Wegener's Granulomatosis Support Group

Hello,

First the back story: I was diagnosed in September 2011 (age 32) and have taken Cytoxan and Prednisone since. I have responded well to the treatment and doctors are about to change my medication to the less toxic meds. I am currently taking 100mg Cytoxan and 5mg Prednisone.

I am wondering if anyone experienced leg pain/muscle knots during treatment. Without regular treatment for my muscle pain I am not sure if I would be walking. I can deal with the muscle fatigue but the knots and pain are something else. I am not sure if my leg pain is due to the medication/or perhaps the lowering of the Prednisone or if it is part of the disease. Still new to this, any information would be greatly appreciated.

Thanks

I am so glad you posted this. I have had cramps in my legs, but not too bad. My hands is where my cramps are the worst, expecially when I am cooking. I can't get through a meal without cramping. I try to rub them out or press down on the counter, but still they are there. I have learned to just cook with the cramps. All evening they were pretty bad last night, and even throughout the night. It seems when I stop using them as often they go away. I don't have them now.

I also have had some terrible knee pain that lasted about 3 days, and brought me to tears. Now that is just a dull ache, but have pain in my right elbow and cannot extend nor bend it all the way. I have referral to a rheumy soon.

I am taking 60 mg prednisone and 100 mg Ctyoxan, lisinopril and lasix. The pharmacist told me one of those meds can cause your potassium to drop and that can cause cramps. I have also read that prednisone can eventually cause joint damage. Maybe talk to your doc. Keep me posted and good luck.

I am on prednisone and cyoxan infusions... have been since Dec 2010. Unfortunately, I still experience leg/foot cramps, leg pain & daily swelling (which I'm also on a water pill for) I really think this is all a result of both the drugs and the disease... the drugs help lessen some symptoms of the disease, but then also create some new problems from the side effects. The prednisone definitely helps lessen my point pain, but then it is also a cause of my swelling, bloating and weight gain. Even when it sucks through, I try to just think about how much worse it was when I wasn't on any of these meds... and it terrifies me me to come off of them! I surely would still be in dialysis if it wasn't for the cytoxin... it was the only thing that continues to help my kidneys, which Wegener's practically killed in a matter of weeks. My best advise would be to try to deal with the leg pain as mush as possible, and push through it to still be active (cause you don't want to get a blood clot) hopefully over time we can all be able o function without having to have all these meds. Take care

Thank you for your responses. Initially I had Corticosteroid-Induced Myopathy from the Prednisone, it was more of a tingling/lack of feeling than pain in the muscle which I am experiencing now. Thankfully I was able to decrease my dose and the myopathy has decreased as well. I guess my legs are just going to be difficult and I should be thankful that it has not spread to other muscles as well.

It is really helpful to know that others have experienced muscle issues during treatment, I can sympathize with your pain and the daily or weekly changes in location. The medication really is a double edged sword, I try not complain about them because they have kept me alive.

Hope you guys are well and each day gets a better.