Questions

[Victoriaitsnosecret]

Hi- today I was doing some cleaning, scrubbing walls. My right hand swelled up but only under my index and middle fingers. It went away but there is still a little pocket of swelling under my index finger. My left hand has been cramping up disfiguring my hand so that my fingers are spread apart, kind of claw like. This happened when I was just resting. I see the doc in 2 weeks so I will ask him then. Just wondering if it could be related.
Also anyone on Methotrexate experience hair thinning? My hair seems to be thinning? I have a lot of hair but I feel like I can see my scalp in parts.
?.....

Wishing everyone well!



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[Dirty Don]

The hand cramps & any kind of rashing on the limbs could be a sign of flaring. When I started mtx, I lost quite a bit of hair...doc fixed me up by tripling my dose of folic acid...sheesh even had curly hair come back in...for a while...it was all drug related! Duh! Good luck.

[mishb]

Hi Victoria

I'm not sure about the hands but can certainly relate to the thinning hair.

My hair was always very fine and ringlets, now I can see a lot of scalp.
Its thin and out of control curls now.....not tight curls, just messy.......but the hair is still there and it doesn't fall out in clumps, it's just thinner.

I hope the hands come good ........ stop with the cleaning :tongue1:

[KathyB]

Hi Victoria. I also have bouts of swelling, mostly in my hands & feet (lots of tingling, stiffness, some cramping), but have no clue why other than fluid retention. Today I was shaving my legs in the shower and they felt like someone was sticking needles in them. Ouch! More swelling! I've been off a diuretic for a couple of months and wish I was back on! (I was taken off because of dehydration with a nasty case of the flu and increased creatinine rate.) No experience with MTX ... sorry! I agree with Michelle -- quit cleaning! LOL!

KB

[Pete]

Hi Victoria,

I sometimes have cramping in my hands. Now, I take a 99 mg/day potassium supplement and eat one or two bananas each day. This has reduced the frequency and severity of hand cramping for me, but it hasn't eliminated the cramping entirely as I still get them once in a great while. I haven't figured that out yet

As for hair loss, I take 1 mg/day of folic acid. I started this when I started taking mtx last summer. My hair has thinned over the years, but that's probably due to aging (I'm 66.). I don't think it's gotten any worse since I've been on mtx and folic acid.

[shannonkop]

Hi Victoria,

I'm 37 and was 31 when I started the cytoxan and have been on the methotrexate for five years now. I still have a lot of hair, It seems like there is a lot in my brush and on my clothes, but it's not much thinner. How much methotrexate do you take? I take 20mg every monday. I was so paranoid about it and my hair thinning when I first got diagnosed that I actually spent $1300 on hair extensions. Not my best move. I couldn't stand them and after a month got them all taken out and have been happy with my hair every since! :thumbsup:

As far as the cramps go - I often get cramps in my feet whereas I never used to. Right in the arch and the toes curl weird. It's usually when I'm on the floor cleaning. I think we both need to stop that nonsense. haha.

Also how do you put your picture on your profile but not on every post? I want to do that like you did.

Thanks.

Shannon

[drz]

I too have a lot of painful cramps in hands, feet, legs and have heard numerous suggestions as to what might be the cause of these cramps. Some of the cramps in my hands are caused by Dupytrens Contractures, a condition that often goes along with diabetes in people of northern European descent. The other cramps were thought related some how to changes caused by diabetes, dehydration, lack of minerals, vitamins, or side effects of various meds or combinations of meds.

The only one that is fairly easy to do something about is to avoid dehydration by drinking lots of fluids. It may sometimes pay to get tested for deficiency in vitamins or minerals but this is seldom an identified problem. Most of us Weggies though need extra calcium and vitamin D because of the pred meds and I have been told that shortage of it can cause bad cramps.

Most of us probably also take some extra folic acid plus a multi vitamin and mineral to help prevent shortages caused by our meds. We can also try eat a healthy diet with some fruits and vegetables and try avoid things like diet pop and junk food full of toxic crap.

Other wise I have no idea of how we can avoid painful cramps. One thing I learned though is to not force a cramped muscle to straighten out since that might tear it or damage it more. Instead rub it and massage it till it relaxes and then slowly stretch it out.

[Victoriaitsnosecret]

Hi Shannon. I think you have to go to your profile and delete your avatar or the settings when to display your pic. I love my hair, it's so thik it's upsetting to see it thinning. I have only been on meds 4 weeks now. I'm working up to 25mg of methotrexate. You've been on medication for a long time? Is it relapses or to prevent relapse? Have you noticed any side effects from long term use? Are your symptoms mostly under control?

[Victoriaitsnosecret]

Thanks for your replies. I appreciate them.

[annekat]

Hi Shannon. I think you have to go to your profile and delete your avatar or the settings when to display your pic. I love my hair, it's so thik it's upsetting to see it thinning. I have only been on meds 4 weeks now. I'm working up to 25mg of methotrexate. You've been on medication for a long time? Is it relapses or to prevent relapse? Have you noticed any side effects from long term use? Are your symptoms mostly under control? Hi, Victoria. I also have thick hair and had more loss on CTX. Now that I'm on MTX the loss seems to have stopped, and it seems to be thickening again, although it could depend on the dose, as I'm on a pretty low one, only 10mg. a week and it probably won't go higher because I think it is more or less a "maintenance" dose as opposed to the hard-hitting doses they use to stop Wegs in it's tracks. I haven't been declared in remission, but am at that end of things, if all goes well. I also have the cramps, mostly in my and feet or lower legs. Sometimes just thinking about something else will make them go away, and otherwise all that helps is massage or changing one's position. I've always heard that taking extra calcium can help cramps, even on short notice, such as when lying in bed and needing some relief, so getting up for a glass of milk, yogurt, or other quick calcium source.

[mishb]

Hi, Victoria. I also have thick hair and had more loss on CTX. Now that I'm on MTX the loss seems to have stopped, and it seems to be thickening again, although it could depend on the dose, as I'm on a pretty low one, only 10mg. a week and it probably won't go higher because I think it is more or less a "maintenance" dose as opposed to the hard-hitting doses they use to stop Wegs in it's tracks. I haven't been declared in remission, but am at that end of things, if all goes well. I also have the cramps, mostly in my and feet or lower legs. Sometimes just thinking about something else will make them go away, and otherwise all that helps is massage or changing one's position. I've always heard that taking extra calcium can help cramps, even on short notice, such as when lying in bed and needing some relief, so getting up for a glass of milk, yogurt, or other quick calcium source.

My mum and others swear by cork to eleviate leg or foot cramps........the corks that you get out of wine bottles etc.
You rub your foot on them and the cramp goes away.....or something like that.....google it
To go one step further, she has a cork tile and puts it at the end of her bed under the bottom sheet.
Supposedly, if you sleep with you foot/feet touching the cork, you will not get cramps......or move it up to the calf area.
She said it really works.
I take plaquenil for my RA/OA and this also helps with cramps......never had them since taken the plaquenil, which contains quinine.

[annekat]

My mum and others swear by cork to eleviate leg or foot cramps........the corks that you get out of wine bottles etc.
You rub your foot on them and the cramp goes away.....or something like that.....google it
To go one step further, she has a cork tile and puts it at the end of her bed under the bottom sheet.
Supposedly, if you sleep with you foot/feet touching the cork, you will not get cramps......or move it up to the calf area.
She said it really works.
I take plaquenil for my RA/OA and this also helps with cramps......never had them since taken the plaquenil, which contains quinine. Huh, guess I could also have a gin and tonic, which would also contain quinine? And the cork thing sounds pretty interesting.

Forgot to tell Victoria that I also get hand cramps, which have recently started up again after a long time. They are definitely sporadic and aren't happening now as I type. Could be related to working with my hands in a different way, which I've been doing lately.

I guess it'll all work itself out!

[Kathie28]

My hair thinned dramatically on MTX. I was devestated as I had really thick hair. We evetually redused my dose and added Imuran to replace the difference and fortunately the thinning stopped.

[shannonkop]

Hi Victoria. Yeah I have been on meds a long time. I only have one kidney so they want to keep me on the 20 mg of methotrexate to lower the chances of a relapse and it showing up my kidney next time. I dont have many side effects just anemia and that has gotten better with a few iron infusions I had this year. I guess it is worth it stay on this than start all over with prednisone and everything if it comes back. prednisone is the worst! I do have wine a few times a month too:flapper: My doctor is ok with it. I feel pretty healthy most of the time. I am sure u will do great!