Steroid withdrawal symptoms

[Jcmcd]

Hi, I'm new to this, came off steroids after three and a half years. I had giant cell arteritis and polymialgia have aching arms and sometimes legs very stiff, seen GP today who suggested it was probably "my age" I'm 72 - do they not accept that it could be withdrawal symptoms.? Anyone else has this problem Jane

[Celtic PMRGCAuk volunteer]

jcmcd, did your GP not even suggest having your blood tested for inflammation (ESR and CRP), especially if you are someone who had raised markers at initial diagnosis? You haven’t said how recently you came off steroids and whether you were totally pain-free at that time. If very recently, you may find that just getting back on to a low dose quickly will nip things in the bud. Also, have you been overdoing things since coming off steroids? It can take a year or so for our bodies to get back to normal after reaching remission.

[Hindags in reply to Celtic]

Celtic, your reply raises two questions for me. Is it a general rule that if one initially presented with high markers, that markers continue to be a relatively sensitive measure of the underlying inflammatory status?

I’ve read here that 20% of PMR patients don’t have elevated markers. So I sometimes wonder how much confidence to put on my low markers. I was diagnosed 12/2017. Since 04/2017 my markers have been consistently normal. Symptoms pretty minimal as well tapering from 8 to 7 on a DSNS. I’ve been wondering about this for a while.

Also, and more to the point of jcmcd’s post, what is the healing that the body needs to go through to bring us more or less back to normal after one has tapered off of Pred?

I’m curious whether it is adrenal regulation, emotional regulation, muscle rebuilding, joint stabilization, tendon rebuilding, immune system rebuilding, (whatever that means). Is there any research? What, if anything, can we do to make it easier on our bodies to regain our health, to prepare for convalescence should we be able to get off of Pred or down to an insignificant dosage that regulates our inflammation?

[PMRpro Ambassador in reply to Hindags]

None of the above really - the healing is of the immune system. And then your body simply has to get fitter again. In the meantime doing as much exercise as YOU can manage will keep things ticking over. But you have to start small and build up gradually - you cannot just dive into intensive training. Nor will you be able to do that when you get off pred altogether either.

[Celtic PMRGCAuk volunteer in reply to Hindags]

Hindags, in reply to your first question, it appears to be possible for some patients who present with raised markers at the outset, to find that those markers don’t always continue to correspond to how they feel at any given time. Of course, the reason for that in many cases could be that the blood results lag behind. However, I was someone whose blood was highly sensitive to any inflammation and I found that such a useful guide with regard to dose reductions.

As far as the “healing” process goes after remission, many hormones etc will have been disrupted and these take time to return to normal - it is said up to a year. I believe this all occurred for me by the time I came off steroids completely as I remained on 1mg for about a year! PMRpro has covered the rest, I think.

[Hindags in reply to Celtic]

Thank you so much.

[PMRpro Ambassador]

I think it is far more likely that the PMR component of GCA is still there. PMR lasts for on average 5 or 6 years and even when patients get off pred sooner it is not unusal for it to return.. You are never "cured" of autoimmune disorders, they may be quiescent for a time but the propensity for it to flare up again and cause a relapse is always there.

[Hindags in reply to PMRpro]

Thank you again and again.

[piglette]

Hi jcmcd, on the radio today they were saying that GPs were not very well trained in symptoms of the menopause and one GP interviewed said she only discovered the problems when she became menopausal. If they have trouble with menopause which will affect fifty per cent of the population, what hope do we have with GCA and PMR?

[DorsetLady PMRGCAuk volunteer]

Hi Jcmcd,

Do you just love that “it must be your age “ comment! If I had the enthusiasm I could just punch them on the nose!

As others have said very likely to be GCA and/or PMR still lurking. Although, as I well know, the normal aches and pains of life do resurface - but I think most of us can tell the difference! Do wish some GPs would give their patients a bit more credit.

My GCA lasted 5&1/2 years in total, so I would be inclined to think your is still active, do you have any tablets lying around? If so, you could try a very small dose and see if that improves things.

Or try an OTC painkiller like paracetamol or Ibruprofen - if that works you’ll know it’s not GCA.

I found it took the best part of a year for everything to “settle” after stopping Pred.