What is related to PMR and GCA and what isn’t? - PMRGCAuk

PMRGCAuk

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What is related to PMR and GCA and what isn’t?

doubtfully
doubtfully

Hi fellow impatient patients and hello to those of us who have learned to become more Zen about this illness.

I have been lucky enough to get down to 3 mg Pred again ( for the 3rd time in 3 years) I was stable for months but unable to drop lower without negative impact on movement. 3 weeks ago I took a howler of a cold which is taking most locals 5 weeks to clear. I am much recovered but daily more exhausted. Standing up is a task which requires willpower ! Also last year I tore muscle from my pelvis and thigh in a riding accident and suddenly that leg is weak and painful, no swelling or heat just sudden stabbing pain and the gives way momentarily. Does anyone know if this might be related to ped?

I am considering increasing Pred just to get through the utter exhaustion and to fend of further stiffness which I can feel rolling in. Any thought?

Also and this may be totally unrelated but, while I was at the worst of the virus I sweated so badly I had to change 3 or 4 times a day. I was not at all hot . Always cold and clammy. I decided to check temp and found it on the low side 35.4 under my left arm and 36.1 on exactly the same position on my right side . I thought this was weird so for the following 2 weeks I have checked it and repeatedly found my left side measurably colder than my right . Any idea why?

You would think I would ask my GP but there is not a lot of point in that. I avoid them as much as possible.

Thanks for letting me rattle on, it’s hard to talk without sounding health obsessed or like I am moaning so I tend to keep it all in my head, sometimes it feels good to share

10 Replies
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Addressing only the riding injury, yes, I believe pred can weaken muscles making them more prone to injury, and also making healing much slower. Once again our condition teaches patience! Did you receive any physio after the injury last year to help you gradually restore strength?

You've been ill, and you are at a level where your adrenal glands may not be producing quite enough cortisol to deal with the stress of the illness, plus the pain of the riding injury. I'm not usually one to agree with a pred increase except for definite PMR symptoms, but it does seem like in your case it might be a good idea. I believe the suggested increase is 5 mg extra per day for just a few days, then a rapid reduction back to either the former level if it had been effective, or just above.

And the forum exists so we can share. Hope you feel better soon.

I was going to reply along the same lines as Heron. I get “ hot spots” like the back of my head, that sweat. I can have cold feet at the same time. I don’t see my GP much anymore either. They don’t do anything about odd symptoms, I find. I think that on 4 mgs, I am experiencing patchy Adrenal recovery.

Hello. Did you ever get your riding injury properly checked and rehabilitated? Injuries to complicated areas have a habit of setting up chronic problems if they are left to their own devices, especially when the acute bit is over. Pred weakens muscles too so they need extra care.

If you did not have PMR or GCA I suspect you will have regarded the sweating etc as par for the course due to a nasty viral onslaught.

I don’t know about your underarms but as a nurse when I took temps I noticed people usually had one armpit sweatier than the other and differing temp readings. The sweatier one was usually the cooler. So many other factors affect readings when you are relying on the skin to transmit the core temp.

My endocrinologist didn’t specify what he meant by being ill enough to need to add a bit to the dose, but if it was me I’d say this was an occasion being this low. A few days won’t change the grand scheme of things I’m sure. So yes, you may have some post viral fatigue but given you are at a adrenal challenging stage id give them a few days off.

doubtfully
doubtfully in reply to SnazzyD

Thanks for your reply and yes I am thinking along the same lines that a few days increase will soon be back to where it was. It is just hard to take a step back.

My riding injury was a cracker, I got my foot jammed against a fence post when a horse rushed forward with me on its back and not paying enough attention, my right leg got left behind and then the poor confused horse darted right splitting me like a wish bone! The fall was soft it was the staying on which tore muscle from my pelvis and thigh . Hospital were in disagreement about treatment but the ended up saying to keep it till it got better! Physio gave me good exercises and it took months but it got better until this silly mishap aggravated it.

Oooh! I’ve done that twice with gates over the years , both times with youngsters that rushed through and neither of us gauged the width.

Haven’t ridden since PMR , my last home bred died and she always looked after me—- !

Please, just share! Why suffer alone?

PMRpro
PMRproAmbassador

"it’s hard to talk without sounding health obsessed or like I am moaning so I tend to keep it all in my head, sometimes it feels good to share"

One of the primary reasons for the forum - some have real-life support groups where everyone "gets" it. Others need here. Some probably use both.

There are loads of rotten viruses going about at the moment - so many people are ill. I caught the flu early November which was followed by a chest infection early December. I'm still coughing. You have my profound sympathy. Anyway, what I want to say is that it takes us longer to get over these things and sometimes it is very tempting to up the pred to feel better. My advice is to take to your bed for a couple of days and see whether that makes you feel better. Take paracetamol for aches and pains if you need to - I suggest 3 days, every 6 hours to avoid long periods without. If you feel better, then you have been overdoing it too soon, if you don't then it might be a flare up. (I had a busy, for me, few days last weekend and by Tuesday afternoon I was in such pain, coughing more and feeling wretched. I took to bed, only getting up to forage for food and to sit up in my dressing gown when my husband came home. Didn't sleep much more than usual. By Friday pm I felt so much better, I had a spring in my step and was raring to go. No flare up - just overdoing the fun!)

PMRpro
PMRproAmbassador in reply to Odosmum

There is plenty of reason why most Germanics treat a cold like that - go to bed and let it cure itself. It works - even if we tend to look and them and wonder why they are a bit OTT about a cold!

Odosmum
Odosmum in reply to PMRpro

I'm glad there is a precedent! I know that I am guilty of overdoing things from time to time- it goes right back to the days when I 'only' had inflammatory arthritis. I decided that I would not let my health stop me doing what I wanted. I know that there is always payback and sometimes recovery takes days, but if I really want to do it, days of rest and/or mild pain is worth it. My take on living with a chronic health condition!

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