Hydroxychloroquine

[Solasta]

Hi,

Has anyone gone on hydroxychloroquine?

My rheumatologist has suggested it today but is leaving it to me to decide if I want to go on it or not.

I'm leaning towards leaving it for now and revisit it if/when I next flare. He is running some more tests to see if he think I need to go on it immediately but if they are clear it will be left to me to decide.

On the one hand, I don't want to flare again. On the other, if I can get by without it (especially at the moment) then I'm thinking it's best left for now.

How have people felt on it? Any major issues?

Hi. I really struggled to start taking these, I think all the potential side effects put me off! However, I've now been taking 400mg daily for just over a year and the difference it's made to me is immense. For me it's been life changing, so I'd recommend giving it a go. Just make sure you slap on the factor 50 and always wear a hat!

I was in a very similar position to you - do I want HCQ or not? I wobbled between "I'll take it" and "I won't" for a long while, worried about side effects and also the monitoring of them. (Especially the eyesight issue and I have kidney problems, for which drugs are not usually good idea).

Eventually I decided to hold for for now and not take it, nor the aspirin that was recommended, nor anything for Reynaud's. It feels as though handing out drugs is a rheumatologist's first thought. Possibly justified, but who knows?

I'm still here and still ok. I manage flares with plenty of rest. I eat healthily and exercise daily. I've not said "no" to it for ever, just that at the moment, the balance of not having it versus daily ability is right for me.

Thank you both.

I'm leaning towards similar to you fuzzy but really good to hear your perspective justone

I'm going to wait and see his report before making a choice I think. It seems like such a big decision and I just don't feel equipped to make it.

I have been taking it for 4 years and it’s a wonder drug

I'm on hydroxychloroquine - have been for about 4yrs. I have been diagnosed with lupus/sjogrens & have RA as well as osteo arthritis. It certainly helps manage my lupus symptoms, especially the face rash which was like an itchy heat rash up my neck & lower face. I'm still sensitive to the sun & spend the summer wearing sunglasses!

It didn't work well enough for me - the worst thing about them was that they caused me to develop warts all around all of my fingertips/nails when I'd only ever had one aged 11, whilst only reducing pain a small amount - but the advantage of going on them is that when they were then stopped 3 months later was that this then enabled me to progress to other treatments, which has finally resulted in approval for a biologic that works wonders.

However, everybody else I knew who went on them has found them brilliant - one has been in remission ever since, including five years after stopping all medication.

The important thing is to treat proactively and as early as possible - it saves you sustaining permanent damage.

I have been on it for 16 years now, quite honestly would be able to g we t up in the morning without it. Response is often brand specific only Zentiva works for me any other brand my symptoms come back in particular the mouth ulcers.

I'm newly diagnosed with Sjogrens. Was offered hydrochloroquine today but declined as managing my symptoms with diet & supplements so far. I was very poorly last year but must be in some kind of remission. I said I'd revert back if I feel I need it on next review. Glad it really helps some of you.

Gave me upset tummy the first time I took it but it did help. Tried again more recently alongside sulfazaline and no side effects but no real benefits either as far as I could tell (although I was in the middle of very bad and extended flare)

@Duchess379

I'm on hydroxychloroquine - have been for about 4yrs. I have been diagnosed with lupus/sjogrens & have RA as well as osteo arthritis. It certainly helps manage my lupus symptoms, especially the face rash which was like an itchy heat rash up my neck & lower face. I'm still sensitive to the sun & spend the summer wearing sunglasses!

Oh dear Duchess379. Sorry to hear that you've got all those conditions. I've found a humidifier is great for the dry eyes which you probably get.

I've taken it for about 8 years. Marvellous stuff and by far the least nasty of the DMARDS.
I had some gastric issues in the first few weeks but experimentaed with timing of doses and they wore off completely. I had to stop it for 3 months for cancer treatment and my god the pain. I had grossly underestimated the severity of the disease and the effectiveness of HCQ.

I should add it takes 10 to 12 weeks to have any effect, equally the benefits last that long when you stop.