Posted , 4 users are following.
Ive been on Methorexate for approx 15mths I dont know if itd just me, but I get sore & stiff in my body mostly my hips '& knees.
Has anybody else experienced this?
0 likes, 11 replies
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mrsmop nicole27833
Posted
Hi Nicole, I had that. I had to stop taking the Methotrexate after about 20 months. I became less & less mobile. It is a knwn side effect of MTX.
Why do you take it? I now take Mycophenolate Mofetil [MMF] as a steroid sparing agent & I have fewer problems with it.
leonard12916 mrsmop
Posted
I took it for 8 monhs and had to quit for similar reasons! rsmop are your liver readins affected byMMF? Does it help you to lower your intake of medication? What are the more common side effects with it? I'm on Cortisone now after doing prednisone for 2 years and having trouble lowering my dose below 7 mg.
nicole27833 mrsmop
Posted
Hi thankyou, I take it for my echema, I thought I shouldn't be feeling like this! Iv'e mentioned it to Drs & even asked for blood tests to see if I had arthritis but nothing & they didnt say it could be the Methotrexate, thankyou I dont want to stop but I will have to find an alternative
mrsmop nicole27833
Posted
Hi Nicole & Leonard
When I was taking MTX, I was also taking Prednisolone & I actually managed to come of Pred. At first, my Dermatologist thought my pain was steroid withdrawal but it just never stopped, so I stopped the MTX. Unfortunately, I had to take Pred again until the MMF started to work.
I had elevated liver readings when I was on MTX but not on MMF, thank goodness.
Side effects of MMF, as with all these drugs, it can affect your liver. It can also cause your blood pressure to go up or, conversely, down! In my case, I already took 3 different drugs to lower my blood pressure. I had to stop one of them because my blood pressure was dropping too low.
Leonard, you want to get off the steroids because they can cause osteoporosis amongst other things. Why do you take it?
Nicole, are you under a Dermatologist? I am guessing that you have eczema. MMF is a drug that Dermatologists use, so perhaps you could ask about it.
nicole27833 mrsmop
Posted
Yes its for Eczema, & I to have been on Predisolone on and off for a few yrs, I last took it 5mths ago & dont really want to use it because of its side affects. I did see a Dermatologist & thats how I started using MTX, but now I just see a GP & get regular bloodtests as I have become unemployed and cant afford the specialist. May I ask what you used it for?
Would that other med. MMF suit me?
mrsmop nicole27833
Posted
You would need to ask your GP to refer you back to the Dermatologist Nicole. The GP can't prescribe Mycophenolate Mofetil. I am not a doctor and can only tell you what I take.
I have a rare autoimmune skin disease & my Dermatologist prescribed the MMF [Mycophenolate Mofetil] for me in order to control my condition & to get me off the Pred.
I am sorry you have become unemployed. Stress won't help your eczema.
I am surprised you haven't had a follow up appointment with a Dermatologist.
nicole27833 mrsmop
Posted
Thankyou mrsmop you have been very helpful. As well as eczema I also have alopicia universal(total hair loss) which is a auto immune disorder(disease) I will see the doctor & speak to him. Thankyou for your help & keep well, kind regards Nicole
mrsmop nicole27833
Posted
I'll message you Nicole. Alopecia also comes under the remit of a Dermatologist.
Good luck Nicole.
Wundermonkee nicole27833
Posted
Sorry to hear about your challenges.This reply will be long. Sorry. I have been on a first line Polymyositis, Sjogrens, fibromyalgia, RA protocol for 4 years. (MTX initially 7.5 mgs up to 15 mgs weekly ; Prednisone initially 5 mgs daily up to 10 mgs twice daily ; Folic acid, 1 mg daily ; Gabapentin 300 mgs 3 Xs daily, Tylenol 3 once daily ; Artane 1 mg 3 Xs daily). 4 years is far too long to be on prednisone. Noticing that wounds are slow to heal. Skin is sensitive. Some osteoporosis. Of course weight gain and elevated BP. I have been nearly asymptomatic since taking 15 mgs of MTX. My job is at times physically demanding. Bone and muscle aches are the order of the day. However recently my recovery time has been much longer. Taking prednisone for over a year causes adrenal failure. Lately my kidneys and upper right abdomen have had some pain as well as an ulcer on my upper left quad. I believe that these are the side effects of the MTX @ 15 mgs. My question is why are these drugs causing the same side effects of the illness that they're supposed to relieve??? I've seen that anyone taking MTX long term develop diseases worse than the initial issue. Sjogrens might be a result of long term MTX usage. MTX fog is common (malaise, fatigue, flu like symptoms). Memory issues have bern reported. IBS can be an adverse reaction. It is an absolute necessity to take a folate (folic acid) while taking MTX, as MTX is designed to destroy cancer cells but can also destroy normal cells without the folate, which requires adjustment in dosage corresponding with the amount of MTX that you're taking. If you are experiencing dry eyes, see your doctor for an autoimmune panel. MTX is a very high risk medication. I have chronic sinusitis, and I normally feel like I have minor flu like symptoms. Caffeine and Acetaminophen helps with the body aches. See your PCP to make absolutely certain that you are clean of any infections. A minor infection, normally unnoticed, can be very dangerous to the immunosuppressed. I got rotavirus from my kid's live immunization! Are the risks worth the reward? Not sure, because for me, it just feels like buying time until the next issue manifests itself. Good luck, and I hope you feel better soon.
nicole27833 Wundermonkee
Posted
Thankyou so much for your input & insight, you sound like you have so much going on alot more than me, I wish you nothing but luck & good health for the future. I'm going to have to find alternative methods to
control my skin as I dont
want to go back to using pred. & I want to get my
agility back and from the feed back I've recieved my
symptoms, which are
excactly as you described,
are most likely associated with MTX. So thks again and I wish you well.
Wundermonkee nicole27833
Posted
Thank you as well Nicole. One thing I failed to mention; all of this mess is tantamount to a cold with a great support system. I have a strong wife and 2 little ones that makes my days full of sunshine! Without these challenges, would I take these moments for granted? Perhaps. So I'm greatful for all things. If you ever feel overwhelmed, please know that you're never alone. You've got us!