Coming off Hydroxychloroquine: I went to see my rheumy... - NRAS

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Coming off Hydroxychloroquine

Staycalmandcarryon
Staycalmandcarryon

I went to see my rheumy today. First appointment in a year. Feeling good with no pain or swelling. Have been in full remission for around 18 months now having being diagnosed with seronegative RA back in 2016. The only drug I take is hydroxychloroquine. Originally I was on 400mg daily, then 300mg and from Easter this year down to 200mg. Now reducing to 100mg (actually 200mg every other day as HCQ only comes in 200mg tabs). If all goes well then I plan to come off HCQ completely in 4-6 months time. Rheumy says there is a risk RA could return but I’m keen to give it a shot. Anyone out there come off HCQ?

16 Replies

That's fantastic news staycalmandcarryone, so very pleased for you!!!!!!!!!!!!!!!!!!!!

way to go, fantastic news!

and its positive news for me, as going to go on this myself

can I ask you a few questions please, did you have eye test at hosptail before starting it? or did you go to opt?, just its 6weeks wait for hosptail, so have opt looking at my eyes tomorrow

also what brand did you have? the Q one or the Z one, I live in wales so all meds come from Bristol :O(

also how did your hair do?

sorry all these questions but trying to get pos with this drug

also did you have any side effects at first how did you get through them?

all help advise will help me

did you have much swelling? I haven't had much swelling but its starting,

I am same seronegative, or I was unless its changing now the swelling has started.

have you always eaten what you wanted or been on a stricked diet?

congratulations again, your inspirational and you give us all hope!!!!!!!!!!!!!!!!!!!!!!!!!!

helixhelix
helixhelix in reply to VeronicaF

Veronica, the other thing to reflect on is that if you start treatment early like staycalm you have a better chance of having this sort of experience......

Helix is right, the longer you delay starting HCQ the more hard work it has to do. This could mean two things, you might not see results as quickly & it might not be enough to bring you under control, meaning another DMARD may have to be added. You have said your symptoms are worsening, certainly the inflammation, so does it not make sense to take the med that's been prescribed that could help ease them? Has your Rheumy not questioned why he's not seen any blood test results yet?

Hidden
Hidden

Great news, hope all goes well

What great news. Thanks for posting. A wonderful example of how it can be for the lucky few when caught early enough....I hope your remission stays for ever and the RA is firmly back in its box.

I should imagine that those who have had the same experience are no longer reading this forum actively...but I do know it happens for about 10-20% of people.

Great to hear this, I’m also on this medication starting at 200mg daily and trying to get up to 400mg I’ve had no problems with it so far except for a very stubborn UTI infection hopefully it’s got nothing to do with hydroxychloroquine because so far this is the only drug I’ve been able to take that hasn’t caused stomach issues and I can actually feel it helping with the swelling and pain is down too.

Thanks for sharing this encouraging news.

VeronicaF
VeronicaF in reply to Susan55

way to go Susan55

great news except for uti hope that gets better soon

All the best to you, great news!

Fantastic news and a boost for us all with RA ,that's the light I'm heading for and this damn disease ain't gonna stop me👍

I've been on it for couple of yrs no side affects just on 7.5 prednislone tapering so far so good apart from crippling bk pain from ostreo good luck

Yay! I came off hydroxychloroquine in June because of suspected eye problems but am still on mtx (only 12.5 mg as that’s the most I can tolerate with minimal side effects). Haven’t noticed any worsening of my RA (seropositive) symptoms so far 🤞. I would say I’m in remission and have been for 2 years plus.

Such good news! I do hope you can become med free, so pleased for you if you can. 😊

This is awesome news. I was diagnosed in 2013 with zero positive RA and started with HCQ and then added MTX. I came off MTX in 2015 after 2 years and then went med free in mid 2016. So far, so good and I hope it continues that way for myself and others who have managed to reach remission. Stay positive, be KIND to yourself .....this is your time to look after yourself.

That's fantastic news - always good to hear of someone going into remission!!

I am moving into chemical remission - keeping everything crossed that it's heading that way. And yep I can cross everything - tee hee - hooray!!

I was on 300mg HCQ a day then got moved up to 400mg now on 200mg. How comes I was on 300 you say - well the Rheumatologist had me cutting up the 200mg tablet. It's easy to do with a pill cutter as the pills are good size + have a handy indent down the middle.

all the best

Joy

Since taking rutuxin for 2 years, my dr. Said that it was no big deal if I forgot to take my plaquinell....I find no difference with or without it. So for now I'll finish my rx and go from there...hope Th I vs go well with you😸😸

Excellent news!

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