Update (does anyone feel well on Pred)

[Strippy]

Hello, thank you to everyone who left helpful and kind remarks.

A quick update.

I saw the Rheumatology consultant Monday. She was very thorough and even picked up that my hands were swollen which I had ignored with all the other problems. She thinks this may be PMR related.

She increased the pred to 20mg. discussed all other meds, I had more blood tests, xrays and scans and she is phoning me back when she has results

And the GP phoned me the following day to sort out BP meds. and try and limit side effects from all the pills.

Amazed, I feel so much better on the increased steroids!!

Have much more energy and I can now cope better with side effects and hopefully BP will now come down.

All in all I am amazed at how quickly I was seen and the excellent treatment! Feeling much more positive.

Many thanks for all your support xx

[DorsetLady PMRGCAuk volunteer]

Amazed, I feel so much better on the increased steroids!!

I think some of us may have suggested in previous post, that you actually need to be on the correct dose of steroids… if too low then you have uncontrolled PMR and Pred side effects - not a good mix.

Good to hear you feel better, but just be aware 20mg can make you feel more energised - but it’s a false energy - so don’t get to gung ho about things. Just enjoy being pain free and being positive - that goes a very long way to improving life overall 😊

[Strippy in reply to DorsetLady]

Thank you x

I shall remember to rest as well 😊

[PMRpro Ambassador]

"Amazed, I feel so much better on the increased steroids!!"

We DID say we thought you needed more!! Don't forget this lesson though - we can tell you time and again that you should never feel worse than you did once the starting dose kicked in but it is easy to be in denial and it gets you nowhere. If you aren't on enough you might as well be on none!!

[Strippy in reply to PMRpro]

Yes, but the trouble was my GP kept saying I had to reduce the steroids asap. Now feel confident in Rheumatologist - she clearly has more experience with PMR

[DorsetLady PMRGCAuk volunteer in reply to Strippy]

Sincerely hope she does.. and sensible with it!

[PMRpro Ambassador in reply to Strippy]

And hopefully the GP will learn. Many doctors, rheumies included, are terrified of pred and only want to get you off it. We even hear of patients whose rheumies understands it but the GP is desperately trying to force the patient off pred by restricting the prescriptions.

[Missus835 in reply to PMRpro]

🙋‍♀️

[Angelsmummy]

Bless your heart,so pleased for you,bet you feel a different person now eh?Dont get too energetic though because you feel better,we have all done that and learnt the hard way!Happy painting!xxxx💐😜🎨🎨🎨

[piglette]

I am so glad you are feeling better, steroids are a wonder drug if people use them correctly!! I wish some doctors would only learn. The other thing about PMR is that it is important to rest, rest, rest. Unfortunately it is an illness that you need to treat with respect!!

[arvine]

so glad to hear you feel so much better, my question is , without tests, exrays(hand) bloodwork etc , how does rheumy differentiate betweeen pmr and various forms of arthritis, all my mri s, exrays etc show osteo arthritis, I have chronic pain now, daily, been on pred sincec2016 for pmr, rheumy decided year ago no longer had pmr, wanted me to taper off, coupd be coincidence bit have to say since tapering from 5 mgs to 4 mgs back in April, havevhad several issues with pain, and becoming worse each day, GP and rheumy insist it s arthritis, cant take anything but tylenol and that doesnt help pain, I have pisted before , at my wits end, asked rheumy about the protocol of increasing byb5 mgs for a week or two as seen on this forum his response “ of course it will relieve pain, prednisione is a painkiller” !, reluctant as have side affects last mos , ie labral tears, muscle liss, exascan now shows high risk for fractures and kore, at a loss what to do, but pain all over every day getting me down

[Strippy in reply to arvine]

Oh dear, so sorry about your pain.

The rheumy ordered xrays and ultrasound scans for me - and blood tests - and will phone me when she has the results. How she works out what is causing swelling and pain I dont yet know.

Good luck

[arvine in reply to Strippy]

Thank you, be interested in what your tests show

[cranberryt]

I haven’t heard of swollen fingers with PMR. I tought it usually pointed to other types of arthritis and not PMR. It is possible to have more then one condition. Others may be more knowledgeable than I on that topic though.

[PMRpro Ambassador in reply to cranberryt]

Some people develop RS3PE syndrome alongside their PMR and that causes swollen hands and feet. It also responds quickly to moderate dose pred.

[cranberryt in reply to PMRpro]

Thank you! I always appreciate your expertise!

[Strippy in reply to PMRpro]

Thank you for that info

Rheumatologist said she thought I might have an aggressive for of PMR that can effect your hands. Will wait for results xx

[PMRpro Ambassador in reply to Strippy]

About the best thing that can be said about that is that at least she realises there is more than one version of PMR!! Mine definitely affected both hands and feet and I still have it rather a long time on so it seems to have aggressive tendencies!!