Hello, my doctor at Cleveland Clinic called yesterday and told me that they want to put me on Imuran. He said it's better for my liver than other medication for Takayasus (I now have definite diagnosis from CC). He wants me to start it right away. I am very scared about taking this drug or other immunosuppressive drugs. The side effects are scary: brain infection, cancer, infections, liver, kidney damage etc.,
Has anyone just decided to take predisone only for GCA? Has that worked for anyone? I honestly don't know what to do as I feel very overwhelmed about the addition of medicine this time. The doctor explained the seriousness of my disease and that they believe I had Takayasus 8 years ago. It may have burned out then or may not have. I don't know. But the new symptoms are more in my head and neck this time. I also have had a hard time breathing for years. I didn't put this as vascultitis because I was told FMD 8 years ago, not sure if I have pulmonary involvement now.
I get my CTA's in two weeks. I will know more about damage. If there is none right now, would it be ok to stay just on pred? Just asking about people's experiences. I know I can't get doctor advice on here, but everyones' experience is so helpful for me. It is a big decision to take immunosuppressants because of what can go wrong. But, yes I know not taking any medication is a very bad decision.
Thank you
Bekah
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RiviS7
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You are coping with so much. You said in your bio that you found two doctors who have been helpful, you really need to talk over all your worries about medication with them. I do help you get some helpful medical advice from your doctors. I find it helpful to make a list of the things I want to discuss with a doctor before I see them.
As much as I do not like taking medication ( pick your poison-lol), I was put on 80 mg. of Prednisone, at first, for GCA. it was a game changer and saved my eyesight! If you do not feel confident with your doctors then look for other ones. The best to you.
Thanks Miacaro45I feel confident with my doctors. I just not sure for me. I don't do well on medicines. Have had bad reactions to blood pressure meds and even thyroid meds.
I was on it for about 4.5 years..and my GCA has been in remission since Sept 2018… very high doses initially as late diagnosis resulted in irreversible sight loss in right eye. At that time, Tocilizumab/Actemra hadn’t been authorised for use in UK for GCA… so Pred it was.
Have to say it never caused an issue and I never flared…
I have been on Prednisone for 4 years so far. I started with 80 mg and now down to 7/12. I tried Methotrexate and Actemra and could not tolerate them. My feeling is that you should try whatever your doctor prescribes. You can always stop taking the medication if doesn’t agree with you.
The main question is which have you got? GCA or TAK? The original illness is much more suggestive of TAK than GCA since there was abdominal involvement and at a young age - and you got some good replies on your very first post on VasculitisUK.
They are very reticent about leaving patients on longterm pred because of the perceived adverse effects over time. MTX (methotrexate) and AZA (azathioprine, brand name Imuran) are often used in Takayasu's which is often diagnosed in young women in the 30s and 40s who then face many years on pred to avoid organ damage. Organ damage is far less common in GCA but doctors use MTX there to try to reduce the cumulative dose of pred. It is also more common for the underlying autoimmune disorder to burn out in GCA (I explained that in your first post too) so management of TAK is likely to go on much longer than the 4 or 5 years commonly seen in GCA.
I can only assume they want to keep Actemra in reserve in case the pred and AZA fail - but TAK is the only vasculitis where Actemra is approved without limitations in the UK. Given how relatively easy it is to get it funded in the USA I do wonder why it isn't being suggested for you now.
PS If your diagnosis is Takayasu's rather than GCA, then BronteM is still on the forum, has TAK and is on pred and Actemra as 2 weekly injections. She would be a good person to contact I think.
Then it is very unlikely they will want you to stay on steroids alone. But I am surprised they haven't mentioned Actemra unless they are keeping that in reserve.
AZA is taken by many lupus and other rheumatology patients - the list of side effects covers all that have been seen, it doesn't mean everyone experiences them and many have none of them
Imuran (a branded version of azathioprine) is taken by many people with life-long autoimmune diseases, as well as organ transplant recipients. It can take 6 months to a year to take full effect, so starting early is important, in parallel with prednisone. Not everybody gets the short-term side effects, let alone the long-term ones. Personally, I would follow the doctor's advice.
Thank you AtopiczGuy I probably will. Just need time to handle the reality. Iam also sad because my mom has colon cancer and dont know how to keep myself safe on immuno drugs while trying to take care of my mother.
Being on AZA really is little different to being on pred - many on the forum have been on pred plus another medication. I'm on pred plus the biologic Actemra. It has made no difference to me, I have had no more infections than I did before.
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