Am I typical?

[motherofspaniels2]

I have been diagnosed with PMR for just under two years. I reckon I've had it longer, but I'm not sure how typical my symptoms are.I am currently tapering my preds but struggling to get down from 8mg to 7. I was on 15mg six weeks ago. I started out on 40 initially. I can honestly say I've never had a time since starting preds where I felt back to normal. I had a chest infection and was given 60mgs and actually got out of bed and went to the loo, but that didn't last.

I use several walking aids, from stairlift to crutches plus a boot scooter and a wheelchair and 3 different rollators! I can't walk, roll over in bed or stand up unaided. My hands look like a bunch of sausages, shoulders ache, arms too, particularly my left which has little or no power. My legs cramp especially at night, feel like lead and are powerless! Can't lift my feet to go up steps. I am permanently tired, fall asleep frequently except at night in bed!

Is this typical?

[SheffieldJane]

It does sound to me that you have a number of other conditions that are going on and complicating your PMR. Do you see a good Rheumatologist? You would certainly benefit from specialist input. You have also experienced a rapid taper of Prednisalone that would cause extra suffering in most of us. What was the thinking behind the 60 mgs for your chest infection? Do you have a chronic chest condition?

What other medication do they give you?

Magnesium does help cramp. It seems to me that you need a wise knowledgeable doctor to sort your current state of health out.

I am sorry that you are suffering so much.

[motherofspaniels2 in reply to SheffieldJane]

I have asthma and a history of chest infections, hence the large but fast decreasing Pred dose. I use a combined puffer twice a day.

I take 500mgs magnesium bisglycinate a day, plus vitamin B12, 2250mgs Adcal (bone density) which includes vitamin D3, 15 mgs Lansoprazole(combat sore gut from preds) and 200 mgs levothyroxine for an underactive thyroid.

I was diagnosed by the consultant in the respiratory clinic, I do have an appointment with a rheumatologist at the end of December, haven't seen one before but have seen a neurologist who ruled out the stuff he specialised in! A physio I saw said I had Ehler Danlos Syndrome (hyper mobile joints).

Blimey when I see it written down I think if I was a building I'd be condemned!

[SheffieldJane in reply to motherofspaniels2]

Bless you no! I hope your Rheumatologist is a bit of a star, like mine. It makes all the difference.

[Constance13]

Not typical, no! Rather a rough ride you are having. It sounds to me that you have many more things going on than just PMR. You really ought to see a specialist (rheumatologist - internist), you need help quickly.

All the best. 🍀🍀

[motherofspaniels2 in reply to Constance13]

thanks, got an appointment end December.

[Constance13 in reply to motherofspaniels2]

That's a long time to wait when you are in a lot of pain. How

much pred are you on? What pain killers do you take?

[motherofspaniels2 in reply to Constance13]

It can take up to a year to get a rheumatology appointment here. My GP requested anywhere in Worcs and Gloucs!

I take paracetamol and cbd oil, 7mgs of preds a day.I can't take nsaids(asthma) or cocodamol.

[Constance13 in reply to motherofspaniels2]

Try upping your pred to 10mg to see if that helps. You can go back to your old dose within three days (no need to 'taper' to it) if there is no improvement.

Good luck! 🍀🍀🍀

[motherofspaniels2 in reply to Constance13]

Thanks, trying 8 as was ok on that, but my gut reacts badly every time I up the steroid dose.

[Hidden in reply to motherofspaniels2]

You need coated pred to stop it upsetting your stomach. It should mean you can stop the ppi stomach protection. Because you have (presumed) pmr the reductions aren't as fast as you are used to and the yoyoing for the chest might be adding to your problems. I would talk to your gp on the phone, they supposed to call you back. Ask if you can increase to 10mg until you see rheumy. That will give your body a chance to calm re pmr. You can see what's "left over". Make a note of the complete time line of symptoms for rheumy then report how the increase was. Did it help or is another auto immune or other condition tagging on for the ride.

You don't know how much I love the picture of your dog. How on earth do you cope with 2...1 runs me ragged. 🤣🤣🤣🌻

[motherofspaniels2 in reply to Hidden]

Thanks will do. Dogs are brilliant as give me company worryingly I talk to them all the time and that answer back! Nuts? Yep! Spaniel brain!

[motherofspaniels2 in reply to Constance13]

I’ve taken 10 today, fingers crossed

[Hidden in reply to motherofspaniels2]

I hope it helps. It's building a picture for rheumy and full diagnosis.

I taught mine to whooo hooo and I do feel like we have mini spats. She does pick all. Her stolen paper and other stuff up for her evening biscuit so saves me bending. 😂😂😂

[Constance13 in reply to motherofspaniels2]

Wow! So glad I don't still live in the Cotswold. Miss it sometimes though!😏

[motherofspaniels2 in reply to Constance13]

It is lovely but try even parking at Worcester Royal or Cheltenham.....agh!

[Hollyseden]

Oh dear you are having a dreadful time. As others have said, it sounds like maybe more than PMR going on. I hope you do get to see a rheumatologist soon. There will be a wise one along soon, I'm sure, to give you good advice.

[PMRpro Ambassador]

MY suspicion would be that it isn't PMR but possibly a form of inflammatory arthritis although that should have been improved at least some by the high dose pred. If a physio suggested ED - that opens up a raft of other possibilities and I hope Bee (Blearyeyed) will dive in here because it does sound as you two have a fair bit in common! The sausage fingers you mention may be significant too - something a non-rheumy diagnostician would be unlikely to be aware of, nor the fact that PMR can be a form of presentation for other things.

Is a single private appointment an option? Is Chertsey too far to travel?

[motherofspaniels2 in reply to PMRpro]

interesting, thanks. In response to going private I remain sceptical! We lived in Oz for 10 years and used both the private and public health service. The issue I had was lack of communication with other specialists, and duplication of tests. There is a whole industry in Oz devoted to providing tests. Go to a new doctor and you pay to have same tests all over again!

I had a lovely knee specialist out there who laughingly told me he'd paid off his mortgage and his kids were through Uni, and for that reason he recommended to leave my torn cartilage alone and it would heal in time, and it did.(took several years mind!)

[PMRpro Ambassador in reply to motherofspaniels2]

My thought was more getting a competent rheumy (especially with regard to PMR/GCA) who will then probably put you on his NHS list if you don't mind travelling that far to see him (I would). The test industry in the UK is a bit different. You do also (theoretically) have the choice of what hospital and, to some extent, NHS consultant you see. Those who do private all work in the NHS. Except maybe Harley St ones ...