Mycophenolate

[Mish-da]

I’m due to start mycophenolate next week due to continuous side effects of the methotrexate injections. Would love to hear your experiences. Was also wondering whether potential side effects happen straight away or if after a few days as need to prepare myself regarding work.

Many thanks

[John_Mills Volunteer]

I took it for about 9 years, it seemed to clinically keep the GPA under control and I did not suffer any noticeable side effects. One thing to watch out for is loose stools as this can be quite common. It is important you are monitored well.

[Mish-da in reply to John_Mills]

That’s good to here well apart from the loose stools! I’m hoping it’s the medication for me, having had 3 weeks without methotrexate I’ve only recently noticed the impact it had on my general function #fog brain.

[Tony-LakeDistrict]

Hi, as far as I remember,I had no noticeable side effects.

you can find if you are on Mycophenolate for an extended period of time, for me 10 years, it starts to have side effects. For me they were complete lack of appetite & diarrhea.

Now I am on Rixomobab I know I haven`t spelt it right , again no side effects.

Wishing you a problem free change over

Tony Poole

[Mish-da in reply to Tony-LakeDistrict]

Thank you Tony!

[AndrewT]

Dear Mish-da,

I was on Mycophenolate, for about a year, after my Kidney Transplant. I have to admit, that if I DID have any Side Effects, they were Lost in all the overall 'Experience' of the Transplant. My Consultant, did reduce then stop, this drug due to the amount of- immunosuppressant related- Skin problems that I was, and do, suffer from.

I am NOT complaining, quite the reverse in fact, I am Still ALIVE Twenty-Two years after I was not expected to survive an HOUR! (Just a thought, if you DO have an Accident, in your pants....well actually, so what! I wouldn't worry, I DON'T worry, in fact.)

I hope that this has 'Reassured you' Mish-da.

AndrewT

[Mish-da in reply to AndrewT]

Wow! So pleased to hear your doing well!

[AngharadJ5]

I felt better rather quickly when I stopped taking methotrexate injections. I started mycophenolate a few months ago and generally feel okay. I am getting some pains but I don’t know if that’s infection related. The only thing in terms of side effects that I’ve noticed is parts of my skin going dry

[Mish-da in reply to AngharadJ5]

That’s good to hear thank you!

[brown136]

i have just started mycophenolate last week .same problem could not get in with methotrexate,early days i feel 100%

better yes it could be the steriods masking the gpa however i am more postive .hope you get on well with it.

ian Brown

[Mish-da in reply to brown136]

Keep me updated brown136 hope it works well for you

[brown136 in reply to Mish-da]

will do

[brown136 in reply to brown136]

Hi Misha -da unfortunately mycophenolate hasnt worked

went in to hospital yesterday for a biopsy

and it was confirmed it had spread to my kidneys. so now i start cyclophosphamide treatment next week. no looking forward to this and the side effects. weeks of treatment .in hind site should of been on this from the start as john Mills had advised me to be on .The Doctors meant well ,however they do not understand vascuilits.. so i would get on cyclophosphamide soon as possible

all the best

Ian

[Mish-da in reply to brown136]

Hi Ian so sorry to hear your news I do hope the new medication helps and the side effects are less for you. Have you asked for your care to be transferred to a hospital that specialises in vasculitis?

I’m Currently under two hospitals with two issues that may well be linked to the vasculitis.

My consultant at Papworth hospital has advised me to get my care transferred to Addenbrookes which has a specialist centre.

Seriously considering this as Mycophenolate isn’t working well for me either.

[brown136 in reply to Mish-da]

i did however my consultant was i bit reluctant on a 2 nd opinion,yes he would then again it would take time for all these arrangements and he did think i was mild gpa unfortunately he got it wrong.

they mean well , but who likes to br told anyone

anyway i got there in the end cyclophosphamide treatment starts

26th july keep you in touch

Ian

[Tiss]

I've been on mycophenolate for the last two years after having problems with azathioprine. I've not noticed any side effects and have now managed to come off all other medication. Good luck with your journey. X

[Mish-da in reply to Tiss]

Excellent news hope I’ll be in your position one day!

[cedric]

I am on mycophenolate having problems now after 7years but I don't if it's down to mycophenokate I will know monday

[Mish-da in reply to cedric]

Hope you get some answers Monday. Let me know if you can!

[Cherrypie-68]

I am on mycophenolate and have been for about 4 years. When I first started it wS great. The past year have brought out many side effects.

[Mish-da in reply to Cherrypie-68]

Hi cherrypie sorry to hear this may I ask what your side effects are?

[Hadley1234]

Hi I have been on Pred since January 19, and was given Methotrexate pills, I have G.C.A/PMR and L.V.V … I had a lot of side effects on Methotrexate I had to come off it, and have started Tocilizumab, I have felt exhausted since January, and I was told this is a side effect of the condition, I have been to the Vasculitis clinic today and mentioned it again ,, and was told to do gentle exercises , I have borrowed my daughters exercise bike, and am slowly increasing that it also builds the muscle you loose in your legs with the streriods ,