Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group methotrexate

What are your experiences with methotrexate? Any bad side effects? Did it work?

Just started on it two weeks ago in addition to prednisone and sufasalizine... interested in hearing others thoughts on it as well.

Hi, I've been on methotrexate (mtx) since October 2011 and have been on 20mg per week for most of that time. I found the idea of it quite scary, but it's been good for me. It usually helps peripheral symptoms more than spinal symptoms and that's the case for me - it especially helps my hands more than anything else.

It's really important to just take it weekly (there have been fatal overdoses when people have not realised and taken it daily) and it's really important not to get pregnant as it has been linked to birth defects. You need to take folic acid - I had to increase it after a while as I was getting some digestive upset etc. And it is important to have regular blood tests to check it's not affecting your liver or blood count etc - I have a monthly blood test that also checks my inflammation (crp) levels.

I hope it works for you.

I was on metho for about six months before my rheumatologist took me off of it.

In the month or so leading up to it, I was prescribed steroids that lowered my inflammation and pain levels almost immediately. Unfortunately, the steroids were just a temporary part of the metho therapy. As my methotrexate dosage ramped up, the steroids ramped down.

Side effects for me included hair loss, trouble sleeping and acne breakouts. Meanwhile, it did little for my peripheral inflammation in my knees and I didn't notice a significant lessening of pain in my spine once the steroids were completely removed from my regimen.

However, I have heard that it works for other people.

MTX has been good for me. While it doesn't take care of all the symptoms of PsA, it helps enough that I get worse symptoms if I have to stop it for any reason. I also take a biologic (Cimzia) and NSAID (Mobic) and if I have to stop one of them, I notice it almost immediately. It takes all 3 of these meds to get the full benefits.

The doc started MTX by dosing 7.5mg/week for 2 weeks, then on the 3rd week going to the full 15mg/week. It was recommended to take it at bedtime on Friday, so on the first night, I took it and went to bed. Laying there in the dark, thinking about it (would I have a side-effect??), I think I had a very tiny amount of queasiness. But it never happened again.

After a couple of weeks on it, I had to work a weekend and noticed feeling tired till about dinner time on Saturday, after which time I felt fine (I work 2nd shift). Wasn't till the next weekend I worked that I realized it was probably from the MTX. After a couple of months of this (worked 4 weekends), it never happened again. Didn't notice it if I wasn't working, though.

I have thick hair and didn't really notice any loss, though it wouldn't have shown much, since I always have a lot of hair in the hairbrush (without any thinning). Take 1mg of folic acid every day but MTX day. Have been on it for 5 yrs.

Methotrexate helped ease my peripheral joints pain really well. Until I ended up in hospital for 2 weeks with severe bilateral multi lobe pneumonia. No symptoms of cold or flu or contact with the like, no cough at all while in hospital, I was in a critical condition, lucky to survive. Heart/lung specialist & my rheumatologist both agree that it was an uncommon case of pulmonary toxicity. Ive been left with ongoing breathing difficulties and more tests ahead. other than that it did help with my pain. Im saddened that I had this reaction because now I can't take it and Im back to square one with the pain until they work out what damage has been done to my lungs. Then hopefully I can try something else! I still wouldn't stop anyone from taking it tho - it can help enormously for some of us and that is the most important thing. ps I was also taking folic acid.

I was on methotrexate for a few years. I didn't sleep well on it, got some nasty infections, chronic cold sores and bad canker sores in mouth, felt a lot of fatigue and I always felt nauseated. Ginger tea helped with the nausea and I took folic acid with it. It did help decrease pain (mostly peripheral) but I couldn't use it as a stand alone drug. I switched over to LDN and stopped Methotrexate. Best thing I ever did because LDN is keeping me more healthy, increasing energy, decreasing pain all over and improving my mood too. I think some people do well on Methotrexate so it is worth a try.