6 months on zero pred?!!!!

[MamaBeagle]

I took my last minute 0.25 mg of pred Easter weekend 2022.!!! So far all is well. I had some aches and niggles to begin with then a really painful right hip. I did exercises for bursitis for a month,they weren't making any impression on the discomfort do made appointment with physio.

She turned out to be very familiar with PMR☺️, booked me an x-ray,still waiting, it's a 20 week wait time. She also gave me exercises, these had no effect after several weeks. Was thinking wear and tear.....

Meanwhile I started myself on glucosamine and chondroitin plus curcuma. I'm now pain free so whether it's just time,the great healer or the pills I pop I don't know.

I do watch out for any hint of a return of PMR and I've still got the good old prednisolone on my repeat prescription so I can order some should it flare up again.

I can't thank enough all the wise and knowledgeable gurus on here who know so much about this debilitating and frustrating illness ❤️💕

[Telian]

Congratulations on reaching zero Mama. That’s a long wait for x-ray Mama. Where are you? I’ve just booked mine for next week.

In the meantime you seem to have struck it lucky with pain relief. Let’s hope it continues. Heard of glucosamine but not the other two. You have your back up plan which hopefully you won’t need….think Pro will have more useful information for you.

[MamaBeagle in reply to Telian]

Im in East Riding of Yorkshire. I think it depends how urgent it is🤷

[Telian in reply to MamaBeagle]

I’m in West Yorkshire.… yes urgent has to be quicker but 20 week’s isn’t acceptable. I’d ask PALS at the hospital you’re going for X-ray to look into it - just a phone call via switchboard - worth a try. Don’t mention currently no pain as that could change.

[DBE46 in reply to Telian]

I’m in West Yorkshire and waited less than 2 weeks

[PMRpro Ambassador in reply to DBE46]

My daughter (ED in Scarborough) says Hull is in a dire state

[MamaBeagle in reply to PMRpro]

Oh dear me!!! So far my experience has been good, this X-ray is the first blip🤷

[PMRpro Ambassador in reply to MamaBeagle]

It would be all the same if it were onset of avascular necrosis. Or a hairline fracture, That a GP hadn't recognised as a possibility. 20 weeks is ridiculous,

[MamaBeagle in reply to PMRpro]

I took OH to lower limb clinic this afternoon. I mentioned the long wait for X-rays,to the nurse she confirmed that it is 20 weeks and can't understand it either.

[Hollybee21 in reply to Telian]

I had an appointment with the Rheumatology Nurse in September, she sent me round to the X-ray Dept and I had mine done in 15 mins.

[PMRpro Ambassador]

Everyone just says "hip pain" - WHERE in the hip and what makes it worse?

Is there not a walk-in x-ray service anywhere? Hull has one at Bransholme - or is Hull too far?

[MamaBeagle in reply to PMRpro]

Pain was outside of R hip extending down to knee, mostly, and only when I walked.

At the moment I feel a fraud going for an X-ray as pain completely gone!

[PMRpro Ambassador in reply to MamaBeagle]

Sounds very bursitis-ish. Have you been walking less?

[MamaBeagle in reply to PMRpro]

I was, yes, while it was painful. Normally make sure I get my 10K steps in but during that time it was minimal, just enough to keep 2 lazy beagles happy.

[DorsetLady PMRGCAuk volunteer]

That's an awfully long time to wait for x ray....especially if it osteoarthritis (which it could be).. think there's something wrong with the system.

Is the physio part of the Musculoskeletal Clinic (which comes under the auspices of the Orthopaedic Dept) - that's assumingly your local hospital has one... Think you need to look at hospital website and see - and then chase up GP, they usually have to request an x-ray before referral... might speed up the process.

[piglette in reply to DorsetLady]

It seems as if they are trying to get people to go privately for smaller things like X-rays. There is a company set up locally in some warehouse and all they do is private x-rays. They are actually quite good value and do MRIs even.

[MamaBeagle in reply to piglette]

Where's that Piglette?

[piglette in reply to MamaBeagle]

Windsor

[MamaBeagle]

Physio made referral, I called x-ray department having not heard anything for 6 weeks as instructed on their form. They then told me that waiting time is 20 weeks for non emergency. All other tests I've had this year have been more than quick! Cystoscopy and CT scan.

I believe physio is part of musculoskeletal team.

[PMRpro Ambassador in reply to MamaBeagle]

Which Trust do you come under? The unit at Bransholme was set up to avoid such long waits, That was 5 years ago though.

[MamaBeagle in reply to PMRpro]

For hospitals it's Hull...whatever the full name is ? Hull university teaching hospitals?

[DorsetLady PMRGCAuk volunteer]

I appreciate non urgent is longer than it used to be, but I've just got one for 30th Oct, saw registrar in outpatients on 13th... and he apologised for needing to make an appointment. O/patients appointments have been farmed out to another building recently - had it been in main hospital could have walked round to diagnostic dept and got it done there and then.

sorry 😏

[Lonsdalelass]

HI, I'm one month behind you! Also doing quite well, managing little niggles with anadin/paracetamol, not every day, just when they start, and it seems to do the trick! But like you, I'm a bit like "never say never"...and hoping PMR won't strike up again.

[krillemy]

Fantastic! How long where you on pred.?

[MamaBeagle in reply to krillemy]

4½ years. Started on 30mg. High I know but it did zap the inflammation almost immediately. Down to 6mg a year later. Then another 3½ to get to zero.

[Poshdog]

so pleased to hear - lovely news to wake up to. Poor old NHS, creaking at the joints but hope they eventually give you good news soon

[Pr0jection]

Well done you! Nice to hear some positive news...all the best.

[Alazarin]

thanks for posting this, I’ve been off pred a whole week now. Lots of niggles, but feeling so much better. Good to hear you got through it. I’m so glad to be having better sleep, exhaustion lifting, no sweats, but muscles are so weak. Am waiting for physio.

Also put myself on Max Mosleys diet plan and lost 1.5 stone. So pred weight nearly gone.

[Wallysma]

All body parts crossed for your continued PMR success! As someone else said we need to hear about a PMR tribe member healing. May prednisone become a thing of your past. Take good care. Sending healing vibes your way. Good luck with the x-ray.

[Tiggy70]

Great news on the Pred. It gives us all some hope. Here’s hoping you can get your X-ray much sooner🌸

[WeAreAllMutants]

Thank you for the great news! You’re inspiring.

Keep on keepin’ on.

[Elephants2019]

wonderful news to read this morning-thank you for sharing.🤗

[Missus835]

That's awesome. Very happy for you!

[Whitner]

So happy for you MamaBeagle!!! As said above, it gives us all hope!!

[LemonZest11]

Gread news and long may it continue!