Going down.......

[PJarret]

After five weeks on 5mg of prednisone for my fourth bout of PMR since 2002, my rheumatologist has dropped my dosage to 2.5 mg starting today, because of osteoporosis from all the prednisone I have taken over the last 17 years. This is a scary thing for me to do, but necessary.

[Longtimer]

Hope it works for you, but that seems a bit drop from 5 mg..,...good luck....

[PJarret in reply to Longtimer]

It is a big drop, but I have to trust the rheumatologist to guide my path safely. Thanks for your comment!

[Longtimer in reply to PJarret]

Keep us posted how you are.....

[PJarret in reply to Longtimer]

Will do! And thanks...

[YuliK in reply to PJarret]

Dear PJarret

we have all experienced on this forum, that reducing Prednisone so quickly ( in your case by 50% in one go ) will result in you having a flare...it may take a week, but it will happen. Please reduce your Prednisone in 0:5mg. Per two weeks to a month ...

I'm happy that you trust your Rheumatologist but from reports here on forum, not many rheumatologists have personally experienced PMR..

Good luck and keep us informed how you get on. 🌷

Yulik

[PJarret in reply to YuliK]

I will wait for the flare to call my rheumatologist. And I do expect a flare, but I will need a new prescription to reduce at such small increments. Thanks for your advice.

[Hidden]

🤞🤞🤞🤞

[PJarret in reply to Hidden]

Thanks!!

[powerwalk]

Best of luck. Let us know how it goes.

[PJarret in reply to powerwalk]

Thanks for your concern.

[HeronNS]

Oh dear, I think this is a recipe for disaster. As a matter of interest, what steps have you taken to mitigate the effects of pred? I improved my t-score in one year and during most of that year my dose was still above or at 5 mg.

[sheerness in reply to HeronNS]

What did you do to increase your t-score ?

[PMRpro Ambassador in reply to sheerness]

healthunlocked.com/pmrgcauk...

all there

[PJarret in reply to PMRpro]

Thanks!!!

[HeronNS in reply to sheerness]

Link PMRpro sent. I think the combination of providing bones with right nutrients along with some weight bearing exercise is essential.

[PJarret in reply to sheerness]

No t-score was mentioned during the doctor's visit.

[PJarret]

I hope it's less of a disaster than a possible broken bone. I am in my 70s and have to be very careful. Thanks for your reply!

[HeronNS in reply to PJarret]

I was recommended drugs after my first scan. The fracture risk within a certain number of years - can't actually remember what it was, five, ten years? - was 10%. Looked at another way, the chance of NOT breaking a bone was 90%. And I improved the t-score without medication and drugs are no longer being recommended. Biggest risk for fracture is falling, not bone density. Maintain body strength and sense of balance.

[PJarret in reply to HeronNS]

Thanks for this. I will work on balance more at the gym. You are right about it.

[Purplecrow]

Wow! My sympathy to you for your bad luck! Four bouts in 17 years.

It does bring to mind the query....could this just be the same PMR...from day one, having never fully extinguished.??

With current opinions moving toward 5-6 years to remission, your Previous 3 bouts potentially had a life-span of 18 (?) years...and now the next one??

I know our medical/scientific experts will be here quickly...please comment...

Just curious, Jerri

[PJarret]

I don't know how to answer your questions. In truth, physicians here in the American Southwest may know little about PMR because so few people of Scandinavian descent live here. I just have to trust that my rheumatologist is doing what she thinks is best for me.

[PMRpro Ambassador]

There are medications for the low bone density aspect. It is all very well reducing the pred for that reason - but one of the highest risk factors for osteoporosis and fractures is low mobility and poor muscle condition. It is all very well if your 2.5mg pred manages the PMR but if it doesn't there are two choices: either you take none, which is no worse, or you take more and a bone protection medication. Which maybe you should have been doing since 2002.

[PJarret]

I am on some meds for bone density, including a yearly infusion. I am active and go to the gym three times a week and have been since 2006. I think I am doing what I should be doing. I will post again in a couple of days letting you know how the drop in prednisone is working out. Thanks for your concern.

[HeronNS]

Have you been tested for any other causes of your bone thinning? Just for example, one thing occasionally mentioned on the Bone Health site is issues with the parathyroid glands. Once that is sorted bone density recovers. Unless it is dealt with no medication, nutrition, or exercise will improve the bones.

[Noosat]

This seems like big drop. I went from 5 to 4. I started at 2 this morning, after 3 weeks at 2.5 from 3.5.

[PJarret]

It seems like a big drop to me, too. But after about 30 hours at this new dose, I am still not experiencing much pain at all. Still waiting to see what will happen. I was on 5 mgs from March 5th (with none before that for several years) to yesterday.

[Blearyeyed]

Good luck with it , just watch for symptoms carefully and not them down in a diary if they happen and when.

Then at least if you do feel the pain is unmanageable and you are having difficulty from any remaining pMR you can show proof to your Rheumatologist about why you need a new prescription , either back up with the Pred or something else.

Allow yourself a week of more rest than activity as you get used to the new dose , and let everyone around you know you are making a big jump down in your meds and so need as much help and as little stress as possible during the next few weeks / month to help you get used to it.

Keep away from any activities that you know have triggered more pain for you in the past during the first few weeks so you don't push it.

Gentle activity for body and mind and getting the balance right between rest and activity slowly will help the big adjustment and you may well do well.

Positivity and Calmness is key in moving on like this.

If you don't know your t score , ask your GP if they have cut and what suggestions they would have to help you based on the results.

As Heron says the right nutrition and exercise , building up balance and bone strength together will help as much as the drugs.

I am sure if you wanted more tips from experience Heron will help you if you PM her , or ask in replies on this post.

These changes will also help in building your muscle strength and nutrition required to recover easier from the PMR , and make tapering , even a higher drop more manageable.

Even if you have to increase again , following those good bone density guidelines and continuing the good work you already do will increase your chances of having success at tapering at quicker rate even if it isn't as sharp a reduction as the Rheumy wants.

Good luck and let us know how things progress or if you need help , but most importantly if the drop gives you unmanageable symptoms it's better to ask for help from the Doctor early . Take care , Bee xx