Methatrexalate.....

Hi Mary.....

I have had PMR for 15 years and have tried MTX several times to try to lower my pred dose . Each time it made me sick in the tummy. So i avoid it like the plague.

I had to take Folic acid with the MTX to prevent mouth sores etc etc , but i cannot remember the doses as it was too long ago.

For me staying on my usual pred dose is far better.

However some people seem to be able to handle it ok, so, i suppose it is up to the individual...

But still confer with your rheumey of corse............

Hi Mary.  I'm new to this forum, and interested to see your issues with Methotrexate.  I started oral Methotrexate about 15 months ago and had severe stomach issues.  I switched to injectible in December 2015 and had much better results.  I was up to 1 mg. weekly but started to have severe hair loss. Rheumatologist upped Folic Acid to 2 pills/day and also put me on Fosamax because of thinning bones.  My prednisolone is at 24/day -- went from 60 last July down to 12, but symptoms returned so back up to 24.  

I'm now switching from Methotrexate to Actemra (just got approved by FDA in the US in May).  I'm hoping the side effects are less and that it helps to enable us to lower the prednisolone even more.  

I'm sorry you are having such a hard time with all of this -- joining this forum and another has helped me to appreciate that I am maybe not as bad off as a number of others on here though low stamina and quality of life changes are frustrating.

Wishing you the best outcome possible.

I assume you mean methotrexate? 

You should also be on folic acid to reduce the side effects - if you are having mouth ulcers it is a sign you aren't on enough. Some doctors start patients on 5mg per week - I know patients who are on 5mg per day tp stop the side effects. 

Did the rheumyreally tell you it would get you off pred quicker? It doesn't get you "off" pred - it MAY allow you to manage on a lower dose by making it more effective. It works for some people but not for others and, as Billy says, for some people it is fine, they have no side effects, for others it causes nausea in particular. It is possible to  have it as injections and that often stops the nausea but the other side effects tend to be much the same.

A study in Italy some years ago showed that methotrexate did help some people reduce their dose of pred. However, when they did a follow-up 5 years later they found the incidence of pred-related side effects was exactly the same. They also found that about a third of patients still needed pred at 6 years - whether they had taken mtx or not. If mtx worked reliably in PMR/GCA they would use it. It doesn't.

If you say you lost vision in September, does that mean you have GCA rather than PMR? You say "a bad reaction to pred" - what do you mean? Most pred side effects can be managed when you know how.

And something to ask your rheumy about: tocilizumab/Actemra has been approved in the USA and is being used for individual cases in the UK as the results of the clinical trial showed it allowed many patients with GCA to go into remission and be off pred in 6-12 months. If you really can't take pred - that is what they should be considering.

With the problems your having I would ask the rheumy to check your liver enzymes. I was not on it for very long at all about a month and was having a lot of the same problems and I asked to be taken off of it. She did some blood work and found that my liver enzymes were up. So at that point it was a no brainer.

Amkoffee's comment does make me wonder - you have been having 2-weekly or at least monthly blood tests haven't you?