PMR/GCA monitoring and bone supplements

[Sunshine8888]

Hi recently diagnosed with PMR and just started course of steroids in the last week. Doctor has now sent me the tapering programme for following year.

As I have osteopenia of the femur he has suggested I take supplements for my bones. Either calcium and vit D or bisphosponates? Any advice on which I should take and also how do I know how effective they would be as doctor seems reluctant to monitor my condition by future blood tests or dexa scan ( he says I won’t need another for four years). If I can get further blood tests what should I be requesting to be monitored?

I am also concerned re a number of other symptoms I have experienced over the past six months which could possibly be GCA. As I have not experienced them in the past couple of weeks, he insists it’s very unlikely that I have GCA. I did question him regarding my platelet count which has a strong upward trend from 200 to 404, he said it would have to be 900 plus for him to be concerned.

My consultations are over the phone with the doctor, I am not offered face to face and haven’t actually seen a doctor in the last six months. It has been a very long and painful six months to a year to get this far so any advice would be much appreciated. I’ve read so many of the posts here and the brilliant replies, so thank you in advance for anyone who can steer me in the right direction 🙏

[DorsetLady PMRGCAuk volunteer]

hi and welcome,..

Many find VitD/Calcium is sufficient as it’s only osteopenia- but would be good to know actual figures - there’s a wide range.

Plenty of info under bone health in FAQs -

healthunlocked.com/pmrgcauk...

Also have another look at this -which I send before -and re-read in few months when it will make more sense. Also when you feel up to it have a look through the FAQs -but don’t try cram in too much, too soon - your brain won’t cope

healthunlocked.com/pmrgcauk...

What symptoms in particular are you concerned about?

[piglette]

Firstly did the steroids help and improve the pain. If you are taking steroids it is a good idea to take vitamin D with calcium. Your doctor should prescribe these. Personally I would not consider taking bisphosphonates until I had evidence that I had osteoporosis. When did you have your Dexa scan? Last time I was told I could have one every three years. They do seem like gold dust.

[Sunshine8888 in reply to piglette]

I had a Dexa last year and was told it’s a minimum of four years until I can have another. I’m in West Sussex. Decided to go with the Vit D and Calcium supplements. Thank you for replying

[Bcol]

What sort of tapering programme has the doc given you and what dose are you on now? DEXA scans seem to depend on where you are and your own do. Mine have always worked on every two years.

[Sunshine8888 in reply to Bcol]

Hi I’ve copied the proposed tapering programme

Please take the prednisolone as follows:

15mg for 3 weeks total;

12.5mg for 3 weeks;

10mg for 6 weeks;

then reduce by 1 mg every 6 weeks to zero.

[Bcol in reply to Sunshine8888]

That is in line with the general recommendations, but is probably, by our standards a bit on the quick side. Has the 15mg taken away all or most of the pain? Ideally you will feel at least a 70% improvement in a few days, if you don't it may be that the starting dose is a bit too low. Four weeks on each dose would be better and although it works got some you may struggle on the 2.5mg drop for the taper, and 1.0mg every six weeks may be a tad optimistic. There are a number of tapering programmes in the FAQ'S. What symptoms regarding GCA are you worried about?

[Sunshine8888 in reply to Bcol]

Hi Bcol, I would say 70% of my pain has gone away! I will certainly get back to doctor if I feel pain starts to come again. At the beginning of this year for at least a month I had a continuous pain over my head, it wasn’t a migraine or headache, doctor put it down to head neuralgia and prescribed strong pain killers which really didn’t seem to make much difference. One night I woke with intense jaw pain, which lasted a couple of days, then my neck was so sore I had to have physio, from that moment on my upper arms, shoulders and hips, upper legs became painfully stiff. Went back to doctors several times each time blood tests normal, well not reported as out of range and so referred to physio. Endless weeks of waiting and being given new exercises until senior physio examined me and immediately reported to the doctor that I needed MRI and full blood tests as there was a high level of concern regarding my immobility. So latest blood test at last confirmed out of range inflammation markers hence steroids. My platelet count has followed an upward trend in the last six months now 404, out of range starts at 410. Doctor said he has no concerns re GCA as all blood markers are not pointing to GCA along with the fact I have no other symptoms ie head pain, jaw pain at present. As I have glaucoma I am very vigilant regarding anything which might affect my pressures or sight.

Sorry bit of a long story 😊

[PMRpro Ambassador in reply to Sunshine8888]

What is missing from that taper is "The reduction may need to be adjusted for the individual patient." It is not a recipe for a relentless taper to zero - you are seeking the lowest effective dose.

[Sunshine8888 in reply to PMRpro]

Hi PMRpro, thanks to this amazing site I’m learning so much and in particular trying to keep on top of what my doctor should be doing! So I will definitely be contacting him if the need arises 🙏

[DorsetLady PMRGCAuk volunteer in reply to Sunshine8888]

As Bcol has said they are standard, but doesn’t mean everyone can achieve them… and your early symptoms do sound very GCA like. As for doctor not having any concerns, perhaps he should… and yes if any return of those symptoms then you do need to do something.

[Sunshine8888 in reply to DorsetLady]

Thank you DorsetLady, you get to a point when you are bounced around so much that you almost feel like giving up! My last physio was amazing, I actually said to him, you haven’t used two words that literally everyone else had, other docs and physios all said my symptoms were typical of getting older, pains were down to ‘old age’. He said there is no way it’s anything to do with your age, further investigation is needed! I’m so grateful to him. Being able to share my concerns on this site and having people like yourself supporting the community, gives me confidence to ask the questions, not to simply accept! So huge thanks as I start this journey with this amazing community 🙏

[DorsetLady PMRGCAuk volunteer in reply to Sunshine8888]

Tell me about it! .. and yes the words ‘age and being a carer ‘ were bandied around a lot in my case..

.. as someone who lost sight through undiagnosed GCA - I’m always on the alert for similar signs in others…

Hopefully not in your case, but any return of those you mention then action required… and there is more discussion on the association of GCA symptoms in PMR and visa versa - known as GPSD - GCA & PMR Spectrum Disease

[Sunshine8888 in reply to DorsetLady]

Oh bless you, I’m so sorry to hear you lost sight through GCA. Thank you again for the links to more information, it really helps 🙏