hydrodoxychloroquine??

[diana1998]

Is anyone using this? My rheumy has suggested it for me as l'm stuck on 3mg and stiff. I couldn't contemplate it as I have gut and stomach problems and I can see it can affect the eyes. No thanks. So I shall carry on regardless and keep up the physio and walk more now it's cooler. Things could be worse!

[Mrsd12f]

Hi! It certainly hasn’t helped me reduce, but I also have Sjögren’s and the rheumatologist says it helps with that. My optician says he’s never come across a case of retinopathy linked to it and I have very regular eye checks.

[PMRpro Ambassador]

There is litte reliable evidence for a role in PMR. Some patients do well on it - but if I was doing OK at 3mg pred on its own, I would be very unwilling to add an unproven drug to the mix. Especially at a point where adrenal function is as critical as the PMR symptoms.

[diana1998 in reply to PMRpro]

Yes, I agree. Don't know why they have to suggest add ons when on such a low dose.Thank you.

[PMRpro Ambassador in reply to diana1998]

Because they are so scared of pred ...

[diana1998 in reply to PMRpro]

Yes. But the add ons can cause awful side effects too and then we are faced with 2 lots. And on here we know that there's not much to worry about on low doses of pred. So I shan't fork out for a consultation!!

[PMRpro Ambassador in reply to diana1998]

Quite - so they hand out another script and add to the add-ons ...

[diana1998 in reply to PMRpro]

Bodmin!!

[Grammy80]

You've gotten top notch advice, I think. I'd kick it to the curb...and hope the 3mg works for you!!!💕

[Chris_1236]

This is not a suggestion for or against; only an observation:

HCQ is probably recommended due to it's apparent potential to regulate IL-6 production.

pubmed.ncbi.nlm.nih.gov/833...

Incidentally, Ivermectin has also shown some potential to regulate IL-6 production at least in LPS induced inflammation.

pubmed.ncbi.nlm.nih.gov/191...

Disclaimer: I'm not a doctor, and this does not constitue medical advice.

[PMRpro Ambassador in reply to Chris_1236]

Wonder if those were the basis for the song and dance over using them in Covid - where they don't work. However - there is more than one pathway to produce IL-6 and this

"Indeed, IL-6 production, the main cytokine increased in peripheral blood and tissues in PMR patients, is mainly produced by innate immune cells. Monocytes extracted from peripheral blood mononuclear cells of PMR patients and cultured with cellular stimulation have not been found to be responsible for IL-6"

suggests monocytes don't have a lot of role in PMR.

[Chris_1236 in reply to PMRpro]

"Wonder if those were the basis for the song and dance over using them in Covid - where they don't work."

cureus.com/articles/111851-...

[IslandShell]

Some years back my rheumatologist put me on it to help reduce prednisone.....did not help me with reduction. Still on pred. 3 mgs. which my new rheumatologist is good with.

[diana1998 in reply to IslandShell]

That's interesting.

[2013mayo]

Hi Diana, My rheumatologist put me on this drug, it was for rashes and ulcers on my tongue, it certainly helped in that department, however, my hair started to thin so I decided not to carry on with them. I must say I did feel better while I was taking them and considering taking them again.

[diana1998 in reply to 2013mayo]

Glad it helped you. I hate taking drugs so will give it a miss.

[Wallysma]

Hi diana...I have been on placquenil since the 90's for Sjogrens disease. I have never had any side effects but you have to see an eye doctor.every year. Eventually I had special tests...not fun but so important. It has really helped me a lot. I doubled my dose of it in 2015 when I developed RA ...and added 3 mg pred. It worked! Now PMR..oh well. I wanted to ask.if upping the dose might help with PMR but.no clue that ques. has to wait gor my next rheum. appt. I didn't tolerate methotrexate...got 2 infections in 1st week...and side effects. I would say you might not have any side effects...if it might work I would say try it you can always stop. It's hard to put the potential side effects in perspective....everything sounds terrible and full of danger. The eye thing if monitored is caught early...it's not an instantaneous thing. Anyway good luck with all of this. Be well.

[PMRpro Ambassador in reply to Wallysma]

In case you don't see the response above:

"Indeed, IL-6 production, the main cytokine increased in peripheral blood and tissues in PMR patients, is mainly produced by innate immune cells. Monocytes extracted from peripheral blood mononuclear cells of PMR patients and cultured with cellular stimulation have not been found to be responsible for IL-6"

sciencedirect.com/science/a....

[PMR2011]

I was on it for 2 years for PMR and never had any problems or side effects. I did not think it was helping tho. Rheumie agree to have me stop it. It was 2-3 months later I started having symptoms and was subsequently diagnosed with GCA. So thinking maybe it was helping after all?!?It takes several weeks to have effect. My understanding is the doses for PMR are lower than other conditions so side effects are much less often. I would suggest tho, if you are in pain on your current dose, it may not be enough. Good luck!

[cranberryt]

I was on it for 2 months in 2020 but had to stop due to rising liver numbers so had to come off it. It takes 3 months to kick in so it’s hard to tell if it was working. But I was able to get from 9mg to 7.5 while on it. I have several other eye conditions so it did make me nervous and I am glad to be off it. Down to 2mg now.

[Bravedave]

Hi dianna1998.Ive been on hydroxychloroquinine for almost a year to compliment prednisone with no side effects at all.

I was wondering why the rheumy prescribed it but religiously took it anyway.

I now believe it may boost the immune system whilst under prednisone duress.

I may be wrong but over the year I have been around many people with colds and flu...including covid, and I did get covid but mildly and threw it off quickly(thank goodness). I havent caught anyone's cold or flu and I was supposed to be immune compromised!

Touch wood!!!

That's my 2 cents worth...hope it helps

[diana1998 in reply to Bravedave]

How lucky to have no side effects. I've been blessed to having no colds or covid since starting pred over 6 years ago. I hate taking drugs but sometimes we're forced to.

[diana1998 in reply to diana1998]

What dose of pred are you on?

[Bravedave]

That is a very good virus track record. 6 years? That is a while.. I've been 2 years and feel hard done by, so I won't complain anymore.