Hip pain , pelvic muscle aching , knees and thighs - PMRGCAuk

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Hip pain , pelvic muscle aching , knees and thighs

Athena2020 profile image
14 Replies

Hello everyone I am now down to 1 mg of prednisone , it’s been one month that I’ve been having aching thighs and hips especially at night when I’m sleeping the aching wakes me up and in the morning I have a hard time standing up from stiffness and pain . My knees are aching and the right one is a bit weak when I try to stand up , also the pain goes into my thighs & legs as well. The pain in my shoulders has lessened but now it’s all of the above . Any advice as to what is going on . Has anyone experienced anything like this . Any advice would be appreciated.

Thank you

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Athena2020
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14 Replies
SheffieldJane profile image
SheffieldJane

I think that you’ve overshot your mark Athena 2020 ie the lowest possible dose you can reach and still get relief from the stiffness, pain and inflammation . This sounds awfully like a full blown flare. I would return to last dose I felt comfortable at and hope I didn’t need to go higher to control it. I expect that you were just following doctor’s orders, but this is too fast for you. How long have you had your diagnosis?

Athena2020 profile image
Athena2020 in reply toSheffieldJane

15 months

SheffieldJane profile image
SheffieldJane in reply toAthena2020

It would be so unusual to be nearing the end of the condition. Maybe you’ve tapered a bit fast. Try bigger gaps between drops next time. Do you use one of the tapers in FAQs? They really work.

Athena2020 profile image
Athena2020 in reply toSheffieldJane

Thank you

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Have a look at this post - healthunlocked.com/pmrgcauk...

..and in particular the information regarding a flare…which is what you are having have gone below the level of Pred you actually need as mentioned by SheffieldJane .

You may find that just upping your dose by a mg or 2 may get you back on track, but after a month it might take more….you won’t know until you try.

But 15 months is very quick to assume PMR is over - it’s not , and as is quoted many times on here you are not reducing relentlessly to zero, you are reducing to find the lowest dose that gives the same relief as the original dose did…and you’ve obviously gone below that.

Athena2020 profile image
Athena2020 in reply toDorsetLady

Thank you for your reply

piglette profile image
piglette

How rotten, personally I would go up to 5mg for a week or so and hit the PMR on the head and then drop to 2mg or 3mg to see if it is OK and then try again when you feel everything is fine. It is silly going through that sort of pain.

Athena2020 profile image
Athena2020 in reply topiglette

Thank you for your advice I will increase the prednisone

piglette profile image
piglette in reply toAthena2020

I think you will find it will make a world of difference.

Athena2020 profile image
Athena2020

Thank you for your reply

HeronNS profile image
HeronNS

You've had super advice here. Once you've got the flare under control (please make sure it is really under control before tapering again) you will feel so much better. My experience - tapered uneventfully to 3 mg by the end of the first year. it took me another year to get to 1.5 mg, and have actually for several years been at doses near 2 mg, with several unsuccessful attempts to go lower. It is nice for me that a very low dose has usually been enough to keep me comfortable, because there are so few, if any, side effects associated with it. If you find yourself in a similar situation where a low dose (below 5 mg) seems to be needed for a long time, do not worry about it, do not let doctors pressure you to taper below what you need, or to take another medication to help you taper off pred. At a low dose, pred is probably as safe a medication as we can have. What we do need is time and patience.

Athena2020 profile image
Athena2020 in reply toHeronNS

I totally agree , my doctor suggested that I taper down this low . Thank you for your suggestions and I will go on to 5 mg. 😊

PMRpro profile image
PMRproAmbassador

You aren't tapering relentlessly to zero - you are looking for the lowest effective dose that gives the same result as higher doses did. As others have already said - you have overshot!

Try 5mg for a week and then go back to 2mg and see if that is enough - or were those aches already there before 2mg?

Athena2020 profile image
Athena2020 in reply toPMRpro

Totally agree and I will go back up after arguing with my dr of course . Thank you for your advice.

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