The SED rate journey I've been on --
Posted , 12 users are following.
I've been rereading many of your posts and feel for all with this disease - oh, my! Then I went to my doctor's online chart in which I can read my lab results and checked my SED rates for the last year. At this time last year I had tried hard for the rheum. to cut down on pred. My SED rate ended up 120, the highest it has ever been. I went back onto about 20mg pred and the rate went down to 62. Over the course of the year the rate has never been below 49, mostly in the 50s. I am in pain all the time, cry with depression a lot, and can't do what I want. But the dr is convinced that my PMR should be over with, as I've had it four years or more. When she sent me to an endocrinologist, he was more up to date and put me on pred plus hydrocortizone. But I am not any better. 20mg of pred seems like it ought to help me more. I doubt I can get either dr to prescribe a larger dose, either. But one time I did what I wanted and took 25mg for two days and the third day I felt so fine! What do you all think? Anybody in the same situation?
0 likes, 11 replies
Silver49 DebbieHurts
Posted
I don't know what to say other than I am so sorry you are in such pain. I think I'd be looking for another doctor. I know someone who was 15 years on Pred so it's early days and it doesn't sound like your doctor is very understanding. Have you managed to be on a lower dose at any time without pain. I see you asked to lower but needed to increase. Did you lower too early and now it needs more to control it? hope someone else can advise. Best wishes.
ptolemy DebbieHurts
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Michdonn DebbieHurts
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EileenH Michdonn
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EileenH DebbieHurts
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Sounds fair - you have been allowed to get into a major flare so you will probably have to start from scratch. But there has also to be the question is it really PMR? And I'd be looking for another doctor.
Maybe this would help?
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
The median duration of PMR is 5.9 years - you are well within that. And then there is this:
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
where in Recommendation 3 they give a range of starting doses up to 25mg - so needing 25mg is also OK according to the experts.
richard07199 EileenH
Posted
Hi Eileen.
The study you just referenced...https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings... is very surprising. If I understand correctly, the study group taking pred had no higher incidence of osteoporosis than the control group which was not on pred.
That is significant. I am taking alendronate along with the pred. to remove the possibility of prednisone induced osteoporosis. I don’t like taking it because of its own side effects. Do you think this study is telling us there is no need to take alendronate if a bone scan says you have healthy bones?
EileenH richard07199
Posted
Whether that is what it is saying or not (and yes, I think it does say that) - I have not taken alendronate as my bone scan right at the start was OK, a slight amount of lowered bone density. I think the scores were -1.3 and -1.1 or thereabout. After 4 years on pred, a lot of it at above 10mg/day, my scores were unchanged although not done on the same machine. The last scan was -1.5 and -1.3 I think - still fine and that was after well over 7 years on pred and taking a calcium/vit D supplement religiously. That has been shown to reduce the likelihood of bone density loss.
By no means everyone develops reduced bone density when on pred - and unless you have had a dexascan before starting pred no-one is in a position to say whether it was the pred or already there. I will take something if they ever show me my bone density is very low and I am at a high risk of fracture. But I refuse to take it "just in case" - I take enough other stuff and polypharmacy is a risk factor for falls as well! There are many many things you can do to reduce your risk of falling that have no side effects.
There are a lot of us on the forums who have not taken bisphosphonates - and we are very glad now they are beginning to see the downsides of longterm use of them, in the formation of cracks in the bone which INCREASE the risk of fractures. The recommendations now are that bisphosphonates should not be taken for more than 2-3 years - and if you choose to be on Prolia you either stay on it for life or have to switch to oral bisphosphonates if you stop the Prolia as there is a major risk of rebound loss of bone density and sontaneous fractures. I don't know if the doctors who press us to take them are as aware of these problems.
DebbieHurts EileenH
Posted
Eileen, I have taken three prolia shots. Should I stop taking them? I had a bone density test which showed I was good at the beginning of this polymyalgia, but not recently. But a year ago when I was taking alendorate I had two fractures in my back that I attributed to prednisone. But maybe they weren't caused by that steroid. I don't know what one should do!
EileenH DebbieHurts
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No - discuss it with your doctors. You should never just stop taking any prescribed medicine without discussing it with your doctor. And after all, after 3 Prolia injections they have to make a decision what you should now do - you are already in the system so shouldn't just bail out. It gets discussed on the forum for exactly that reason: so you KNOW you have to become better informed.
celia14153 DebbieHurts
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DebbieHurts
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I forgot to mention my appt with the psychiatrist. He was the one dr on my side! When I told him I was crying a lot daily and feeling very depressed about my life, he said that even though the prednisone makes me gain weight, it is important to take enough of it to help me with the pain. Other pain meds don't work on this sort of pain. He also said that when I see him 3 months from now I need to have gone from 288 pounds to 280 pounds. I am trying so hard!