DMARDS

[bakingD]

Anyone had any experience of Sulfasalazine or Hydroxychloroquinine??my Rheumy wants me to consider these as am unable to reduce below 5 mg Pred

[PMRpro Ambassador]

NOTHING, and I mean NOTHING, would persuade me to take another totally unproven medication in the context of PMR to get below a dose of 5mg which I had achieved on my own. It is a physiological dose, relatively innocuous, and from here on it depends on the return of adrenal function. Prof Dasgupta told us a month or so ago that he keeps patients on 2-3mg long term because it reduces the risk of relapses. The difference between 5 and 3mg pred is negligible.

[bakingD in reply to PMRpro]

Thank you so much for reassuring me

Am so reluctant to add in extra drugs

[SnazzyD]

Have you tried dropping by 0.5mg, adding it in slowly over a couple of months? Not sure why they think a DMARD is better side-effect wise than 5mg Pred if 5mg controls your symptoms. After all generally you don’t need a blood test every 1-3 months on 5mg Pred to check your white cell count, liver and kidneys. So I’d want a good reason, eg RA or stubborn PMR at a higher dose of Pred, first.

[bakingD in reply to SnazzyD]

Thanks who knows guess because am not totally controlled on 5 mg they want to add in extra drugs

[PMRpro Ambassador in reply to bakingD]

Were you ever fully controlled? Down to what dose?

[bakingD in reply to PMRpro]

Difficult question only totally pain free at beginning on 20 -15-10 then started symptoms at 5 and under but am pretty good now mild aching am gone by lunchtime

[PMRpro Ambassador in reply to bakingD]

No wonder you had problems - that is NOT how to taper for PMR. You were good at 10mg - and from there you should have reduced only 1mg at a time, never more than 10% of the current dose. You aren't reducing relentlessly to zero, you are looking for the lowest dose that works as well as the starting dose did and you might have been fine to 9mg or you might have been fine to 6mg. If you would be better at 6mg then 1mg more instead of adding other drugs, totally unproven in PMR, would be far better. As I say, it isn't the pred and PMR that is the problem, it is how they told you to reduce.

If it were me, I'd go up a bit and reduce much much more slowly as MrsNails suggests and you might even find that doing that you get lower. Without adding anything else.

[bakingD in reply to PMRpro]

Thanks yes I did go back up to 15 then tapered down slowly that was a while ago - paracetamol seems to help more than anything

[Dontwannabesick]

My OH was given them to treat RA. Within a couple if weeks he had terrible uncontrollable tremors. His whole body was shaking and he had to stop them.

[York54]

I’ve been taking hydroxychloroquine for a year now and have got down to 5 mg. Not tried to go any lower yet and not having seen the Rheumy since December, I haven’t tried. No adverse effects from it though. Had an eye test and have to have them monitored regularly, but I understand risk is only on long term use.

[podo]

The only reason I can see to swap Pred for a DMARD is if the PMR is actually now RA. This is then important to stop further joint erosion. My PMR, diagnosed 17 years ago is now, according to my Rheumie Seronegative RA. I have now been on HCQ for 2 years and seem to tolerate it well, although I am still taking 3mg of Pred.

[bakingD in reply to podo]

Thanks how was it decided you had RA and not OMR?

[podo in reply to bakingD]

Just an experienced Rheumie I guess, he had previously been seeing me for PMR but when I had a serious flare affecting just my hands & blood test showed no RA factor he took one look & said "PMR onset Seronegative RA". I presume that since these are all aoto-immune inflammatory diseases, it's where it ocurs that is important in the diagnosis.

[karenfizz in reply to podo]

I am in a similar position; was on 5mg pred then had a flare up of just my hands (not previously affected with the PMR) so rheumy decided it was sero negative arthritis & I started sufasalazine. Have been able to reduce the pred now to zero this week; no side effects from sufasalazine at all, no joint pain/stiffness now, so just wondering if I might be able to gradually get off the sulfasalazine too - depends if the diagnosis of sero neg RA is correct I guess.

[tangocharlie]

5 years ago I was in the same position. I tried sulfalazine and methotrexate, both were horrible. If I had my time again I'd have just stuck to 5 forever. Another alternative that might be worth trying though is depo-medrone seroid injections. I wrote a detailed post on them a while ago. But 5 is so low if you're stable and symptoms are controlled I'd just stay there if it were me

[bakingD in reply to tangocharlie]

Thanks very interesting re depo injections good luck with your tapering

[tangocharlie in reply to bakingD]

I am NEVER going to taper until I can be sure the PMR has actually gone and left the building becaue every time I do the PMR just flares up again

[PMRnewbie2017]

I would agree with the previous comments. Sulphasalazine and hydroxychloroquine have their places in other autoimmune diseases but in PMR?????. I had quick look on Dr Google and came across the following paper:

"The effect of slow acting antirheumatic drugs on the production of cytokines by human monocytes

"

V. A. Danis, D. A. Rathjen & P. M. Brooks

InflammoPharmacology volume 1, pages315–327(1992)

IMHO there is too much pressure to get PMR patients off Pred and Doctors will try almost anything to achieve this. There seems to be little appreciation of the fact that the drugs they would like us to take also have horrible side effects.

[PMRCanada]

My GP has set 5mg as my goal (currently at 9.5). If I ever get there I’d happily stay at that dose for awhile before attempting further reductions.

If it were me, I’d pass on the additional meds.

[Knitwit2020]

Hi bakingD...

Have used both of these drugs but not for PMR..was given to treat my psoriatic arthritis ..unfortunately neither worked well...the

sulfasalazine gave me horrible nausea but during its trial I was working.. putting in 12 hour days and commuting via train for 4 hours so pretty sure thats why that Dmard failed...no relief of pain.

When I trialed Hydroxy my psoriasis was pretty quiet on most of my body but my reaction to it was extreme...my patches doubled in size and irritation...so sorry to report neither DMARD worked well for me but again was using for a diffetent dx..One DMARD that did work well was Diclofenac...take care hope you find one that works for you...

[Odosmum in reply to Knitwit2020]

Ah diclofenac - wonder drug for me! Unfortunately, in the UK they are very reluctant to prescribe it. I took it for years and it really did the trick for my RA, until it didn't. It's an anti-inflammatory though, not a DMARD. Sulfasalazine was my first adventure into the dark side. Took that too for years until it stopped working too. That is the pattern for many of us with inflammatory arthritis conditions. I had few side-effects on it, but I was never able to take the optimal dose of 2gr per day. 1.5 was as much as I could manage. It was good while it lasted though!

[Tompark]

Yes, I started sulfasalazine 6 weeks ago. Within the last two weeks it really has been incredible. Pain almost gone for me although not completely yet. Headaches seem to be quite frequent although not every day. I had no other side effects. I have bloods monitored every two weeks. I hope this is helpful.

Tom

[bakingD in reply to Tompark]

Thanks very much good luck think I will stick with Pred for now!

[PMRpro Ambassador in reply to Tompark]

Yes - but you have sero-neg inflammatory arthritis. Not PMR. I'd expect it to help for you,

[bakingD in reply to PMRpro]

Not definite-Rod Hughes thinks I have PMR -2/3 rheumies say PMR -am ok on 4.5mg Pred

[PMRpro Ambassador in reply to bakingD]

No, not you, Tompark. Says very clearly on the profile.

[bakingD in reply to PMRpro]

Oh gosh sorry!!!

[PMRpro Ambassador in reply to bakingD]

No problem - no apology needed. It's the way this silly forum works!