Does pred cure or simply suppress symptoms? - PMRGCAuk

PMRGCAuk
11,302 members20,583 posts

Does pred cure or simply suppress symptoms?

Casia
Casia

I was diagnosed with PMR just under 2 years ago and luckily managed to reduce my pred to 3 mg in a year and a half. Unfortunately my CRP and ESR have shot up so have increased the dose to 4. I have a bit of pain in my hips and buttocks ( the pain seems to move around)but nowhere else. As I’m concerned at the side effects such as osteoporosis of pred I want to get off them ASAP . I’m curious to know if the pred simply suppresses the inflammation rather than curing it and is osteoporosis a bigger risk than inflammation if I continue to take pred?

13 Replies
oldestnewest
PMRpro
PMRproAmbassador

The pred cures nothing - it is managing the daily dose of new inflammation to allow you a decent quality of life until the underlying autoimmune disorder burns out and goes into remission. The median time for that is 5.9 years - anything from 2 years up is possible. Unmanaged inflammation does damage - and unmanaged PMR is felt to be more likely to progress to GCA when there is little choice but high dose pred to prevent loss of vision. It sounds as if you have overshot the dose you were looking for: the lowest dose that gives the same result as the starting dose did. While 4mg may be enough to hold the symptoms at bay you might be better having a few days at a higher dose just to clear out the new accumulation that sent the markers up. There is no merit allowing a bit of pain just to be at 1mg lower - the inflammation will do more damage than the 1mg of pred.

OTOH, the low dose of pred you have already achieved is doing little damage. It MAY lead to a higher risk of developing cataracts - but probably only sooner than you would have done without pred. A recent study has shown that low dose pred doesn't lead to the side effects most doctors will tell you are inevitable:

practicalpainmanagement.com...

As a personal example: I have been on pred for 9 years (I have had PMR symptoms for 14). After over 7 years on doses above 9mg for the majority of the time my bone density was barely changed from the baseline level when I first started pred. I had no sign of cataracts or diabetes (although I do eat a low carb diet). I had gained weight with pred and lost it all again with the low carb pattern of eating. There is no evidence I have been on long term pred.

Casia
Casia
in reply to PMRpro

Thanks so much. Your reply is very helpful. I suspect I have lowered my pred too quickly in my anxiety of having to take it.

PMRpro
PMRproAmbassador
in reply to Casia

It is very common - and a problem made worse by the average doctor's terror of pred. And in the end they cause patients a great deal of trouble and they end up taking more pred than they really need have. You are not alone!

Lynnray
Lynnray
in reply to PMRpro

Thankyou pmr pro after reading your answer I had a light bulb moment why am I putting up with all this shoulder and arm pain because I have a rhumb app in Oct and she wants me to reduce to nil preds she doesn’t have the pain, she wants me hooked on pain killers which have there own evil side effects, so excuse me I’m off to get a few more preds then me and my gorgeous g randson are going to hit the park running ,,,,,😅😅😅😅😅

piglette
piglette
in reply to Lynnray

Hi Lynnray, do the other pain killers help? If they do they are probably helping something else not PMR, if not your rheumie should think again. Why does your rheumie want you at zero pred?

Lynnray
Lynnray
in reply to piglette

I have got bursitis in both arms and impingement

Which got diagnosed after I started preds I think she doesn’t believe I have pmr my esr was 98 when it all started and hovers between 10-20 and my doctor is convinced it’s pmr

PMRpro
PMRproAmbassador
in reply to Lynnray

Bursitis is part of PMR. Do these doctors ever read anything?

Just curious-are you doing high fat as well? (Boy! That sugar sure does a number that you can feel right away!)

Casia
Casia
in reply to ConventCassie

Thanks. I’ve cut refined sugar from my diet to help with the inflammation and have a pretty healthy diet .

PMRpro
PMRproAmbassador
in reply to ConventCassie

No, not consciously at least - I don't worry about fat at all but since I rarely eat bread there is no vehicle for butter! I use olive oil for almost all cooking with a bit of butter for some things. Meat here tends to be quite lean - the butcher removes it all before he weighs it!

Well, that’s handy for the meat. I just remembered my fav vegetable - artichoke with melted butter. Lobster too might be nice. Thanks for responding.

FRnina
FRnina
in reply to PMRpro

Thanks for this comprehensive reply. It is very good to understand that it is about managing the inflammation rather than curing the disease. With this in mind, we can have a meaningful exchange with doctors rather than the push to lower pred dose no matter what. Balance is key (and in that I include the low carb diet). Thanks for all your really helpful posts.

The prednisone suppresses your immune system to control your disease and symptoms. It is not a cure.

You may also like...