hydroxychloroquine - pros amd cons?

[LadyTrundle]

I had a meeting with a new Rheumatologist yesterday. After I moved area. He seems very knowledgable and works with Prof Denton from Royal Free to do a soecialist clinic locally each year. He raised idea of hydroxychloroquine - no one else has in my short journey. So I wondered about people’s experience of pros and cons? Thanks.

[ClaireSey]

Hi.... I have been on hydroxychloroquine for 4 years... 400mgs daily as recommended by Prof Denton. My symptoms have been stable in all this time and so lucky with no progression! Skin score, lung function, echo, all within normal range. My experience has been positive. Good luck on your journey x

[tanya1981 in reply to ClaireSey]

Can I ask why you were out on HCQ in the first place? Did your symptoms improve over time?

[momo17]

I started on a low dose with my initial diagnosis of MCTD. I didn’t feel any difference n it gave me sensitivity to the sun so stopped it. I tried it in addition to mycophenolate to help with pain of scleroderma a couple of years back but it did nothing for that n I could take any higher a dose because of my weight so I stopped it again. I had no side effects but just didn’t seem to work for me. A friend with lupus however raves about it. I’m sure if it’s been run past prof Denton it should be good for you. Good luck xx

[pinkcat26]

Hello, I have been taking hydroxychloroquine for around 6 years. I havent really seen any effects, but my rheumatologist (who is very up on scleroderma) told me to think of it like calgon that you put in the washing machine - you cant necessarily see it doing anything, but it works in the background keeping things going! He told me it is one of the safest drugs, with very little side effects, the main one being that it can affect your eyes - the maccula. However, my optician said that you would know straight away if it started to affect them, and its totally reversable, if you stop taking it your eyes return to normal. I just go to the optician every year. I am the sort of person who is very reluctant to take medication if its not useful, but the rheumatologist did a good job of convincing me to take this!

[LadyTrundle]

Thank you ClaireSey, Momo17 and pinkcat26. This is very heartening. The consultant did put it that I wouldn't notice any obvious benefits eg specific improvement to the Raynauds symptoms, but that it would work away in the background hopefully slowing the progress. Interesting about sensitivity to sun (my sanity and re-balancing activities are walking and gardening! Though I do tend to slather on the Factor 50) and also about the eyes. I had previously read dire reports about it making you go blind! The consultant did say, 'if you get a rash it'll be clear you can't support it, so you'll stop ...' I guess that's the same for eyes and other things.

[GGhere]

Hello Ladytrundle. I've been taking hydroxychloroquine for several years without trouble. I'm on a lower dose now as I've been given micophenolate as well. When it was first prescribed the consultant told me it is one of the "older" immune suppressant drugs but it has the least side effects. Oddly though, it is the drug that president Trump insisted would prevent Covid. Don't know where he got that idea from but it amused me at the time as he thought it was the cure all for Covid 19.

[LadyTrundle in reply to GGhere]

Yes - maybe it is exactly that association that made me react with suspicion initially!! Glad to hear it has been good for you.

[SylvieJ]

Hi, I am trying Hydroxychloroquin again with reluctance. I went private because I was getting nowhere with going to the GP and the none face to face appointments with Rheumatology. The Consultant I saw was fantastic, and he said that because my organs showed no signs of deterioration, out of the drugs there are to treat my problem which is Sjogren's and Raynaud's Hydroxychloroquin was the best option given that I don't like taking any drugs. I am taking one tablet every other day and the lowest dose. This is to see how I get on. So far so good although like Claire momo17 said there are days I don't feel any different. But it is early days. I hope you get on ok with it, as I know just how debilitating having an impaired immune system can be.

[LadyTrundle in reply to SylvieJ]

Yes, can be very debilitating. Like you it would seem my organs aren't massively affected (yet) so I think that was his argument, to stop or slow deterioration. My main symptoms are severe Raynauds and calcinosis (though thankfully no ulcers to date) plus upper and lower GI, again relatively mild so far. I've tended to be a good child and take what they tell me to, as they're the experts ... but it's now starting to feel like 'what, another one?"!

[sarahsch]

Hi LadyTrundle,

I have taken HCQ on and off for 7 years. It made a huge improvement in my quality of life, but unfortunately it aggregated my progressive muscle weakness & I've had to stop taking it. I have UCTD & there appears to be little alternative medication available to me.

I'm seeing a Neurologist next week & hopefully they can determine the cause of the muscle weakness & if we can resolve that, I might be able to restart HCQ.🤞

Sarah x

[Jana101 in reply to sarahsch]

I have been on it for 30 years and no ill effects

[LadyTrundle in reply to sarahsch]

Ok, that's interesting. At the moment my diagnosis hovers between Limited Systemic but with a mention of possibly Undifferentiated. Maybe that's why Royal Free didn't raise the possibility of HCQ (thanks for the abbreviation - much easier!) I'll raise that also with RF when I see them late January. Thanks.

[SBQ1971]

I have been on HCD for 14 years since being put onto it by Prof. Denton at RF. It supports my Methotrexate both of which are now low, maintenance dosages. I was diagnosed LSSc with overlap about 30 years ago. I have a first cousin with Sjogrens who is also on HCD and I think it is also used for Rheumatoid Arthritis, but it is important to get your eyes tested every year. Good luck

[LadyTrundle in reply to SBQ1971]

Thanks for the hints. I'm liking that people are saying they have lived years and years since diagnosis.

[GGhere in reply to LadyTrundle]

Hello again Lady Trundle - I'm still ticking along on the pills we talked about and I've just turned 81. Now on a mission to make it to 90.

[LadyTrundle in reply to GGhere]

Good for you - and keep us posted!

[Pink07]

I was diagnosed in July and put on hydroxychloroquine straight away...daily. I haven't had any unwanted side effects. I was worried about the possible eye involvement but my optician put my mind at rest with this. I'm told I have limited scleroderma. I'm quite new to all of this .

[LadyTrundle in reply to Pink07]

I feel pretty new to it also - so thanks for sharing. Good luck with it all. I'll make sure it is flagged to my optician. `i'm very shortsighted so go every year anyway!

[Pink07 in reply to LadyTrundle]

Good luck to you too. I'm short sighted too but now I'm getting older, getting long sighted too!

[LadyTrundle in reply to Pink07]

I hear you

😉

[Ncoff1]

I started taking it and it didn’t suit me at all so stopped, was going to be put back in it for the pain however at this time I’m just waiting. Good luck hope it helps

[LadyTrundle in reply to Ncoff1]

Sorry to hear that for you. I hope the pain eases. I also have chronic though fluctuating pain. So exhausting sometimes! Take care.

[hunkyd0ry]

Hi there. I have LSSc which mainly affects my fingers (Raynauds / digital ulcers). I do have problems with my joints occasionally which might be some RA that is related. I have been on HCD for that for about 2 years now.

I don't like the idea of taking meds for life and always like to keep my dose to a minimum, which is why I bought a pill cutter and take half a pill per day rather than a whole one as was prescribed. Seems to do the job and the doc approved of my decision (although the pills are disgustingly bitter and I obviously get a taste of that a bit easier now when I swallow half).

I even tried to stop for a while during the summer and give my kidneys a break.

But with the change of weather now my knees started playing up a lot and now I'm back on my half per day.

Just had a very thorough eye check recently to check for side effects to my eyes, but seems fine. The eye check I received was quite different though from you normal eye test at the opticians, as they focus a lot more on eye pressure, etc.

[LadyTrundle in reply to hunkyd0ry]

Thank you hunkyd)ry (love the upbeat name!) Again, really useful insights and ideas to question the consultants about - as well as the opticians. So very grateful for everyone's time in giving this advice!