Androlic Acid????

Maureen, try the Marks and Spencer Greek yoghurt. I tried their Organic one first and it was just like eating cream, no smells or anything!

Much as you like your GP, don't you think you should ask to be referred to a Rheumatologist? GPs are 'general' Practitioners and some are better than others. You really would benefit from seeing a specialist now.

Have I pointed you in this direction before?

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

The final link is to a paper aimed at GPs caring for PMR and GCA patients co-written by one of the top PMR/GCA rheumys in Bristol. If you have a good GP who will discuss your entire progress with you you are often fine staying with them. In giving out AA they are following normal practice and there are specialists who are also convinced by the fosomax marketing.

The first important step is a dexascan - you may not NEED anything beyond calcium and vit D. I didn't then and I don't now. Here in Italy they hand over pred when you have PMR - nothing else. Other things are given if and when needed which I believe is the right way to go about it.

The reason AA stays in your body so long is that it is bound into the bone and is covered then with a layer of new bone - I imagine that once it is in the bone it becomes inactive in terms of its other side effects, once you stop taking it that is it after a few weeks.

The British Society of Rheumatologists guidelines say that: under 65, dexascan and calcium/vit D. It is assumed that over 65 your will be developing osteoporosis - but I believe that is outdated. We have lived a very different life from our mothers' generation although a lady of over 80 on the other forum has recently had a hip replacement and was complimented on her bone density by the surgeon!

But in the final analysis there are other drugs that can be used and they are used when there is a problem, not prophylactically. I'm sure bisphosphonates would probably fine used properly - but before they are used they are supposed to check calcium and vit D levels - if they are low, the AA can't work. Very few doctors do that despite it being mentioned in the data sheet from the manufacturer.

Are you also on statins by the way? They can cause muscle problems - so can pred but each of the effects is slightly different and also different from PMR. I've had them all - that's how I know!

The other links on that other post are worth following too ;-)

Hi Sorry I haven't been on line for a while but was waiting for an appt with my GP before I reported back about the alendronic acid. I have now been off the tablets for 3 weeks and can honestly say I have seen a vast improvement with the burning sensations I was getting in my legs and I can walk better too and after my appt this evening he says It should be OK to stay off them and just keep going with my chewable calcium tablets so that is the good news..............

and now the bad........ I wondered if Mrs O or Eileen could give me some of their vast knowledge and advice again(sorry but I have even told my GP about you both and this forum and he says it is a brilliant idea as people going through PMR will have far more knowledge about it than a GP)

Anyway although I am not getting total loss of movement as I did before I started the dreaded pred I am getting a lot of pain and stiffness again especially in the mornings and sometimes during the night as well, Saturday this weekend during the night was pretty bad whereby it hurt to turn over in bed - and yet it didn't on Sunday night.

I was first diagnosed in Sept 2013 and this is how my steroids have gone so far:

16.09.13 - 40 mg pred

17.09.13 20mg pred

28.09.13 10 mg pred

05.10.13 5 mg pred

23.12.13 10mg pred

03.02.14 8 mg pred

28.02.14 7 mg pred

On the advice of the Dr and I told him about Eileens reduction he feels that as I am in pain again (and it is getting worse) that I should increase again and reduce using Eileens table.

He has suggested I start a 10mg and reduce it slowly but to be honest I would love Mrs O and Eileens opinion as to whether I should just "bite the bullet" and start right from the beginning at 15 mg.

I think it is safe to say the time between Sept and now has been a bit wasted as he obviously has been reducing me too fast.

I hope you have the time to help me make a decision - and your advice would be much appreciated.

Thank you so much for being out there

Maureen

Hats off to your GP for at least believing that those of us on this and other PMR forums who are experiencing/have experienced PMR and/or GCA might have some helpful advice for those struggling - over on another thread a lady has posted that her GP is not a fan and meanwhile she is being left to suffer.

Whereas going back to 15mg would probably really knock the pain into touch, if you can recall at which dose you last felt comfortable and increased just slightly above that then that could also work. Flares are very common in the first 12-18 months of treatment and many people find that increasing by about 5mgs can help. It's very much a case of trying it and seeing what works for you.

Have you had your Vitamin D levels checked? Many of us have been found to be deficient, and such deficiency cal lead to pains in similar areas to those of PMR. Normal levels are between 75 and 150/200 (depending on your local PCT figures) - mine was 36 and following a 3 months course of Vit D3 it improved to 89.

Glad to hear you feel so much better without the AA.

Hi Mrs O

Thanks for your kind words as usual you have been very helpful.

My GP is a lovely man and really tries to do what is best for his patients he is also brilliant with my grandchildren!

I have to go back in a month to check my ESR levels so I think I will have my Vit d tested as well - he also wants to test me for steroid induced diabetes - I have never heard of that. My dad had Type 1 diabetes and I have several nephews and nieces who also have it - but theirs is hereditary.

I think I will go back to 15mgs and start again and follow Eileens reduction plan

As always thank you for your help and for caring about others

Keep well xx

Ditto, ditto... :-)

I'd be inclined to try the 10mg dose for a week first. The effect of the AA will take a while to go completely and this is still muddying the water I suspect. Reducing 10/8/7 since Christmas, together with the AA could be the entire story. If 10mg works, I'd also stay on it for at least a couple of months, maybe even longer. Looking at that reduction schedule just makes me cringe! Bristol would have done 6 weeks at 15, 6 weeks at 12.5 and a year at 10 so a few months at 10 - providing it achieves a good result fairly quickly seems OK to me.

If a week at 10 DOESN'T achieve something reasonable then, yes, back to 15mg and start all over. Remember, it is possible that you will find it a bit harder having already started to yo-yo so flexibility may well be called for. As MrsO has said - we are all different and you have to learn your body and your way.

But I like the sound of your GP - not arrogant and willing to listen. I was beginning to feel quite despondent after some of the things I've read this week! I feel better now!

Good Morning Eileen

Thanks for your reply last night - I quickly switched my computer on this morning before work to see if you had given me any advice and as usual you have !!!!

Between you and Mrs O you really help me.

I have taken your advice and taken 10mg of pred this morning and will do so for the next 7 days and see how I get on, all being well if I start to feel better I will continue for a few months and then reduce using your table.If no better by next week I will try the regime of 15mg at 6 weeks etc - I will be sure to let you know how I get on.

Yes my GP is a lovely man, he is only young and I was worried he would not like the fact I had taken myself of AA but he was absolutely fine with it and actually was impressed when I told him about you and Mrs O so keep up the good work

But more importantly keep well!!!!!

Take Care xx