PMR

Has anyone taken Plaqueinel (spelling ?) for PMR?

[polkadotcom]

No, I've only heard of it in relation to RA where it does in some cases help to prevent joint damage. Can't see why it would be used in PMR as that is muscle swelling not joints.

[tiasbear in reply to polkadotcom]

I read that they don't really know if the problem is in the muscles or the joints After 2 years plus with PMR mine really feels like it's right in the center of the joints. I was wondering if they did an MRI if they could see something in the joints, because the feeling is like that of an injury. Has anyone ever had an MRI or CT scan with PMR?

[Hidden in reply to tiasbear]

I did not have an MRI or CT scan. The Rheumatologist ran some tests to rule out other things.

[Hidden in reply to tiasbear]

tiasbear

A very useful post. MRI or PET scan of hands would be useful to clarify what PMR really means. I also think "if muscles are involved, then joints / tissues around them could also be involved".

[Hidden in reply to polkadotcom]

I also have degenerative joint disease and maybe he was trying to prevent more joint damage. That makes sense. I thought PMR was inflammation of the major blood veins in the trunk of the body that caused muscle pain.

[PMRpro Ambassador]

Plaquenil may be used in an attempt to reduce the amount of pred you take - in the same way as methotrexate or azathioprine. Generally it doesn't help much in "pure" PMR - and it certainly is unlikely to work on its own.

[Hidden]

It's used most widely in Lupus where it helps joint pain and fatigue. Interestingly a well know hospital that treats a lot of patients with Vasculitis are going to trial it as an add on for well controlled GPA. It can take up to 6 months to be effective.

[Anna135]

I don't have PMR, but I've been taking plaquenil in addition to prednisone for the last year, to treat GCA.

They started me on Prednisone almost 2 years ago, and then when I was having trouble tapering below 10mg, they added the plaquenil, which surprisingly did help. I say surprisingly because I haven't really heard of it being used for GCA from anyone else.

[Hidden in reply to Anna135]

I wondered if I could try the Plaquenil later if I have to take Prednisone for longer than a year. I was told that I needed to take one or the other to prevent the PMR from developing into GCA. Glad to hear that it is working for someone.

[rockyandzeus]

Hi,

As PMRpro said, plaquenil is sometimes prescribed in an attempt to reduce the amount of pred you take for pmr. It is a class of drugs called DMARs or disease modifying anti-rheumatic drugs. These drugs are supposed to alter the disease process and lower the amount of pred needed by the body to achieve an equivalent result without the DMAR.

I took plaquenil for about a year and did not see a reduction in my pred. Apparently they do work for people with rheumatic issues.

When it was apparent that the plaquenil was not making a difference, I was offered to take methotrexate.

All DMARs come with a list of potential side effects. So, if you take pred plus a DMAR,

you are piggy-backing your potential side-effects. Personally, I have side-effect-aphobia, and I could not reconcile the side effects I have learned to live with taking

pred with the not insignificant potential side effects with an off-label DMAR. Off label, meaning it has never been approved, nor was it developed specifically for use in treating PMR.

Now, having said all that, it is of course a personal choice one must make, with your

doctor, but, of course it should be an informed choice or decision that you make.

I wish you well on your pmr journey, if only they had given us an itinerary!

Regards,

Dorothy

[Hidden in reply to rockyandzeus]

If only they had given us an itinerary is so right! I was given the choice of either Pred or Plaquenil

& not a combination. Thank you for sharing your experience with Plaq. it does help me be content with my decision to take the Pred.

[Bailybiscuit]

I took it as hydroxychloroquine. it didn't do anything for the pmr but did effect my eyes so had to come off it.

[Hidden in reply to Bailybiscuit]

I was given the choice of Plaquenil or Prednisone. And I choose Pred because my bones are good but not my eyes. But since have wondered if I'd made the right choice given so many people on Pred have to take it for such a long time. I really would like to be done with this!! Thank you for your response.

[Bailybiscuit in reply to Hidden]

I have been taking pred for two years. What dose are you on now as I think you can take 5mg indefinetly without it affecting you. I can't seem to get below 14.5 even though i take methatrexate as well.

[Hidden in reply to Bailybiscuit]

I'm taking 7 mg now after what he called a blast of 10 mg for 2 weeks. The only problem I've had since is soreness in my shoulders in the early morning hours till today (7 weeks later) - one shoulder is extremely painful. I'm due a check up next week so I'll see what is going on.

[piglette in reply to Hidden]

I think you made the right choice choosing pred, it is currently really the only effective drug for PMR, although one day new ones may be in the pipeline. Plaquenil may help in the reduction for some, but I would not have thought it was a very good substitute, just something you can take with the pred which may or not help. Sadly PMR is a chronic illness and does not go away like a cold or flu. It hangs around your body for life, although it normally does go into remission, thank goodness, but that can be years rather than months.

[Hidden in reply to piglette]

I'm not very good at chronic!!!

[PMRpro Ambassador in reply to Hidden]

There is absolutely NO evidence that I have ever come across that plaquenil on its own will manage PMR so I'm mystified by it being offered as a monotherapy. All the medical reviews emphasise that corticosteroids are the mainstay of treatment.

Whatever you take you will need it until the cause of PMR goes into remission. There is no way of making that happen sooner - it comes when it wants and it goes when it wants. We'd all like to be done with this!

[Hidden]

My response would be, plaquenil won't help much. It is often prescribed for Lupus malar rash. I still have malar rash...