Hydroxychloroquine

[Seal49]

Has anyone used hydroxychloroquine in conjunction prednisone. I've heard it helps you to reduce faster What are the cons

[hurryupharry]

I had been taking pred for about 9 years. Lots of flares lots of issues. Ended up with bloods normal but still with aches & pains on a low pred dose. I was referred to a rheumatologist who diagnosed sjorgren. She prescribed hydroxychloroquine. I was able to reduce pred to 0 using the DL 5 week cycle.. six months later I am still taking hcq and now still have a few aches and pains but I think they are probably something to do with my age and the fun I had when I was younger! The downside about hcq is that it can cause macular degeneration and so it is necessary to have regular eye tests.

[Mrsd12f in reply to hurryupharry]

A very similar situation and timescale for me, but I have not been able to reduce below 3mg, so as far as the PMR is concerned, it doesn’t seem to have made any difference.

[hurryupharry in reply to Mrsd12f]

I think that it is really new that I feel like the shoulder and hip aches have reduced to the level that it is not a problem. It was probably after 4 or 5 months of no pred just hcq that I felt like getting up in the morning. I might be lucky, but I think it is worth to keep trying. I was reassured to find that the rheumatologist who recommended the hcq is very well respected by her peers, I guess that also gave me a bit of belief that it could work. I hope that it will work for you as well. Good luck.

[PMRpro Ambassador]

It MIGHT help you reduce the dose of pred - as is the case for any of the DMARDs that rheumies tout. Being able to reduce at all is more the point rather than whether it is faster.

There are a few people on the forum who have had success with it and now you have posted you will see several past discussions listed under Related Posts.

tangocharlie really struggled to get under 20mg pred and flared repeatedly but is now down to much less with HCQ. Someone else was also able to get off pred altogether - having a blank about their name though!!

Like all the claimed steroid sparers - it depends on the patient. There are clearly several underlying mechanisms for the symptoms we call PMR. All of them respond to pred but not as well to other alternatives. Even tocilizumab, the expensive biologic, only gets half of patients entirely off pred. The other half have other underlying causes of the inflammation besides IL-6 and need at least one other medication to manage that inflammation. But it isn't always the same drug.

[Heron82]

yes but it didn’t have any benefit whatsoever.

[tangocharlie]

Yes I have managed to reduce from a high dose of steroids down to 10 and attribute it to HCQ. Been on it a couple of years now. No drawbacks that I've noticed. It can affect your eyes so I have annual checkups. It also possibly reduces your appetite but that's been good for me to control hunger cravings. Worth a try I'd say, I wish someone would research it properly, no studies have been done. well only one very flawed one a long time ago

[Seal49 in reply to tangocharlie]

Thank you. I'll ask my Rheumatologist when I see her in June.

[tangocharlie in reply to Seal49]

Let us know how you get on. You may need to allow 3 months or so before you see a change

[MePugLover]

Newly diagnosed with Giant Cell Arteritis. Previously diag with Sjogrens 2 years ago. Been suffering with head pain that travels to behind my L eye to my jaw and feels like I need a root canal in every tooth. During an airplane flight Oct 2023, the pain was horrific and I got up to go the restroom and fainted on my way there. I had Radiofrequency Ablation (RFA) done a year ago to my 3rd occipital nerve which didn't help. Three weeks ago, my thyroid doctor asked me how I was doing and I told her how I'm still experiencing facial pain and she is the first doctor to mention GCA. Referred me to rheumatologist and opthalmologist and they both concur with her diagnosis. Due to having already had a fainting episode, my rheumatologist and I discussed doing a biopsy which would not be able to be scheduled for at least another 3 weeks and to be on the safe side of having a stroke, decided to forego the biopsy and go right into Prednisone 60mg for 1 wk, 50mg for 1 wk, and them 40mg the following week. At that point, I will see the doctor and see how to progress from here. My head/facial pain has come back on the second week. Ugh.....

[DorsetLady PMRGCAuk volunteer in reply to MePugLover]

Hi and welcome..

Prednisone 60mg for 1 wk, 50mg for 1 wk, and them 40mg the following week.

this is not standard practice for GCA -no wonder your symptoms have turned. You need at least 2-3 weeks on starting dose, sometimes longer.. and weekly reductions after that us positively bonkers not to mention dangerous.

You need to contact your doctors and report your return of symptoms. Have to say I’m surprised if ophthalmologist agree that taper, they are usually much more aware of the dangers of GCA.

[MePugLover in reply to DorsetLady]

I contacted doctor's office yesterday about the imsomnia and exhaustion and he said if responding well to the down dosage by next visit next week, we can speed up the taper to lessen the side effects. My concern is that the pain has already come back.

[DorsetLady PMRGCAuk volunteer in reply to MePugLover]

You may lessen side effects by speeding up taper- but you risk a lot more if your GCA isn’t under control- sight loss being the most significant. Insomnia and exhaustion pales into insignificance compared to that… and something your doctor doesn't seem to understand.

Sorry if that sounds harsh- but GCA is not to be messed with.

Suggest you have a look at these -

healthunlocked.com/pmrgcauk....

[PMRpro Ambassador in reply to MePugLover]

The side effects of pred are generally peanuts compared with the ultimate adverse effects of GCA - unmanaged inflammation can result in stroke or irreversible total loss of vision. And that really isn't being over-dramatic.

[Obscureclouds in reply to MePugLover]

Is your Doctor saying the exhaustion is down to Pred? As in my experience this is not necessarily the case. It was my main symptom prior to diagnosis ( I also experienced pain in my jaws affecting my ability to eat) I was put on 60mg of Pred for 2 weeks, 50 mg for around 3 weeks before reducing to 40mg. From starting Pred it took over 2 weeks for the extreme fatigue to go ( it then did so overnight) and for the jaw pain to ease off. I would put my insomnia down to Pred but it was also responsible for my hyper amount of energy I experienced when on 60 - 30 mgs. Unable to sleep on 40mg I could get up at 3am and still be just as lively at 10pm even if I had had a 5 mile walk in between. It seems some people get exhaustion because of Pred but for others, like me, it is very much a symptom of the illness. Yes, I do get tired now (10mg) but have an acceptable level of fitness and that awful fatigue only came back when I reduced Pred too quickly following my consultants two weekly tapering plan taking me from 30 to 20mg. It took an increase up to 25mg and slow tapering back down for the fatigue to ease off. I’m just raising this in case the exhaustion you are feeling is another indicator that your GCA isn’t yet under control with the dose you are currently on rather than it being a side effect of Pred. I know we are all different but from being part of this forum I’ve learnt the need to be patient as trying to taper as quickly as possible isn’t necessarily the best plan. It certainly didn’t prove to be in my best interests whereas introducing reducing by smaller amounts over a slightly longer period was. Despite what the doctor might prescribe this illness has a habit of dictating its own terms as to the pace you need to follow. I hope you can soon find what works best for you

[PMRpro Ambassador in reply to MePugLover]

Hi and welcome - sorry to hear all that. I agree with DL's comments.