tapering, on methotrexate, additional painkillers

[Kathryn1818]

I am tapering down prednisone, under specialist advise, at 6mg for one month, alternate 5mg/6mg, then 5 mg over a three month period. I still have pain and have told him so but he wants to try this tapering regime. I’m also on weekly 10mg of methotrexate (on this for three months). I have to trust what he’s saying but the pain and immobility, plus fatigue, is debilitating. Any advise, particularly from people who have taken methotrexate and have had a positive experience. Also, advice on painkillers!

[SnazzyD]

Oh dear, did you manage to get across to the doctor how debilitated you are? Did they explain how their plan was meant to work? It may be Methotrexate isn’t working for you as an individual as much as someone else as can happen.

[Kathryn1818 in reply to SnazzyD]

thank you for your reply SnazzyD. My consultant says it can take up to 6 months for methotrexate to kick in. I’m hoping my adrenal glands are getting re-activated soon too.

[PMRpro Ambassador]

Methotrexate isn't guaranteed to get you entirely off pred - it does work well for a few, for more it gets them a bit lower but for the majority it doesn't make much difference however positively some rheumies may portray it. I found that MTX made me feel dreadful and I had muscle and joint pain - went away when I stopped it.

I don't care what ANYONE says - if you have pain, there is something going on that needs to be taken into consideration. Being on a drug that may or may not work for you and in the process makes you feel worse is not reasonable.

[Kathryn1818 in reply to PMRpro]

thank you so much for replying. I’m confused as to what I should do - ride it out, as he says MTX could take up to six months to have any effect, up my pred or just stop MTX altogether.

[PMRpro Ambassador in reply to Kathryn1818]

I stopped the MTX after a month because I felt so ill and couldn't function - I only felt well for the 12 hours or so before the next dose of MTX was due. The fatigue was overwhelming. and I was due to go to South Korea to an international meeting - I;d never have made it! I felt so much better by the time I got back I just said no and my rheumy was fine about it.

MTX increases the steroid effects - not only the antiinflammatory effect but it can also increase the adverse effects and I experienced pred effects I'd never had with pred on its own. Including ravenous hunger and weight gain!

[Blackcatlover]

I agree with PMRpro. Methotrexate made me miserable and really messed up my bloodwork. I lasted for three months and it did nothing to help me lower my prednisone. I started having problems with my kidneys. My rheumatologist even apologized for putting me through such an ordeal. I couldn’t get below 15mg of prednisone at the time. Actemra is the only thing that got me down to my current 4mg of prednisone. I really think you should try increasing your prednisone by 5mg for a week and see if your pain goes away. This would answer the question “ Am I flaring and too low on prednisone.” There are better experts on this site to say whether or not this is the way to go. Good luck. So sorry you are going through this.