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Enbrel ...


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#1 MicheleM

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Posted 03 October 2007 - 11:21 AM

Hi guys. Went to the dr. yesterday and we talked about getting me out of pain & exhaustion. We talked about how it is now, one good day knowing there will be two bad days to follow. We talked about the therapies that either didn't work or were too harsh for the rest of my body. We talked about quality of days. It's been really rough - rougher than even I knew. I'm not a good patient when it comes to wanting chemicals. I really want natural remedies and I now I am coming to terms with needing something more. I swore I would never go back to the time when I was on 13 drugs a day that almost killed me from the combination & side effects. SO, here I am ... again ... trying to make heads and tails of my sclero & how to feel good. My doctor says he thinks Embrel is the way to go. Two shots a week, return of energy, relief of pain ... sounds really good, however, it's not a short term committment it's a lifetime committment until something better comes along. I have lung involvement & PAH (38), vascular, limited skin involvement, shrinking mouth - probably more, but I stopped looking. So, now I've made the appt with the pulmo, got an appt. with another new rheumatologist and starting once again. Now that I've got that out of my system !!! WHEW!!! Anyway, Embrel is the suggested treatment. Has anyone used this med for sclero? Anyone have any good/bad news about this med to help me make a decision on what way to go? Cellcept is the other choice at hand, not a whole lot of info on web except for transplant use. I know this is used for sclero from others, but I don't know the whole picture on how it works, ... Thanks for reading this far and for any info you can share with me! Michele
Soft hugs your way,

Michele

#2 LisaBulman

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Posted 04 October 2007 - 02:17 AM

Hi Michele,
Cellcept is an immunosupressant drug. It was orgiginally made to help patients who underwent a transplant to help their body not reject the new organ. It supresses their immune system until it would accept the organ. Now dr.'s are using it in patient's with sclero to supress their immune systems. Cellcept
Here is some information I found on Enbrel for you.
Hopefully someone who has been on cellcept will jump in with some first hand advice for you.

Hugs,
Lisa
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#3 Vee

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Posted 04 October 2007 - 02:59 AM

Michele,

I"m on my way out to you of M, I'm going ask my doctor about enbrel. I'll let you know what I find out.
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#4 MicheleM

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Posted 04 October 2007 - 08:41 AM

Thanks guys. Hope you of M went easily today & you're not completely exhausted. For some reason I thought it was Thursday ... and then I realized IT IS THURSDAY!!!!! Don't know where my mind is. Guess it's in the clouds trying not to worry about ANYTHING!!! Love to you all!
Soft hugs your way,

Michele

#5 janey

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Posted 04 October 2007 - 11:38 AM

Michele,
I've never been on enbrel, but I started on Cellcept back in early April. I've had no side effects that I'm aware of and my last pft showed my lungs were stable with a slight improvement in the TLV and DLCO. I did a search and couldn't find where enbrel was a common treatment for scleroderma, however, it is approved and used for psoriasis and rheumatoid arthritis. Cellcept is new to scleroderma, but has had a couple of small successful studies. I don't have skin involvement, so I can't help you in saying whether or not it's helped there.

Let us know how you do. They are finding new and improved ways to help us everyday. I hope it works for you.

Big Hugs,
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#6 Vee

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Posted 04 October 2007 - 12:57 PM

Hey Michele,

Yes it is Thursday, and yes I'm wiped out! But not enough to keep me away!

I asked my doctor about the enbrel and she made it sound almost like it were a personal preferance, depending on the doctor and his patients relationship, but she did say that in had a history of causing some lung infections and that if a person has lung issues they have to watch it very carefully.

She mentioned that when my RA is bad enough to have to do something medically about it, she wants me to try the rituximab (sp?) It is an injection and somepeople respond very well to it and only have to have it a couple of times.

My lungs are still stable.........well, you can call me, I won't bore everyone with all the details of my visit.
Talk soon? Ring me up.

Hope you had a great day, and that you know that it is still Thursday! :lol:

love ya' xo
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#7 emmie

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Posted 04 October 2007 - 05:27 PM

Hi Michelle,

I started on 500mg of cellcept in June of 2005. It was prescribed by my rheumatologist when my lungs first started showing signs of ILD and I was getting short of breath. In March of 2006 she increased in to 1000mg.

In April of 2006 I was diagnosed with Hashimoto's Encephalopathy a very rare neurological/endocrine disease in which antibodies attack neurons in the brain. Mega doses of prednisone are the first choice of therapy for this with a gradual reduction and treatment with an immunosuppresant. I do not tolerate pred well at all so we went immediately to the immunosuppresant. The neuro increased the dosage to 2000mg a day. (We are trying to get insurance to approve IVIG infusions, but that's a whole other story!)

My lungs are clear of ILD as of my last CT scan this past June! I believe it has helped soften the skin on my hands and wrists. Of course this could also be just the course of the disease as the skin does tend to soften with time. I have not experienced any side effects from it.

Sorry this is so long, but I wanted you to know that it has been prescribe for me for 2 very separate diseases. I know it is also prescribed quite frequently for people diagnosed with lupus who have kidney involvement. Hope it helps you.

xoxo emmie

#8 MicheleM

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Posted 07 October 2007 - 01:33 PM

Sorry it's taken me so long to say Thanks Emmie! I'm really sorry you're having trouble getting the IVIG - it really helps! It is very expensive however :o I had the treatments and did really good for about 6 - 8 months after they were finished! It's been a couple of years since & I'm going a little backwards now :( I am like you with the prednisone. I get kidney infections that just won't quit once they start, then it's more drugs .... I hope you're having a good day today and thanks for posting! Michele
Soft hugs your way,

Michele

#9 Kamlesh

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Posted 07 October 2007 - 05:16 PM

Hi Michele,

Cellcept is a great drug for the purpose. I was on Cellcept 3000 mg for 18 months and it helped stabilize my lungs and soften my skin. Reduced dose to 2000 mg for few months. My liver enzyme went up and blood counts CBC/RBC went down. Further reduced dose to 1500 mg. But, no improvement on blood count. I had to stop it completely four weeks ago and monitoring blood test on a weekly basis to monitor my WBC.

Cellcept impacts bone marrow’s ability to create white blood count. Most of the time, once you stop Cellcept bone marrow will recover, but in some cases it can damage permanently. I hope that is not case with me, but I cannot rule it out yet.

So, it is extremely important to monitor blood test every 4-8 weeks while on Cellcept based on advice from your rheumatologist.
Kind regards,

Kamlesh


#10 susie54

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Posted 08 October 2007 - 01:05 AM

Michelle,

I have a friend on Enbrel for rheumatoid arthritis and is doing great with it. They have to monitor her liver while on it but she has not had problems in two years. She says she could not function without it. I hope it works for you. Susie54

#11 mowingqueen1

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Posted 12 October 2007 - 12:55 AM

I also just started taking enbrel 2 wks ago. My first rheumatologist said it would not benefit me however my new doctor thinks different. I have deep skin involvement
that has crossed two joints. So far my pain has not changed at all however doctor said it may take a little longer to know if it will work or not. I'll let you know if I see a difference in pain.

#12 jefa

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Posted 12 October 2007 - 08:39 PM

Hi, mowingqueen1. Nice to see your name on the boards again. I have been following this discussion of enbrel and cellcept quietly with interest but have nothing to add. Keep us posted on how it works for you, Michelle and Mowing.
Warm wishes,
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#13 MicheleM

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Posted 13 October 2007 - 02:35 PM

Thanks for the words of encouragement Mowingqueen! You're the first I've heard from using the Embrel. My doctor was so positive about all the good these kinds of meds do for people who use them. Are you of the understanding that it's a long term committment ... doctor said once I started it would be a forever type thing, not something to easily stop. Did your doctor say anything like that? Have you had any good side effects or bad? I don't see the rheumatologist until Nov. 6 & I'm guessing he'll be the one to help me decipher this one out. I'm guessing though it will be cellcept due to me having lung involvement. Do you have lung involvement? Sorry for all the questions, I can't seem to stop myself!!!! Thanks again for posting! Can't tell you how much I appreciate your info! Michele
Soft hugs your way,

Michele

#14 mowingqueen1

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Posted 16 October 2007 - 08:25 AM

Sorry it has took so long to get back with you. I do not have lung involvement. The only thing I have is skin tissue involvement. I may have more going on but they can't decide what. The harding of the skin is very deep (very deep). It is spreading more each visit I have with the doctors (every 3 months). It is now from my lower back to the back of my knee. Now it has decided to go to the other side of my body. They keep changing my meds because I am having lots of pain at times and my walking is getting worse. They think that enbrel may help with some of the pain. I'm not seeing any difference yet. I just met someone else that has rheumatoid arthritis that is also taking enbrel. She has had major improvement. She said it makes a difference if she is able to get up in the mornings. She also was told this is a long term committment. I am have mild headaches on and off. She also had headaches but she said they went away after about a month.

#15 MicheleM

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Posted 16 October 2007 - 09:01 AM

Thanks again for your information! Next week with the Pulmo will most likely be the deciding factor. I'm having a better day today & that's a good thing! I have had such days these past weeks and don't know what I would have done without you all to let off the steam! Thanks!
Michele
Soft hugs your way,

Michele