Mycophenolate

[Melaxx]

I’m stared today this drug ( mycophenolate) 500 mg 2 twice a day with regular blood tests . Anyone on here on this drug , I’m a bit reluctant to carry on after reading all side effects. I wonder if give steroids another try and take the hydrochloride immune suppressant like I’ve been doing for years ... the reason why they put me on this new medication is my CK Inflammation is very high , I find it very difficult to walk up the stairs , uphill or lift my legs . Thank you 😊

[MEW53]

Hi Melaxx,

I’m on Mycophenolate mofetil and have been on it since 2015, I take 5m

This drug has made a big difference to my life. I have polymyositis with a Scleroderma overlap and take 5 mls twice a day in liquid form which is 1000mg (1mg). I was unable to walk and was bed bound for a year, once I started on it I noticed a big difference in 3 months. MY CK markers were very high.

I have monthly blood tests and I am monitored regularly. I think the benefits outweigh the side effects. I am walking with a stick now.

Read the instructions carefully in case you get something really odd but worth giving the drug a go if medical advice suggests it

I’m on 5 mg of steroids daily now but in 2015 I was on 35 mg. this drug takes several weeks for it to work but it has certainly helped me.

Good luck.

[Oshgosh in reply to MEW53]

Thanks f your positive post. Started on this drug last week.everything crossed !,

[Oshgosh]

I started on. Myclophenate last week.

Was on Azatropine,but it mad3 my liver enzymes go high.

Really want to take Myclophenate to work. I can’t go on as I am - constantly detioriating,more short of breath every day.

They won’t leave you on steroids indefinitely because it affects your bones adversely. I just can’t wait to get off steroids. I’m worried about the effect it’s having on my bones and my adrenal gland . When I Went on Azatropine ,my sister in law asked if I wasn’t worried about the side-effects. My reply was I just need to stop the deterioration .

They do keep a close eye on you.

The consultant rang me ar 5 pm to tell me to stop taking the Azatropine.the bloods were only taken at mid day.

So I did feel reassured that they take blood results and side effects seriously.

Hope things go well for you

[Melaxx]

Hi, thanks for reply , just wanted to ask if you putted any weight on or lost any hair on Mycophenolate and steroids? ( you don’t have to answer if is to personal ) bs I feel to eat all the time at the minute and I had my last period I June none since , I guess I’m menopausal, I’m worry I’m going to ballooning .

[Oshgosh in reply to Melaxx]

My hair has been awful for years.

I got fed up with it and bought a wig earlier this year.as I was running out of ways to comb my hair. Does give me more confidence,even thou I don’t wear it all the time.

Since I came off Azatropine,I have got hair growth where there was no hair before.

Goodness knows what will happen now I’m going on Myclophenate

[Biff240]

Hi

I take 6 x 500mg of mycophenolate a day it's my life saver.

Not only does it let me walk most of the time it stops my SLE attacking my organs.

Never read the side effects if you're as bad as me the side effects are nothing to what the condition is.

I hope it works as well for you as it does for me but it does take months to kick in.

[Lily77]

Dear Melaxx, I was prescribed mycophenolate and within two days felt so much better, my energy rebounded, the pain went. I felt amazing and like my old self. Unfortunately, 11 days in I started to feel nauseous and was unable to tolerate what was for me a wonder medication. After a second attempt three months later, with the same result.....11 days great, then crash, I had to take the slower, less effective Azathioprine. I very much hope that you can tolerate mycophenolate (regular blood tests should be part and parcel) and send you my very best wishes, Lily

[Frosty1960 in reply to Lily77]

I had the same problem with it had to stop it aswell, had a trial on hydroxychloroquine and mepacrine but still not working for me, awaiting more results as to what can be done next. 🙁

[Lily77 in reply to Frosty1960]

Thank you for letting me know that you had the same experience. A nurse did tell me that others also found it toxic but it is always nice to know that I am not alone! Sorry to read that your replacement trial was not the solution and hope that you are found a better combination soon. I was helped by an infusion of corticosteroids to get me going. With my very best regards, Lily

[miccika1]

I've been on it for many years, nothing special. I'm wondering thou why aren't you on hydroxycloriqinine too? That's much more impactful and easier on the body medication. Myfortic is usually an add-on to hydroxycloriqinine, not a replacement.

[Melaxx in reply to miccika1]

Thank you, I’m on hydroxycloriquine but I wasn’t sure if I had to carry on taking it , the consultant I see I rash you through the appointment and I forget to ask important things , I’m seen him again in two weeks time.

[WinterSwimmer]

Mycophenolate is the only drug I’ve been given for lupus that has made me feel better. No, it is not side effect free but they are things I can live with more easily than I can live with active lupus. Don’t give up on it too soon. Hopefully you will begin to see the effects in a few weeks. Good luck.

[ShannonB]

I have taken it for more than five years and it has made a huge difference in my quality of life. I don’t have any issues with it.

[KatieRL]

I’ve been taking Myco for 16yrs since I had my kidney transplant. SLE has made me allergic to so many drugs but pleased to say Myco has worked well for me and I’ve not had any side effects. The only problem I had was when the hospital changed brands, however I’m now back on Cellcept so problem solved!

[Melaxx in reply to KatieRL]

Thank you everyone, you made me feel a lot better 😊, this site is great, every time I worry about something I come here and you beautiful people are always here to help. THANK YOU 😊 x

[blondie22]

I am on my third week on it. I did have funny turns in the beginning, felt like I was drunk and losing balance. Now I'm not so bad. I cannot take them with my gabapentin though as I just fall asleep which is a losing battle as I take them for pain. But I'm getting there slowly. Take it easy they do take time to get into your system. Its not fully in mine yet but I have felt some positives.

[Meg52]

I Melaxx

I’ve been taking Mycophenolate mofetil since April. I now take 1 gram twice a day. Initially my reflux flared up a bit but I take gaviscon 4 times a day and it seems to have settled down again. I’m not sure how much the mycophenolate is helping me as I have got quite a lot of other lupus related things going on but I don’t seem to have many side effects at all.

Good luck, I hope it helps you.

Meg x

[panda2]

I've been on Mycophenolate for a year and a half and swear by it! It's meant to be steroid sparing because, as Oshgosh pointed out, steroids have a difficult cumulative affect on the bones in particular. I did have to try 2 brands of Myco before my body would accept the Cellcept brand. I could not take Myfenax. There is also Myfortic brand if either of those don't work. I personally think it's a terrific drug.

You would most likely be advised to continue your Hydroxy with this. According to Donald E. Thomas (who wrote The Lupus Encyclopedia), Hydroxy can work better in combination with an immunosuppressant.

It can take some time to see the benefits, but it does make such a difference.

Panda x