Hi. I was diagnosed with PAN in September after four years of it affecting my skin and nerves. Have just completed six cyclophosphamide infusions and am now down to 14mg pred. I'm moving to Methotrexate on Monday. What are others experiences of methotrexate? Side effects? Did you feel better on methotrexate than cyclo? I was feeling better before I was diagnosed so am really hoping I settle with the methotrexate!
And happy Christmas everyone!
Hi Binday,
I have Rheumatoid Arthritis and Rheumatoid Vasculitis. I took Methotrexate for 7 years for RA, I had nausea and blackouts when on tablets, but changed to injections after which I had no problems, I had 25 ml and 10mg Leflunomide. I had to stop taking MTX so I could have chemo for breast cancer. Oddly enough, part of the regime for cancer included cyclophosphamide. After treatment, I had 15 months of wondering what was wrong with me before diagnosis of RV. My Leflunomide was doubled and I was put on Prednisolone 40mg, also had 3x1,000 ml infusions of methylpred. Steroids have gradually been reduced so now take 10mg. Also back on MTX, 20ml injections. I had to have 2 more infusions of methylpred the other week, but although the drugs aren't giving me any problems, I'm not seeing much of an improvement with RV.
As my cyclo was part of a regime with other chemo drugs, I can't really say which of my side effects were caused by it. The other drugs were 5FU and Epicuricin, which with cyclo form the FEC regime. I had three of those, and three of taxotere.
If they start you on tablets, and you do get nausea or other problems, ask about the injections. I have the normal syringe and needle as that is what I was trained for, but it also comes in a pen form now, which I have heard is easier to do.
All the best. xx
Hello Bindy
My wife was incorrecly diagnosed with RA -later diagnosed with WG. She was given Methotrixate. They decided to increase the dosage after a about six months . She was on weekly blood tests to keep check on how the Methotrixate was affecting her kidneys-but there was a quick deterioration in her kidney function resulting in hospitalisation - it took weeks to eventually discover after a kidney biopsy that she had WG. That was when she was given Cyclophosphamide and Pred- for four months then Azathioprine- and currently Mycophenolate Mofteil. Everyone is different in reaction-but watch your blood tests carefully and act quickly on any sign of deterioration.Your blood results should always be available within two days- Hope you make good early progress
Hi I have MPA and was on methotrxate and became ill on it headaches unable to move and losing weight etc like a very bad case of flu I then seen my doc who put me on mycophenolate which has worked wonders !
He told me about 30% of people have bad effects on drugs
You need to try it for 3 weeks I was changed to mycophenolate and was fine it a personnel thing !
Good luck !
Hi, I've been on methotrexate for 10 years (20mg subcutaneously each week, recently reduced to 15mg). I have gpa. Apart from sometimes feeling nauseous the following day it has been fine. Watch your liver results though: I have a blood test every month to check its ok. Hope it goes well and merry Xmas. Charlotte
Hi I have not been on any other drugs (other then pred and singulair - horrible drug ) but methotrexate suits me fine. I am on 25mgs weekly and got down to 4.5mg pred per day. Diagnosed with probable Churg Strauss after 7 years of problems such as polyps asthma and rhinitus and hives etc. Went to Royal Free in London where they thought I was Samters.
Hi. Well I got through my first methotrexate tablets dose without feeling too bad - other than being in an absolutely FOUL mood the day after! But my husband may say that's nothing new... ;-). Is it likely to carry on like that or may I feel worse with subsequent tablets?? Any advice appreciated!
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