Left to suffer!!!

[Nursey30]

I started my journey in January 21 after a winter covid 19 infection, did this kick it off?? I wonder? I could not believe the pain I was in,often reduced to tears,taking Tramadol,Naproxen,Paracetamol and borrowed morphine/fentanyl patches.Wrong I know but my gp wasnt interested. I still have not seen him or spoken to him.

I took myself off to the urgent care dept of the local hospital....no joy.Im medically trained so I knew things were not right and I dont seek medical help unless absolutely desperate.

Finally I managed to speak to a locum ,3 months down the line, who prescribed 60mgs of prednisolone......within hours I was 50% better!!! Next day ,felt great,couldn't believe how well this medication worked!!

Now tapering but have been left to do this ,still without care from my gp.Down to 10mgs and coping ,still a bit painful on waking but I can manage.

Finally have an appointment with a rheumatologist on Sept 1st...yaaayyy!!

Have not been diagnosed with anything yet but reading through all of your comments and experiences ,I'm sure I have PMR.

So thanks for having me in this group and for letting me rant! I know I'm not being a hypochondriac now,which is how my gp practice made me feel.

[scrambledegg]

Welcome to the forum that none of us wish we needed! You’ll get lots of good advice from the experts shortly I’m sure but I had to comment about tapering. 60mg to 10mg in 7 months is quite a drop. If you’re just “managing” on 10mg then I think the experts will advise you stay there for a while to make sure you haven’t reduced below what your body needs to keep on top,of the inflammation. Further advice will be against reducing more than 10% in any one attempt. I have been stuck on 10mg for at least 2 years. Can’t get to 9mg but I’m on my 3rd attempt to get to 9.5 mg. Good luck😊

[Nursey30 in reply to scrambledegg]

Thanks.I didnt realise how high my starting dose was initially, not being a steroid expert.I just did as I was told.Ive been on 10 mgs for about 2montns now but the last doctor I spoke to ,over the phone,and not a regular member of the surgery team was reluctant to give me anymore pred.Refused point blank and said that I should wait to see a rheumatologist!!I went to 5mgs in an attempt to make them last and really kicked of( begged) for more.Felt like a drug addict,as if I want to take pred with all of the crappy side effects.So have just enough now to last me till sept1st and my appointment. I feel as tho they think I'm making it up.

[MiloCollie in reply to Nursey30]

That’s bad. They shouldn’t make you feel like that. This crap is hard enough without them withholding tablets that cost pence! Hopefully you’ll get more sense and more tablets from rheumy but don’t go below 10mg even if you feel better later this month. You’ve had a quick drop this year. Take care. Update us.

[piglette in reply to Nursey30]

I am just horrified that a doctor could refuse a medication that in your case is not one you can just stop without causing you major problems. I am glad you have got enough to last you, but that is not the point. Did the surgery member give you any diagnosis?

[Nursey30 in reply to piglette]

Hi.The surgery member who seems to be the only person to talk to and get permission to have a telephone chat with a doc.is the receptionist!!I've diagnosed myself thru Google and this support group.Its been really good to chat and get advice from everybody.

[HalleysComet in reply to Nursey30]

I eventually managed to speak on the phone to a GP who understood the stress I felt when I did not have any reserve supply of Pred in case of Sick Day Rules. He was sensible enough to allow a prescription of extra 5mg tabs to be kept on the side and used if/when needed. I would suggest using eConsult to say you have nearly run out of Pred. This is an emergency in any GP’s book. There should be an immediate response.

I would also complain to the Practice Manager about having to do phone consultations with a receptionist who is not a medic. That is something my own surgery has a track record of and which I am considering complaining about.

Good luck with your prescription.

[PMRpro Ambassador in reply to HalleysComet]

Keep an eye on the stash though - all too easy to let them get past their use by date.

[Nursey30 in reply to HalleysComet]

Thanks for that.Im going to record all of this and see what the rheumatologist says.Ive just checked the expiry dates and they are ok.Im really appalled that these GPS seemingly aren't aware or dont care about the implications of sudden withdrawal. Did C19 fry their brains???

[PMRpro Ambassador]

It has been noted several times that Long Covid and PMR have a lot in common.

I would put in an official complaint about the refusal to provide ongoing pred to taper properly. That is putting you at risk of an adrenal crisis - and I'm pretty sure you know what that might involve and the fact it could be life-threatening. You are where you are - stopping pred so precipitately won't change THAT.

I know - what on earth makes them think we LIKE taking pred????

[Darcy200]

Hi there glad to hear your moving forwardMy journey started in December and took me getting to my lowest point to seek help

I'm heading towards 60 next year and thought it was just my age( future wasn't looking good )

I'm a nurse and thought this is ridiculous I'd be advising people to get to the GP recently had blood results which showed a high ESR so doing a rule out course of pred it's not been a week yet and I seem to have good days and bad but I think I'm approaching it wrong pushing myself to walk and exercise even whilst working full time( need to factor more rest in 😅)

Appointment again Friday to see where I am

Hopefully you'll get the help you need certainly great group for support

Take care

[PMRpro Ambassador in reply to Darcy200]

"I think I'm approaching it wrong pushing myself to walk and exercise even whilst working full time( need to factor more rest in"

If you want to get into a state you can exercise and work you need a bit of rest now - let the pred do its work first. Then you will have to "train", starting from a low level so you don't overdo it - because that is absolute poison to PMR ravaged muscles.

Have you looked at the FAQs? I'm sure you'll find useful information there.

[Nursey30 in reply to Darcy200]

Hi. I'm a nurse too and 65.I tried to keep up with my exercise from the start,going to the gym,walking,swimming.....definitely a case of I wont be beaten.But I've got to say I've never felt so weak and unfit.I only work part time so easier for me.

I hope you get sorted,its no fun is it??