Me

[jimcarlow75]

Hi I'm Jim Carlow, I'm 75 and on my second bout of PMR. The first lasted about 8 years, if this one's the same I'll be 81 when I'm free of it. Oh joy. I'll probably turn my toes up by then. Anyone else in my situation ? Have you decided to keep yourself pain free and to hell with cutting down the dose. Your thoughts please..

[Bcol]

Hi Jim, think you need some extra work on your maths!!!!! Glad to say I'm not in your position as only seven months into my first dose at the very young age of 71. Pain free in the initial stages certainly sounds sensible, but how did the rest go first time round.

[jimcarlow75 in reply to Bcol]

Hiya, I was about 54 or 55 when I first realised something was up. Thought it was artheritis for about a year, because my mother had that from quite an early age. Eventually I went to doc and he put me right with 30 mg pred. I could have kissed him, it changed my life. I stayed quite hi for a year or so and then gradually came down as you do, with some hiccups as normal . A year or 2 from the end I went on a maintainance dose of about 2mg then after a while I managed to get down to1mg and suddenly I was ok. I make that sound easy. But during this time coming down I had to go up to about 5 and then down again.This takes time of course. I only had about 18 mths till retirement then.

[jimcarlow75 in reply to jimcarlow75]

I believe that 30mg is not given these days. I have been up to 20, but that was my doing as I felt so rough.Doc didn't like it though, but as I said to him, at 75 I might not get rid of this before I turn my toes up. So lets have some pain free time.

Fishing mainly....

[diana1998 in reply to jimcarlow75]

Hospital started me on 30mgs and even then not pain free. Now on 4.5 and OK.

[Bcol in reply to jimcarlow75]

Hi Jim, I cant really add anything to the comments by PMRpro. QOL is the important thing, the rest becomes secondary, whatever our docs might like us to believe.

[Alchemy8 in reply to Bcol]

QOL?

[Bcol in reply to Alchemy8]

Quality of Life

[jimcarlow75 in reply to Alchemy8]

Quality of Life

[Alchemy8 in reply to Alchemy8]

Thank you Bcol! Essential!

[PMRpro Ambassador]

I'm rather younger than you so hope I have a long time to go yet - PMR arrived when I was 51, at 68 I still have it and I refuse to compromise on dose - my doctors here are also all proponents that QOL is all. A lower dose now would probably mean I don't WANT to live for years.

[tangocharlie]

Totally agree, QOL is important and I love your attitude. Just take each day as it comes and take the dose you need, PMR will go when it is ready and not before. I am often guilty of wishing things were different and trying to rush but it is pointless. Half the battle is with doctors who want you off steroids asap but studies have shown that they are not usually as bad for you as they are indoctrinated to believe, and may even have a protective effect as we get older (Matteson et al).

[borednow]

Hi PMR since (I think) 2017. Carefully managed thanks to this forum and reduced to 1.5mg a day by 2020 when PMR bit back. So back up to 5mg, slowly reducing to 2mg when I had a long talk to myself and decided that with everything going on in the world at the moment, I would stick with the 2mg indefinitely. All has been well since. GP still issuing repeat prescriptions. Onward and upwards and all that. Good luck.

[Maisiek in reply to borednow]

Yes the Prof considers keeping people at 2.5 mg now long term.

[jimcarlow75 in reply to borednow]

5 wouldn't do it for me at the moment. Back up to 18 ...Jim

[borednow in reply to jimcarlow75]

Hi Jim - If you're pain free at 18 then that's good. You've done the reducing thing before and nobody knows your body better than you. I hope all goes well - softly, softly and all that!! Sue

[jimcarlow75 in reply to borednow]

Thanks Sue, we all need a bit of encouragement once in a while. Jim.

[Hosers2]

Hi Jim. I’m 71, and had PMR for 8 months. I was down to 10mg, but having Macular Degeneration in one eye. Optometrist want me off Prednisone. So I am gradually switching to HCL (Hydroxychloroquine).

I had these same PMR symptoms five years ago. I attributed it to taking Simvistatin (for high cholesterol) for over three years. Once I suspected Simvistatin was the cause, I immediately quit taking it. Every symptom disappeared. Five years later, I woke to the PMR hitting me all at once.

[PMRpro Ambassador in reply to Hosers2]

But will hydroxychloroquine work? there is no evidence it does.

[Hosers2 in reply to PMRpro]

I have only been in the transition for three weeks. Reducing Prednisone by 1 mg every five days, increasing HCL at the same time. I have read several studies saying Hydroxychloroquine is successfully used to treat PMR. However, it also appears that you do not taper off HCL

[jimcarlow75 in reply to Hosers2]

Crikey thats quick 1 mg in 5.I've had eye trouble last few months swollen watery etc. Dont know if its related . Jim

[PMRpro Ambassador in reply to jimcarlow75]

Watery eyes is often due to dry eye syndrome: your eyes are unable to produce the correct thick tears to keep the surface of the eye healthy so they produce lots of thin tears instead. You can get drops or sprays to replace the good tears - speak to the pharmacist or your optician.

[jimcarlow75 in reply to Hosers2]

Never heard of the drugs you mention. Jim

[Hosers2 in reply to jimcarlow75]

Hydroxychloroquine is used by Lupus patients with very little side effects. I was surprised that it is also used for PMR. I’ll keep you informed about how successful it is for me. Right now, while reducing Prednisone every five days, I am certainly feeling some shoulder and hand stiffness every morning. I am almost 72, and have never had eye problems until December. Right eye started showing waves vertical lines and red colors look yellowish with my right eye. I am getting a shot in my eye every month now, hoping to reverse things. ($2,000.00 / shot).

[jimcarlow75 in reply to Hosers2]

Thats steep , makes me realise how lucky we are in UK.

[Hosers2 in reply to jimcarlow75]

My insurance forced them to cut it in half, and my co-pay ends up being $40.

[jimcarlow75 in reply to Hosers2]

I'm in Kent about 40 miles from London.

[Hosers2 in reply to jimcarlow75]

The memories. My wife and I have spent a lot of our Covid downtime watching TV series like The Crowne, Doc Martin, Brigerton, The Poldarks. Lots of beautiful Cornish scenery and British countryside.

[PMRpro Ambassador in reply to Hosers2]

" I was surprised that it is also used for PMR." - not half as surprised as I am, none of the rheumies I know use it and they are well up in the PMR/GCA world!

You say several studies? Do share the links. I have come across one and it was a bit dodgy. The 2015 Recommendations for managing PMR actually mention it by name: "Hydroxychloroquine was investigated by a single very low QoE retrospective study reporting no benefit regarding relapse rate: "Recommendation 7. ard.bmj.com/content/74/10/1799

I'm very concerned about the rate of reduction you have been told to do - after 8 months of pred at above 10mg/day your adrenal function is not likley to recover at that speed and that could lead to an adrenal crisis. 1mg every 2 weeks might be slow enough - but you really should go more slowly from 5mg.

[Hosers2 in reply to PMRpro]

I was investigating Hydroxychloroquine’s use against Covid-19 (Trump), when an article said it was used to treat PMR. I can’t find that article, but both my RA doc and my Ophthalmologist knew about using HCL for PMR. Here is one link I saved:

dovepress.com/polymyalgia-r...

I am into my fourth week in making the transition to HCL. Down to 3mg Prednisone. I’ll let you know if it works. I get my second shot in my eye for the Macular Degeneration on Friday. Ugg!

Sent from my iPad

[HeronNS in reply to Hosers2]

It's usually referred to as Plaquenil and is considered generally to be an ineffective DMARD in PMR although I suppose it must work for some or you'd think it would never be tried. I believe it is an important drug for treating lupus, however.

Incidentally, Dovepress is not a particularly reliable source.

[Hosers2 in reply to HeronNS]

Here’s hoping it works. I’m into my fourth week of transition and down to 3mg Prednisone. Big week ahead when I drop to 2mg Prednisone on Wednesday. I also get my second Pfizer shot Tuesday, and eye shot Friday.

[HeronNS in reply to Hosers2]

I suspect we find that various dmards work for some and not for others because PMR itself isn't really a well-defined disease, like, for example, something which can be confirmed definitively through blood tests, presence of pathogens, etc. There seem to be various types of PMR. So some people do really well with methotrexate, others not so much, and it's entirely possible that hydroxychloroquine works for just enough people that it still has legs when looking for ways to reduce prednisone dosage. Hope your adventure works well! 🍀

[Hosers2 in reply to HeronNS]

Thanks. I am now down to 2mg Prednisone and up to 400 HCQ. But I am getting some finger stiffness when I wake up. RA doc says it takes several months for the Hydroxychloroquine to work properly. We shall see. I may stick at 2mg’s prednisone for a while (until I am convinced the HCQ is actually working).

[HeronNS in reply to Hosers2]

Please keep us informed. Always good to learn about different experiences.

[jimcarlow75 in reply to Hosers2]

Yes, having had both eyes with cataracts operated on I can sympathise about the injections.All in the kind tho I think lol

[jimcarlow75 in reply to jimcarlow75]

Mind not kind....!

[Hosers2 in reply to jimcarlow75]

Yes. The injection isn’t a big deal, even though is sounds scary. A jab directly into the eye. Wow!

[PMRpro Ambassador in reply to Hosers2]

Yes, thought that was the reference you were talking about. Dovepress went through a period of accepting some very questionable work with poor peer reviewing - I think it has improved. However, use of hydroychloroquine is not at all mainstream and given the concern about using pred in PMR you would think they might consider its use a lot more or set up trials. If it is used, it is as a putative steroid-sparer, not as a replacement and any article claiming it is "used in PMR" is exaggerating so I'd question anything else they said.

My concern is that improperly managed PMR is more likely to progress to GCA - an even greater risk to your sight than pred. And hydroxychloroquine also carries risks to eye health. It isn't common but I do know a few who had to stop it as a result.

[Hosers2 in reply to PMRpro]

I agree with everything you wrote. I am giving it a try because the eye doctors recommended it (because they think the Prednisone caused the Macular Degeneration).

[PMRpro Ambassador in reply to Hosers2]

If they are that concerned - why not tocilizumab? Which DOES work.

[Hosers2 in reply to PMRpro]

Both my RA doc and Internal Medicine doc felt that there are too many detrimental side effects to tocilizumab. Obviously, they wouldn’t have put me on HCQ if they didn’t think it would work. The original recommendation to use HCQ actually came from the Macular Degeneration Group who specialize only in MacDeg, glaucoma, cataract, etc.

[Hosers2]

What part of the UK? I lived in Bournemouth, Plymouth, and Bristol in my younger years.

[jimcarlow75 in reply to Hosers2]

You were in the South West then , get there as often as I can.