Have just been commenced on mycophenolate fo... - Vasculitis UK
Have just been commenced on mycophenolate for large cell arteritis has anyone found any side effects with drug also reducing prednisolone??
Hi Scot
I have MPA and started on Mycophenolate at the beginning of December. This was after six weeks of being on Azathioprine which was making me feel unwell. I started on 1000 mg and ramped up to 2000 mg over two weeks. So far there has been no problem other loose bowel movements (which tends to be a common side effect). I have been told by the consultant that there is another version of the drug which can be used if this becomes a problem. It seems to be gradually improving so I will wait until the current prescription is used up before deciding whether to change.
Hopefully you should have no problem. Good luck
Chris
John has been taking Mycophenolate since 2006 the only side effect he experienced was diarhoea right at the beginning but it did settle down after a while...but as Chris says loose bowel movements are quite common... John reduced the prednisolone very very slowly and finally finshed them almost 2 years ago.. he started reducing the Mycophenolate in September 2012... and has just reduced them again this month. John has WG.
Hope all goes well
Susan
Thankyou for your comments hope all goes well.
I took mycophenolate for a short while (about a month) and it made me feel terribly unwell, nothing specific, just felt awful! - I have the same reaction to azathiaprine. I think I'm in the minority on this one and hopefully it will suit you. The drug that I can tolerate is methotrexate.
I have been on Mycophenolate mofetil for about 2-3 years now for GCA. At first I was on Methotrexate but that affected my lungs; then on Azathioprine but that was damaging my liver. Since then on mycophenolate 1 gm twice daily. At first I seemed to tolerate it but lately I am very unwell again with frequent very loose bowel movements and I feel sick most of the time and am unable to eat. I have lost 3 stones in 3 months and had severe shingles in face and head.. I am still on steroids with it (prednisolone 15mg) and my ESR is rising. However, unable to see consultant again until end of March. I feel that it is probably a vasculitis flare or I am not tolerating the mycophenolate very well. Fortunately my GP is wonderful and very caring but she is as frustrated as I am at a failure to see the Consultant any sooner.
David. Luton
I had shingles on one side of my neck & head soon after starting treatment I found a way of relieving the pain, I took a shower in the morning & maybe for 5 minutes or more concentrated the water on the affected area full blast, it used to give me between 2 & 4 hours of relief. I think it confuses the nerves for a time
Hope it helps you
Tony
Hi I have Cerebral vasculitis and took Mycophenolate fotefil for 3 years after coming off Cyclophos. As with others the main side effect was diarhoea. I used to take 2g/day. However for me this was used as a Steroid reducing agent and I managed to slowly come off them altogether apart from ocassional short courses and now im injections? So for me it worked really well and I have managed to come off that to go on methotrexate and soon Rituximab?
Hope it works aswell for you?
Sarah
I have been on mycophenolate for almost two years (1500mg per day in two 750mg doses) and also prednisolone which is presently at a low dose and reducing. No problems at all, not even the often reported bowel problems. So, good luck, and I hope it works as well for you as it does for me.
Ayla
We vascukitis folk are all a little bit different in that it takes time to sort out the optimum treatment for each individual.
After my cyclophosphomide, I swithced to a cocktail of azathioprine and prednisolone. However the dosages were probably too low and I duly relapsed three years later.
I then switched to Mycopenolate and prednisolone which gave me joint pains and a severe skin rash. So I then swithced to Methatrexate which gave me severe breathlesness and led to me being so unwell I had to spend a week in hospital to "flush the metatrexate out of my system.
After this, I suggested that I go back to Azathioprine at a higher dosage with a higher pred dosage, the latter reducing over time. My consultant accepted my suggestion as I had shown a good toleration to Azathioprine a few years earlier.
Since this( 3 years ago) I have been OK. However, attempts to reduce the prednisolone to 5mg daily have resulted in me feling unwell and experiencing regular joint pains.
The moral of my story is that the treatment is patient specific in the context of a small list of medications with dosage also being patient specific. Keeping a diary of side effects and genersl wellbeing also helps. The other moral is that it is a joint discussion between you the patient and the consultant.
Good Luck
Dear Scot1,
I was pre-dialysis, for about eleven years, during which time I was on azathioprine, prednisolone along with phosphate binders-necessary for kidney patients. I was then on dialysis, for almost exactly four years- with a very similar drug regime. After my transplant, last July, I was put on Mycophenolate Mofetil, along with tacrolimus, whilst still maintaining 6mg Prednisolone (I believe this was raised slightly, for a very short time). I have been on this drug regime, since the transplant, with no significant side effects although the tacrolimus level has been reduced down, over time. What hospital/consultants are you under? I'm under Addenbrooke's currently though, I'm hoping, to be transferred back to Ipswich soon- I was under them for some years, when pre-dialysis.
Please do let me know how you get on Scot.
Best wishes AndrewT
