I was diagnosed with PMR in December 2015 and commenced on 20mg of Prednisone. It has been a long slog to reduce to 3 mg to feel reasonably comfortable. I have tried Methotrexate along the way but found that it made me ill.
I reduced my dose to 2.5mg three weeks ago and am now in pain and feeling fatigued (and wishing that I had done the slow reduction but too late now).
I am now looking for advice of how to get back on track without having to increase my dose too much.
A little bit of history. I had two suboptimal synacthen tests at 6 mg. This was discussed during my last Rheumatology appointment and it was decided that I wouldn’t have another test since the treatment would be just the same
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NZShez
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Think you need to go back to where you last felt good and maybe add a mg or 2 to that initially. You need what dose you need!
No point in suffering when you are on a low dose, anything below 5mg is not going to cause issues.
Make sure you continue to use the slow taper, it’s even more important at very low doses, and you’re only 3 years into your journey, which sounds as if it’s been a bit rocky anyway, so don’t try and rush things.
I am puzzled by “ the treatment would be just the same” comment. Surely if your Adrenals cannot work, you would be prescribed a compensatory dose of around 7-8 mgs of Prednisalone or Cortisol?
What did you understand the doctors to mean?
If we have the bad luck to lose our own Adrenal function, then we have to be treated forever with synthetic Cortisol of some kind. I would have thought more tests were indicated to see if they are beginning to function optimally.
We discussed Hydrocortisone, but I have had this before and had undesirable side effects. I am going to see my GP to arrange a repeat synacthen test.
I have taken 10mg of prednisone this morning and plan to take the same for a couple of days before dropping down to 5mg and back to 3 mg where I was reasonably comfortable.
The Rheumatologist is keen to get me off the Prednisone due to me developing osteopenia and high interlocutor pressure.
I think I just need to find a happy medium dose to be able to function well.
We also discussed that some people need to stay on a low dose indefinitely. As I said to PMRpro, I think it’s easy to forget how bad the body feels when things are not well controlled.
But if you have poor adrenal function you CAN'T get off the pred, you need it to replace the cortisol your body isn't making. I know it isn't the rheumatologist's field but if I as a layperson, albeit a physiologist and with a very broad medical background, why doesn't she understand that?
While at higher doses your body stops producing cortisol and uses the readily available pred, it isn't proud, it doesn't care if it is natural of synthetic corticosteroid. Once you get to about 7mg the adrenals need to top the synthetic dose of pred up with a tad of cortisol. The lower the dose of pred, the more cortisol they need to make. The amount of corticosteroid remains at about the equivalent of 7 or 8mg pred, less pred just means more cortisol in the mix.
If your body can't produce cortisol you can become seriously ill - which is why you supplement it, with either HC which comes with its own set of side effects as you have experienced or with the pred your body is already used to.
If you have suboptimal synachen tests you probably need more pred - as SJ has already explained. Did they not explain that to you at the time? That will account for the fatigue on its own. And if they don't work well - you will stay on pred, probably for life, and I would have expected at at least 5mg as a supplemental dose but if 3mg is enough for you to function well they should have said not to force reductions.
It also sounds as if you need at least 3mg to manage the PMR inflammation and it has built up far enough to cause symptoms - that is probably adding to the fatigue.
If it were me I would take 5mg for a few days until you feel OK and then drop back to 3mg and see if that does the trick. Now is the most important time to use a slow taper when the relative size of reduction is big.
But I would also be asking for some joined up thinking about the poor adrenal function and remaining on some pred.
We discussed that some people need to remain on Prednisone, even at lower levels. At the time I was happy to leave things as they were and agreed to wait until my six month review. I think when I am feeling reasonably well ( as I was at the time) I forget how bad it feels when things are not well controlled.
I have taken 10mg today after a bad weekend of fatigue and plan to reduce to 5mg after a couple of days and then back down to 3mg where I was reasonably comfortable.
I am also planning to see my GP to arrange another synacthen test.
Thank you for your advice. I can always rely on a sensible and knowledgeable reply from you
"We discussed that some people need to remain on Prednisone, even at lower levels"
Yes - but that is for the PMR - you now need it as a replacement for adrenal function and if it doesn't return, you will need pred for life for that and it is a different thing. Some endos use pred, some hydrocortisone - but it makes sense that if you are good with pred to stay on that rather than switch to HC and a different steroid which may not agree with you as well as the pred you are used to.
I had the same problem and battled on - don't!! I have gone back up to 5 and it has all settled down again, going through a rubbish time stress wise at the moment so will stay on 5 until that is over and then I am going to do the very slow tapering method. Managed to get off steroids all together for a few weeks last year but again stress caused a flare up and had to go back up to 7.5. For so long I thought it was all about 'getting off pred' but now realise, thanks to this forum , thats its all about listening to what your body needs and taking the reduction really slowly
Hi NZ, I too started at 20 mgs 4 years ago and using the DSM am down to 3mgs but do feel very tired and my arms are difficult to use. I really am resisting going back up on dosage.
I am not sure that doctors are not being honest, I think they really believe what they are saying, it is just that they are misguided and/or do not have much if any experience of PMR. Alternatively they haven’t a clue.
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