remission

[Brychni]

Hi all

Has anyone here gone into remission after being on hydroxychloroquine?

[Leonwp]

Hi, well I have been on it 4 years after trying mtx, cymzia and etanercept to all of which I had severe adverse reactions and couldn't tolerate, my flare ups are now rare and mild, side effects whilst numerous are not severe.

The massive joint distortion I had been experiencing stopped, but of course the damage done can't be reversed.

Unfortunately my lungs have continued to be a problem and COPD has progressed.

So remission??... well I guess I have to answer yes and no, my disease is now different to what it was and is tolerable and yes I feel the benefits outweigh the negatives.

Hope my answer helps.

Blessings

Leon.

[sylvi]

Long may it continue darling. Pleased for you.xxxx

[Hidden]

Good news. There’s hope for us all

[Bon1]

It helped me a lot but not enough on its own. Mine got added in after MTX and steroids and totally removed my wrist synovitis which had stubbornly refused to budge, but it was just part of the picture, and I now take a biologic as well tontry and get off these wretched steroids. However Everyone is different.

Bon

X

[JFlay]

I'm on hydroxychloroquine only (previously was on MTX for 6 months) and apparently I'm in remission now.

I still get aches, pains, stiffness and fatigue though 🙄 but symptoms are much more manageable than they were before.

[Fruitandnutcase]

The copy of the letter from my rheumatologist to to my GP in September last year said I was in remission. I’m still taking the hydroxychloroquine though. I suspect if I’d seen the guy I saw for the three previous visits he may have suggested a drug holiday.

I we totally gluten free about five or six years ago after I was diagnosed with inflammatory arthritis so I think (don’t know for sure though - could be a coincidence) that has helped dampen down my immune system.

[oldtimer]

That's what they told me and I came off all medication for a while - but then I had a massive flare later....

[Brychni in reply to oldtimer]

Hi OldTimer

are you back on medication now?

[Troygirl]

Been on it for almost 4 months, can feel a huge difference. I think it is finally kicking in!

It's very odd that NONE of the high powered biologicals over two years did not work at all yet this seems to be working best!

Sometimes the simplest is the best!

[KittyJ in reply to Troygirl]

That’s good news Troygirl, you were having a tough time. Long may the improvement continue 🤞🏻

[JFlay in reply to Troygirl]

That's what my rheumy said let's keep things simple and try hydroxy 👍

[allanah]

Fabulous news , keep going xx

[charisma]

Not me, had it for over two years along with MTX then Leflunomide.

Are you in remission?

[Brychni in reply to charisma]

No - just at the beginning. I've been taking hydroxy for 5 weeks and was diagnosed about 7 weeks ago. I know it takes at least 3 - 6 months before it starts working but I have been surprised bu how quickly new symptoms are appearing. I wasn't that bad at the time of being diagnosed but now it's creeping in everywhere and I wonder how much worse it will get before the hydroxy starts doing something. The rheumatology nurse told me it is possible to go into remission after taking it for 2 years. I wonder how likely that is. I've been reading on the RAWarrior website that remission is extremely rare.

I'm also wondering that if it doesn't start working straight away and health deteriorates really quickly, what do you do in the meantime? Go back to GP?

[charisma in reply to Brychni]

Have you been referred to Rheumatology at any time? It is usually a Rheumatology specialist who diagnoses and prescribes a treatment plan. Not easy in the current pandemic though.

HXQ (hydroxychloroquine) is not often effective on its own for Inflammatory Arthritis eg RA.

RA warrior is a great site, it’s the one that helped me most before diagnosis in 2015. It is based in the USA where treatment might differ in various ways.

Here in the UK the preferred approach is early aggressive treatment with DMARD to try to subdue symptoms as quickly as possible.

For me, what started out as just my knee joint painful, quickly became all over severe flare of active disease that was excruciating and disabling within weeks.

With any luck, you will not have severe disease but do probably need to see a specialist to ensure you are receiving that aggressive treatment if you have had a proper diagnosis.

This usually involves blood tests for CRP, ESR and RF, and perhaps also for anti-CCP.

Diagnosis might then also involve x-rays of lungs and feet and referrals to physiotherapiy, podiatry and Occupational therapy.

But it sounds as if you need further help till pain and inflammation are controlled.

There’s no need to do without that just because of lockdown. I hope you can get relief and a way through this. 🙂

[Brychni in reply to charisma]

Hi charisma - yes I have been to rheumatology consultant 3 times and was called in for the third appointment after a scan on my hands and wrists which confirmed it. It sounds like my 'journey'; mine too was occasional although very bad pain in the odd joint and as we speak a rapid increase.

[charisma in reply to Brychni]

Your Rheumatology Dept are the ones to guide you, and change or add medication; since you have seen them, your care is their responsibility. GP should follow their advice too.

I hope you might be able to contact them and explain that symptoms are widespread and worsening since they will recognise it is urgent to nip that in the bud asap.

Hope you enjoy some of the weekend in spite of lockdown.

[Brychni in reply to charisma]

I'm due to go back to rheumatology 6 months from the last appointment, so about 5 months. Just around the time that hydroxy should have done its thing. I suppose I have to give it a chance.

[Troygirl in reply to Brychni]

Just went to the RA Warrier site. Great info! Thanks for the link! The more info the better!

[Quiltergirl]

I'm in the US and I've been on hydroxychloroquine for 2 years. It put me in "remission" about 4 months in, for a year. Then I had some other more serious health problems unrelated to arthritis and meds. I am also now on low dose steroids, as they help my spinal stenosis and arachnoiditis(nerve damage and pain). Right now though, due to our rather incompetent president and coronavirus , I am having a difficult time getting my RX filled, I've cut back to 1 x day until I see my rheumatologist next month. I am trying daily sublingual CBD oil.

I hope it works for you, it does take a long time to become effective. I was also on low dose steroids the first 5 months.

[Brychni in reply to Quiltergirl]

Hi Quiltergirl, yes there has been a shortage here too. Do you still have RA? Did the remission go into remission? 😄

[Staycalmandcarryon]

I have been in complete remission for three years and stopped hydroxychloroquine two years ago. Other health problems but the seronegative RA has crawled back under its stone, hopefully for good

[Staycalmandcarryon]

Sorry for the late reply. I only check this forum every six months or so, to remind myself what a terrible disease this is and that there is a possibility it may one day crawl out from under its stone.

I am now more than 3 years in complete drug-free remission from seronegative RA. Hydroxychloroquine was my wonder drug after an initial course of steroids. I was on it for around 18 months. Today I live a healthier life, eat gluten and lactose free and walk every day. I have other (vascular) health issues but no joint problems.