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

Wow, Sooner! I'm surprised by that - it does seem as though most rheumys start you very low (as Michelle said) and then increase the dose slowly. I started on 2.5mg and I'm increasing by 2.5mg every second week. This is slower than normal because of my concern about nausea and the need to minimize my risk of vomiting (because of my damaged oesophagus). So far, I've had no side effects at all.

hiya,

I'm on methetrexte and I've got better than 20% reduction but can't taper off steroids but I also have some other inflammatory conditions as well.

are you taking folate/folic acid on the other 6 days.

To me it seems that mtx some weeks is ok, others it's like being hit by a bus. what I have noticed it's worse when the inflammtion is high, as measured on blood tests CRP/white blood cell count. also after 2 or hree days of improvement it hit hards when you start the downwards slope. Always by the end of the week I'm not very comfortable often unwell.

For me it's still well worth taking and when we tried to drop off it last year I had a very big wake up call on how well it worked much better than 20%.

Methetrexate is not for everyone, and it certainly does not work for many. I have had a big improvement with my peripheral joints lumbar spine and Inflam bowel disease and esp iritis. I still flare but over the years we are managing much better.

I did n't go well at all on the sulphazine, only 65% can tolerate it.

Neither of these drugs are ideal best practice but I do not qualify for the better biologics (enbrel/remicade etc) under the health scheme in my country.

Good luck to you and I hope you get well.

Dave

Good luck with that...I've always hated it becuase it makes me sick too, but I'm gonna ask my doctor about getting back on it since I'm having such a terrible time right now.

As we are all wired differently, my experience with this led to huge ear ringing to the point I had to stop the treatment. And no, I hadn't just seen the Hunchback of Notre Dame.....

Sooner,
Maybe you should be a little patient with the sulfasalazine. I think it takes a while to do its job and it is not a pain-killer. I am using it. The methotrexate is not a nice drug - was on it and I kept on feeling very "out of it", sleepy and could not concentrate. Had to take at least two days off every week just to get over it - fortunately I am working for myself! I never got used to it.
Take care and all of the best

fdlftm

Hi Sooner,

I've been on mtx for almost 2 years now for recurrent uveitis, and am about to start tapering off my current dose (25mg/wk) back to 15mg/wk. I can relate to the no energy - I also struggled initially for a few months whilst getting used to it, now I don't notice it at all. Folic acid is important to minimise side effects, and drinking lots of water is also a good idea.

Good luck - hope you get used to the meds soon!

Hi, I know it works for some and not for others. The weird thing is that my husband didnt feel tired on MTX. However while on it he had a constant cough/ need to clear his throat, he also felt constantly cold. After a few months he stopped taking it as he had no improvementso it wasnt worth the side effects.

I had been watching for this. Would you believe this flhtm? He does pretty much what he thinks best anyway. It is helping him.

Pu Liki
Possi

Welcome Okie from another Okie
I was on MTX for awhile. It made me sick and made my hair fall out. It also made me very tired. I did not find that it helped much for my pain so I went off of it. I am now on humira.

I hope you are getting some relief.

Raquel