Pmr

[Boater1302]

I’m on 3 mg prednisone for pmr barely working ,dr added hydoxychloroquine this week has anyone had luck with this drug and have you been able to reduce or eliminate prednisone. Thanks

[GOOD_GRIEF]

I have no opinion on whether it is effective, but go have your eyes checked ASAP. Hydoxychloroquine can have a very negative effect on eyesight if not monitored.

[Ronswife]

Study up on that drug. You are on a very low dose of prednisone and haven't given enough information here. You probably need a higher dose of prednisone not an additional drug to muddy the water. Are you in the USA? The doctors here really push that drug.

[123-go]

I'm sorry to hear you're suffering. As Ronswife said, we need to know more about your history of PMR.....your starting dose, your tapering programme, your current symptoms, etc. I know very little about hydroxychloroquine but others will be along with knowledge. We have learned that PMR is often not understood in the US as well as in the UK where Prednisolone is the main treatment for PMR. It seems that your doctor is wanting you off steroids but to do this after only two years is unusual here. All drugs carry warnings of side effects and of course you'll want to know more before adding another one to your treatment.There will be 'experts' along to advise so come back here to find out more.

[Boater1302 in reply to 123-go]

My history is as follows I have Hashimoto’s for 28 years two years ago almost overnight I started having pain in my joints and my large muscles I’ve also had issues with my stomach but the doctors really didn’t take it seriously. When I started feeling really bad I found a new specialist rheumatologist gastroenterologist and a new endocrinologist. When I was diagnosed with PMR they started me on 20 mg of prednisone at the same time I was diagnosed with celiac and borderline Crohn’s it seems that my body kind of rebuild at the same time. So at the start of 20 mg of prednisone I also went on an AIP diet to calm down my system which worked. I am on a gluten-free diet and I am as careful as I can be with the rest of my food. I started reducing the prednisone 1 mg per month I had a flare at about 13 mg then I was doing OK reducing down I got down to about seven and had to really slow it down so I would do 7676 for a month and that seem to work when I got down to five I started having some issues so I slowed it down again. My gastroenterologist then started me on Pentasa he thought that getting my bowel issues under control he felt that the PMR might do better and initially he was right I felt great and five I feel great on 4 mg I got down to three and now I’m struggling it’s not a full flare but I’m definitely not pain-free. My rheumatologist wants me to try hydroxychloroquine she said it could take six months and if I start feeling good to reduce the prednisone. In May it was just two years. I’m hesitant to start the hydroxychloroquine because of the factIt’s off label for PMR but I’ve also have had issues with infection with the prednisone and I think that’s why she’s pushing me to get off of it I just feel very frustrated I’m kind of getting hit at all anglesThank you everyone for answering my initial question sorry my history was late but I would appreciate any advice at all

[PMRpro Ambassador in reply to Boater1302]

Have you also put this on your profile? That is the best place - we can all access it then.

Did you really have joint pain? What you describe could be associated with the other problems f Crohns and coeliac - and them being under control would also improve the rest. But if it IS PMR - not saying it isn't - only 1 in 3 can get off pred in under 2 years. Half of patients have symptoms unless they are on pred for more than 6 years. PMR isn;t what a lot of doctors think it is.

[DorsetLady PMRGCAuk volunteer]

As others have said more info required.

Can see you’ve had PMR for a couple of years, but did the steroids work initially, and how has your journey been since diagnosis - presumably okay as you’ve only just asked a question.

Would suggest you’ve gone below dose you need to control symptoms....and despite what you may have been told, PMR can and in some cases does last a lot longer than 2 years.

The aim of reducing is to find the lowest dose of Pred that gives you same relief as initial dose did...not to relentlessly reduce to zero.

Most people do get off Pred - with or without adding in another drug - as the illness is self limiting - that is - it comes in its own time, it hangs around as long as it want, and then it goes when it’s ready.

If you were on the correct dose you probably wouldn’t need to add in HCQ.

[PMRpro Ambassador]

More info required really but ...

You will need some pred as long as the underlying autoimmune disorder that causes the symptoms is active. You are not reducing relentlessly to zero pred - you are looking for the lowest effective dose and it sounds as if you have overshot that. At what dose were you OK?

I really do NOT understand any doctor who adds in another drug, unproven in PMR, rather than letting a patient continue at a mg or two higher pred dose which, at this level, is better than adding in another layer of potential adverse effects.

You will get off pred eventually, when your body and your PMR is ready. Not before. Only 1 in 3 patients is totally off pred after 2 years, half have managed it by 6 years, the rest need a low dose of pred even longer. The only way to possibly get off pred sooner is Actemra/tocilizumab - but at 3mg that seems a bit excessive. And even it only works 100% for half of patients.

[anncooper]

It can take a long time for PMR to be cured