Distinguishing symptoms between PMR and GCA. - PMRGCAuk

PMRGCAuk

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Distinguishing symptoms between PMR and GCA.

cycli profile image
13 Replies

It's been 2 weeks since I noticed a distinct improvement in muscle condition and response. It's still wasting away but they work properly now almost like they used to before PMR. I do the same routine and walk each morning so have logged the improvement. I believe this is because the inflammation is being controlled and it's allowing the muscles to respond properly. Still on 40 mg and hoping the blood tests confirm this improvement. However, I am still waking up each morning to slight headaches, low level pressure in the eyes (at the back) and a very slight stiffness in the neck. No jaw problems. This usually clears some 2 hrs after I take my pred. and I'm thinking that my GCA is still low level active but because the PMR is under control the GCA inflammation uses the excess to mop up residual inflammation. I have always thought my dose is marginal to cope with both conditions but am loath to increase. Do you think that the two conditions can react differently in regards to inflammation as I am speculating?

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cycli
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PMRpro profile image
PMRproAmbassador

The underlying cause of the GCA remains "low level active" (or "not so low level active") for a very long time - it is an autoimmune disorder that attacks your body tissues causing inflammation and swelling - you start with a high enough dose to relieve the inflammation and so reduce the swelling quickly, sometimes it needs up to 80mg or more if the patient has visual symptoms which suggest their vision could be at risk. With lesser symptoms they use less pred - the higher the dose the more adverse effects. The PMR is also part of the GCA - the pred works for both, it isn't diverted for one or the other, but PMR alone would require a much lower dose.

Pred itself can cause headache and eye discomfort isn't unusual with dry eye syndrome - maybe try some eye drops or spray for dry eyes?

cycli profile image
cycli in reply toPMRpro

thanks for this. it could be the pred then and the dose is effectively reducing the inflammation. That's helpful.

PMRpro profile image
PMRproAmbassador in reply tocycli

If it gets worse then always speak to the doctor - when it is stable you are probably OK.

in reply tocycli

My eyes have felt weird ever since starting Pred at 15 mg. Had to increase to 40mg when GCA kicked in. My optician told me the heavy feeling is nothing to do with Pred.....I beg to differ. Half and hour every morning after taking Pred my eyes feel awful and the feeling also feels like I've been crying for a month...so hard to describe. I do go for regular eye pressure tests which have decreased once the pred started to come down. Recently had to increase again due to some symptoms of GCA again.

cycli profile image
cycli in reply to

thanks Staplehurst. It's confusing isn't it trying to differentiate. PMRpro perhaps divert was the wrong word. but in a sense because the PMR is controlled with less pred. that will leave an extra share of the dose to cope with GCA. It's just how it feels and it has happened every day now for nearly two weeks while the PMR seems to have been controlled sufficiently for the muscles to be working as they used. It's just a gut feeling but I think somehow the way GCA works is having this effect.

PMRpro profile image
PMRproAmbassador in reply tocycli

No - they are the same thing - PMR just responds to a much lower dose, The high dose for GCA covers both.

cycli profile image
cycli in reply toPMRpro

okay I understand. It just seems that the GCA isn't yet as well controlled as the PMR so there will probably still be inflammatory indications on the blood tests to back this up. Thanks.

PMRpro profile image
PMRproAmbassador in reply tocycli

That is possibly that you need a bit more - more inflammation there to get under control. I wouldn't hold out too much hope for confirmation via the blood markers. Your symptoms are minor and short lived aren't they? There has to be enough for long enough to trigger the production of the proteins that raise the levels of ESR and CRP.

cycli profile image
cycli in reply toPMRpro

Yes, I think that's about right. It's probably a dose on the margin and just about coping with it. Should show improvement sometime soon I hope. All manageable at present thanks.

cycli profile image
cycli in reply toPMRpro

Update on this. My inflammation is down again to 22. That's a reduction every 2 weeks past from 71 to 30 now 22. ESR is now 26 from 28 abnormal but improving. I am pain free and able to do most things on the 40mg dose. Would like to reduce to 35 but not sure as convinced the GCA still wants to come out and play. Had and eye pressure slightly worse this morning but sorted again within 2hours of taking the pred. I'm booked in for an eye test next week at opticians just to make sure. My sight has changed since the recent prescription for new glasses. What does anyone here think? Should I drop or stay at 40? Dr. hasn't yet come back to me on that. Missed my Dr's appointment as I fell asleep. Happy days. They were very understanding. Booked another one for next week. I never used to be like this and I'm only a beginner.

cycli profile image
cycli

Thanks. Early days for me. It's so confusing especially when one has a period where everything seems to be going well. One wants to be cautious and also to make the most of a good spell. I have no real experience as it's only just over 2 months since diagnosis and medication. Seems like a lifetime but nothing compared to some of you out there. Consultation on 25th after blood tests so timing is good if progress continues. Maybe we are in for a reduction, who knows.

AdoptMeow profile image
AdoptMeow

cycli have you tried splitting your dose to morning and evening to have prednisone working all 24 hours? Taking 1/4 to 1/3 at night could clear up the morning symptoms and make it easier to reduce to 35 mg (25 AM and 10 PM).

cycli profile image
cycli in reply toAdoptMeow

hi AdoptMeow..many thanks for the idea. I have just started doing as you suggest. Split it 20mg 20mg, probably should have done 25am and 15pm but staying with it for now and probably reducing pm to 15 when inflammation controlled. I've had to be busy converting a barn on farm for machines and slightly overdone the work last 4 days but managing ok. Time to rest now and get some control again. All seems to be working though as I'm stretching the waking and hardly any signs of GCA in the morning. Fingers crossed. You never know, I might just beat this yet....(some hope eh? :-) )

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