My Polymyalgia journey so far

[bru12]

I am a 72yr old female who started with neck and shoulder pain in the spring of 2019 by June having difficulty sleeping due to pain. Went to doc's was told it was probably a little arthritis and to take Ibuprofen. I started to get pain in my ribs, unable to carry shopping, even sitting down was painful. Back to doc's many times . Had bloods taken results came back normal, had an x-ray of my back and shoulder which came back showing some advanced uncovertebral joint osteoarthritis in the spine, doc again said take ibuprofen. By Jan 2020 it was taking me 20 mins to get out of bed as my legs and hips were so painful and trying to dress was very difficult. Visited Chiropractor who was sure it was Polymyalgia, she wrote to my doctor and told me to go back to see doc again. Had more blood tests, this time the bloods came back saying I was borderline and the doctor needed to consider PMR. I was prescribed Prednisolone 15mg, within 24 hours the intense pain and stiffness subsided and within three days I was pain-free. I was put on the waiting list to see a Rheumatologist also have a Dexa scan. I am currently down to 7mg Prednisolone I also take Adcal.

A month ago I received a letter fro the Rheumatologist saying due to the Covid pandemic my appointment has been cancelled as I am now on steroids and have had an appropriate response to them. A few days later received a letter regarding my Dexa scan saying that it was on hold due to the Covid situation and they were unable to give me a date as to how long it will be before I get an appointment. I have no idea what the condition of my bones are like and I am quite concerned. Would it be worth paying for a private Dexa scan, and what exactly will it tell me. I walk every day and I am also doing the Joe Wicks senior exercise programme of 10mins per day, but I am not even sure if I should be doing these exercises, am I doing more harm than good.

I feel completely without support. from the NHS

[PMRpro Ambassador]

There is another thread discussing dexascans and whether private is an option - everything is up in the air at present, you may find somewhere that is doing them, I know one lady has. It will tell you what your bone density is pre-pred - pred has a bad name for causing osteoporosis but it isn't inevitable, mine hadn't changed much in the first 7 years of pred. If it is good you may be able to persuade your GP to put off giving you alendronic acid or a similar drug and let you take just calcium and vit D. Since you are already at 7mg I wouldn't worry greatly about the wait for a dexascan - the lower the pred dose, the lower the risk.

In the UK the majority of PMR patients are managed by the GP - and your case has been looked at so they do know it looks straightforward. You have also done very well to get from 15 to 7mg already - just remember you aren't heading relentlessly to zero, you are looking for the lowest dose that works as well as the starting dose did. This is a chronic illness that lasts years - not something you take a dose of pred and then taper off.

[bru12 in reply to PMRpro]

Thank you, I have just read the posts on Dexa scans, decided not to worry too much about scans for now. Will look into taking Calcium, I have just asked on another post how much I need to take and when is the best time

[PMRpro Ambassador in reply to bru12]

There should be at least 2 hours between taking pred and taking calcium - so if you take pred in the morning before or with breakfast, take a calcium/vit D tablet with lunch and the other with dinner.

[Bobbury in reply to PMRpro]

Oh, I never knew about not taking calcium with pred. Ive been taking pred and calcium together in the morning before breakfast. I've been doing this for at least 5 years. Nobody including the doctor has said not to take together. What's the effects of taking them together......a bit concerned now. Just an aside, my doctor never said about taking vit D with the calcium. I found out about this on this forum. Also, Ive been on pred now for 10 years plus and it wasn't until I read about a scan for the bones on this forum that I asked the doctor for a scan. He was well put out, huffed and puffed and said, I'll see what I can do!!!! Anyway manged to get one this Jan and everything is OK

[PMRpro Ambassador in reply to Bobbury]

The calcium stops you absorbing the pred as well, the calcium forms a coating on the pred tablet it is thought. There is somethig the other way but not sure what. But if your dexascan is OK and you are not being pestered to reduce your pred dose - that's fine

[Bobbury in reply to PMRpro]

Thanks for that. I'm always be pestered to reduce but to be honest I'm comfortable with the 7 mg. Even if I try to reduce and get to maybe 6 or 5mg by tapering somewhere along the line I'l get a flare up, so now I don't even try.....I'll take my calcium lunchtime ish from now....

[yogabonnie]

don't go to fast to the end of this. You are doing amazingly well. be watchful for a flare if you drop too fast. Stressful times. Read the book Your Bones by Lara Pizzorno .. and unless you are willing to take bone medicine (Aloneic Acid) (Prolia Fosomax etc) then you dont desperately need a bone scan. I have osteoporosis and refused the medicine and do weigh bearing exercise instead and take Calcium , Vit K2 7 and D3 .. eat lost of leafy greens. I have had NO broken bones. If you do take the medicine one cannot take for longer than 3 to 5 years so why not wait until you are 90!!! Good luck and wow you have done so well. Keep doing what you are doing. I think you can get lots of information here to put your mind at rest!

[bru12 in reply to yogabonnie]

Thank you for your advice. Yes the doctor prescribed Alendronic acid which I declined as it can affect the teeth gums and jaw, and I have always had gum problems. How much Vit K2 7 and calcium should I take daily.

[yogabonnie in reply to bru12]

I take 1500 Calcium and 1 pill of K2 m7 from NOW herb.. 100 mcg

[PMRpro Ambassador in reply to yogabonnie]

You are probably better taking that tablet as 2 halves if you can. The body can't absorb more than 5-600mg at a time.

[yogabonnie in reply to PMRpro]

it's mcg. so only 1 mg (? )

[PMRpro Ambassador in reply to yogabonnie]

Calcium - not the other stuff.

[yogabonnie in reply to PMRpro]

oh duh!!! haha. i see. Yes. I divide it in 3.. I usually only manage 2 so short myself but I eat lots of calcium in food too! thanks.

[PMRpro Ambassador in reply to yogabonnie]

That's fine then - far better than wasting it!

[bru12 in reply to yogabonnie]

Adcal which the doc prescribed comes in a chewable tablet, on the label it says each tablet contains 1500mg of Calcium Carb (equivalent to 600mg calcium) and 4.0mg of cloecalciferol concentrate. I do take each one three hours after Prednisolone. Do I also need to take the K2m7 100mg as well

[bru12 in reply to bru12]

Sorry I forgot to mention I take two adcal daily, one lunchtime and one evening

[Daffodilia]

Maybe have a private scan?