in May 2005 with it.  I was just told Friday after a series of tests and two MRI's that I am in the early stages of RA. So I am very interested in getting advice and sharing my health issues with others regarding the RA. 
 
I have only spoke with my Rheumatolgoist over the phone and have my next appointment scheduled for the beginning of December to discuss his plan.  He mentioned steroid injections and a new drug to help slow the RA down.
 
My first question to him is whether he still thinks I have Fibro. All my blood work for RA came back negative and yet the MRI shows joint problems.  I just had a complete body bone scan done in May and no signs of arthritis showed up. One little spot by my foot/ankle may have some inflammation was all that test showed.
 
I had been completely healthy until about 1 1/2 yrs ago when I went through a hard divorce. I injured a toe and and spread to complete foot pain to calve pain-tendonitis.  I had been through 2 rounds of physical therapy, a foot cast, a brace on each foot, to a boot on each foot, to computer made orthodics( I can only wear tennis shoes). I then began getting fatigue, insomnia, stiffness around the neck, shoulder,elbow, wrists, hands, muscle pain in different areas, to not being able to sleep at all, anxiety, depression and now fingers are deforming. Also skin flare on scalp. My rheumatologist has been super!  He really has listened to me and taken me seriously and acted quickly on everything! It has been a long haul!! Lots of confusion, unanswered questions, lots of blood work, tests, $$$$$ because of lack of insurance, etc.  I now feel better knowing I have more of an explanation for my health, but am wondering if the Fibro would still exist?  I have done some research on RA and am finding alot of the symptoms from Fibro match RA.  This has got to be very challenging for RA's! Especially when blood work comes back normal. I think it says so much when you have a Rheumy that will really listen to you and not just think it's all in your head!
 
Please, anyone that has any comments or similarities to mine, I would appreciate comments.
 
Thanks,
Sweetpea 


Dx: Chronic Pain for 2 yrs, FMS May 2005, RA Nov 2005
Meds: Lunesta 3mg, Effexor XR 75mg, Aciphex 20mg, Prednisone 10mg,
         Glucosomine/Chondroitin/MSM 1500mg, sometimes Darvacet 650mg
         3 x daily or Mobic 15mg daily 

Post Edited (sweetpea66) : 11/21/2005 9:54:04 PM (GMT-7)


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/22/2005 5:46 AM (GMT -7)   

Hey SweetPea!

Welcome to Healing Well.. your story sounds oh so familiar! :-) Do you have Psoriasis by any chance?  The reason why I ask is 'cause your story sound a lot like mine, with the exception of the fact that I have psoriasis.  I didn't have any type of arthritis until about 2 1/2 years ago.  I was divorced, but going through a very bitter and ugly custody battle with my ex... I wore some shoes that cramped up my toes, and went to the dr. for it and was told it was a hammer toe... but then the pain got worse and spread to all my other toes... then it went into my ankles... knees... calf pain.. fingers... wrist... and back... I didn't realize they were all related, just thought I was falling apart!  tongue All my bloodwork showed negative for EVERYTHING... bone scans showed the hot spots in my joints, but that was all.. and MRI didn't show anything... It wasn't until I went to a rheumy and he asked me about my psoriasis that by process of elimination he said... "You have Psoriatic Arthritis!"  And then he explained to me that all the pain I have been having was from the Arthritis... I was sooooo relieved! tongue

There are other members here that have stories similar to yours also that have RA... and RA as well as PA...

Good luck to you and please keep posting with us, always nice to have a new "face"!  Good luck to you and let us know how you are doing! - 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


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/23/2005 1:45 PM (GMT -7)   
Welcome SweetPea!
 
I wish you good luck @ your rheummy appointment.  Along with RA and other autoimmune disorders and illnesses, the fibro will/can still exist.  You may find, that when your arthritis flares, the fibro may get worse.
 
The frustrating thing with rheumatics, is that it is very much an art!  People will present with ALL OF THE SYMPTOMS physically, yet bloodwork comes up negative.  Some may have all the positive bloodworks and yet there physical symptoms are not that bad!  And some are a happy medium...well, who the heck is a HAPPY arthritic anywhoo??  LOL.
 
The great thing about it is, docs are very eager to  treat RA with meds like Enbrel, Humira, Remicade early so that the disease lessens its chances of becoming too bad!  Which is wonderful. The injections are simple and people adjust to the freakiness of sticking themselves pretty quick!  We have shootin' up parties here when one of us goes on an injectable for the first time!   yeah   LOL.  Early treatment and findings is key.
 
I have been on both Enbrel and Humira and also all of the Cox 2's/NSAIDs  and yes...the dreaded   devil PREDNISONE devil .
Steroids are life savers in acute flares.  The steroid injections are helpful to many people.  I've had them into the knee joints and shoulders.  Painful yes, but short and worth it.  Just be sure to keep off your legs a while, they'll be a little sore.  The intramuscular shots are great too.
 
You may already know that with dealing with arthritis, it is a trial and error practice sometimes.  Sometimes even doctors do not know what to do sometimes!  Patience is a must, especially since you have a lot of symptoms going on.
 
Look forward to talking with you Sweetpea!
Also, I want to add that there are many theories that are pretty much proven that in woman especially, going through divorce, tragedy and pregnancy can trigger autoimmune diseases such as RA and others.
 
Write back soon to let us know how you're doing!
Sincerely,
Erin 

sweetpea66
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 11/24/2005 9:40 PM (GMT -7)   

Hi Erin & Duck!

Thanks for your replies! I can't imagine life without these forum/chats to be able to discuss our health issues with others that are sharing same life experiences.

about my RA, I haven't yet spoke personally again with my Rheumy since his phone call on the results of the MRI, but I do want to ask him if he thinks it could be Psoriatic Arthritis because of the unexplained scalp lesions I have been battling with. I am now 39, but when I was just 17/18 yrs old I had a bad case on my forearms and fingers and was treated with a Kenolog cream and it cleared up within 6 months.  I haven't had much luck with the scalp and I think they are related. My dermatologist I saw 2 yrs ago tried everything he could think of to help and no drug helped. He simply labeled it a dermatitus. When my Rheumy initially looked at it on my scalp in May he sent me back to my dermatologist for a skin biopsy to check for Lupus. Again, it was negative for Lupus and again labeled  a dermatitus. So I will raise the question once again now that the results of MRI have been RA.  Could you maybe tell me a little more about the Psoriatic Arthritis?

Also Erin, what was your experience on the Prednisone?  I had a tough time at first.  I experienced an "inside itching" under the skin and a burning feeling.  I called the Pharmacist and they told me that it was a side effect and to try a baby asprin about a 1/2 hour before taking it.  That seemed to help.  I then forgot the asprin one day and never noticed the side effect again and so kept taking it without asprin.  Now after 2 1/2 weeks I am occassionally feeling it again but not as bad. It has helped with the pain and since I have no prescription coverage it is an inexpensive drug to be on.  $8.00 month for 1 10mg pill a day.  I do take it with the ch/msm and that is probably helping too. What is Prednisone exactly? Steroid? I have read so much on all the drugs, my head is full of the FIBRO FOG these days and I can't keep it all straight.  What really slows the joint damage down? What would the injections be for exactly?  I am so scared of all of this.  I want to be sure I can fully understand everthing I'm taking and the disease itself.

Thanks,

 

Sweetpea


Dx: Chronic Pain for 2 yrs, FMS May 2005, RA Nov 2005
Meds: Lunesta 3mg, Effexor XR 75mg, Aciphex 20mg, Prednisone 10mg,
         Glucosomine/Chondroitin/MSM 1500mg, sometimes Darvacet 650mg
         3 x daily or Mobic 15mg daily 


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 11/24/2005 10:14 PM (GMT -7)   
My husbands Dr says he has RA,but he wasn't tested for it.Larry rarely complains of pain.I don't know how he could say he has RA without tests.
SnowyLynne


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/25/2005 12:31 PM (GMT -7)   
Hey there Sweetpea,
 
My experience on prednisone! confused YIKES! skull LOL.  Tee hee hee...I hate to take it, but as you know too, it works well.  When my joints  (especially knees & elbows) are so bad and I exhaust all other means, I take 10mg 20mg or 40mg of pred depending on how painful.  On it though, I'm restless, can't sleep for like 4 days because it keeps me up all night, I get fluid retention, acne, and my legs get weak and the knee socket feels wobbly.  So when I absoluetley have to... I do.  It helps with my Crohns as well when I get partial blockages.
 
"What is prednisone?"   Used orally via pills, prednisone acts systemically to control A CAST OF A THOUSAND CHARACTERS! tongue For inflammation, neoplasms, asthma, allergy, autoimmune disorders, RA, Lupus, Crohns and so many I can't even finish!  It really is a wonderful antiinflammatory.
It suppresses inflammation like an NSAID does, but unlike an NSAID, pred is yes, a steroid.
 
People sometimes get freaked out by having to go on prednisone and steroids because of the side effects...BUT, one must weigh his/her options.  Prednisone used very long term and high doses carries MORE reactions than occassional use of it.  If you have pain and a disease, prednisone is very helpful when used properly.  But like with anything else...years of being on a med, some folks do develop a lot of weight gain, a "moon face" or "buffalo hump" and kidney problems.
 
The itching you experienced could have maybe been caused by the pred.  It does cause the skin to become thin and fragile, so maybe yours became more sensitive.  I feel like I want to CRAWL OUT OF MY SKIN! when on pred! tongue I feel cooky! get emotional!  feel wired!  Great huh???  LOL.
Since you said mentioned your scalp and skin problems, maybe the itching was related to whatever was going on with the dermatitis??  Possible. 
 
The steroid injections into the muscle work very rapidly and provide quicker relief...you'de get that in the docs office.  The shot into the joint the rheummy has to do.  It's very uncomfortable, but tolerable and helps relieve the swelling and pain in the joint.  I have had that done too.
 
Oh Sweetpea, we're here for you!
Ducky, I am sure, will fill you in on psoriatic arthritis.  She can provide you better with more personal experience since she lives with PA.
 
To actually slow and help joint destruction from RA, the TNF drugs are ideal (Enbrel, Humira, Remicade).  And you will come to find out that a combo of meds are needed sometimes to get a grip on this disease (like Immuran, methotexate, plaquenil, Arthrotec).
 
We are so happy to have you here @ HW!  Very interested in hearing and sharing with you Pea!  (that's my cats name!  Philapee, I call her Pea!)
Talk to you later,
Erin 

Post Edited (erin kachmar) : 11/25/2005 3:00:24 PM (GMT-7)


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/25/2005 4:23 PM (GMT -7)   
Hey SweatPea!
 
I was on Prednisone for a while also, however, it was for Grave's Disease (Hyperthyroidism)... I was on extremely high doses of it for 6 months and I am a lucky recipient of the weight gain, moon face, buffalo hump and now it seems kidney problems... I haven't been on it since, and I hope I do not have to go back on it...
 
Anyways - you said that you have scalp lesions, as well as lesions on your arms and fingers... To me, it sounds like you have Psoriasis.. and if you do, then you probably have Psoriatic Arthritis... For your scalp, I recommend getting a tar shampoo.  I have found that Pentrax Coal Tar Shampoo works wonders.  It doesn't smell too good, but for the psoriasis, it knocks it out... Also, if you can get temovate cream, that may help with the lesions elsewhere on your body or along your hairline... I have psoriasis on my hairline and I put the temovate cream on it, then within a couple of days, it's gone... You may have to go through your doctor to get it since it is a steriodal ointment.
 
With PA, for a rheumy to diagnose it, you basically have to have all the signs of regular arthritis, i.e. inflammed joints, pain, swelling, limited mobility but show up negative on all tests.  All my bloodwork was normal and have had MRIs as well as bonescans... So basically since it doesn't show up as anything else, by process of elimination, you have PA... A big indicator is if you have psoriasis.  I went to a podiatrist for the pain in my toes and feet and he was clueless as to what my problems were until he realized I has psoriasis.. He then sent me to a rheumy and within 5 minutes the rheumy confirmed my suspicions...
 
PA normally shows up in fingers, toes, wrists, ankles and your spine... Also, whatever digits have the arthritis in the will have a "sausage like" appearance... This is called dactylitis... My toes used to be so fat and swollen I had to go up 2 sizes in shoes!
 
I got this off of the arthritis website:
 
Psoriatic arthritis is a condition that causes swelling and pain in and around the joints. It can affect a number of joints including the fingers, wrists, toes, knees, ankles, elbows and shoulder joints, the spine and joints in the lower back (called sacroiliac joints). Psoriatic arthritis also affects tissues surrounding the joints including tendons and ligaments. It may cause a swelling of the whole digit called “sausage” finger or toe. There is also skin inflammation, particularly on the elbows, knees and scalp. Psoriatic arthritis is linked to psoriasis, a disorder causing areas of the skin to become inflamed and be covered with silvery or grey scales.
 
I was on steriod injections for a while, but they didn't work for me.  I have also been on Mobic, Feldene and Voltaren and those didn't work either... So now I am on Enbrel and I am doing so much better.
 
I don't know if I have helped you at all, if you have any more questions, please let me know and I'll try and answer them the best you can.  You are going to a rheumy in December right?  Let us know what they say!  I am curious as to what the diagnosis may be.  It is possible that you can have RA as well as PA... I wish you the best of luck, and like I said, if you need more info, I am always here.. best wishes 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


sweetpea66
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 11/29/2005 7:47 PM (GMT -7)   
Erin & Duck,

Thank you SO MUCH for the info. I really can't wait to go back to my Rheumy in December to discuss options. It is nice to have some other info to go on when speaking to him regarding this. I will keep you posted.

Sweetpea
Dx: Chronic Pain for 2 yrs, FMS May 2005, RA Nov 2005
Meds: Lunesta 3mg, Effexor XR 75mg, Aciphex 20mg, Prednisone 10mg,
         Glucosomine/Chondroitin/MSM 1500mg, sometimes Darvacet 650mg
         3 x daily or Mobic 15mg daily 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/30/2005 5:27 AM (GMT -7)   
No problem Sweetpea!
 
The more options the better, and the more info to discuss with the doc the better too.
 
I wish you the best and I hope you find the right meds, a great doc, and are able to avoid all the hardships that can come along with going through this.
Never give up.  Fight for your body and your health.
When is your appointment?
Take care
 
Erin

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/30/2005 7:23 AM (GMT -7)   
Glad we could be of help! Please do let us know what your rheumy says!
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


sweetpea66
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 12/6/2005 9:49 PM (GMT -7)   
Erin & Duck,

Hi! My appointment with my Rheumy is tomorrow-Wednesday. This has been an exhausting 1 1/2 - 2 yrs of finally getting my health problems diagnosed. So I am looking forward to getting a plan started. I am a little bit full of anxiety because I did a little drug research regarding some drugs I thought he may offer that are popular and am very disappointed at the side effects. It seems NSAIDS, COX-2, oral corticosteroids are merely inflammation contollers only with minimal side effects and they don't help with slowing the joint damage down. Then antirheumatic drugs as methotrexate or leflunomide are good for both inflammation & joint dmg, but side effects are MAY CAUSE CANCER OR LUEKEMIA! Then the biologic agents that are new like etanercept (enbrel),infliximab(Remicade),adalimumab(Humira), anakinra etc help with both infl & joint dmg, but side effects are SUFFER OF CANCER(LYMPHOMA) & RISK OF TUBERCULOSIS! What do you think??
How depressing!!

Sweetpea
Dx: Chronic Pain for 2 yrs, FMS May 2005, RA Nov 2005
Meds: Lunesta 3mg, Effexor XR 75mg, Aciphex 20mg, Prednisone 10mg,
         Glucosomine/Chondroitin/MSM 1500mg, sometimes Darvacet 650mg
         3 x daily or Mobic 15mg daily 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/7/2005 3:55 AM (GMT -7)   
Goodmorning Sweetpea,
 
What a relief to get started huh?  Believe me, be thankful that it took ONLY 1 or 2 years!  Many folks have to go through several several years before getting a diagnoses and starting treatment....but ANY time suffering is TOO long in my book, so congratulations!  Today is a big day for you.
 
Totally normal to be nervous, anxious and apprehensive.  Have ya got all your questions and reservations written down?  I wish you the very very best!
 
Well, with the meds....you have to weigh your options and priorities.  Every medication has it's downfalls.  Look at Tylenol for example....that's the leading deadly medication and it's over the counter!  People, especially the very elderly die of liver failure and toxicity due to tylenol overdose without knowing it, by swallowing too many pills and mis-use of the drug.  But we only hear about that statistic evry now and then. 
 
Yes, there are written and documented undesirable side effects that could possibly happen while on antirheumatics/DMARDs and TNF drugs.  Are they likely?  Not particularly...do they happen?....I'm sure they do and have occured in some people.  With the Lymphoma thing....it is theorized that people with RA and autoimmune disease in general are at a higher risk for lymphoma with or without EVER being on say Humira or Enbrel or MTX.
 
How badly is the arthritis effecting your life?  How bad is the pain?
Those are the questions that will guide you in your decisions.  How will you feel 6 months from now if you choose to not go on a med? 
 
I thing everyone is freaked out by the initial scare of things, many times it's likea double edged sword!
Personally, I have been on all Cox2s and NSAIDs for treatment of RA...and the RA just continued to progress (and plus they caused me to bleed internally).  I was on Enbrel and had real good success with it after 2 months and was able to do many everyday things I had not been able to accomplish, and it controlled the joint pain a bit.  On Humira now in high doses but it looks like I need even more aggressive treatment to control the RA.
Early treatment is really the best, it may prevent you from having to go through a mess of therapies in the future. 
I would say that the major thing to be concerned about is not the lymphoma but keeping an eye on your white blood cells.  The meds can lower them.
Keep all your regular appointments and update TB tests and Xrays and bloodworks....the minute something goes astray, you'll know, and then the doc can tweak your meds.
 
You will make the right decisions.  Just listen to your instinct and your body.  And remmeber, you can always "sleep on it"!  If you don't feel comfortable making a decision right then....the doc can hold his script pad for a day so you can think about it.  Don't be pressured.  You will do fine.  I'm confident in you!
 
The very best to you....we're all here rooting for you!
Good luck
Erin

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 12/7/2005 6:30 AM (GMT -7)   
Yeah, what Erin said! :) Good luck to you, let us know what your rheumy says today... I was very leary about starting Enbrel myself, but I tell you, it has been a Godsend, so like Erin said, you've gotta weigh the options. Bust of luck to you and let us know! - 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


sweetpea66
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 12/7/2005 7:02 PM (GMT -7)   
Well, I had my appointment today with my Rheumy and basically he gave me a complete rundown of the disease itself and how it effects the body and my options.  He spent at least 40 min with me and I felt sooo... calm that he took this time with me considering how busy he is.  I really felt that he answered many of my questions and explained everything to me so I could understand.  I guess it all boils down to either "Humira" or "Embrel".  He sent home a kit for each for me to watch a video tape and read some literature and wants me to take some time(2-4wks) to review the information, write down questions and do any research I wish.  Then when I come back he will get me started.  It sounded to me that he was giving me the choice of either drug. But totally recommended only those two choices.  He assured me that the side effects of the cancer, etc are at a low %.  And only about 35 known cases.  I am so scared of the Cancer!
 
Now, from either of your points of view, what would you recommend from your experience on the med?  Also, he spoke very little about the plan of blood work throughout the process.  So how often will I have to be checked on white blood cells?  Would I want to check on my last immunization of TB?  He mentioned using another drug with one of the above.  Will I probably end up doing the injections myself?  How often would I have to see him?  I expressed my concern about not having perscription coverage and he was very adament that I don't need to worry about it and he would take care of it.??????  Today after my appointment , he had me get a chest xray and blood work(including pregnancy test)? I wasn't really sure why.  I had so many more questions for him, but felt I had talked enough for one day with him for now.  I will make my list again for the next appointment.  He is a foreign DR & a GOOD one! But a little difficult to always understand.  Everyone speaks so highly of him, so I have all the confidence in the world in him.  Oh, he also is having me wear a finger splint on the deformed finger.  He thinks it may help staighten it out.
 
Well, I guess I'm on my way to my getting a grip on this and trying to stay positive.  He did tell me he will keep me on the Effexor xr & lunesta since that is helping to keep me calm.  I am so glad of that.  I had more improvement with fatigue and anxiety with those. He also said the more informed I become of my disease and the calmer I can remain, the better I will do with the
disease.  The mind is a Powerful Thing!
 
I'm open to any more advice or information anyone would like to share with me -especially on those 2 drugs!
 
Thanks a bunch!
 
Sweetpea
Dx: Chronic Pain for 2 yrs, FMS May 2005, RA Nov 2005
Meds: Lunesta 3mg, Effexor XR 75mg, Aciphex 20mg, Prednisone 10mg,
         Glucosomine/Chondroitin/MSM 1500mg, sometimes Darvacet 650mg
         3 x daily or Mobic 15mg daily 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/7/2005 7:56 PM (GMT -7)   
Oh Sweetpea, you made my day.
My heart is swelled with confidence for you!  Stick with this doc...he sounds like one in a million, believe me...they are hard to find.
Well well well...which med to choose?  Hmmmm.  Ya know, the rheumatologist I consulted with @ the Bone and Joint Hospital in NYC said the same thing to me!  I basically got to choose. 
Enbrel and Humira are very very similar, working the same way, doing the same things.  Although, Enbrel is approved for treating Ankylosing Spondylitis and is used more often in psoriatic arthritis.  Other than that.... both drugs act in the same matter to help RA.
I've been on both...so maybe I can help.
  • the Enbrel 25mg twice weekly injections were the best (feeling I mean) easy to inject, easy to reconstitute.  Down side, ya gotta poke yourself 2 times and assemble the syringes.
  • Enbrel 50mg once weekly.  Those suckers STING a wee bit...but if it's working it is worth it.  They are already prefilled so that's a bonus!
  • Humira 40mg, what I am on now.  Typically every 14 days.  They are OK in my book, I inject into the abdomen with the Humira.  Stings a little but not as much as the Enbrel 50's.  I'm comfortable with the Humira the best out of all of them.  On it every 7 days (I need stronger doses than the normal every 2 weeks)

Self injecting is scary sure!  Especially if you are not accostomed to needles.  I gave hundreds of shots before I had to do myself...and it was still weird!  But you get so confident after you do it yourself!  It gets easier.  The doc will most likely have your first shot done in the office.   But it's totally normal to feel freaked out by it!  Don't worry...we'll have a shootin' up party here for you the day you do your first!  LOL

The adjunct med?  Maybe he has in mind methotrexate or Arthrotec...but he'll figure that out, there are so many.  You'll read in the pamphlet that these drugs work well when combined with methotrexate....but that does not mean you will have to absolutely go on it.

The doc appt's will be often.  When you need them and typically every one to 3 months.  Bloodwork maybe often too depending.  Maybe every one to 3 months.  Humira has an assistance program that provides you with the medication if you cannot afford it.  I am on this program!  I receive Humira at no cost.  I do believe Enbrel has one as well, but I am not sure.

Both drugs have telephone R.N.'s to answer questions anytime.

I think you're doing great!  Also, whatever med you choose, if you are not satisfied after say a year or 6 months...you can try the other one.

Stay positive....no pressure!....I feel you're in great hands! Your doc sounds great.

Sincerely,

Erin  


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/7/2005 8:14 PM (GMT -7)   
:-)  Also, Oreo and Ducky are both taking Enbrel...I'm sure they will provide more insight and experiences as well.  They are great gals.
Camama is working on a TNF too ain't we mama??  Enbrel? :-)
All here for you!

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 12/7/2005 10:35 PM (GMT -7)   
Yessss Moooommmmm! Oh, I mean Erin! tongue   I should be starting Enbrel in January or that new drug for the testing group. We'll see.
 
SweetPea, sorry for jumping in so late - it sounds like you have a good doctor. Good luck with treatments. My brother in law feels Humira is the way to go - that it is the newer improved TNF blocker to Enbrel's ancient ways...or something like that. tongue But, what it comes down to is that everyone's body reacts differently  and one may work where another one fails for YOU.
 
Those tests are important to ensure you have no infections going on when you start the medication.
 
Prednisone, by the way, put me in such a fog I went a bit crazy - literally. Not a fun drug. It also kicked off severe depression and weight gain for me.
 
Often, stress - such as the divorce you mentioned - seems to trigger autoimmune issues. It is a vicious cirle, that is for sure. Stress can cause depression and the depression can cause arthritis-like symtoms OR cause flares in someone with arthritis. Then, the arthritis pain causes depression and the depression can caus stress. It seems you just can't win at times. But, I think you are one the right track with a helpful (yeah! He sounds like a keeper!) doctor. Good luck.
**
 


oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 12/8/2005 10:40 AM (GMT -7)   
Sweetpea, Erin and Camama have given you some great advice. I have been on the Enbrel for 1 1/2 years. After taking methotrexate by injection for a few months I was used to doing the self injections. I actually came on here and recommended the abdomen to everyone as an injection site since I found it a great place. It hurts less. That is the bottom line, it is where I was most comfortable. You do the injections where they work the best for you.
Your Dr was right that the risk is quite low for developing cancer and other diseases but it is still there. That is the reason that you always try all other med groups first before even considering the TNF's and some DMARDS. The "higher" (more potent) the med, the greater the risk of more serious side effects so you always start at the "safer" meds (the ones with reversible side effects) and work up to the more potent ones. The thing with the TNF's is that they work to "modify" the body by supressing certain "systems". As such, there is a greater risk of developing other infections so your Dr should have you checked for TB before you begin. Some people have a latent form of TB that doesn't cause symptoms in them, but with taking a drug that is going to supress your immune system, if you are a latent carrier, it can cause the TB to flare. I have always tested negative for TB but to be on the safe side I still had to have a TB test and chest x-ray done before I could start the Enbrel.
I get my blood work every three months. For the first while it was once a month but after the first 3 months he switched it 'cause my levels didn't change at all. I also found with the Enbrel the physical side effects were nil. I had gone from the MTX which made me really nauseous to the Arava, which made my hair fall out, to the Enbrel. I had no side effects. The following winter (1 year after starting) I did find that once I got a sinus infection I just couldn't shake it but so far that is the worst of the side effects.
I wish you all the best in your decision. If your Dr is giving you the option, look at all the info you can, and make an informed decision that works best for you. And if you choose one and it doesn't seem to work you can always try the other. Even though both of the meds share a similar action, your body may respond better to one over the other and you won't know until you try.

You are in my prayers as you make this decision.
Oreo
God will never give us more then we can handle, I just wish that God didn't trust me so much.
 
Remember healing comes one step at a time, sometimes it seems that its two steps forward and one step back, but ultimately, always in a forward direction!!!
 
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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/8/2005 12:15 PM (GMT -7)   

Oreo, you are right...I was so freaked out by the idea of self injecting into my abdomen; but when I went on Humira that was the area I chose...and it was great.  I shoulda listened to ya way back when nono .  LOL

Giving patients injections is a peice of cake...but when it comes to yourself, the best of the best probably get the jitters the first time.

It's a very good area to inject, I agree. 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 12/8/2005 6:08 PM (GMT -7)   
Hey Sweetpea! I have been on Enbrel since March... it has been wonderful for me... I really can't tell you anything different than what Erin or Oreo has said...I too was very worried about the cancer thing... But what my rheumy explained to me was this... EVERYTHING now a days causes cancer... Have you ever been on the pill? That causes cancer... 2nd hand smoke? Cancer... But because there is a slight chance, they have to tell you about it... I know that without the Enbrel I would be bedridden and in a lot more pain... Since I have been on it, I walk without a limp, I can stand for longer than 2 minutes and I feel like I can function again... I can work, I can play with my kids, I can walk through the mall... I couldn't do any of those before Enbrel... well I could, it was just a lot more painful. Good luck to you, 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

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