Is anyone taking Myfenax as I've just been prescribed it today

[prudence]

[Ayla Volunteer]

Yes, I take it. It is mycophenolate mofetil, just like Cellcept, the well known version, except that it is sweetened with sugar and not aspartame. I have had no problems with it, no side effects that I have noticed, and it works well. I have been taking it for 18 months.

What dose has been prescribed for you? I take 1500mg per day, split into 2 x 750mg doses morning and early evening. I believe the standard dose is more, 2000 mg a day, but 1500 is doing the job for me, so my consultant is happy to leave me on the lower dose. It is usually linked with daily prednisolone. Are you taking this, too?

Ayla

[prudence in reply to Ayla]

Hi Ayla I have to take 1000 mg per day split into 2x 500 mg one morning and one evening , they might increase it gradually over time. I'm take 15mg of prednisolone at the moment they will start to decease if this works for me (had been on 60mg )in July do you have WG ? I had been on azathioprine but it was making me sick . Thanks for your reply x

[Ayla Volunteer]

I was started on 1000mg daily, too, Prudence. It was increased, as I remember, very quickly to 1500mg. I think that was after a couple of weeks. They took blood tests at that point to make sure that my body was coping ok. Your pred dose sounds about right in terms of it being the same as mine at the time I started with Myfenax. I am now on 7mg of pred a day - my specialist likes to lower the dose really slowly and I reckon I will be on this dose for some months yet!

I have MPA. After my kidneys became involved in March 2010, and things were going downhill fast, I was started on cyclophosphamide and high dose prednisolone. After 2 months, because the cyclo was adversely affecting my liver and because azathioprine has the same tendency, I was put on MFM straight away, along with prednisolone. This was before the specialist was sure remission had been achieved. Fingers crossed, it worked!

Don't worry about the Myfenax. It seems to be generally well tolerated and is usually pretty effective.

Good luck!

Ayla

[tracey65]

hi i been on it for about 3yrs now dont seem to have any side affects,was put on it because of kidney failure.good luck

[Chris-Bromsgrove]

Hi Prudence

I have also been put on to Mycophenolate just over a week ago. I was taking Azathioprine but it seemed to be causing headaches and a general feeling of malaise. I started on 500 mg of Myco twice daily which will build up to 2000 mg per day if I tolerate it (not sure what they meant be that). I also take it with 5 mg of Pred. It seems to be doing the trick; no adverse effects and the headaches seem to have gone. I say seem to have gone because I’m suffering from blocked sinuses due to a cold virus (no sense of smell at all). Good luck with it

Chris

[prudence in reply to Chris-Bromsgrove]

Thanks Chris fingers crossed this time !

[suzyjeremy]

I am on myfenax, I started a few weeks ago when it was discovered I could not tolerate azathioprine because it inflames my liver. I started on !000mg daily and its now been doubled up to 2000mg daily. I am having weekly blood tests at hospital to monitor it. My pred has been reduced from 12.5mg to 10mg. I have had no problems until this week. Usually on a Tuesday after the blood tests in the morning the hospital rings me in the afternoon to tell me whether I can carry on taking it. The consultant has told me not to take it unless I have had a confirmatory phone call. For some reason they did not ring until Wed afternoon so I missed my dose on the Tuesday night and Wednesday morning. On Tuesday evening I had two glasses of red wine with my evening meal, this being the first time I have drank red wine since taking myfenax, anyway the following morning i awoke ar 4.00.am with a blinding headache, was sick and nauseous and could not bear any light and for the following few days it seemed like I had the hangover from hell. I am a lot better now although I have some chest discomfort. I really don't know if it was missing the the two doses a reaction between the meds and the wine or just the fact I had two glasses of wine. I can tell you one thing though there will be no red wine for me in the future.

[prudence in reply to suzyjeremy]

Oh thanks Suzyjeremy I am starting mine today , will remember not to drink red wine with it ! The hospital has asked my GP to take my blood next week then back at hospital the following week to see my consultant ,hope I'm ok on this one

[milliewin]

Hi, I took Mycophenolate for 3 years after Cyclophos and was able to come off all my pred thank goodness. I had awful diarrhoea but it did the trick. I took 2g/day split am and pm. While on it I did develop generalised muscle pain and joint swelling but no idea if that was to do with the meds though and now off Mychophenolate and preds and on Methotrexate and Rituximab? Never ending drugs!! Good luck with it and hope it wprks for you too!

Sarah

[prudence in reply to milliewin]

Thanks Sarah x