Mycophenolateand flu like symptoms

[adrienneioannou]

I was building up to a full dose of mycophenolate. As the dose was increasing I started getting pain like I have the flu. This is then making me not sleep. My nurse has had me stop my medication to see if pain stops. Any one else experienced this?

[Purpletop]

What flu-like pain are you experiencing? Muscle pain? While the body is getting used to a drug you could have few side-effects that are similar to a flare (in this case flu-like symptoms). If the side effects are not critical, it is usually best yo give your body time to adjust rather than stop the drug altogether, otherwise each time you re-start you have the same effects.

[adrienneioannou in reply to Purpletop]

It is severe muscle and joint pain. It is keeping me from sleeping. I can't remember feeling this bad except when I was at uni woth flu and was in hospital. My nurse advised me to stop the meds as I am seeing her next week. Just frustrating as I had to stop azathioprine because I felt sick all the time. I stuck it out for nearly two years.

[vonda]

I have been on it for like 2yrs but i had no problem with it. I did feel that way on prednisone though bt my doc. Said my body had to get use to it an told me to stay on it. It took a couple weeks til i sarted to feel better. Im sorry it makes you feel that way. But my doc makes me ride my medications out he says that side effects arent worse than this disease.

[adrienneioannou in reply to vonda]

I am already feeling less pain having stopped the med. If I can find something that helps with the pain then I would givr it another go. I did wake up with a cold sore

[lupie46]

I had several years on methotrexate. It stopped working. I have been off work for 10 months. I am on week 5 of mycophenolate. I too had to stop azathioprine due to nausea. Rheumatologist told me to stick with mycophenolate for at least 12 weeks to see full benefits. As long as the blood work is ok, keep going. Good luck

[abby1649]

I have been on mycophenolate for a year now. I came off a chemo drug - cyclophosamide and started the MMF two weeks later. The first month was hell and I persevered. Took about three months for my body to adjust. Now its not perfect but manageable. I still have mild nausea and diahrrea but it comes and goes so not everyday. The pain and stiffness in muscles and joints is still there but I can control it with heating pads and massage. No pain meds which makes me happy. One day at a time is how I live now. I find Positive attitude, Sleep and rest and no stress are the best medicine. I am 61 years old (old to be a new lupie) so have basically retired from work. Enjoying summer camping and spending time with my kids and grandkids.