Hi everyone just an update from my last post- went to see consultant today and he prescribed me mycophenolate to take alongside my other medication. I have to see him every month and get bloods done every 2 weeks. Has anyone else had this? Any side effects I should look out for?
X
Hi,
I am currently taking mycophenolate twice a day and have been on it for a year now.
This is a magic drug for me and has really helped me loads.
It seems to make me tired, but just pace myself, I am shattered by 9pm.
I have regular bloods and urine tests monthly to ensure everything is ok. You need to keep out of the sun or at least use a high factor sun cream. Read the instructions fully there is a lot to read. I have had difficulties sometimes getting hold of the drug, so don't leave requests till the last minute. My delays were due to manufacturing problems. As I am on a suspension as I can't swallow properly, I was told to stay on the same brand all the time. In the beginning my bloods were done quite often till everything settles down.
Anyway, good drug as far as I am concerned, hope it goes ok.
Good luck
Margaret
Hi, I have been on 2 x 500mg mycophenolate twice a day since November 2014 along with hydroxychloroquine, steroids and others. It has helped me a lot. At first the mycophenolate upset my bowels which could mean I would have to wait before leaving the house. I was recommended to take probiotic drinks every day which I did for about a month and everything calmed down. I have to say I think the mycophenolate speeds up the transit of food in my body... I am slightly built, always hungry, constantly eating but never putting an ounce of extra weight on. That sounds ideal to some people but I had lost 10 kg in 2014 and am now rather too thin.
Yes I had monthly rheumatologist appointments for about 6 months after taking mycophenolate then 3 months between, now 6 months. The blood tests were every 2 weeks, then every month and since January 2016 they are every 2 months. Since taking mycophenolate my steroids have been slowly reduced and now I only take 5 mg every other day.
Mew53 is right you will need to be good about using factor 50 all the year round.
Good luck!
Happy to hear your doctor is willing to put you on stronger meds, as your current meds were not working. I have been on mycophenolate for 3 years now, with almost no side effects. I think it is common to experience some stomach issues when first starting. I did experience once a drop in white blood counts, which can be a side effect of the drug, and had to stop for a short time. This is why you need to monitor your bloods regularly. After a few weeks or months, your doctor may require you to get bloods done monthly rather than every two weeks. Also, you may be more vulnerable to infections so be vigilant with hand-washing! I hope this works for you, I know many on this site have tried MMF and it has worked wonders. It takes a while to really start feeling the benefits, however.
Mycophenolate has made my life livable! I can't believe how much it helps. I still get fatigued by tea time, but I can actually do things during the day. I was medically retired last August at 52 which hurt. I started mycophenolate in November. It's March, and I am able to work some days on my allotment. Don't be scared of trying different drugs, they can really improve your quality of life. Good luck 
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