Definitive diagnosis of PMR! Phew

[IdasMum]

Happy to have a definitive diagnosis and to recommence steroids.

She's started me on 15 mg for 1 month and afterwards decreasing by 1 mg each 15 days. If all is well then to continue the taper at this level, if not 1 mg each month (I think). I will need to check with my doctor in a week or to know exactly.

She has also prescribed Alendronic Acid 70mg to be taken once per week. Not sure I like the sound of this one! however will give it a go.

I am looking forward to feeling normal again and will deal with any side effects as and when.....will be good to stop bloody crying at the drop of a hat and get rid of much of the pain and weakness.

[DorsetLady PMRGCAuk volunteer]

Hi,

Glad you've finally got diagnosis - even though may not be the one you want! At least you know what's what now.

[PMRpro Ambassador]

That's a start - though I think she may be a bit optimistic with her reduction. Though of course you have been right down already haven't you. The trouble I had was that, having stopped pred and flared, it was more difficult to get under control again - I really hope that doesn't happen to you.

Can you get a dexascan done? Here in Italy we have to pay some of the cost (a whole 36 euros) and get there, 50 miles away, but I had to wait a whole 2 days for an appointment! My bone density didn't change at all effectively in the first 3+ years, it has fallen very slightly in the last 3+ years but is still the normal for my age. I took 4 AA tablets - that was enough for me! I haven't needed them though - so they are saved for later if I do.

Hope the pain goes soon!

[IdasMum in reply to PMRpro]

I had a DXA scan which is why I can say my bone density is normal. I may ask for another (may have paid for it, not sure it was reembursed) in a years time maybe.

I know I can reduce reasonably well and having put her instructions through Google translate I can see that it's 1 mg each 15 days or each month....so I will probably go monthly.

I have some 20mg pred here from several months ago....I think I may add in a couple of 20's this week to give me an initial boost....will see how I am tomorrow.

have just had an amazing osteopath treatment so feeling very, very comfortable right now.

[HeronNS in reply to IdasMum]

Please be aware that if your bone density is normal it is no longer recommended protocol to prescribe osteoporosis drugs. You should have been advised to take calcium and necessary other micronutrients (D3, K2, magnesium) and get appropriate weight bearing exercise. You may never need OP drugs, but at the very least they should be saved for such a time because they can only be taken safely for a few years.

[IdasMum in reply to HeronNS]

I am taking D3 but not calcium....we had a convo I am sure back a while about Brie! I will re-start my daily Brie (as fromage not my favourite food).

Osteo today recommended some exercise however she mentioned to me the first time I saw her, and before the bone scan that as I have been morbidly obese for many years, I am already weight bearing so most unlikely to get osteoporosis. So, all the more reason to not take the AA!

[HeronNS in reply to IdasMum]

In fact if your diet is well balanced and includes lots of leafy greens, for example, you are probably already getting enough calcium. Dairy is not the best source of calcium, unless it's brie or another fermented form like yoghurt or kefir. It's the other things we need, and Vitamin K2 can be hard to get unless your dairy and eggs are coming from grass fed animals; not even grain "finished" allows for good Vitamin K2 manufacture by the animal. Apparently we aren't particularly efficient at making our own K2, and what is available in the usual diet is quite low. The supplements are made from a Japanese fermented soy called natto which by all accounts is an "acquired" taste! K2 is one of the things which guides calcium into the bones where it belongs.

[IdasMum in reply to HeronNS]

Our diet has been pretty healthy for some years now, gradually moved to healthier and organic food. Stopped any trans fats over 10 years ago. I am in process of changing over to a lot of Indian Cuisine....just waiting now for the body to be willing to get out their and cook.

We've been Intermittent Fasting for 6 months now, 6/7 days we have a 16 hour gap in food intake. It's working so well, I hardly notice we're doing it however it's made little difference to my weight. Will continue now as it's our norm, and will continue with gluten free and continue to add in good nutritional practice.

Eggs from our chickens who are mixed fed, they free range but have "layers pellets" to improve their egg quality and production. Most of our meat is organic and we eat greens often and lettuce every other day. Hardly any processed food and since 2 weeks ago 95% gluten free.

I don't get on with Kefir....it always runs away with me when my eye is off the ball and then it dies.

[HeronNS in reply to IdasMum]

You sound like you eat so healthily you shouldn't ever get sick! Frustrating, isn't it? We try so hard, and yet.... Still, maybe it would be worse if we didn't try. Nice that you can have your own fresh eggs! There's a movement in our small city to allow people to raise their own chickens and so far no problems. Don't think I'm ready to go that far, but maybe if my son, the gardener, got interested....

[IdasMum in reply to HeronNS]

Also all the body care products and cleaning products in the house are organic In truth, we do hardly get sick.....which is why I am sick of this.

You cannot beat picking up eggs each day from your own chickens....even now after 10 years of chicken keeping I get a good feeling when I collect their eggs and when I crack them open for cooking, there is no comparison to bought eggs.

[Marcy47]

Hi Idasmum,

If your bone density is OK, you should not need Alendronic Acid. I have been taking them since starting Pred, 13 months ago, but my pharmacist was concerned that I had been on them so long. I have stopped taking them and have changed to Vit. K2 which is supposed to help your bones absorb calcium.

Good luck with reducing the Pred, I am trying to get down below 10mg very slowly.