Problems after finishing steroids

[Dwellard]

A year ago I was diagnosed with PMR my symptoms I could not describe as very painful I had overheated muscles in my legs but felt like I had flu blood test showed what the doctor suspected as PMR took the steroids as directed and all was very good blood test after good. When I got down to 3mg I started getting intermittent muscle pains and had blood test but no inflammation showed up so am confused now as to what it can be has anyone's else had similar problems

This is my first visit to this site.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome

After only a year I would say your PMR is still very much alive. Symptoms invariably show before a change in blood markers - sometimes a few months. In some the blood markers don’t rise at all.

Just a suggestion - try going to 5mg for a couple of weeks and see if the symptoms recede. If you catch things quickly dnough that mahbd dnough - if not you may need to go higher. Hopefully not.

Once you get back on track - reduce more slowly - by 0.5mg a month- but only if you have no return of symptoms.

You seem to have had an easier ride than many, but you need to get things back under control ASAP.

[Dwellard in reply to DorsetLady]

I don’t know anyone with this so no guides to go on and NHS site not informative for when you finish treatment.

[DorsetLady PMRGCAuk volunteer in reply to Dwellard]

No because the NHS assumes when you have finished medication the disease will be gone....not necessarily so!

PMR and GCA seem to come out if the blue, stay around as long as they like (anything from 2 to 6 years, sometimes longer) and then again for no appreason go into remission.

They don’t follow the same course as lots of illnesses - take a course of medication, and hey presto everything’s back to normal.

The medication doesn’t actually address the illness itself, just the inflammation caused by it, so all the time you bave the underlying you need some level of Pred. That varies from person to person.

[PMRpro Ambassador in reply to Dwellard]

You don't "finish treatment" - you finish "management". There is no cure for PMR, all that can be done is manage the symptoms until the underlying autoimmune illness has burnt out and gone into remission. That happens in a year for fewer than 1 in 5 of patients - and they seem to be at a higher risk of relapse (return of symptoms later) than others which suggests to me that the figure is a false one - those patients happened to reduce the pred dose fast enough to catch one of the intermittent lulls in activity that seem to occur rather than it being a real remission. Autoimmune disease rarely goes away entirely, you often have better phases but it is still there, lurking and ready to bite again. In the meantime, you use what means there are to allow a reasonable quality of life. In the case of PMR and GCA it is pred. And do remember, untreated PMR is something like 7 times more likely to progress to GCA. And then there is Hobson's choice: more and high dose pred or risk going blind.

[PMRpro Ambassador]

If you have only had PMR for a year - it is probably still the PMR. It is a chronic disorder requiring a median duration of pred management of 5.9 YEARS. Lots of people are encouraged to reduce to zero and within weeks the symptoms reappear - you are not alone.

If the symptoms started at 3mg you had probably already overshot what you were looking for. You are not heading relentlessly to zero, you are looking for the lowest dose that gives the same relief from symptoms as the starting dose did. For you that may well turn out to be 4mg. If you act quickly as DL says you may be lucky and get it under control again easily.

Often people don't have raised markers as long as they are taking even a low dose of pred and for others it takes a long time for them to rise again.

[Dwellard in reply to PMRpro]

Doctor wants me off the steroids asap he put me back to 5 mg but only for 7 days then down to 3 then 1 will see what happens on next visit although he probably thought I would not need to see him again. My aches and pains are not unbearable

[PMRpro Ambassador in reply to Dwellard]

I'm sure he does want you off steroids asap - unfortunately for him he is not in charge, PMR is and it holds all the cards. If he forces you off pred then all that will happen is that you will be back where you started and the inflammation will be doing other damage to your body. The problems may not be unbearable now - but they must have been at the start or you wouldn't hav been put on pred then.

There are ways of managing the problems pred causes - but bear in mind that untreated PMR is something like seven times more likely to progress to GCA than if it is managed well with pred. And with GCA you need a far far higher dose which causes bigger problems - but the alternative, the ultimate adverse effect of GCA, is loss of sight which is irreversible.

[Dwellard in reply to PMRpro]

The inflammation was over 100% on both tests but first test on 15mg steroids back to what it should be. When I first went to dr I described my legs as lumps of lead but that did not last all day but the feeling of unwell did. He knew straight away what it was before blood test, the GCA was never ever mentioned but I have read about that. Thank you for responding and advice.

[piglette in reply to Dwellard]

Is he mad? What on earth does he know about PMR? His suggestions will just cause you problems which are totally unnecessary. Grrrrr.

[SheffieldJane]

Hello and welcome to the site. My guess is that PMR symptoms are poking through because you’ve lowered your dose too much. The disease has a way to go yet. Blood tests are not a reliable indicator of this disease, symptoms rule.

[Hidden]

Are you you even have PMR ? Were you in any woodland or heath areas before your flu started? Have you seen any rashes? If so, did your GP consider Lyme disease as your symptoms could be this? (FYI I may have both Lyme AND PMR!)