prednisone, methotrexate, forteo

[Linny3]

I am 6 years into pmr. This is my third try on methotrexate. Gone from 18 mg to 15&1/2mg. In 4 months. Might be having trouble at 15& 1/2 time will tell. (That is where I keep getting stuck)

Just went thru terrible 5 month ordeal with new fractures in spine. I finally decided to face my fear and go on the bone med Forteo. I have a total of 8 fractures. I was very surprised as my dexa scan had improved considerably. The last fractures were so bad I didn’t want to move because it was So painful. Not moving got me into all sorts of trouble. Dehydration and serious edema being the worst. I ended up in the hospital as my legs were weeping and were very painful.

Please get a dexa scan and if need be find a bone med you can live with.

I know it isn’t a race to zero, but get the pred Lowered any way you can, just be serious about getting it done if the body will let you. If not do what you can to save your bones. I went , in a short period of time,from osteopenia- to my bones being so thin, an X-ray goes right thru.

Good luck with this miserable disease.

[piglette]

Are you saying you have never got to 10mg in 6 years? Have you seen a rheumatologist? Methotrexate does not help everyone. What are your blood markers like?

[Linny3 in reply to piglette]

The lowest I ever got was 6mg, the first time I was on methotrexate. My markers have always been low after the first months of high markers. I have been seeing the same rheumatologist and I love her she is great, I have tried 2 other dmards that didn’t work or I couldn’t tolerate. I have been able to stay on methotrexate the longest. Lately Covid and the treatment in hospital really messed me up.

[PMRpro Ambassador]

Since you are in the USA, has no-one suggested trying Actemra/tocilizumab? The methotrexate is obviously doing nothing much which suggests that while it may not be PMR it is unlikely to be an inflammatory arthritis which would likely (but not always) have responded to the MTX.

I think your rheumatologist needs to think outside the box. Good luck with the Forteo.

[Linny3 in reply to PMRpro]

Yes I tried actemra but couldn’t tolerate it. Not sure what else she can suggest

[PMRpro Ambassador in reply to Linny3]

If it really is PMR - not a lot. Maybe leflunomide - it works in some cases.

[Sharitone]

Good luck to you too. I too have several fractures, despite being on all the bone meds. Frustrating, isn't it? I hope your pain has subsided now.

[Linny3 in reply to Sharitone]

This time has been especially bad. It has been a long 5 month ordeal and it is still bad. Better but bad. What bone med are you on.

[Sharitone in reply to Linny3]

Calcium + vit D, and Denosumab (Prolia).Yesterday I watched an online video by two US physios. They said there 3 things you should never do with spinal osteoporosis:

1. Fall

2. Lift without bending your knees

3. Flop into a chair.

I thought I never did (3). But since then I have noticed that I do it every single time! It will be a hard habit to break!

[Linny3 in reply to Sharitone]

ThanksI do all those suggestions. How is it going with the prolia?

[Sharitone in reply to Linny3]

Fine so far as I know, after 3 injections, 6-monthly

[Linny3]

As soon as I can lay flat on a table I am going to ask for a dexa scan. I know it is too soon for the forteo to have worked, but the dr said my bones are very thinAnd I wonder how thin