mycophenalate

[haulotte]

I have systemic sclerederma and due to go on mycophenalate in the next two months.What experience does anybody have of this drug and is it worth the risks involved

[fairy56]

Hello haulotte, I have been on mycophenolate for a few years now, and I weighed up all the pro and cons and decided that taking the mycophenolate was the lesser of both evils. I am closely monitored and have blood tests every 3 months now, when I first went on them , they were weekly, then fortnightly, then monthly and now every 3 months. But at the end of the day it is a decision only you can make. I would only add that if it slows down the progress of the condition it is worth it in my eyes. Take care, smile and wave, smile and wave. xx

[MEW53]

I have been on mycophenolate mofetil for about 3 years and I seem to be quite stable on it. I have monthly bloods and urine checks and my rheumatologist sees me 6 monthly and every year ECG, lung function, gastroenterology visits as well as seeing a hand surgeon. The monitoring is good and my GP is very good, I weighed up all the pros and cons and compared to how I was on cyclophosphamide for the year before it is a much better option for me. I am in total agreement with fairy56.

Hope this helps.

[Wengc]

Hi, I've been on Myco for 18 months. Like the others I weighed up the pros and cons, and am pleased I decided to take it....I have regular blood tests with my GP and see the rheumatologist every six months, with an echo cardiogram and lung function test once a year. I did have some side effects when I started taking it, mainly digestive problems, but I stuck with it and they wore off after about 5 weeks.

I hope this is helpful....

Wendy

[naila_007]

Hello,

Its exactly 12 months today i have been on Myco and has helped greatly. Fingers are still curled cant make a fist etc but a lot better than what they were. Again like everyone else being monitored for bloods every 3 months - under 3 consultants who i see every 6 months and tests yearly.

Again as fairy56 states if it slows down the disease dont have anything to lose

Good luck!

Regards,

Naila

[Misty2552017]

Hi! I have Systemic Scleroderma, secondary Raynaud’s,GAVE (watermelon stomach) and anaemia. I was diagnosed 14 months ago.

I started mycophenolate in January. I experienced nausea and stomach ache to begin with but after reading comments on this site, I persevered and now can tolerate it. I have more better days but it did take three months before I noticed any benefit. The only thing, I seem to be experiencing hair loss! Has anyone else? I know that I’m 70 now but have always had lots of hair.

I’m having an iron infusion next week so hopefully will have more energy!

Good luck xx

[grannyannie in reply to Misty2552017]

Had an iron infusion in March as bloods were so low and had loads of minor health problems which my GP thought the iron might help. Positive outcome and I have maintained more positive blood results.

Best wishes .

[haulotte]

Thank you all for replying and being so positive. I will give it a go

[Deenam]

Hello. Only six months since I started taking mycophenolate. I had cramps iny hands and feet at first but it is fine now. I do regular tests as well. I know that I fell better though. I don't know other choices out there yet. Still new to this!

[SarahJane926]

Hi Haulotte,

I've been on Myco for about 11 months now and I've adapted to it quite well but like you I was very nervous to begin with.

They will increase your dose graduallyso your body has time to adjust and they will monitor your bloods closely.

For me the first 1-3 months were slightly uncomfortable, I did feel a bit nauseous and fatigued but persevered as I could tell, even with side affects that the pain in my hands and feet were decreasing rapidly so for me it was worth it. Since then I've been absolutely fine.

Like any medication it's foreign to the body and it shouldn't be there so be sure to eat well and look after yourself to help your body as much as possible x

[Rking50]

I will be going on mycophenolate at the same time you will. I was diagnosed in January 2018 but I had an ankle wound with MRSA staph infection. I finally got my skin graft today and 6-8 weeks I can start. I have done nothing but study my Diffuse Slero and all treatments. I am ready to start this even with the side effects because in 6 months I have developed ILD lung disease. This med is designed to help with lung damage. I will be starting on 4000mg because of this so unfortunately I cannot titrate up low dose to higher. I would like to hear you post your ongoing results with it. Though we all react differently I hope we both do well. Thank the rest of you for your advice and adding to my knowledge of 4 notebooks filled with notes. As you haulotte are doing keep asking questions explore the vast amount of information write out your questions and speak to your Rheumatologist. I learned having knowledge gives me power, hope and confidence.

[haulotte in reply to Rking50]

Hi Rking50, I will keep in touch and let you know how I get on. I have also got the lung disease.Good Luck