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neuropathy and methotrexate questions

Started by trc1962, June 17, 2016, 02:41:00 PM

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trc1962

Hi. I have had neuropathy off and on for the 10 years I have had autoimmune issues but have been totally free of it for a couple of year (prior to that time I was on prednisone for a liver issue caused by Imuran). The prednisone time totally healed everything and I was good to go. However, I am now in quite a flare. I had a mild respiratory virus in May and maybe that got everything going and I got over tired (not very smart I know). I started a prednisone taper and have spoken with my rheumatologist who ordered blood work and said it is probably time to consider methotrexate. I was previously on Imuran and it did a good job but eventually caused my liver values to rise and I jaundiced (it was a high dose). Since that time I was on either a bit of prednisone, or nothing. I know many do take methotrexate on this site and just wanted to know if you experience side effects? I am concerned about starting any hair loss as I dealt with it years ago and it has recovered nicely (it took years) and I don't want to restart it. Right now though stopping the attack on my legs is important. It makes my muscles tight up into my back side and it is painful. I just wish it would all go away. I know it can be controlled as the pred has always done the job but it isn't a long term answer. Any info is appreciated.

Rgs

Hello
I can't answer your question but maybe I can find help here ...
I'm also dealing with sjogren and neuropathy from it, but the issue is that I can't get diagnosed for the neuropathy ( 5 different Emg/ ncv tests normal) , I know its related to the sjogren as its getting really worse when the dryness to
Do you have a recommend for me? How to get diagnosed and treated?
I can't understand how can autoimmune neuropathy will not show down in Emg test, Drs say it's very sensitive to neuropathy...
Trc1962 hi, can you describe your neuro issues?
Thank in advance

rnathans

EMGs are not good at showing small fiber neuropathy which is what we usually get. it is diagnosed often with a skin biopsy. It needs to be done somewhere with experience in reading them, usually a university hospital setting. If you tell us where you live we might be able to make suggestions.

Some, but not all neuropathies are helped with IVIG. I was never able to get high enough on methotrexate because it caused elevated lfts. I also had to stop immuran because of raised LFTs.

quietdynamics


Methotrexate/Hair: Prior to Methx I was leery of brushing my hair since it was falling out. With Methx hair stopped falling out and I see it growing in along hairline. Also some facial/skin issues are controlled.

Dr. tapered dosage up to what worked best. And of course monitoring labs.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"