Remission

[ptm2018]

I am down to 1 mg of prednisone and overall I am feeling good and it does not appear that I am losing energy. But I sure, as I am sure everyone does on this network, worry about it coming back. Is there anything that we can be doing, once we are off the prednisone, to keep us in remission?

[PMRpro Ambassador]

Avoiding stress and not overdoing it probably help. But it is the minority who have a second episode. Honestly.

[SheffieldJane]

I think that you need to go carefully for about a year, carry on pacing and any exercise programme should have a very gradual build up, muscles have been weakened by this whole episode. Well done! You should definitely celebrate getting your life back - big time!!

[DorsetLady PMRGCAuk volunteer]

Other than monitor yourself for returning symptoms, not really.

Just carry on with life, but you may find that certain “normal” aches and pains associated with life in general that may have been masked by the Pred start appearing.

The thing is not to be paranoid about every little twinge, but just be aware.

You know what your initial PMR symptoms were like, so if they resurface just deal with them. Most people keep a little stash of tablets just in case that happens.

If your PMR is gone, it’s gone - if not, you will soon find out!

But most of all - get on with life!

[nevagivup]

Good advice from others in reply to your query. I would add, that if in the next year you have surgery and and need sedation or anaesthetic, you make the team aware that you could still be low on cortisol and insist they give you IV hydrocortisone, before they put you under. It does no harm at all, but could save you from going into shock, followed by a PMR relapse. An anaesthetist refused to give it to me, after being in remission for 5 months, and that is exactly what happened to me. Get on with life a, but be a bit princessy too. :))

[powerwalk in reply to nevagivup]

How do you even make them listen to that - I can just see it now "you'll be fine - no need". Then we pay the price! I sound sceptical - but its just my experience with medics generally. Very good advice though. Thanks.

[nevagivup in reply to powerwalk]

It was an arrogant over-his-shoulder as he walked away "You don't need it!" I think we need to refuse to be given sedation unless they give it us hydrocortisone, if on low dose and long term Pred, or are in remission. I once refused to be taken out of my bed until the anaesthetist came to see me so I could explain that I have a low tolerance to sedation and anaesthetic if they give me an adult dose, because I am on the small side. His response was that he didn't think I'm that small. So all 4ft 10ins of me got off the bed and stood next to him, a statuesque 6ft+. He agreed with me on both counts.

[PMRpro Ambassador in reply to nevagivup]

Like my granddaughter's asthma was not controlled because they hadn't changed her paediatric doses to something more appropriate for a 12 year old who weighed considerably more than her mother. Who would have been given an adult dose without any query...

[nevagivup in reply to PMRpro]

I get asthma when triggers strike, dust, pollen, virus, smoke, air conditioning/extraction. Last spring at annual review I was coughing quite a lot (tree pollen) told I HAVE to use inhaler twice a day and report back in 3 months. I followed plan to the letter, but late summer felt very unwell, which got worse as the year progressed. I stopped the inhaler unilaterally after second review. I do think the steroid inhaler dose was too much for my size, and believe that on top of Pred it tripped me into adrenal insufficiency.

[PMRpro Ambassador in reply to nevagivup]

It is known of - in the medical literature that is!

[teesher]

Just wondering how you would know for absolute sure that PMR has gone. Apart from being symptom free, would it be reflected in the ESR and CRP tests?

[PMRpro Ambassador in reply to teesher]

Only by being on no pred and having no symptoms. About 1 in 5 patients never have a raised ESR/CRP even when they can't move due to the PMR - or at least, to perhaps be more accurate, they don't move out of the "normal range" though the levels might be high for them. "Normal range" just means what 95% of the population might have - there is always the other 5%!

But technically it never goes away in the sense of cure - it goes into remission, usually permanently, but for a few people the underlying autoimmune disorder can become active again and cause symptoms.

[teesher in reply to PMRpro]

Thank you.

[piglette]

The only real way is to see if you are OK without taking pred. In fact you never actually get rid of PMR you just go into remission and for some people it can rear its ugly head again after they have stopped taking steroids, so they have to start again.

[powerwalk]

Congratulations!! How long did it take for you to get to this point? Thanks.

[Hidden]

Wow, congratulations ptm2018! Good job you!!!! I wish you much success in staying in remission; rest, relax, take it easy... listen to to the experts! Live your life, but be sensible!!!! Best of luck!

[Suet3942]

Lucky you ptm2018. I dream of that day....... keep well.