Reaching the end...

[Marijo1951]

Yesterday I had my rheumatology appointment with a very nice young female doctor. This appointment should have taken place in May last year - she was very apologetic about the long delay. I explained that I had simply continued for more than a year to take 2.5 mg of pred daily, plus 10 mg per week of Methotrexate as my GP wouldn't advise and the rheumatology nurses had failed to call me back when requested.

She told me that the usual procedure is to wean off pred before giving up MTX. We agreed that I reduce to 2 mg pred, then 1.5 mg, then 1mg, then 0.5 mg, giving about 2 weeks to each dosage, and that I stick to 10 mg MTX while taking pred, then reduce to 7.5 mg weekly for a while before dropping it completely. She said there's little point in taking less than 7.5 mg per week. I have another appointment on 10th July (fingers crossed it isn't cancelled!)

I can't help thinking that if I'd been seen last year, by now I would have been free of medication for some time. Nevertheless it's good to be looking at the end of six years of being an invalid.

[SnazzyD]

How frustrating. I would say though, not to torture yourself thinking you could have been off meds by now; it doesn’t work as easily as that. A consideration that is often forgotten about is adrenal function and that will come back when it’s ready and not when any doctor decides, same as the PMR really. You may find reducing that fast you may hit a wall of fatigue due to the adrenal glands not being ready to produce the cortisol no longer covered by the Pred. 0.5mg can be quite a lot in this regard. See how you go, but don’t be surprised if you have to slow down at some point. This process is nothing to do with Methotrexate which is no help with adrenal function coming back on line. Have you been to the FAQ’s to the right of the page and looked up adrenals? I recommend you do if not as knowledge is power to make or break a smooth transition towards zero.

[Marijo1951 in reply to SnazzyD]

Thanks Snazzy. I'm not really torturing myself about the delay, it just occurred to me. I think I experienced the adrenals 'wall of fatigue' when I reduced below 5 mg but I'm aware that something similar might happen again, in which case I'll modify the procedure. The doctor never mentioned adrenal function of course, and I would probably not have known its significance without this wonderful forum.

[PMRpro Ambassador]

Don't look at it as missed opportunity because while MTX probably has helped you get so low, it is hopefully actually low enough for your adrenal function to have returned and bear in mind that Prof Dasgupta often leaves patients at 2-3mg pred longer term as it reduces the risk of relapse. If it is good enough for him .,,

[Marijo1951 in reply to PMRpro]

Yes, I was kind of aware of that, so I didn't really worry too much. However I wouldn't have felt so relaxed if it hadn't been for all the advice on this forum. Without it I would have been completely at sea.

[Ronnie101]

Congratulations on getting so low. I'm in a similar situation, 3 mg pred, 10 mg of methotrexate. I've been here before, a couple of times, and flared so I'm taking the reduction super slow this time!

[Marijo1951 in reply to Ronnie101]

Good luck. I hope it goes smoothly for you from now on...

[dancersize2]

My rheumy didn't think I should have dropped my MTX dose to 10mg after finally getting pred to zero. I kept taking it for a year + then tried to stop but pains returned. Now both rheumy and GP have decided I have changed to rheumatoid arthritis so need to continue the MTX forever.

[Marijo1951 in reply to dancersize2]

Bad luck. My daughter had RA when she was a teenager, but she became vegan (for ethical rather than health reasons) soon after and her RA has never developed as we anticipated, possibly because of her diet. As for me, I know things might not go as smoothly as I hope, but as long as this forum exists, I won't despair.

[Katiecatweazel]

Hello Marijo, I have been asked if I have any advice regarding Methotrexste. My only experience of this drug was in combination with Prednisolone but I came off it after breathing issues a few months after starting.

I have continued with Prednisolone since then, reducing to 5.5 where I am staying for a while before cautiously edging downwards.

Best of luck in managing your goal of being drug free in due course.

[Marijo1951]

Hello Katiecatweazel. I've been taking Methotrexate since December 2017 without any adverse affects as far as I know, though I was very concerned about taking it at first. I don't know if it genuinely helped me to reduce pred more quickly, but at the same time I don't think it's done me any harm. Good luck with your own journey towards restored good health.