Hi my husband has been very ill with PMR or some related rheumatoid ailment. Put on various doses of prednisone starting 15 reduced to nil then increased to 40 mg after hospital consultation. He is very weak no energy taking all thes tablets plus slow release painkiller and getting nowhere. It would seem that he can’t get any better no matter and the Rhuematologist he saw said he would write to his own doctor and subsequently sent him a telephone appointment for April. He is 84 but up to late July was very fit for his age and then wham. I have had PMR but not so bad came off steroids but 2 years ago suffered a relapse and Rhuematologist diagnosed phsoratic arthritis reduced steroids from a high dose and advised methotrexate. Was reluctant to take same but after sickness etc went on to injection and have stayed on same 25mg. Is there anyone out there who has suffered as my husband is doing any advise appreciated as the medics don’t seem to understand how awful this disease is.
PMR? and lack of energy: Hi my husband has been... - PMRGCAuk
PMR? and lack of energy
If it is PMR then the slow release painkiller won't help. Pred is the "painkiller" for PMR and nothing else does much. How did he respond to the 15mg? Hw has he responded to the 40mg? If that hasn't reduced the symptoms dramatically after a week, the chances are it isn't PMR, or at least not "just" PMR. What do you mean by "getting nowhere"?
What hospital is he under? When did he see the rheumy? Has the GP had the letter?
I know I sound nosey - but that is the sort of info we need to know to come up with sensible suggestions/advice.
He hasn’t responded at all really to any dose of predisolone hence the reason the GP began reducing same. Being in so much pain and no energy after several months was sent to a and e by GP and they admitted that they are not rheumatoid specialist and referred him to a frailty clinic where he was examined and blood test etc carried out and because of high infection in his blood referred to Rheumatologist at same hospital Barnsley. He said to continue with the painkillers backed up with liquid painkiller as required or 4 times daily and would advise GP to reduce steroids. This was last week prior to Xmas holiday so no action yet. In the meantime he has not suffered as much pain as the painkillers kicked in but has grown considerably weaker needing assistance with dressing etc. He doesn’t have pains in his chest or have a temperature or irregular pulse and blood pressure has been controlled but the Specialist he saw in the Fraility department took him off blood pressure tablets. Thank you for your reply just trying all avenues for answers. I think the high infection must have been the rheumatoid factor but I am not a health techno and myself being 81 years old am in despair for him.
When did they put him on 40mg pred? How fast is he tapering from that? He can drop from that fairly fast down to about 10mg, probably faster than the GP has suggested. It could well be the high dose pred that is causing the weakness so the sooner that is reduced the better.
The infection markers will have been the ESR (erythrocyte sedimentation rate) and CPR (a protein) but they are very non-specific and could have been up for any one of many reasons. If the painkillers are helping - good, that is at least one positive.
Are Barnsley ED as nice as they come over as being on TV?
Thanks for your reply he was put on 40 on the 19/12/22 and saw the Rhuematologist next day and he said predisolone needs to come down and would write to GP but heard nothing further so still on 40 was on 15 prior to that for about 5 days and has definitely got weaker each day. The painkillers are keeping the pain down will try to contact Rhuematologist via the contact number I have because I am on Methatrexate I can leave a message for them and they get back well it may be after the Xmas break but will try that. Yes all at the Hospital are nice except the Rhuematologist Professor that he saw who was out of patience perhaps because it was the end of the day. Thankyou again.
Aye well - rheumy profs can be something else!!! Probably upset at having to do some work amongst a load of other experts!
If he's only been that high since the 19th, I would say he could drop to 20mg NOW and after a few days back to 15 and then see how he goes. We bang on about slow tapers - but that is for patients who have PMR and then you aren't getting off pred, you are looking for the lowest dose that manages the symptoms - you aren't. But rheumy departments aren't very good at PMR and reducing the dose. They tend to get things the wrong way round.
Thank you again will try your suggestion and see how it goes was thinking of him dropping to 15 anyway but will do so after trying 20 for a few days and carry on the painkillers as he doesn’t want a return of the severe pain again.
do you mean “inflammation” markers, not infection? X
They are the same - ESR and CRP are signs of inflammation but also rise with most infections. They merely signal something is wrong - but not what or where.
they aren’t the same. One can have high inflammatory markers without any infection. Infection shows in other blood tests. Doctors wouldn’t assume infection from inflammation markers without white blood cell counts etc.
I beg your pardon - I only worked in the field. But maybe I misinterpreted what you meant. The markers for both are the same, ESR and CRP.
However:
"The fact that leukocytosis is associated with infection does not mean that the white blood cell count is a good test for infection, ..."
jwatch.org/em20120511000000...
and
"Seventeen percent of infected patients had both a normal white count and no fever. There are many reasons why temperature and white count can be normal in a patient with an infection. For example, when these may not appear until later in an infection, particularly in elderly populations."
mishkindlaw.com/2012/05/21/...
ok 😊
Hi, I’m sorry he is suffering, and you too. This whole thing is just awful. I have Ankylosing Spondylitis as well as PMR. AS is a progressive inflammatory disease that starts in the sacroiliac joints and often spreads up the spine and can cause the bones to fuse. It used to be called “bamboo spine”. I thought AS was awful until I got PMR. I’d take AS any day over PMR. PMR is just horrendous. I take morphine every day for my pain but it doesn’t really touch it. As for exhaustion, don’t get me started! I’ve brought up 4 kids. I thought life would get easier. I’m utterly exhausted. I really feel for your husband and anyone with this awful thing. No one can possibly imagine what it’s like. I’m single now and have just the one “child” who’s almost 18 at home with me. He can’t offer me much help as he has severe ME. We have been thought significant trauma and I’m convinced that is what has caused all this, in part, Give your hubby a lovely, gentle hug and a kiss. I hope the new year is better for us all. X
Thank you for your kind reply I hope the New Year brings better health for you and yours too.
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