My dad is 78 yrs old was fit and healthy he started having symptoms of limited shoulder movement, pain at the back of his thighs , swollen hands that he couldnt move and fatigue, high crp and esr in blood, carpal tunnel in both hands due too swelling
He has seen a reumy at hospital at hospital and put on 15mg of presidone vit D,calcium also, his crp/esr dropped to normal levels now
the symptoms have got better, one hand his first 3 fingers are a bit numb
he feels ok in himself and can do things around the home like normal
he does seem pale skin tone at times and still gets fatigue
i can also see and feel some swelling infront of each ear
we go back too see the reumy at hospital in 2 week
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bmwm135i
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What has your dad actually been diagnosed with? PMR alone or is it still under review?
This might give you [and him] a bit more info if it is PMR - and yes would expect his inflammation markers to fall, just shows Pred is doing what it should -
You do need to discuss the swelling in front of his ear - does he have any dental issue? And also check the numbness in his fingers, could be CT or RS3PE at next appointment- and do please let us know how he progresses.
Thank you Dorset lady, we got a letter saying they think its PMR, we go back for a follow up, hes teeth all seem ok, this has happened pretty quick, i will write some notes and want too ask some questions too on the follow up
Hello and welcome, DorsetLady will be along with her welcome post with useful information. How long has he been on 15mg?
Regards swelling, one thing to consider is that Pred does make fat relocate to the face, neck, the below neck hump area and the midriff. If it’s the same on both sides and isn’t associated with any other symptoms, it might well be that.
One thing to remember with Pred is that is doing a great job of dealing with the inflammation of PMR, hence the symptoms getting better. What it doesn’t do is get rid of the abnormal autoimmune activity that produced the symptoms. That is still happening, for now at least. Therefore, fatigue is part and parcel of this and Pred also has side effects of its own. Pred can give people false energy so that they do more than their body is happy with right now. This is especially the case when people feel they have a new lease of life with the banishment of their pain. Rest is an important part of this and finding a balance between not stopping so over doing it and not giving up completely and losing function is key.
One more thing, diet. Pred can quickly make blood sugars shoot up and weight to pile on. Cutting out beige carbs and sugars is the key when on steroids. A normal healthy diet doesn’t normally cut it. It helps stop the snack attacks as the blood sugars are more stable too. Start early, it makes life easier later on.
Many thanks,for replying, he has been on pred 2 months so far, 15mg,hes been doing exercises for his arms and shoulders which has been helping with his progress,his weight has stayed the same throughout so far, all the bloods and chest xray they have done all seem fine
Gentle exercise is good -but not too much repetition -PMR muscles don’t always like that.
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Hi and welcome on behalf of your dad. DL and Snazzy have already said what I'd have said so won't repeat it.
It definitely sounds very like PMR and RS3PE is often found alongside it and also responds to pred. I think the numb fingers are left from early carpal tunnel which is also not uncommon.
Any questions, do come and ask. You'll get an answer by next morning at the latest!
So been back for a follow up today, all bloods looking good, i got him too check infront of the ears too,everything seemed ok there too, i think it was due to the steroids causing that
Carpal tunnel is causing the fingers being numb and maybe a trapped nerve. they are going too do some nerve tests soon,
the taper of the steroid is starting now, 15mg,10mg.15mg ...per day for 8 week then follow up
Alternate days of 15mg/10mg is harsh -and not the usual way to taper… it’s a big difference percentage-wise which is really not good on body or for PMR,
Is it because he only has 5mg tablets? Plain white tables can be cut with pillcutter or knife. If he has to do it that way, a better option would be 15mg/12.5mg for 4weeks-and then 12.5mg/10mg for remaining 4 weeks.
But have to say many of us think the alternate day form of tapering is not ideal.
Personal opinion is drop to 12.5mg for 4weeks, then to 10mg for remainder. Then your dad will be at 10mg when he has next review.
Doing it the way he has been advised means he will be in same situation at week 8 that’s he is in a week 1…. So in essence no further forward-if you see what I mean.
Yes thank you makes sense,i will get him a pill cutter, he goes on holiday for 3 week, i wanted him to start the taper after he got home as i felt that was safer
Yes it is… never taper just before or during holiday…but if he loses 3weeks out of the 8, it will mean he may has to speed up the actual taper afterwards - so see how he goes.
Bit of an update, he's now at 10 mg a day for over a month, seems ok , has pain in both knees , one knee does have some damage from a previous accident, sometimes his voice is a bit hoarse , and has a slight tickle cough at times, he also has the head sweats, I've been reading on here and alot have complained about most of the above symptoms
Although one knee may be due to previous injury, you didn't mention his knees as being an issue pre-diagnosis - were they? If so, is the current pain the same as then, and at what dose did it return? Or is it a new symptom?
Just wondering if he’s gone slightly too low on Pred…
One knee was a slight problem years before, when he first got PMR it started in both knees then , thighs then shoulders then hands, we go back hospital in 6 weeks so will ask some questions, I'm not sure if it's the taper that needs a bit of time or like you say the dose is a bit low at this stage, thank you for the reply
His knees had no pain at 15 mg it's started more when he has eventually got too 10 mg, his knee pain is a bit different day too day
Has the knee pain returned whilst he’s been at 10mg?
As said previously, his alternate day reduction plan is not one we would recommend for 2 reasons, it’s harder on the body and also if he was doing 15mg one day, 10mg the next then it’s difficult to know what dose he really needs. If the steps down are done more slowly - say 15 to 12.5 to 10mg [or better still 15-14-13-12-11-10mg] then you know each dose is sufficient before you drop again.
Is he due to stay at 10mg for next 6weeks? If so, it may resolve itself, but it may not…
The lower he has got the more knee pain I feel he has got, he can manage it's just abit annoying for him, we go back in September, so I will ask then, he's never had scans on his knees or them checked really,
The problem is Pred can masked pains other than PMR, [osteoarthritis for example] so it could be returning as he lowers dose..l but I think I'd plump for it being PMR…
He could try an ibuprofen gel [used sparingly] or anything else that is recommended for osteoarthritis - Flexiseq is good, but quite expensive on his knees and see if that help. Might have his answer.
And for the record - I agree with all DL said! It sounds like my knees were early days with PMR and pred. I'd had knee pain due to PMR for a long time (nearly 5 years) and it started to improve very quickly on pred but it was 3 or 4 months at above 10mg before I could really say it was gone. There is absolutely NO sign of OA in my knees - the best part of 20 years after a rheumy bent my knees a few times and announced the knee pain was definitely OA as she "could feel it". Never did an x-ray - my local doctors now use imaging sensibly to rule things in or out!
His knees aren't too bad at the moment,still at 10mg, but he now has,a hard painful calf muscle that has come on with exercise, has anyone experienced this, I know it can be a side effect of steroids and staitins, which he takes both of,on a positive note his carpal tunnel in his left hand is slowly improving
Statins usually cause general muscle aches - not just a specific one... and what particular exercise or is it walking.. Is it what is called claudication - ie. hurts when using it, but then stops with rest?
See if this rings any bells - but it should be mentioned to doctor next appointment - you say he had one in September ...
Was there a sharp pain when it started? Or is it hot over the painful area? DOes it start with exercise and stop when he stops only to restart when he walks again? Has he seen the doctor about it? If not, he really should, just to rule out the possibility of a DVT.
Yes it was when he's walking ,it did go off and then come back again, he can feel it pull if he moves his foot up and down it pulls , we go back hospital for a check up in 2 weeks so go another question too ask , I also read a article the other day that 50 percent of PMR patients have knee problems, he also had pain underneath his foot but that went away
Affected knees are part and parcel of PMR - see this photo for affected parts - and although it doesn't show it, and some doctors don't believe, feet and hands are too.
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