I’d. be interested in knowing if anyone else is taking auto-immune suppressants for medical issues you have. I’m taking them because I’ve had a liver transplant. Although I do get very painful flare ups, the pain doesn’t seem to last for as long as some of the discussions indicate in the discussions. Seems to make some sense as the auto immune system appears to be involved in FMS. It appears that it doesn’t change the chronic fatigue as it goes on for months. Just wondering if anyone else is on these, and they think it makes a difference. Also thanks to everyone who welcomed me to the form.
Hi b2chi, Wow a liver transplant !!! You are so blessed, although I know the process is no picnic !!!
My younger brother had a double lung transplant may 12th, 2012, he has all the symptoms of fibro, but they are still just calling it post transplant pain and fatigue, I wonder if it is the transplant or the drugs to prevent rejection, like you, his immune system is very compromised. I think your question raises a great deal of thought.
One month after the lung transplant, our older brother died of liver disease, no transplant… And here I am in the middle with fibro …makes me wonder ???
God bless you and I pray you continue well without rejection…
I’d love to here your story if you message me that would be great, if you would rather not talk about it, I understand.
Welcome and thank-you for sharing
Hugs & blessings
Hi b! I hope that you are doing very well with this, and I hope that the drug is very successful in helping this to 'take'.
I take an immune suppressant (Enbrel) for Psoriatic Arthritis. With autoimmune diseases such as this, it throws the immune system into overdrive and the joint damage of this disease progresses. The Enbrel, slows the immune system down, and slows the progression of the disease.
In your case, I believe the drug prevents the immune system from attacking the new organ as a foreign invader (like my disease is a foreign invader) and helps to make the transition more successful. I am more familiar with the drug/s for my purpose, so please correct me if I am not on the right track.
Love and hugs,
Thanks to both of you responding. I'd had fibro for a long time, before my liver transplant, was in hospital for 6 months because of complications. When they cut the morphine and cut back on the immune suppressants and the fibro reappeared. So far thanks to the suppressants (mycophenolate, tacrolinus) I've been fortunate and had no sign of rejection after 4 years. Although I get a lot of flare ups and can be in major pain, I'd say that often the chronic fatigue is worse than the pain. Just wondering after seeing the study which was posted if the auto immune suppressants are helping with the pain. SK have you noticed any change,
Soft hugs B2 chi
I take Methotrexate for Lupus. It has done wonders for the lupus, but not fibro - I didn't even realize I had fibro until I'd been on the MTX for 6 months and still had a lot of pain and fatigue, even after the immunosuppressant stabilized the lupus.
From everything I've read about fibro, fibro and AI diseases, while having many similar symptoms, do not cause the same problems (other than pain and fatigue). I take MTX to try to prevent organ damage, some with AI disorders take it in an attempt to get organ damage under control and you of course, take it to prevent rejection of a new organ. (As those of you who take these drugs know, the potential problems and side effects are frightening).
Correct me if I'm wrong, but from everything I've read, fibro is not destructive... it doesn't cause joint damage, kidney failure, lung diseases, clotting disorders, vasculitis, etc... If that's the case, then it makes me question whether there is any type of immune system involvement with fibro at all, since the immune system is so destructive and dangerous when it goes rogue.
Good luck with your new liver. I hope you do very well with it. It also looks like you may be new to the forum? I must have missed that... welcome! I'm new myself - I think I've been here for about a month. :)
Yes, I have noticed a change, and Enbrel has given me some very good days that I know I would not have had without this miracle drug. These autoimmune diseases are genetic, my grandmothers as far back as my Mother can remember were hunched, hump-backed and gnalred from Psoriatic Arthritis, and who knows what else, osteoperosis, for sure.
I had not known my grandmother had Psoriasis, I do not have it, so I was hard to diagnose. The Rheumatologist asked me if anyone in my family had it and I said yes, every one of my grandkids have it and my great grandson was born with it. I told him they got it from my mother in law (she had juvenille RA, just recently died at 97, so this was diagnosed in the dark ages), so I assumed this was from her also. He said "NO, Susan, they got it from YOU" and I was totally stunned., He diagnosed me by my pitted fingernails. Next time I went back, after my Mother had confirmed she had Psoriasis (my grandmother), he went on to tell me that this is ALWAYS inherited. Last time I was there I told him he was treating my cousin on my mother's side for Psoriatic Arthritis, and he was out of the room with her records in hand, making notes.
Though I was always a hard working dynamo, I can look back and see these diseases nipping at my heels, I am sure I have always had Raynaud's as my fingers and toes have always turned white and ached with cold exposure. The questionnaires I fill out for him each visit are now asking if I had 'growing pains' if either of my parents did, and of course my Mom and I did. She is now 80 and it is hitting her.
Though the Enbrel has helped me, he keeps telling me that I have had this for a long time, and though I have been helped, but I am not as well as he thinks I can/could be, so he mentioned he wanted to keep me on this through the end of January and may possibly change me to Humira, as I feel this is totally out of my system by Thursday and I am always in bad shape on Friday. My shot time is Friday at 5pm. Unfortuantely, I am at maximum dose of 50 mg a week, he explained that the Humira shot can be given twice a week and noted that my cousin is having good results with Humira.
I was first diagnosed with 'Overlap Syndrome' which basically means that I have several symptoms of many different autoimmune diseases. This dx was from my GP, a great Internist. On the list was Raynaud's, Sjogrens, RA, Scleroderma, SLE. (I think that's all of them) He explained that in time I will have several of these if not all of these.
They continue to test me for MS as well and continue to look for the Systemic Lupus, so far all three MRI's of the brain have come back clean, and my hands remain bright red, swollen and very shiny, all classic symptoms of the nasty Scleroderma. This is on my list of things to talk about. I have to go get bloodwork done, they check my liver and kidneys on a regular basis..
So, this is quite a long list of things for one shot to handle, I guess, and he continues to tell me that I have had this for a LONG TIME! It took 7 years for the dx, this is the average amount of time it takes to diagnose this, he told me that until very recently the dx time was 30 years, and treatments were very limited, he said people suffered endlessly until recently. He said that Psoriatic arthritis is the most common autoimmune disease of this area. I live about 70 west of Washington, DC.
The biologics are an amazing medical breakthrough, they bypass all of the systems of the body where we usually have side effects and can pinpoint where they are needed right down to the very cell of the body! They are the meds of the future, I feel I need to do everything I can, and I pray every single night that these terrible diseases can be wiped out of existance. I do not want my loved ones struck down with any of this!
I am very sure that you have gone through more than we could ever imagine. You are very brave and strong, and four years sounds like a triumpth to me! I surely hope that you continue to do well and they can get everything under control.
The only liver problems I have had is when after about 20 years of suffering, they finally, through an X-ray called a Hida scan learned that my gall bladder was DEAD. They are supposed to open and close, and mind did neither, so I was in surgery ASAP, fearing gangerine. I am very fortunate that they were able to use the surgery where this is done with a few small incisions, but my dead gall bladder was stuck fast to my liver, he was shocked that I wasn't as yellow as a daffodil, I had been going to an acupuncturist, and when he would insert the needle that correcsponded wth the GB, I would nearly go throught the ceiling!!
Both my Internist and my Chriropractor suggested I use the herb milk weed thistle and were very pleased at how quickly and nicely it had healed my liver. I am sure you are on some very serious medicine, so please don't even consider this unless you would have the express permission from all of your Drs.
I am wishing you the very best!
Love and hugs,
Hi B2, I take an immune suppressant called, plaquenil for lupus. The only change I've noticed is no more awful rashes! I used to get awful ones on my face. Itchy, and embarassing. Nice to meet you, and i hope you continue to do well. Charlie :)
Hi redwing fan. My husband has lupus, however he’s been in remission for about 20 years we think although some of the pain he’s been having recently I’m started to wonder if it’s reoccurring. My understanding as well is that fibro does not do the damage to joints and organs that Lupus does and although debilitating is not life threatening. After reading the study that was on the site it looks to me that the auto immune system is a bit player in the process while it is the star player in things like Lupus. I am new to the forum, the ftransplant has been successful to this point and other than all the meds, I often forget that I wasn’t born with this liver, and I am very grateful to the organ donar and my medical team. I can’t imagine having lupus and fibro. I hope you have some comfortable and joyful days, and lots of support.