Vasculitis

[Abdul]

Iv just been diognosed with vasculitis . Doctor Put me on 3000 mg mycophenolate to be taken 3 tablets at morning and 3 at night and 80 mg prednisolone . I feel really tired all over the day with a very strange mouth taste and blurred vision . Has anyone got the same side effects from the same medicines ?

[Ayla Volunteer]

Sorry to hear you are feeling bad, Abdul. Your specialist has given you some very high strength doses of mmf and prednisolone and I am not surprised that you are feeling rough.

I am no expert but will share my own experience so that you can compare. I was started on 60mg prednisolone and 1500 mg mycophenolate mofetil last June. I felt terrible, far away and not connected yet 'wired', really tense and as though I was plugged in to an invisible electric current that didn't allow me to rest. This continued until the prednisolone dose was significantly reduced, I would say to 30mg. Thus, for me, it seems that it was the prednisolone causing the problems. I did not get the blurred vision or strange taste in the mouth but I was certainly frighteningly tired.

Would it be worth your phoning the specialist who prescribed your medication to tell him of the side effects you are experiencing? He may wish to alter the dose. Has he told you how long you will be on these doses? It would be useful to know more.

[milliewin]

Hi what type of Vasculitis do you have? I have Cerebral Vasculitis and was treated with Cyclophosphamide for approx 7/8 months and I have been on Mycophenolate for the last 3 years ? I have just come off it and have been put on Methotrexate to treat my Rhematoid arthritis? I think not many people are on Mycophenolate. It was certainly trial and error for me but has kept the Vasculitis in remission? I was also on prednislone for a couple of years. I have certainly have overwhelming fatigue and other symptoms such as regular chest infections and bad diorrhoea and cough but havn't had the strange mouth taste nor blurred vision apart from feeling very tired. I know there is a very long list of side effects for Mycophenolate so I would'nt be suprised if your side effects are on that list? Good luck, I dont know what type of Vasculitis you have but despite the side effects it has definitely been worthwhile for me?

Best wishes

Sarah

[Abdul]

Thx for your answers , according to my consultant my vasculitis is WG , he didn't answer what it is the reason behind the strange mouth taste and blurred vision . My eyes are affected from vasculitis so I got red eyes and I thing blurred vision is due to vasculitis it self . I will see my doctor next Friday and ask him again about the side affect . He is concerned about the high does of steroids Im taking now and he is planning to consider cyclophosphamide instead of mycophenolate . I intially refused cyclophosphamide due to the seriouse side effects but my doctor insists that it works faster and better than mycophenolate .

[John_Mills Volunteer]

Your doctor is right Abdul. Mycophenolate is usually used as a maintenance drug. My husband John has WG and he was given Cyclophos infusions when first diagnosed 11 years ago, followed by Azathiaprin but Aza did not control the WG so John stayed on oral cyclophos for a while until the consultant prescribed Cellcept. In the early days John suffered with red eyes but not now.

John has been on Cellcept for about 6 years now. Cellcept also seems to work for John but he does also suffer from over whelming fatigue, but this can be down to the WG . It is also thought that WG can cause muscle weakness too. There is a a big research project taking place at Birmingham Hospital regarding fatigue and Vasculitis and the results should be available in 2013.

All the drugs used to treat Vasculitis have side effects but it is a case of weighing the side effects of the drugs against the WG activity. John consultant says it is a balancing act. John was taking steroids for ten years, he tapered them off very slowly towards the end and he finished taking them last summer. Steroids also have there own side effects and doctors do not like to use high doses for long periods of time.

There is now drug called Rituximab to treat Vasculitis but it is expensive and not all PCT's approve it and it is usually used for relapsing Vasculitis but you could talk to your consultant about it.

If you want to talk to John any time please do his email is [e-mail] take care Susan

[Abdul]

Thanks Susan , I'll keep in touch with you and John . Wish you all the best .

[Sarahjh2004]

Hi,

I would definitely ask about the high dosage of predisilone too. Whilst on the emergency ward recently I was told 80mg was the highest threshold. Steroids have a huge impact on someone. I have coped on 2000Mg cellcept for2 years but the predisilone have been a totally different story. Are you on medication to combat their side effects? And do you have a blue steroid card? Its amazing how many pharmacists forget to give you one.

Good luck

Sarah

[Abdul in reply to Sarahjh2004]

Hi Sarah , yes I take other medications to cope with steroids impact . I take Lansoprazole 30 mg capsule at morning at least 30 minutes before breakfast to protect my stomach from ulcers caused by steroids and cellcept . I take Alendronic Acid 70 mg tablet once a weeks which functions to prevent lose of bone . And yes I have steroids blue card but I fun think its seriously important to have one as long as you know how strong is your med. and remember to mention it each time you talk to a doc. or pharmacist .

[Tony-LakeDistrict]

Hi Abdul, I found Alendronic Acid wiped me out for days, on top of every thing else I was taking, Are you finding you are more alert a day or two before taking the next dose, Worth asking your Doctor if you can take it once a fortnight, I did & it gave me a few days respite. do check with your doc

tony

[Abdul]

Hi tony , I don't think Alendronic acid has more impact than steroids and cellcept . I don't feel any difference when I take it but Ill have a word with my consultant regarding its side effects .

[milliewin]

Hi, I had a very high dose of Steroid and Cyclophos and then Mycophenolate and while on Steroid I took Alendronic acid weekly and Adcal D3, I also had a bone scan which showed no sign of any problems. I also take Omeprazole to protect stomach, so far so good but am now moving to Methotrexate which seems to also have lots of awful side effects, is anyone else on this?

[Abdul]

I started with 80 mg steroids and still on the same dose after a month but I refused cyclophosphamide cuz I got some concerns about fertility and took mycophenolate instead , anyone has experience with cyclophosphamide and have you try fathering after cyclo ? And wat was the result ? My consultant insist that I need to consider cyclo . again .

[cedric]

I have blurred vision but not servere sometimes dry mouth I am on 1500 mg per day