Dr wants me on Plaqnil

[Ronswife]

I really don't want to add a drug to taper after a relapse. I have PMR diagnosed 14 months ago and I am at. 7.5 mg prednisone. I think I can judge my body better with just Prednisone. Is there any good reason to be on plaqnil?

[Wyoming]

If you are on 7.5mg after only 14 months, I find that impressive. I am now on 4mg after 3 years, but along the way I have had a few blips, though nothing serious. My progress was nothing like yours but my rheumatologist never pushed me to introduce other drugs. There was a suggestion at one point that I might consider other drugs that "might" facilitate prednisone reduction (like methotrexate) and I told my doctor I would consider them but, to be honest, I was not interested in introducing something new. In addition, I felt my progress, though not speedy, was quite consistent. I now feel satisfied with my decision not to introduce another drug and I am quite symptom free and ready to move on to my next reduction. My doctor is also happy with my progress. If you do not want to take another drug, maybe you can just "consider" it for a period. In other words, just monitor your condition. You did not describe your relapse, but one or two relapses (or more) along the way are not unusual. With experience, you may be able to avoid relapses. There are many stories on this site about the consequences of reducing too quickly. But there are also times when the disease becomes more active, for no apparent reason, and requires more pacification. Just wanted to share my experience in hopes that it may be helpful to you in some way. I am so looking forward to the end of prednisone but I will continue to be cautious.

[Ronswife in reply to Wyoming]

Thank you for responding. I tend to think less in the mix is better andI feel I am doing well just to feel Good.

[SheffieldJane]

You are doing well in your taper. If it was me I wouldn't want to add it in unless I had a complex additional condition. I would follow your own instincts unless there was a compelling reason not too. Do you have RA or anything?

Are you stuck at 7.5.? I got a bit stuck there but seem to be over the hump towards 6 mgs now. I am 18 months diagnosed.

Not sure on your prescribing docs thinking. Are you?

[Ronswife in reply to SheffieldJane]

My original blood work showed Lupus but none of the symptoms so he is watchful plus I am 68 so a little old to have Lupus starting. I occasionally have swelling in my hands.

[PMRpro Ambassador]

Why? there is no evidence that plaquenil helps in PMR (see the Recommendations) and if you are at 7.5mg after merely 14 months that is plain silly. PMR lasts from 2 to 6 years for 75% of patients - and plaquenil won't change that.

At this point the greater problem is reducing pred to allow adrenal function to take up the slack - and plaquenil won't facilitate that.

All it will do is introduce another potential layer of side effects.

[Ronswife in reply to PMRpro]

I am so glad for your advice.

[PMRpro Ambassador in reply to Ronswife]

Reading your reply to SheffieldJane - is he perhaps become more convinced of the lupus diagnosis? Plaquenil is often used there.

[DorsetLady PMRGCAuk volunteer]

Hi,

You are at the level where you adrenals need to start working again, so why muddy the waters by adding in another drug which is not going to help that process. Just keep going, maybe a little slower than you have been.

[Ronswife in reply to DorsetLady]

Muddy the waters was my feelings about it too. I need to regulate how I feel. Thank you for responding.

[SusanEleven]

My rheum doc suggested it too. But not as a way for lowering prednisone or for my pmr. In fact she has already said I may be better off staying on slow dose of Prednisone. She thinks it may help with the pain of my arthritis.

[SusanEleven in reply to SusanEleven]

Low dose not slow dose. My silly texting fingers.

[Ronswife in reply to SusanEleven]

Words of wisdom are always appreciated.

[Ronswife in reply to SusanEleven]

I think he is new to PMR and trying to fix. Thank you for responding.

[SheffieldJane]

He needs to treat you as an equal and share all his thinking with you. It's your body after all. PMRPro's point about Lupus needs to be explored. Let us know how you get on!

[Ladybird25]

Dr Rod Hughes at St Peter’s Hospital in Chertsey, who is well respected by this forum, saw me for the first time last week and has just prescribed Plaquenil for me, on the assumption that there is a possibility of Lupus and/or seronegative RA going on. He’s not entirely convinced yet, as there are aspects of PMR, and he wants to repeat the blood tests to be sure. In the meantime the drugs are still waiting to be collected from the chemist as I’m dragging my feet...

I know what you feel like being asked to take yet another drug, but with your original blood work showing Lupus, I suppose that was his rationale. I’ve been told that I should respond to Plaquenil, and if so, should be able to reduce the Pred. It’ll take a while to be sure as it takes several months for it to take effect.

I also had PMR diagnosed 14 months ago, so I’m a bit fed up that it’s taken until now to come up with something different... My original rheumy left a lot to be desired. 😒

[Ronswife in reply to Ladybird25]

Interesting. I am trying to not believe it could be Lupus but I see what you mean. Thanks.

[Ladybird25 in reply to Ronswife]

Me too. I’ve had a little Google and am not too impressed with what I’ve read... He thought it was more likely to be Lupus because of my hand/wrist/ankle involvement. I’ve also got fluid in my knees. If the Plaquenil makes a difference, I suppose I’ve got to accept it.

I agree that unless there’s a great deal of evidence that you have Lupus (as you say, you have none of the symptoms), there’s no need to take it.

[PMRpro Ambassador in reply to Ladybird25]

RS3PE which has hand/wrist/ankle involvement can be a part of PMR:

clinexprheumatol.org/articl...

It also affects the knees:

"Remitting seronegative symmetrical synovitis with pitting edema (abbreviated RS3PE or sometimes RS3PE) is a rare syndrome identified by symmetric polyarthritis, synovitis, acute pitting edema (swelling) of the back of the hands and/or feet, and a negative serum rheumatoid factor.[1] If no underlying disorder can be identified (idiopathic RS3PE), this entity has an excellent prognosis and responds well to treatment.[2]

RS3PE typically involves the joints of the extremities, specifically the metacarpophalangeal and proximal interphalangeal joints, wrists, shoulders, elbows, knees and ankles.[3] It is more common in older adults, with the mean age between 70 and 80 years in most studies.[3][4] It occurs more often in men than in women with a 2:1 ratio.[3][5][6] It is unknown how common this condition is."

[Ladybird25 in reply to PMRpro]

Gosh, that sounds like me! I hadn’t really studied it in detail... Before diagnosis and steroids I had impressive pitting oedema of both feet, which occasionally recurs when I’m a bit more symptomatic. I think I’ll ask him about it at my next appointment, which I’ve had to reschedule as my mum is not so good at the moment. The palliative radiotherapy she had recently has exhausted her. I hope you and OH are coping with his radiotherapy. Thinking of you both.

Thanks for the info! 😊

[PMRpro Ambassador in reply to Ladybird25]

I had it - still happens a bit when I eat salty stuff. No salt makes a big difference.

All done r/t!!!! Finished on Monday and most things seem reasonably OK. Palliative r/t is hard though - you don't have the carrot of cure.

A week on Monday we head for the plane to Malta for 3 weeks in the relatively warm and nothing to do...

[Rugger in reply to PMRpro]

Have a good holiday and rest - you both deserve it!

[Ladybird25 in reply to PMRpro]

So pleased you both got through the radiotherapy and the cramped living conditions. I'm also really pleased you have Malta to look forward to. Great idea booking a holiday to have at the end of it all.

You say "nothing to do", but you'll be busy on the forums responding to all the queries and problems. I hope you find time for yourself and OH.

[PMRpixie]

Personally, I think it's better to simplify meds. Prednisone, although nasty stuff, does reduce the pain/inflamation to a tolerable level even giving some total relief. So I'd stick to only that because I think adding to it offers nothing significant but more chemicals😋

[Ronswife]

My thoughts too. Thanks.