Finishing steroids for pmr

[Dotty4u]

Been off steroids for five weeks but groin pain now, any answers please, is this usual

[DorsetLady PMRGCAuk volunteer]

Who knows? Did you have groin pain initially pre diagnosis? See you had it 4 months ago - did you resolve it then? Or did you continue to decrease with it? If so, probably a relapse……

Have you done some activity that could have caused it?

[Dotty4u in reply to DorsetLady]

Had little groin pain before but not as bad what strength pred. Would I need to go back to, I was down to 1mg before

[DorsetLady PMRGCAuk volunteer in reply to Dotty4u]

In that case maybe take a small dose -2 or 3mg and see if that helps…..you’ll after a couple of weeks, maybe sooner.

You may be lucky and get away with a lower dose - as PMRpro says, but you won’t know until you try.

If it does then taper more slowly this time around…not sure how long you’ve had PMR, but sounds as if it still active.

[Dotty4u in reply to DorsetLady]

I had pmr since Feb 2019

[DorsetLady PMRGCAuk volunteer in reply to Dotty4u]

About 2.5 yrs then, so very likely still active….so take what you need to, and don’t try and rush it - it will go when it’s ready, which is not necessarily when the doctor thinks, or you may want 😊

[Dotty4u in reply to DorsetLady]

Thankyou

[PMRpro Ambassador in reply to Dotty4u]

Only a third of patints gets off pred for PMR inside 2 years - half take longer than 6 years. It isn't a fixed term sentence - it takes as long as it likes.

[Sophiestree in reply to PMRpro]

Are there any averages for GCA/LVV like these ones for PMR. I realise they are different.

[PMRpro Ambassador in reply to Sophiestree]

Probably, but not that I'm aware of. The Mayo at Rochester does a lot on PMR because of the availability to them of a massive population of locals with Scandinavian heritage and a high rate of PMR. GCA is always harder because far fewer patients are on record. In general I think GCA is easier to get past than PMR but even so, although I do know people who were off pred in 2+ years they are few and far between in my experience and 4-5 years is much more likely. A sensible taper for GCA takes 2 1/2 years from 60mg - without any wobbles.

medscape.com/answers/332483...

It also very much depends on whether someone develops PMR as a sympom of their GCA. "Pure" cranial GCA is a lot easy to get through than a more mixed case with signs of LVV as well as cranial GCA

The Medscape article is good - but it has some out of date comment - aspirin is no longer recommended for GCA as having more downsides than benefits.

[Sophiestree in reply to PMRpro]

Thanks. I do think it is far better to be given a realistic idea than saying you'll be on the meds for at least year..... that way you don't get disheartened. I'm fully on board with the long term outlook !!!

[Dotty4u in reply to DorsetLady]

I did try to come off four months ago to no avail so took 5mg for a couple of days then slowly reduced I will try that again I think then stay on 1mg hopefully

[PMRpro Ambassador in reply to Dotty4u]

That's your body telling you you need to stay on at least 1mg for a while - which is brilliant

[PMRpro Ambassador]

Ditto to what DL says - but is the PMR REALLY burned out? It isn't uncommon for patients to be fine on 1mg, even 1/2mg, but symptoms start to reappear after a month or two as the tiny bit of unmanaged inflammation builds up until it is enough to cause symptoms.

[cycli]

hi Dotty. What you are describing could be your hip flexors shortened through lack of use stride length. If so it's lactic build up and will clear. I've had this and it hurts to work through it but it does improve. If I'm on the wrong track apologies.

[Dotty4u in reply to cycli]

Ok

[Sandradsn]

I've been off pred for 8 weeks and have groin pain too.I had an xray and blood test yesterday.I've been on pred for 5+ years.

[PMRnewbie2017]

Discomfort in the groin is sometimes indicative of a hip problem. It may be due to tendon or ligament strain or radiate to the groin from the hip joint itself. Personally I wouldn't start Pred again if the hip is your only site of discomfort. Try standard pain killers or non- steroidal anti inflammatories first. Could you sit with a hot water bottle across you hip/thigh and see if the heat helps?

[yogabonnie]

If the standard pain pills work it isn't the PMR... I had groin pain when my hip was bone on bone and needed a replacement. NOT that that is a better choice than going back to 1mg!!!! sorry! Good luck! keep us posted on your recovery.

[anutycrixp]

Trouble is when you stop long term steroids..youv'e aged some,aches and pains which might have been noticeable previously may have been masked by steroids,O.A may have quietly started to develop etc Who knows? When I woke up one morning 3 years ago I thought I had been abducted by aliens for cruel experimentation..I didn't know myself.Subsequently ,eventually treated for P.M.R.Ok,but never been the same since.Now off pred since september 2020 and just keep hoping won't relapse,but yes O.A in wrists and thumbs,many aches and pains,have aged skin winkled,hair brittle and rapidly greying etc feels like aging has been accelerated. Would this have happened anyway?Perhaps there really was aliens..time travel etc....!!!