Medication question

[Chazzi]

Has anyone been prescribed Mycophenolate for vasculitis ulcers I have them on my foot and they are so painful. so my consultant has prescribed them for me whilst my rheumatoid Con told me to reduce my steroids to 5mg per day ( I have been on 10mg for a while now 10 years infact ). With various doses trouble is I had a massive flare and could hardly walk and now I have been told to go back up to 30mg per day for two weeks it seems that you seem to go round in circles. Does anybody else dream that they will go to bed and wake up being normal.

[lou1972]

Always have that dream. I'm feeling a bit better at the moment and funny enough I took a photo of me on Friday night with my legs curled up on the sofa watching TV something I have not been able to do with legs for a long. So when I am bad again I can look back on the photo and ssee that I was okay once. (Hoping not going to be bad for a good while)

[Chazzi in reply to lou1972]

Good to hear your feeling better at the moment

[Samisntverywell]

When I started mycophenylate I was told it took a while to start working (like months even a year before you see any effects). You'll have to talk to your medical people and make sure they're talking to each other! I wonder if you needed a bit longer for the mycophenylate to get working before the steroids were dropped? I don't have ulcers, but I used to have the dream. Now I have an imaginary story that if I get well I shall train the hawk I've always wanted and stride across fields and rough ground in cold bright weather with my arm outstretched with the hawk on my gauntlet. I probably won't manage it, but it's a powerful and sustaining idea that has the effect of bolstering me up!

Sorry to hear you're feeling so poorly, sounds a miserable time. Hope you get sorted out soon.

[Chazzi in reply to Samisntverywell]

Thanks for your reply its good to know that you have a dream as well

[2534]

Hi Chazziin

I was on Mycophenalate motefil for 18 mths, quite a high dose and it didn’t do anything. Previously I had Cyclophosphamide and Prednisolone for 18ths and that did not do anything. Now I am on Rituximab for two and a half years and little by little it has got better and I do not have ulcers now. It was important for me to find a Vasculitis specialist. I did not find Rheumatologists so knowledgeable. I am now with Dr David Jayne at Addenbrooke’s

Take care

[Paprika60 in reply to 2534]

Hi, I too had Rituximab 5 years ago and it has knocked my white count very low and it is still staying low. Do you have similar situation? My neutrophil is 1.5 and my doctor is concerned. Trying to see if this is common with Rituximab therapy. Do you get it regularly? I haven't as I didn't do well with it.

[2534 in reply to Paprika60]

No my bloods so far have been reasonable. I have been warned that I could fine my immune system starts to weaken over time

[Paprika60 in reply to 2534]

Thank you for letting me know.

[Chazzi]

Thanks for that my RA con is taking of taking me off of humira and putting me on rituximab so I will have to see whether that helps trouble is all these things take time.

I really wanted to be feeling better by May as my youngest son is getting married so fingers crossed

[Paprika60]

I completely understand how hard and dark it feels to be in your situation...doctors pumping you with high dosages and not much feeling better. I used to be on MMF too for a few years and it is true that its effect is very very slow working. It is one of the safer immunosuppressant from my understanding but it didn't do much for me and in the end it made me feel worse and I discussed it with my vasculitis doctor (very kind and warm!) with this wish and in the end he agreed. Everybody reacts differently to drugs and it is important that you listen to your own body, very difficult when everything is so tough and painful but you still have to understand if something makes you feel better or not. Your doctor doesn't know how your own body will respond. Only you can. Hopefully Rituximab will help you but in my case my white cell count got so knocked down and it has not so far recovered for the last five years. It is still very low and causes me daily trouble. But I do know many responds very, very well. So hopefully you will too. But do please try to get down to 5 mg of prednisolone, very slowly but surely. If you go down from 10mg to 5 mg. all of sudden, you may end up with a nasty flare. Because you have been on high dosage for 10 years. I would discuss with your doctor and slowly taper it by 1 mg taking months if necessary with each tapering. It has taken me 5 years to go down from 10 mg. to 1 mg. now. With patience and all these other alternatives, you can. Oh, yes I do dream and wish to find myself as my old healthy self once again. I visualise washing in waterfall with its healing water and walking out with healed body. And I don't think of it as a dream. I think of it as a reality that will happen one day. I believe that I will go into a remission for the rest of my life. Someday it will happen. Good luck and all best wishes!!

[Chazzi]

You sound like you have been through the mill as well. Thankyou for your advice its good to hear other people's points of view as it's a lonely illness and as you say what works for some doesnt work for others it sometimes makes me think that the treatment is worse than the illness. Because I have been on Prednisolone for so long i have osteoporosis with back fracture now. Thankfully these are not painful just doesn't look to good (that's me being vain ) but I'm sure there are people in this world a later worse off than me. Take care and thanks again for you advice

[Paprika60 in reply to Chazzi]

Sorry to hear of your bone condition! Are you not taking weekly remedy that will compensate the loss of bone density and recover from this? I met a lady who had similar issue and she told me her bone is back to strong old self again. Do ask your doctor for it!

Hope you are taking high dosage Vitamin D and calcium now.

[EdieBD]

I have been on it for years. Since it is not desirable to be on steroids, many doctors treat some autoimmune diseases/conditions with spare you from Prednisone . I take 6-500mg per day when in a flareup and 4 pills when in "remission". I am diabetic and I couldn't really handle the steroid daily without a spike within days without extra intervention. I have urticarial vasculitis and chronic hives (a bit unusual to have both).

[Chazzi]

Thanks for your reply