Methotrexate and peripheral nerve damage

[Bloom]

Does anyone find that methotrexate increases pain and and weakness in their hands and feet? I have had some problems in my feet before the start of treatment, but it's suddenly got worse.

I have only had 4 doses of methotrexate so far and am titrating it up to 15mgs increasing by 2.5mgs every 2 weeks. I should take 12.5mgs today, but over the last two days my hands and feet have become quite painful and tingly.

I am having 3 doses of IV Cyclophosphamide ( 900mgs) monthly because I have developed new "stuff" in my lungs, some old stuff has improved but some of the old stuff has cavitated. I have had one IV cyclophosphamide so far and will have the second next week. I am on 10mgs of prednisolone daily. In addition to the 3 doses I have already had 6 doses of IV Cyclophosphamide since February this year, which did not induce remission.

I have other symptoms which are worse over the last week, quite bad sinus headache, sore nose and some haemoptysis and fatigue. I'm not sure now whether the methotrexate is causing the painful hands and feet or whether it's the wegs. I'm trying to get a hold of a Dr to ask whether I should take my weekly dose today or not.

Also if it's caused by the drug is it reversible? I would be grateful for any advice re similar experiences.

Best Wishes

Bloom.

[Dirty Don]

I would suggest that the mtx isn't up to full strength yet as it takes more than 4 doses to start changing things in your body. Also, the WG may/will make preexisting conditions worse or more agitated at the least. If it is the drugs doing it, it may reverse. If not, then like neuropathy, it's a guessing game at best. Best to you.

[drz]

Wegs often causes neuropathy which may get better or not with treatment. Anything that may help reduce the Weg activity could help it. Your pharmacist or an internet search could advise you if MTX lists neuropathy as a possible side effect.

[whatthewhat]

Our daughter had / has neuropathy from the WGs, but recently a friend of ours who is a physical therapist specializing in hands mentioned that some ongoing difficulties our daughter has may be from the Cytoxan infusions. I didn't know chemo could cause neuropathy. Mtx never raised a flag for our friend but Cytoxan did. All this fwiw; I haven't researched it myself, just repeating what I've heard.

[Jaha]

I have neuropathy in my hands and feet. I have been on all the meds that they give for Wegs and really think that it is vasculitis related. I am going thru some testing now to see how bad it is and what might have caused it. All the best to you for finding an answer.

[mishb]

It takes more than 4 weeks for methotrexate to work.
I feel that your prednisone is a little too low for the MTX while waiting for it to kick in up to full strength.

I hope you can get some answers quickly

[Bloom]

Thanks everyone for your advice. I did eventually get through to a Dr who said it was impossible to tell whether it was the treatment or the disease but to stay at the same level of methotrexate for another two weeks (10mgs), I should have increased it to 12.5mgs. I wish I had just taken that dose now because I am sure it is the disease causing the pain in my hands and feet.

I have headaches, toothache, breathlessness, chest pain and haemoptysis, fatigue and my nose is hurting. I am having IV Cyclophosphamide 900mgs in three days time the day after I take my next dose of methotrexate so I hope that will dampen it down a bit. The reason for the low dose of prednisolone, 10mgs, is that I now have severe osteoporosis and I can't have treatment for various reasons, also I have to be honest I'm not keen on taking that because there's a lot of stuff about the efficacy of it on the internet.

The Dr did say that the most likely cause of the fatigue is the treatment, because I am on a significant amount of immunosuppressant drugs, but I had always felt that the fatigue effects of Cyclo just lasts a few days and I thought the same for methotrexate. This Dr was not my consultant however who seems to be feel that I can take more cyclo if needed. I have had 7 IV treatments so far. Cyclo also does seem to make me a bit clumsy for a few days so I guess it's affecting balance and co-ordination.

Somehow it seems as if the the more stuff they throw at me the stronger the disease gets. Also I feel slightly helpless in all of it, I'm not sure whether I'm being overly worried sometimes

Best Wishes
Bloom

[Birdie]

Also I feel slightly helpless in all of it, I'm not sure whether I'm being overly worried sometimes

Worry dunt help at all.

Turn worry into determination, dedication, documentation and most of all a clear mind to catch and stay on top of whatever comes along.