Hello everyone.
I havent posted in a while. My baby girl is now nearly 2. How quick do time fly. I havent been well at all lately and working 3 days a week, getting up at 5am have been a killer lately. On Monday I got prescribed mychphenolate. Last night I had a funny turn which wasnt my normal. Have anyone on or been on these tablets and how did it effect you?
Thank you
Hi Blondie! I gave mycophenolate a go after having a reaction to Azathioprine. At first, it seemed promising. I was tolerating it without issue since I was only on 500. When I increased to 1 GM, I definitely had side effects that seemed related to malignant hypertension. Very high blood pressure (200/100), headaches, blurred vision, dizziness. Although these aren’t common side effects, they were pronounced for me especially as I tried to increase the dose. It was the start of a spiral where I felt like I had reactions to nearly every med I took. It quieted with Plaquenil and allergy meds. I’ve never tried it again and my rheumatologist doesn’t ever want to try again.
Not sure if this is helpful at all. I know many people have nausea with it which subsides with time - I here it takes a few weeks. It’s also good to increase stepwise over a few weeks to help mitigate side effects. It seems to be a generally well tolerated medication for those with lupus nephritis and it’s reassuring to know that transplant recipients take this stuff by the boatload with little to no side effects.
I’d definitely communicate concerns with your pharmacist or doctor. They will be better able to help based on the symptoms that you are having since lupus can cause just about anything.
Hope you feel better soon!
Thank you so much for your reply. Last night I was losing balance as if I was drunk. Felt really fuzzy. I'm only on 500mg twice a day for 2 weeks then I will need to increase. They have replaced that so I dont take the azathioprine anymore. Did the plaquenil work ok for you? I am scared about the side effects as I don't want it to effect me able to look after my girl. I do push through flares which I know I shouldnt but my girl needs looking after.
Plaquenil definitely worked for me especially with skin manifestations and joint pain. It also normalized my blood counts so my lymphs are now normal and I’m not chewing up my platelets. I think Plaquenil is definitely easier to handle and less toxic than mycophenolate in my opinion. Plaquenil just takes a while to work and it’s effects don’t come overnight. It takes a good couple of months and you really don’t notice how well it works until you miss a dose. Mycophenolate works better for those with kidney involvement but there are other options outside of this that are still used for lupus nephritis if this is what you have.
I’d contact the prescribing physician right away about the effects you are having. Your reaction sounds similar to mine and they are scary. Pushing through is what makes us warriors. Everyday is a battle. Hope this helps!
That do make a lot of sense. I do have a lot of joint pain and I swell a lot which I'm on co-codamol, naproxen and gabapentin for. I have got lupus sle. It's all a guessing game now and figuring out what will work. I am happy you have found the right medication. I do get light headed and fuzziness anyway but not as bad as they have been since being on the tablets. I wasnt expecting any symtoms as soon as I started taking them. I will speak with my rheumatologist today.
I have been taking Cellcept for 10yrs without a problem, however the hospital changed Myco brands about five years ago and it made me terribly ill. Eventually I was allowed to take Cellcept again and I started to feel better. It took 3 months to get back to normal. Speak to your Lupus Doctors and let them know what’s happened, they can then advise what you should do. Lupus makes us susceptible to drugs and brands so it’s always best to check.
Hi blondie22 hope you're feeling better?? I've been on mycophenolate for sometime now and it works for me. I've had lupus nephritis sle for over 15 years now and I take 38 tablets a day and this tablet agrees with me however I used to be on azathioprine and it didnot agree with me that's why my Professor changed it. What other medications are you on atm??
Hello Donnascottches.
It's great to know they have worked for you. I got diagnosed 6 years ago with sle. I was taking azathioprine for around 4 years and they have stopped that now and put me on mychphenolate. I take co-codamol, naproxen, gabapentin, lanzoprazole, fultium D, hydroxychloroquine, along with my pumps if I need them.
Hi blondie22 how are you feeling now any better?? Here to talk to anytime my fellow lupie warrior 👍🙂
Yes, lots of side effects can be common for the first month or two. I had a multiple of random side effects from nausea, dizziness to random hand tremors and hair loss. It’s an immunosuppressant so many people find their bodies have to adapt to the medication. However I’ve now been on them for 5.5 years roughly, and haven’t had any side effects at all since the third month. After six months my bloods were under control, as was my kidney damage, and it’s been relatively stable since then. That doesn’t mean I’m “well” or don’t have symptoms but blood test wise it’s a huge improvement.
If you are concerned definitely discuss with your consultant, but don’t give up yet. It’s too early to tell anything. Also, make sure you try your bloods done every month and be aware of live vaccinations for you and your child. There are often safe alternatives or ways around them.
All the best x
That is reassuring thank you. I am just scared mainly as I work 3 days a week and I'm a mam to a nearly 2 year old, I got a partner who also works full time but I'm scared incase one day I wont be able to look after her if I'm having a bad reaction.
I hardly see any side effects in the morning I can feel it but when I take it again at night I feel it more which I find is weird.
I’ll be honest and say the time thing does seem a bit odd to me. The half life on mychophenolate is quite long so you wouldn’t expect to notice a real difference in side effects through the day. It can also take weeks to build up in the system so it is quite early to be experiencing side effects on the lower 500mg twice a day dose. I don’t think mine started until I got onto the higher dose, which I understand is quite common.
It might be worth getting checked by your GP to make sure you haven’t got an infection or a deficiency that’s making you feel this way. For example laryngitis can cause you to feel exactly how your describing, as can anaemia. It might easily be side effects but always worth checking as it might just be a coincidence.
All the best x
It really is odd. It do still happen but each night it is getting easier and its dying down so I'm hoping my system is starting to slowly get used to the tablets
Thank you phillioppo I will have a look at that
I was on it for about 12 months I had a few funny turns , I’m off it now currently on infusions.
I've had a few but I cant take it with gabapentin I just makes me fall asleep. What are infusions if you dont mind me asking?
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