Bone density scans

[AmberAliona]

Bone density. I was diagnosed with PMR 2 months ago. I was reading with interest those who have had bone density scans. I had one last year and was told I was fine. Considering that I had a Potts fractured if my right ankle 44 years ago, fractured my right foot 14 years ago, fractured left foot March 2016, fractured left foot again November the same year and injured my Achilles Tendon last July, I wonder how accurate that scan was. Also DVT in right leg 3 years ago. I also suffer from Barrett’s Oesophagus and Asthma. So PMR is the last straw. The pain is very debilitating but I’m trying hard to keep cheerful. Not easy.

[SnazzyD]

Were these fractures traumatic fractures or spontaneous? Getting fractures isn’t necessarily a sign of thin bones, it’s more whether they were appropriate to the force or event or not.

[PMRpro Ambassador]

The old fractures are not significant. I broke my leg 23 years ago - skiing, so it wasn't of interest. Achilles tendon problems have nothing to do with bone density - mine was due to pred plus the wrong antibiotic. DVT is also nothing to do with bone density.

I had a dexascan shortly after starting pred, another about 3+ years later and another after 7+ years. I am still osteopeneic, the change is not significant.

Are you not on pred for the PMR? If youa re and still have pain - either you need a higher dose or it isn't PMR.

[AmberAliona in reply to PMRpro]

I am on Pred. Started at 30mgs now on 15, but seeing doctor next week to review. Think I’m having a flare. I haven’t been referred to a Rheumatologist.

[PMRpro Ambassador in reply to AmberAliona]

How did you get from 30 to 15mg?

[AmberAliona in reply to PMRpro]

Started at 20, then up to 30, back to 20, now on 15.

[PMRpro Ambassador in reply to AmberAliona]

I'd suggest your reduction steps were simply too big. 30mg should manage PMR - if it doesn't it may well not be PMR. However, no drop in dose should be more than about 10% of the current dose - 10mg is 33% and far too big for anyone. 30/25/20 may work. Then drops of 2.5mg to 15mg is more than enough. From there, 1mg at a time works so much better.

[AmberAliona in reply to PMRpro]

The bloods confirmed PMR. The jump to 30 was because of vision issues and was only for 5 days.

[Hidden in reply to AmberAliona]

The blood work confirmed inflammation and treatment with pred and reduction of symptoms support diagnosis. I dont think drs explain it properly. There is no specific blood test that confirms PMR. This is important because some people have symptons but the inflammation markers never rise. Also, there seems to be an idea that once blood work is "normal" at say < 15mg there is presumption that pmr is gone. It hasnt its jyst the pred doing its job and reducing inflammation. For some reason dr then advises fast reduction and pmr symptoms return. Thats why it is important to reduce slowly. I can only do 0.5mg reductions. Hopefully symptoms dont raise there heads again but often do.

Like many many others on here i am on second reduction from 15mg and currently at 10. Slowly slowly catchee 🐒

[AmberAliona in reply to Hidden]

Thank you, but my Dr did explain all that. She also explained that the improvement was due to steroids doing their stuff and not the disappearance of PMR. I probably expressed myself badly. She also said to call her at any time if I needed help.

[Hidden in reply to AmberAliona]

Thats brilliant. The stories you see on here make me shudder. I think apart from initial reduction issues i have had a reasonable level if support but this forum has helped me undrrstand the mechanics of it. 🌻

[Klah in reply to AmberAliona]

Don’t forget to take the Calcium and Vtamin D...I believe it has been documented as helping maintain bone health.

[AmberAliona in reply to Klah]

Thank you. Taking both .

[AmberAliona in reply to PMRpro]

I understand that my other problems have nothing to do with bone density.

[Suedeshayes in reply to PMRpro]

Hi, I have had both my Achilles’ tendons very painful am now seeing a physio for treatment and exercises. The first one grumbled for a while, then became very painful. I thought that the other flared because I was relying on it so much. But are you saying that there is a link between Prednisone and Achilles problems? What did you do and how long to get better?

Thanks, Sue

[AmberAliona in reply to Suedeshayes]

No, I don't think there is a link. I only mentioned it as I seem to have had so many fractured and injuries. I have regular physio appointments and a set of exercises to do daily. Don't always achieve them especially since ONE struck, but it's getting better. Good luck

[PMRpro Ambassador in reply to Suedeshayes]

There IS a link - rarely pred can cause achilles tendonitis. It is even more likely if you are given (or have a history of) quinolone antibiotics - their names end in -oxacin.

[AmberAliona in reply to PMRpro]

Hi, I didn’t know that, but I hurt my Achilles falling down out of a train. Maybe it was the start of it all.

[DorsetLady PMRGCAuk volunteer]

Hi,

If you’ve only been diagnosed for 2 months then I would say your reductions too quick. You really need to stay on initial dose for at least 4 weeks - 6 is better, but I’m guess you didn’t stay that long!

Your visual issues may have been due to the Pred rather than the PMR, but it’s always best to be sure. The initial 20mg should have been enough if allowed time to get a grip of the built-up inflammation.

If you’re having pains, then maybe an increase to 20mg would be appropriate, get yourself stable, and then start again, using smaller tapers. You may manage 2.5mg in 2 steps to get you to 15mg, but some find that difficult, and with the start you’ve had maybe that’s you.

Have a read of attached -

healthunlocked.com/pmrgcauk...

[AmberAliona in reply to DorsetLady]

Thank you. This has been very helpful. I'm seeing my GO tomorrow, so I think she will increase my preds again. She is very good and her mum has PMR, so she is very open to anything I have to say.

[Charlie1boy in reply to AmberAliona]

Hi,

Well, this is probably just a coincidence, but the GP who diagnosed me with PMR, has a mum with PMR! You don't happen to live in the Leamington area do you?

Can't add much to the helpful answers you have already received from PMRpro, and DorsetLady, other than to thoroughly endorse what they both say. My reductions from a 30 mg start were to 25mg, then 20 mg, 17.5 mg,15mg, 13mg,11.5 mg etc, then either by 1 mg or a half mg from then on. Also, I didn't contemplate a reduction unless I felt relatively pain free. Been going for more than 3 years now, and am on 5.5mg, so it has been slow progress.

Good luck

Paddy

[AmberAliona in reply to Charlie1boy]

No, I live in Cornwall. Coincidence though. Yes, I’m sure you are all right, the reductions have been too drastic. Anyway as I said I’m speaking to her tomorrow so I’m sure I’ll get it sorted. It’s a hideous thing isn’t it?

[Virginia3]

Staying cheerful through the pain is not easy. This morning I can't walk but I have so much to do. Having a coffee and going try to stay cheerful too! Good for you!!