Not sure what is happening nearly four weeks on Prednisone...

[KinnearD]

As I have posted previously, I have been on 15mg - 20mg Pred since 27th August with limited relief of upper arm and pelvic girdle stiffness and pain that follows classic PMR patterns. I improve in the afternoon, have been consistently taking one 20mg dose around 3am for about two weeks now after trying different times including split doses trying to get better cover over the 24 hours. I am in discomfort from about 7pm increasing through until about 5am and then start improving. Thus far there have been four separate CRP readings a week apart. The first 12mg/L, the next three including the one today is CRP: 24 mg/L ( < 6 ) H The GP consulted with the rheumatology dept at the hospital and on their advise I have had a thorough checkup with her and a chest xray - all clear. She has just sent me an email copied here

"I've just tried to call. Unfortunately there has been no improvement in your CRP. This is not behaving like PMR in it's response to prednisone. I think we need to organise a specialist review. I will contact the on call medical consultant, hopefully tomorrow, and ask if there is an acute medical clinic you could be seen in, in the near future. Please let me know if you have any concerns about this plan."

For the record,I'm a relatively small woman of 69. The symptoms came on rapidly though I had bursitis in one elbow over the past year. Perhaps I'm steroid resistant? I do think this is PMR based on the pattern of symptoms. There has been a fair bit of emotional upheaval around me though I am strictly modifying my activities and couldn't rest more apart from actual bedrest! I have dropped about 10lb in weight and have no appetite though I am eating locarb healthy food proteins vegetables and enough dairy. Feel fine on that account

Does anyone have any thoughts? I appreciate your time and wisdom.

[PMRpro Ambassador]

I think your GP is quite right - your symptoms haven't responded typically to pred for PMR as we talk about it so further investigations really are called for. PMR isn't the disorder - it is the outwards expression of some underlying problem and there are quite a few. "Steroid resistant" is a term bandied about but really isn't that meaningful. It makes a lot of sense for you to be investigated fully - and using the options the medical department have access to that the GP doesn't. It may still turn out to be PMR, in the absence of anything else - but at least you will have had the "anything else" ruled out.

Do let us know what transpires.

[PMRpro Ambassador]

Mind you - just been cogitating... It could just be that you need more pred to get going:

rheumatology.org/Portals/0/...

Recommendation 3: "Use the minimum effective dose in the range 12.5-25mg/day"

Believe me, even 1mg can make a difference! I would email your GP the link to these latest recommendations.

[KinnearD in reply to PMRpro]

Thank you. I have sent the link and asked if I should increase time 25mg pending the referral

[KinnearD in reply to PMRpro]

Just filling you in. My GP has referred me to an acute medical unit and I have an appointment arranged for. next Tuesday morning. On the advice of the specialist she spoke to, they have decided to increase my pred to 60mg (from 20mg) short term presumably for just four days when I see the specialist. Perhaps guarding against GCA and also seeing if the high dose controls the symptoms The GP has also prescribed omeprazole 20mg to protect my stomach just while I'm on the higher Pred. I appreciated her offer of extra20mg Pred tablets so I wouldn't have to swallow so many 5mg tablets. They do seem to be taking this seriously. I'm not sure what else they will do at the clinic. I thought they might just up the pred to. 25mg so the 60mg was a shock. Hopefully just for a couple of days though

[PMRpro Ambassador in reply to KinnearD]

At least it is being taken seriously. All the best for Tuesday!

[KinnearD in reply to PMRpro]

Thank you.

[Telian]

I'm no expert but as has already been said an increased dose of Pred might be the answer and if not that's that out of the way. At least they're trying to help you, I'm impressed. ATB

[Stella3]

Hi, I have had PMR/GCA for a year now. I have been reading y our other responses. I agree with PMR pro that you definitely should go ahead and have other issues ruled out. However, I do think that probably they will increase your Prednisone, as that could take care of your symptoms. I had GCA as well, so I started on 60 mg....I am not sure if PMR starts as high as that, but the PMR and headaches/jaw pain from GCA pain did go away gradually. Good luck

[KinnearD]

Thank you. The guidelines for PMR recommend 25mg as the maximum starting Pred. I did send the link to my GP and she confirmed last night that she is seeking a referral for me and will also check with the specialist today about upping the pred pending getting seen by an acute medical clinic. I have no idea how long that will be. Probably not too long. Guess I'm curious about differential diagnoses perhaps Late-onset RA. Patience needed as always.