Burning sensations

[starfish69]

Hi is anyone else using mycophenolate and getting a ridiculous amount of burning sensations in their limbs? I'm currently on 3 500mg tablets twice a day plus a tapering dose of methyl prednisone (currently 17mg)

Suppose I should have started by mentioning it's for focal cerebral vasculit is

Cheers

Darren

[Suzym2u Moderator Vasculitis UK]

John has been taking MMF for about 8 years now, was taking 2,000 mg per day now taking 1500 mg per day. He does suffer with burning sensations in his feet quite often, I will ask him, but I think he puts his down to the Vasculitis, he has WG. But I will ask him.

Susan

[starfish69 in reply to Suzym2u]

thanks Susan I'm unsure whether it's the stroke damage or the drugs making this happen but it's probably a combination of both id imagine.

Darren

[AndrewT]

Dear Starfish69(love the name),

I don't have you condition, I'm 'uncategorised ANCA positive, but am on Mycophenolate-750 mg, twice daily, along with various other drugs. I don't get, the symptoms, that you describe but do get occasional 'burning' in the mouth. I also get 'odd' aches & pains, 'tummy troubles' (don't we all!), and itchy (dry) skin.

What is caused by the drugs, if the leaflets are to be believed-anything is possible, and what by the condition, I can't say. Personally, I have to say, that a few 'niggles' is fine, by me, since I am still alive.

Sorry if this isn't much help Starfish, just be thankful that you are alive, despite everything. Best wishes.

AndrewT

[starfish69 in reply to AndrewT]

Thanks Andrew you're right you do have to be thankful that you are in the world of the living and sometimes you have to remind yourself of that fact.

Hope everything is going well for you

Darren

[lancrose]

3500mg is quite a high dosage..best to report this to the consultant. Could be nerves are affected and it could well be a side effect.