Hydroxychloroquine

[JudithWarrior]

Hello,

Everyone was so helpful last time I posted about being stuck on 3 mg of pred for nearly 5 years and suffering flares when I go lower and the rheumy's desire for me to start methotrexate. With your support I told them I wouldn't continue with the methotrexate. It had a wretched effect on me and made me have the blackest moods where I just couldn't see anything with any perspective and cried every day. I feel back to normal again since stopping it. Thank you to everyone who replied with their advice and wisdom.

However, I've just had the results of my latest dexa scan and they show that I've now tipped into osteoporosis in my spine. Very disappointment at 62 yrs of age!

So having resisted the alendronic acid for so long I now have to relent but will be asking for the injections as I've seen the effects of it on my mum's digestive tract.

I have 2 new questions and wonder if anyone has any perspective on these:

1. Can I expect any side effects to the AA? and....

2. They are now suggesting I try a different drug called hydroxychlorquine which is milder than methotrexate apparently. Does anyone have any experience of this drug or advice on this?

Thanks all.

Judithwarrior.

[DorsetLady PMRGCAuk volunteer]

Some do get side effects from AA, personally I didn’t have any during my 4 years on it, but do follow the advise on taking it - I think that’s when any issues seem to arise. It does get a bad rap, not sure it’s totally justified.

There are other options to AA though - 6 monthly or annual infusions.

Have a look at the ROS website - theros.org.uk

and here’s a recent post about AA -

healthunlocked.com/pmrgcauk...

[SheffieldJane]

Go into it with an open mind after DorsetLady’s sound advice. I tend to overthink drugs these days and feel giddy as soon as I swallow a pill. The potential side effects are frightening but not everyone gets them, as DL illustrates. Make sure your dental treatment is up to date before starting as I don’t think dentists will undertake treatment when you are on it.

[Gimme in reply to SheffieldJane]

I asked my dentist about that. Actually, it was the person who did my implants and he said that he would treat me if I was on the tablets, but not the injections. I was surprised.

[PMRpro Ambassador]

Tell them you would like the annual infusion of bisphosphonate, zolendronic acid.

If you are happily on 3mg pred I would also refuse hydroxychloroquine. There is only one paper claiming it is good in PMR and it is of rather doubtful provenance. ALL medicatios have potential adverse effects and 3mg pred is preferable to adding another drug that adds to infection risk on top that has no real proven record in PMR.

This thread from the Mayo Clinic forum is hardly convincing either!

connect.mayoclinic.org/disc...

[powerwalk in reply to PMRpro]

Is zolendronic acid different than Prolia? I find these bone meds very confusing. I fear i may be in the realms after my next dexa.

[PMRpro Ambassador in reply to powerwalk]

Yes. Zolendronic acid is a bisphosphonate - just an i.v. version of the tablet alendronic acid.

Prolia is a monoclonal antibody, a biologic drug.

If you choose zolendronic acid you can stop it at some point if there is no reason to continue on the basis of bone density. If you choose Prolia then you are committing to take it indefinitely since in recent years it has been found that after stopping it there is a quite large rebound deterioration in bone density for some time and this can result in spinal fractures which is exactly what you were aiming to avoid. Either you continue taking it or you can switch to the oral or i.v. bisphosphonates to prevent that loss of bone density.

[powerwalk in reply to PMRpro]

Thanks. Minefield. Thanks for this.

[PMRpro Ambassador in reply to powerwalk]

Blimey - am I that dangerous???

[powerwalk in reply to PMRpro]

😁😁😁 never xx

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I’ll pass on that if I may — must admit had to do a double take.…🤦🏻‍♀️🤣😂

[PickyQ]

Hi,I had the infusion of zolandronic acid last autumn.

Yes get your teeth checked as it makes dentistry more difficult. In UK the infusion is given for 3 consecutive years.

The process happened as a day patient and was no more than a couple of hours. I was told you might get 'flu' like symptoms. I did -in exactly 24 hours after the infusion. Shivers, sickness,temperature fluctuations and complete weakness. It lasted 36 hours -I have felt no further effects. Sorry forgot to say --like you I've been stuck at 2.5mgs Pred for about 3 years. Hope this helpful.

[SLCR]

I initially was thought to have PMR, my diagnosis was determined to be RA and Sjorgrens. My symptoms were shoulder pain and stiffness along with my ribs and sternum and some lower back. I took Hydroxychloroquin for 1 year, it did nothing for my pain and stiffness. It cured my raynauds that is caused by sjorgrens but I had to stop it due to horrible skin issues and I can tell you nothing changed with my pain and stiffness after stopping it now for almost 2 months. Good luck.

[AshPen9]

I have been taking Hydroxychloroquine alongside Prednisolone for about 18 months. I don't have PMR ( was diagnosed with it originally but rediagnosed with Spondyloarthropathy), so I can't comment on what benefits Hydroxychloroquine might have for you, but you asked about side effects. I have had no noticeable side effects. My rheumy says that it 'calms the system'. Not sure that it's doing anything for me though, difficult to tell due to the Prednisolone. I will have to start tapering off the Hydroxychloroquine eventually, I think because it can harm your eyes long term. However, in terms of the Pred the rheumy says that I'll probably be on it long term, but as long as I'm under 5mg he's relaxed about it. Good luck with your negotiations!

[PMRpro Ambassador in reply to AshPen9]

I hope you are having at least annual eye checks? It doesn't have to be long term - it is used a lot in lupus and someone posted some months back warning because she had had problems very quickly.

[AshPen9 in reply to PMRpro]

Yes thanks PMRpro, I have annual checks , including a detailed photo of the back of my eyes (over and above the usual one). Also the main man at the opticians keeps an eye (no pun intended!) when he sees me twice a year for contact lens checks. They gave me an Amsler chart.

[PMRpro Ambassador in reply to AshPen9]

Good, that's fine then. But the rheumy sounds a bit laid back about hydroxy effects!

[PMRpro Ambassador in reply to AshPen9]

PS - it is a nasty effect

eyewiki.aao.org/Hydroxychlo....

Retinopathy is the feared effect - it is irreversible so it is important to screen constantly and avoid it developing.

[AshPen9 in reply to PMRpro]

Thanks very much for that PMRPro. A bit scary!

[PMRpro Ambassador in reply to AshPen9]

It is - so I get very twitchy when I hear of doctors claiming it only happens after long term use, it can happen sooner.

[orangemax]

Just a warning, my opthalmologist, upon hearing I had been diagnosed with PMR, told me that if they ever put me on hydroxychloroquine, that he would want to check my eyes twice a year. Sorry, I don't remember if he mentioned the possible issues the medication could cause.

[DorsetLady PMRGCAuk volunteer in reply to orangemax]

Listed side effect includes changes in vision -

rheumatology.org/patients/h...

[PMRpro Ambassador in reply to orangemax]

eyewiki.aao.org/Hydroxychlo....

Retinopathy is the feared effect - it is irreversible so it is important to screen constantly and avoid it developing.

[orangemax in reply to PMRpro]

Thank you to both DL and PMRpro. I've made copies of the sent docs on hydroxychloroquin and now I"ll have a reference.

[JudithWarrior]

Yes thank you everyone for all this helpful info and feedback. It's a minefield. I had a rheumy for 6 years plus who never told me anything, never suggested anything, never seemed to really care. Very pleasant man - always jolly and cracking jokes but he seemed unconcerned and disinterested in my PMR. I eventually requested a change of rheumy which I now have. I so wish I'd changed years ago. He literally never said anything helpful through all those years and made me feel that PMR was just nothing really and it made me feel silly for asking questions. I don't understand why it's not taken more seriously. I've learnt everything I've ever learnt from this website. Thank you all for all your interesting and helpful comments.