Low dose hydroxychloroquine in remission : Still in... - NRAS

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Low dose hydroxychloroquine in remission

Staycalmandcarryon
Staycalmandcarryon
26 Replies

Still in remission, maintained for well over a year now :)

Have reduced the HCQ to 200mg on alternate days, no other meds for RA.

Feeling nervous about going entirely drug free. Rheumy says it’s up to me. Anyone else on low dose HCQ?

26 Replies
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VeronicaF

oh fantastic news, so happy for you, good for me too, as I am on the same drug, 7 weeks in

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Staycalmandcarryon

It took a while for the HCQ to work - (and it doesn’t work for everyone). Good luck!

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VeronicaF

ps can I ask how bad had you got with RA? had you tried any others before the H drug?

how long had you been on it for

thank you

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Staycalmandcarryon

Initially on prednisolone and Naproxen which helped but gave me other problems. Took around 12 weeks for HCQ to make a noticeable difference

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VeronicaF

I noticed you were sero negative like me

did you ever have to watch what you ate? do you now? sorry for all these questions

hope you don't mind? I am sorry I am jumping on you with all these questions ,when you have come on here with questions yourself

If I was you, I know how you must be feeling, of course your scared of it coming back, but I am so happy for you that your feeling pain free

its fantastic, your in remission ,its wonderful news for us all

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Staycalmandcarryon

I have become much more careful about what I eat. I try to stay away from cakes, biscuits excess alcohol etc. When first diagnosed the pain was mainly in my hands and wrists plus generally felt exhausted and depressed. Luckily got referred early to a great rheumy who put me on prednisolone and naproxen. Pred worked but pain returned when I finished the course. In the meantime rheumy put me on HCQ, I told him it wasn’t working and I needed something else. He told me to persist, after 12 weeks on HCQ saw improvements which got better and better. Eventually stopped all painkillers. Reduced from 400mg HCQ per day to 300mg after 1 year. Then to 200mg after a few more months. Now on 100mg per day.

Have regular eye checks, all normal.

Only symptom today is slight stiffness in hands when I wake up. Absolutely no pain. For now I’m able to live a normal life. Long may it continue.

I wish you every success in attaining remission, it is possible and seronegative status gives better odds.

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VeronicaF

I was hoping you said you can have cakes :O))) and chips and oh I could got on and on :O))))

but so happy for you

I have got it in more places, think its everywhere now

but I am going to go into remission like you

I know I am :O)))

Thank you

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nomoreheels

Great news! Long may it last. HCQ was my first DMARD too so it's good to hear for those on it that in some instances it can hold the disease. 🙂

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VeronicaF

also it shows that these drugs do and can work!!

so much negatives about these drugs not working, and it puts people off them , and then not being controlled and more harm being done

you show they can and do work

if I had understood and done what I was told instead of what I read, things would have worked a lot quicker and it wouldn't have spread so bad, when I first saw Rheumy , it was just in my feet and hands, he said we still have time but got to act quickly, I didn't understand what he meant by that, I do now sadly

so your thread high lights the importants of these drugs and listerning to Rheumy's advice

well done!!!!!!!!

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Simba1992
Simba1992
in reply to VeronicaF

It also shows that the more toxic meds are not always needed and an aggressive treatment may not always be the best option in the beginning. Hydroxy is the least toxic of the the RA meds. It also once again raises the question marks about seronegative. xSimba

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wishbone
wishbone
in reply to Simba1992

Some rheumatologists prefer to take an aggressive approach with tackling RD, which as you say may not always the best option in the beginning. There must be many cases where someone has been prescribed a strong med like methotrexate or leflunomide when something milder like hydroxychloroquine or sulfasalazine would have been sufficient.

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Simba1992
Simba1992
in reply to wishbone

This is my view. Mtx being a cytotoxic medication makes it in many ways different from the other meds. Since mtx in fact at its best slows down progression does not stop it, if other less toxic meds can do the same, even for a period of time, it is in my opinion a better option. The longer you can wait with the hard ammunition the better. An important finding in my view was in a review where it was said that those who had not previously been on mtx had a chance for drug free remission when put on biologics, whereas this was very rare in former mtx users. Simba

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AgedCrone
AgedCrone
in reply to Simba1992

If that is so about those who have previously not been on Mtx before Biologics, I wonder why the NICE Protocol says Mtx should be taken together with the Rituximab infusion?

In fact you have to get special dispensation to get the funding to get Retuximab without taking Methotrexate with it.

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VeronicaF
VeronicaF
in reply to Simba1992

I would have been given a cocktail at the start if I hadn't said no because I was scared of the meds, it was me who said no, he wanted to stop it in its track

,I only had it in jaw, feet and hands, now its everywhere

I didn't understand RA then and how quick it can get a hold and spread

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Simba1992
Simba1992
in reply to VeronicaF

Sorry to hear of your situation. Ra is very unpredictable and behaves differently in us. What ever treatment route we choose we are always taking risks. There is no way knowing how we react to meds eather. What is however seen that seronegatives do not react as well to meds as seropositives. So there are never any sure things. Hope hydroxy will help.

My RA has gone through all different phases described in this forum. Yes I had the jaw in the beginning, shoulders hips, hands wrists feet. But these just went on for a while and have settled down and not really come back. At present I'm on 5mg pred and 40mg Doxymycine with supplements and LDN and it's working well.

I know how hard you are trying to control your Ra less aggressively, it is however very hard to do this without support of a functional MD. That is always your best shot. I hope you will find help soon. All the best. xSimba

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Tia53

I started on Hydroxychloroqine Jan 2015 on 1 x 200mg tablet a day and I was great, no flares, pains or swelling. In Nov 2016 my RA Dr. advised me to stop taking the tablets to have a break for 8 months. I was fine until March 2017 when I became extremely stressed in my job (I have since left) which caused a massive flare - fingers, right foot, left side jaw locking and carpal tunnel syndrome in both hands/wrists. Back onto the hydroxychloroqine again! All well again - until Sept 2018 - (whilst on holiday) a flare up in left hand plus a problem in my neck/shoulder/arm. This has steadily got worse to the point I'm now on Methotrexate injections and hydroxychloroqine ( started 3 weeks ago) Still waiting for the MTX to kick in.

So hydroxychloroqine has worked for me for over 3 years but I now need something stronger 😊

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Simba1992
Simba1992
in reply to Tia53

May I ask you if you are seronegative or seropositive?Simba

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Tia53
Tia53
in reply to Simba1992

Hiya, yes I'm sero positive 😊

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VeronicaF
VeronicaF
in reply to Tia53

sorry to hear that Tia53,are you seronegative?

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Kjok
Kjok
in reply to VeronicaF

Want is sero positive /negative, I haven't heard the term before. I am on Hydroxy and have been on for 2 years. The results have been ok. I also have had to take prednisone, 5mg.

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Tia53
Tia53
in reply to VeronicaF

Hiya, yes I'm sero positive 😊

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Simba1992
Simba1992
in reply to Tia53

So you are positive for CCP antibodies not just RF?

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Tia53
Tia53
in reply to Simba1992

Hiya, yes positive CCP antibody and positive rheumatoid factor

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Tia53
Tia53
in reply to VeronicaF

Hiya, yes I'm sero positive and positive CCP antibody.

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VeronicaF
VeronicaF
in reply to Tia53

I just wondered if that's why it didn't work for you and why you needed something stronger? I don't know enough about anything really to comment, it might not work for me but here is hoping

I am confident it is ging to work and that I am going to go into remisson

I hope its the same for you on the M drug xx

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Jules13

Yup. I was reduced to 200 a day and made no difference. I am still on MTX though so not drug free.

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