Waiting PMR Diagnosis : Started in September 202... - PMRGCAuk

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Waiting PMR Diagnosis

Grandmaziggy profile image
17 Replies

Started in September 2023 with stiff hips and buttocks, just woke up like that. Don't know if it was coincidence but this was 3 day's after a flu jab! Gradually over the next few weeks, hip's became stiffer, burning type pain at times down to the knees. Putting on lower half clothes and shoes became increasingly difficult, had to get husband to help (he has progressive MS). Was doing some decorating at the same time and thought maybe at 59 I was just getting a bit long in the tooth for decorating. Over the week's shoulders, elbows upper arm's became painful. GP visit was sent for blood's CRP and ESR were raised. My Mum passed away in November so had to contact GP for sick note, he rang me and said he would put Grief reaction/joint pain investigation on the sick note, and I had to have repeat blood's. The CRP was raised again but the ESR didn't come back as the hospital failed to label it! Had urgent ESR done at the practice on Tuesday, rang surgery this morning blood's are back and GP will ring me this afternoon. Just hope it's to confirm it and get me on Pred, I would rather avoid any medication but reading this forum seems like Pred does the job.

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Grandmaziggy profile image
Grandmaziggy
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17 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

but reading this forum seems like Pred does the job.

It certainly does if it’s PMR -and sounds suspiciously like it.

Welcome - and if Pred gives you a better quality of life -as it will- then take it.

Please keep us informed -and there’s always someone around to help.

If it is PMR -this might be useful to read-

healthunlocked.com/pmrgcauk...

Nanatoo profile image
Nanatoo

Preds are the only solution and I know what you mean about not wanting to take any meds but I’ve come to embrace them by telling myself it’s how any serious medical problem is treated. If I had to have chemo for cancer or a pacemaker for a heart problem I’d just be thankful there was help available and I’ve come to think of preds as just that…help for PMR. Hope you can get the help you need quickly

PMRpro profile image
PMRproAmbassador

Hi and welcome - yes, if it is PMR, pred used properly DOES do the job! And we'll keep your right in practical terms. Hope the GP agrees enough to at least try a couple of weeks of pred to see what effect it has. But DON'T take it as permission to go back to decorating!!!

It probably was the flu jab that was the final straw - although there will have been many other straws in the previous months and years that were building up to the event and had it not been the jab, it would possibly have been the loss of your mother as the next stress on the immune system. Eventually it has a paddy and says I've had enough and turns on your body with the result everything starts to hurt.

piglette profile image
piglette

Your symptoms sound very much like I felt. I could not understand why I could no longer lift things. In the end I could hardly lift my arms to use my knife and fork. When I started on the steroids it was like magic, in fifteen hours twenty five minutes I felt I was back in the land of the living. I hope things get sorted out this afternoon.

Grandmaziggy profile image
Grandmaziggy

Doctor rang me this afternoon, blood's that we're done on Tuesday ESR was high. He said he strongly suspects PMR so starting on Pred tomorrow morning and Adcal

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Grandmaziggy

Ok thanks for update - good luck…

Bridge31 profile image
Bridge31 in reply to Grandmaziggy

If they suggest taking Androlic Acid request a Dexa Scan first to see if you really need it.

Uke1 profile image
Uke1 in reply to Grandmaziggy

Also, don’t necessarily go automatically onto Calcium tablets. I did and later it was discovered that I had calcium build up in my aortic arteries. Irreversible. Ask your GP to check your diet with you and you may find that you intake sufficient calcium.

I wish you luck, pred is the only answer but 3 years on, I am free of it! 🤞

PMRpro profile image
PMRproAmbassador in reply to Uke1

Dietary isn't ALWAYS enough - pred washes your pred intake out faster via the kidneys and having more around is a way ot ensuring there is enough available for alendronic acid to send it to the bones. If there isn't, your blood calcium can become too low and that can be dangerous.

Uke1 profile image
Uke1 in reply to PMRpro

Thank you, PMR pro, you of course will have the correct medical answer!

Meggsy profile image
Meggsy in reply to Uke1

Hello Uke1

If you take vitamin K, it needs to be vitaminK2 which is said to ensure the calcium goes to the areas it is needed, (bones, teeth etc) and not the arteries.

Uke1 profile image
Uke1 in reply to Meggsy

I did take exactly that due to the excellent advice from someone on here.

Meggsy profile image
Meggsy in reply to Uke1

👍

Orange_2022 profile image
Orange_2022 in reply to Uke1

Sorry that happened to you Uke1. Vitamin K can help put calcium in the right place...agree calcium should be taken with care and alongside Vit D and K. Such a balancing act with everything! I'm on Alendronic Acid and I believe you need higher levels of dietary/ supplemental calcium when taking that...

Uke1 profile image
Uke1 in reply to Orange_2022

Yes I did take K2 (see above). Agree it’s such a balancing act. What’s right for one person isn’t necessarily right for another…very difficult!

Missus835 profile image
Missus835

Hi Grandma. Mine also began after first jab in May 2021, and much worsening symptoms 10 days after my second Covid jab. This went on for 5 months undiagnosed. Finally in Jan. 2022 had bloodwork done for RA. Markers very high, diagnosed as PMR, which I had never heard of, put on 20 mg. Pred and what relief! Could actually move after the first dose, within hours. All the best to you. Each journey is unique to the traveler. Stick with this forum, we'll walk it with you.

Freshairfiend profile image
Freshairfiend

sounds very similar to me. Inexplicable pains and usually extremely fit and active. Unable to walk up stairs easily, get out of bath or take clothes on and off without help. Had to wait three weeks for appointment. Fortunately, the gp immediately said I had classic PMR symptoms and did blood test that day. So sorry yours has been so hesitant.

I was also very hesitatant about steroids, being very suspicious of them, but after all the pain and immobility, I have embraced them and I see them in a different way, which helps enormously. I see them as a way of having compassion for myself and I give thanks to modern science and living in 21st century with these opportunities available. You may be able to think of your own way of looking at them which best helps support you.

All the best.

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