Confusion over PMR flare or injury: I was diagnosed... - PMRGCAuk

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Confusion over PMR flare or injury

4846td profile image
22 Replies

I was diagnosed with PMR December 2022 and GCA in January . Started on 20 mg prednisone.for suspected PMR with no improvement in pain until referred to an internist who suspected GCA and increased prednisone to 60 mg. Symptoms have been under control and I have been tapering well . I have been walking on a treadmill for about 2 weeks {slowly) to strengthen my leg muscles. My right leg and hip started becoming painful Saturday and by Monday I had extreme pain.in that area . I cannot walk without a cane . I just wasn’t sure if it was a flare (had not ever had one). By Tuesday the pain level had not changed and I waffled over thinking it was a flare. I decided to increase my prednisone to 20 mg from 10. No improvement this morning. So it must be muscle strain from walking too much on the treadmill! Should I go back to 10 mg today? I see my family doctor tomorrow. Not sure what to do.

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4846td
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22 Replies
PMRpro profile image
PMRproAmbassador

When pain is one-sided as you describe it is not very likely to be the PMR. It might be muscle strain from walking too much on a treadmill, it isn't a good form of exercise since it is an unnatural way of walking. However, there are other things including bursitis which is often part of PMR, You really need at least an x-ray to rule out a fracture - also possible though unlikely.

Given you have been diagnosed with GCA, I am rather concerned about the speed you have tapered from 60mg to 10mg. How were you diagnosed? Was it just on the basis of symptoms?

4846td profile image
4846td in reply toPMRpro

I had a right temporal biopsy in January that showed inflammation. I still have relatively mild upper jaw ache, sleep issues and cannot go for a walk without experiencing pain in legs but had been doing half hour walks on the treadmill with no strain . Guess I have been overdoing things.

4846td profile image
4846td in reply to4846td

Should I go back to 10 mg. of prednisone? The tapering regime was set by a rheumatologist I saw only once in February.

PMRpro profile image
PMRproAmbassador in reply to4846td

If you still have some jaw pain, I would stick at the 20mg for now, As I say, that is a precipitous rate of reduction and GCA has a nasty habit of flaring up in the fir year to 18 months. The sleep issues of course are due to the pred - they will improve. You have a serious systemic illness, the pred hasn't cured it, it is managing the inflammation which relieves the symptoms but you need enough pred to do that.

SnazzyD profile image
SnazzyD in reply to4846td

it does sound like an injury because of the severity and one sidedness. I agree with PMRPro that your dose sounds mighty low for this stage of the game. You say that it is under control but you are still having symptoms, hip aside. This is concerning, especially as the 12-18 months is the riskiest time for relapse. As a comparison, I was on 10mg over a year later from 60mg with no symptoms once it was under control during 6 weeks on 40mg. Was this the plan given to you?

4846td profile image
4846td in reply toSnazzyD

Thank you PMPro and SnazzyD for responding so quickly. I started on 60 mg prednisone in January for 2 weeks, 50 mg for 2 weeks, (as prescribed by internist), 40 mg. for 4 weeks - (after seeing rheumatologist and setting new schedule), 30 mg 2 weeks, 20 mg. 2 weeks, 17.5 mg 2 weeks, 15 mg 2 weeks, 12,5 mg 2weeks, 10 mg 2 weeks then tapering by 1 mg every 2 weeks. I know from reading other posts here that this does seem to be a rather fast tapering schedule but I have been managing fairly well with mild lingering symptoms that I’ve learned to live with thinking this is my new normal.

SnazzyD profile image
SnazzyD in reply to4846td

The lingering symptoms isn’t right really, and could indicate a higher risk of flaring at the moment. It’s not something to tough out but an indication that inflammation isn’t quite being dealt with.

PMRpro profile image
PMRproAmbassador in reply to4846td

GCA commonly needs pred for up to 4 years or more. I know of no-one who had proven GCA as you do and got off pred in under a year.

This

rcpe.ac.uk/sites/default/fi...

is a far more realistic approach and is still used by the author who is now a specialist consultant in a hospital near London, England and who does GCA research.

Like Snazzy, I'm really not happy about lingering symptoms. They suggest the underlying autoimmune cause of the GCA symptoms is still active and just lying in wait for the chance to flare up.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to4846td

The issue with reducing every 2weeks is that it can take that long for you to really know if current dose is enough before you drop down.

Do that 2, 3 or 4 times and you find yourself in a sticky situation, not knowing what dose was enough and what wasn’t,

Despite what the guidelines say, you really need to be at each dose for at least 3 weeks… and even longer as you get lower.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Think you need to stick at 20mg for longer -and certainly no reducing until the pains have lessens.

As stated very fast reduction over a short period…GCA is still very active in first 6 months of treatment. Whilst you can reduce fairly quickly whilst on higher doses with GCA, once you get to 20mg you really need to slow it down.

Bedwell profile image
Bedwell in reply toDorsetLady

sorry Dorset lady.. I can’t find right place to put my question! I’ve been on 4.5 for a couple of weeks.. feeling very weak and wobbly and overwhelmed and have an acting job on Mon and wed. Is there any risk in going up to 9 for a few days and then perhaps going back to 4.5!?? Thanks fir your help

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBedwell

There’s no risk as such -it’s similar to what we usually recommend for a flare. But yours does sound suspiciously like adrenals struggling and that’s not the usual advice in that case.

However if you need the extra Pred to get through next week then it’s what you probably need to do… but don’t be surprised when you drop back down and you have the same wobbly feelings -and then you need to address the adrenal issue -so come back if you’re not sure.

Good luck with acting job..

Bedwell profile image
Bedwell in reply toDorsetLady

thanks so much. Not much to say or do.. but it’s over a year since I’ve had any work.. !?!?

lennysmummy profile image
lennysmummy

Out of interest which area are you in. This is the dilemma to whoever you are under. I was tapered from December quite fast, I’m on 11mg now and to be honest as much as I hate the steroids I seem to take advice from here where others have had the experience. My markers each month are normal but I will not come down any further even though I know my consultant next week will try.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tolennysmummy

Probably not UK -as the term prednisone is used rather than prednisolone-and refers to internist.

That’s why we ask member to state country of residence.

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

Not to mention "cane" - Brits use walking sticks!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Spot on!

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

But does give us an opportunity to request people fill in their profile with at least their home country!!!!!

4846td profile image
4846td in reply toPMRpro

I am in Canada.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to4846td

Can you add that to your profile/bio please -

healthunlocked.com/pmrgcauk...

PMRpro profile image
PMRproAmbassador in reply to4846td

Thank you - it is really quite important to us so we offer sensible and relevant advice. What is on offer varies a lot between the English-speaking countries around the world!

ab58sf profile image
ab58sf

Physical therapy helped me with the deep pain in one side of my hips. Might try that if your doctor will make the referral.

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