Has anyone heard this before?

[annieg1890]

Good morning everyone, I did post previously when I worked for an arthritis charity which is when is was diagnosed with PMR. I was about 51.All the classic symptoms and nothing worked until I took prednisolone.

I have managed my own dosage during covid, and reduced my dose from 20mg a day to 2mg a day now. I did get some help from Methotrexate and leflunomide over the last few years.

Rheumy discharged me early this year. However I wasn't feeling great recently and asked to see a rheumatologist again.

When I got an appt she told me I didn't have PMR but she thought I had fibromyalgia.. based on the fact she can't see any elevated CRP levels on my records...but I know I have had those readings.

she's given me another load of pills, made me very sick so I have stopped taking them.

It's all so frustrating. I actually only went to see the rheumy to check if 2 MG of pred and ibuprofen top up was ok for the foreseeable future .

Has anyone else for to the point with low dose pred and uses a top up?

Or a different diagnosis?

Thanks

Anne

[PMRpro Ambassador]

The usual chestnut - PMR can exist without raised CRP. At any stage. I have only had a raised CRP once, it was a cardiac problem (a.fib) and was back to normal range the following week.

Does pred work if you take more? Does the ibuprofen work? That DOES suggest it isn't "just" PMR though.

When you say you "don't feel great"? In what way?

[annieg1890 in reply to PMRpro]

Hi and thanks for replying.. if I take 3mg of pred I feel normal, my stiffness in my.shoulders and hips is hardly noticeable.I have been told that I have osteopenia. And I guess that's from the the pred use, so trying to keep it as low as possible, hence my question about taking ibuprofen as well.

I take alendronic acid and calcium and vitamin d.

If I thought or knew for sure that half an MG of extra steroid wouldn't make a difference to my bones I would take 3 mg of pred and feel fab but of course I can't get a simple answer like that anymore from this rheumatologist I saw😞

[DorsetLady PMRGCAuk volunteer in reply to annieg1890]

Osteopenia doesn’t necessarily turn into osteoporosis -and more damage to bones is done at higher starting doses.

Do you have your DEXA scan results? That might help us to give you a better answer.

0.5mg can certainly make a big difference in how you feel PMR wise -and personally I would prefer to take that than add in ibuprofen- which has it’s own health issues .

[PMRpro Ambassador in reply to annieg1890]

Ibuprofen also has long term issues - cardiac and renal not to mention the risk of gastric bleeds. Did you have a baseline dexascan? What are your t-scores?

I had a scan within 3 months of starting pred. It showed osteopenia but at a level that didn't require anything more than calcium and vit D. Osteopenia ranges from almost normal to almost osteoporosis - and there is a VERY wide range in that. In the following 11 years on pred there was very little change in my t-score readings.

If 3mg keeps me able to live well and 2.5mg doesn't I know which I'd choose - there are studies that say the effect of pred at such low doses is very small. But when you get very slightly too low that isn't a static status - the small amount of left over inflammation each day builds up and eventually the dripping tap fills the bucket and it overflows, You will be back where you started, immobile which is also a risk factor for osteoporosis, and needing a higher dose of pred to get things under control again.

[annieg1890 in reply to PMRpro]

Morning, thanks for all the responses. I didn't record the scores. But can get them in may when I go back. Although with the rheumy thinking I have fibromyalgia I'm not sure I want to go back!Can I insist I see my original rheumy?

I'm.going to 3mg of pred today.. life is too short!

[DorsetLady PMRGCAuk volunteer in reply to annieg1890]

As you say, life’s too short….you can ask to see original Rheumy, not sure you can insist…

[PMRpro Ambassador in reply to annieg1890]

Indeed - life IS too short to waste it in pain when 1/2mg makes a difference.

You could refuse to see that rheumy - breakdown of trust or poor relationship. What is your relationship with your GP?

[annieg1890 in reply to PMRpro]

GP is ok, different one every time though. I am going to ask them in the new year to put a request in for my original rheumy.Any way lovely people, Christmas is almost upon us and I have a few things left to do.

Wishing you all no pain and lots of comfort!

Anne

[GpaJ]

l’ve

[Odosmum]

My rheumy likes to check esr levels too although I know this is being phased out. Are you still taking leflunomide? With that and the pred you take, it is no surprise that youyour CRP levels are in the normal range.