Has anyone successfully tried Embrel or other BIG GUN injections for MCTD? I'm new here!

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AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/13/2012 12:53 AM (GMT -6)   
I am Angelina <snip> & Ive tried every immunosuppressant in the book to no avail! I want my Rheumy to prescribe embrel or the alike, but a) don't know if they will ...b) I will admit I'm afraid of it (too much knowledge is sometimes a detriment!) C) I have to get some control over this ...I cant stand the steroids & so far nothing else works!
My last pregnancy at 33 yo triggered this - & although I wouldn't trade her for world, my life is honestly a shell of what it once was - not just my life but ME ..my essence ..I don't complain a lot bc I figure just bc I'm in pain doesn't mean I need to BE A PAIN...BUT lately I feel like I'm holding back tears constantly, ..trying not to let my children (10 & 7) OR my husb or friends see how badly I'm feeling
Tired of all the drugs, the constant daily battle to be brave & just smile to cover up my pain & frustration.
I have MCTD, FIBRO & RAYNAUDS. 41 yrs old. Take 12 diff meds & YES THOSE INCLUDE PAIN MEDS (I would be totally incapacitated without them so anyone that has a prob with it can deal with it - my Dr totally trusts me & know I don't abuse it, only taking lowest dose - & Ive been same dose for 3 yrs - fentanyl patches ..without them I would prob be insane from the pain - Yes it IS THAT BAD!) I realize some ppl can get by without these meds but I'm an exception.
Anyhow I hope someone can tell me if they've tried Embrel!
Thx so much! Ang

Post Edited By Moderator (Lynnwood) : 1/13/2012 8:32:35 AM (GMT-7)


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 1/13/2012 10:08 AM (GMT -6)   
Angelina,
 
I have mctd (an extreme case) and it was resistant to treatment but did respond to a 5 day treatment of IVIG.  Others have used a combination of pred, imuran, and/or methotrexate.  The problem with many of these treatments is that it takes months to know if it will be effective.  Others have responded to rituxan or cellcept.  Have not heard of anyone taking enbrel.
 
Most of these treatments have side effects, some even serious, so there is no side effect free panacea .  IVIG probably has the least but some people do have problems with it and it is very, very expensive and needs insurance approval.  It is an infusion and other meds have to fail first before most insurance will approve it.
 
Looked at this site and they do mention enbrel to treat arthritis which can accompany mctd.
 
 
Bill

Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 1/13/2012 10:33 AM (GMT -6)   
Angelia,

This is a community of equals and we ask that professional opinions not be given -

Rule 8. If you are a medical professional, do not use the forums to distribute professional medical advice.

It would be great if you could remove the rx from your screen name and not identify yourself as a pharmacist when responding to posts.

I hope you understand - it's a liability issue and we don't want the site to get into legal issues. Thanks.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/13/2012 12:33 PM (GMT -6)   
Wow - thank you 4 the response!
I have tried imuran, mtx (methotrexate) w no luck ...liver enzymes went NUTS!
BUT haven't tried the others & will discuss w Rheum. I think if they can keep me semi -functional w Pred & others that's what they do (but its not actually functional if I cant work!)
thx for info! :-)

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 1/13/2012 1:16 PM (GMT -6)   
With lupus, the 3 main ones seem to be Imuran, Cellcept, and MTX. For me personally, Imuran did nothing, but Cellcept was my miracle drug that gave me back my cognitive functions and put me into a 'quiet' phase. Other people have great responses to Imuran -- Lupus is just so different for everyone that things unfortunately end up being a bit of trial-n-error!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/13/2012 6:37 PM (GMT -6)   
Did you try plaquenil?
Joy

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/15/2012 12:51 AM (GMT -6)   
Yes Plaquenil was the 1st thing I was started on & IT DID NOTHING! (I wish it had helped!)
Imuran made me have headaches so extreme it felt like I'd been shot in the head!
Mtx caused liver to shut down!
I would like to try Cellcept or IGIV but we'll see if my Dr (& Ins) will let me.
Thanks 4 all your help! Ang

Dodd
Regular Member


Date Joined May 2011
Total Posts : 34
   Posted 1/21/2012 6:41 AM (GMT -6)   
Local Rheumy diagnoses my wife with inflammatory arthritis but treated her as if she had lupus. The Rheumy at Mayo said she has a variant of lupus or "some kind of connective tissue disease". She has been on roughly 40 mg of Pred for the past 10 months, Plaq, MTX, and many more for pain and to counteract the Pred. Anyway, she tried Enbrel for about 8 weeks and it didn't do anything so the Mayo Rheumy told her to stop taking it. Trying CellCept now...

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 1/21/2012 7:58 PM (GMT -6)   
Please let me know how she's doing on the Cellcept! I have a healthy fear of that 1 but I'm getting desperate! Thanks for responding!
Angelina.
age 41, Mom of 2 great kids (10 & 7)
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Arava, prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

butternutsquash
New Member


Date Joined Apr 2012
Total Posts : 13
   Posted 4/27/2012 11:19 PM (GMT -6)   
This is my first post ever.... I am sorry to read of all your misfortune with the medications. I am 32 diagnosed with Ra at 25 started on mtx and was great! Eent into remission for 5 years then bam! Major flare and no establised rheumo. Got one after 2 months (I'm a nurse so I called in some favors) and eas started on Enbrel. After the hell i went through on mtx I was excited to be on this medicine. My husband and i have been trying for a baby and recently I miscarried. The enbrel took (like every other drug for ra or lupus.) What felt like forever to work but really about 8 weeks. It has to be authorized by most private insurances and you have to have failed a minimum of one other medication. The enbrel support foundation (if you have commercial insurace.) Gives you 6 months free then its 10 a month, which for me is cheaper than a prescription. Besides the rare injection reaction i have had no poroblems but it has not controlled my disease. I was diagnosed last week with lupus as well as ra and started on plaquenil and low dose prednisone with very strict instructions that i must see a perinatologist, and stop enbrel if i get pregnant again. I cried. Even though it helped me about 95% i dont want to give it up. I love taking something only once a week! Even if its
shot. They mail it to me ----so convienant! I found through trial and error that it hurts less in my tummy, as i have fat legs and i think its absorbed better because there is less fat on my stomach. Always let it get room temperature and let the area dry completely after swabbing with alcohol. Sorry this is so long but i hope it helps. Best wishes and lots of luck!
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