Been off planequil for a while as very mild symptoms and concerned about the vision side affects. I’m also concerned about the length of time it takes to leave the system. Yesterday I Went to see rheumatoid consultant. Says I should go back on them or sulfazine as I have low disease activity. If i don’t go on treatment I probably will get discharged. I’m wondering as I’m mildly affected if I could find something not so toxic alternative dmard.
Interested to know if you are off meds because of eyes and what you are doing about it? What your thoughts are?
Thanks
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MrsWoman
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Plaquenil really is one of the mildest drugs for RA. Are you actually experiencing eye problems caused by it or just concerned about what you have read? I have been on it for almost 30 years now with no effects on my eyes. Retinopathy due to plaquenil is very rare, I’m sorry if you have this 😔 If you are mildly affected by RA then you do need something to stop joint deterioration. Your rheumy wouldn’t prescribe if they didn’t think you needed it. Good luck with whatever you decide 😊
Thanks Kitty. I had some issues with eyes before I started planequil. I was monitored for a year and then discharged. Recently I was given appointment to local eye hospital and they highlighted an issue on back of eye. I have never really taken much interest in RA other than it hurts or it doesn't and grateful to get treated. but after doing research I have sat up a bit and a bit more attentive to my health. I suppose brought on by a possiblity of losing my sight. Though I just have gone through some challenging times. It seems NICE have change their stance on planequil a couple of years ago. Its quite good reading the NICE guidelines to understand their approach.
With every RA-related we each need to consider what risks we are prepared to take and weigh up our own risks and benefits. I was on hydroxy for 10 years without problem.
As far as alternative drug therapy, hydroxy and sulpha are the starting pont so nothing milder. Even relying on anti-inflammatorys can have worse effects on heart and stomach.
You need to talk to your docs about the prognosis for you if you stop all drugs. They will have a much better idea about how it might evolve, as mild doesn’t mean non-erosive on non-aggressive. It just means it’s only displaying mild symptoms right now. So depending on how long you have been diagnosed, how old you are, whether you have other medical conditions that the RA could make worse, they should be able to give you a better feel for the risks you run being unmedicated.
Some people have had success with making a total lifestyle change in parallel with conventional medicine, and then being able to taper off drugs. But that is not reliably successful and requires hard work and lots of will power.
I am fortunate to be in my third year of full remission. After diagnosis of seronegative RA I was prescribed a course of prednisolone and put on 400 mg daily hydroxychloroquine (HCQ) aka Plaquenil. After six months my symptoms improved significantly but I stayed on the HCQ reducing first to 300mg then 200mg which I maintained for a year by which time I was in full remission. Following my annual checkup with rheumy on his advice I reduced further to 1 200mg tablet every 2 days i.e. 100mg per day. Six months ago I stopped taking any medication.
I am never complacent, stay active, eat healthy and still have annual checkups (though I might be discharged after next one)
I worried about the HCQ while I was taking it but glad I followed rheumy advice and stuck with it. I had regular opticians eye checks and one full eye health check at the local hospital which were all fine.
Will your joints not deteriorate without medication? I'm very new to this as I was only diagnosed in September 2019, 3 years remission is amazing congratulations
Congrats on being in remission. How long were you treated with planequil? Are you totally free. Do you experience any slight twinges, redness or soreness?
I remember being at that stage and some people are lucky enough to stay with low level disease activity. If you have high RA factor and high Anti-CCP levels these indicate, but don't predict, that your disease may become more severe.
Hydroxychloroquine is the mildest DMARD, followed by Sulphasalazine, then they get more hard core.
I managed through 10 years of using very healthy diet and exercise and at the same time dipping in and out of Hydroxy (of course, I didn't let my Rheumy know the extent of dipping in and out). My disease activity eventually meant that I needed more intervention.
In order to manage your disease you need to become very familiar with treatment options, and as many research articles/papers as you can find about diet, medication and lifestyle changes, and then make your own choices while being guided by the professionals. The alternative to this is to put yourself into the hands of the professionals and do as they suggest.
There is not yet an easy, person centred programme for RA. It is all still trial and error.
I have a high RF and zero positive but no anti ccp. What is ccp? I also developed another chronic health condition which I’m more focused on. I went down gradually and then stopped planequil. If planequil was working it was very subtle as It appears the same amount of activity off than on the drug. I wonder if my little flares are brought on by small infections or something other than rheumatoid disease. I’ve taken the drug for over 10 years and followed advice. Apparently planequil doesn’t leave the body that quickly and so side effects can continue after stop taking it. I’m exhausted dealing with it all.
Was taking MTXon just 5mg a month I was on 17 mg a week but started to experience increase in UTI and mouth ulcers have increased Tumeric to 3000 mg a day and the change has been amazing more mobility more energy better sleep and best still no UTI or mouth Ulcers cut out milk now on oat milk . My blood Tests indicate my inflammatory markers are still low . I made the adjustment a few months ago so pleased I did . Will discuss with my rheumatologist if I can stay on this low dose x
Hiya MrsWoman, welcome to the HU NRAS site. Well, as I’m sure you’re aware there's nothing you can do about how quickly HCQ leaves the body unlike leflunomide (which takes a lot longer) where you can be prescribed a washout. It was my first DMARD & whilst I had no eye issues, not the very rare ones you're probably concerned about anyway, I did have checks with the hospital Opthalmologist. You don’t say what specifically concerns you about vision side effects but if it is retinopathy it is very rare & usually noted (if diagnosed) after 5 years of use, more info here bjgp.org/content/68/668/120.2 It stopped working for me so I had to move on to another med. Methotrexate was chosen & I remain on it, 11 years later this year. As for your options, if you have valid concerns about your eyesight then restarting HCQ probably isn't the best one. On the other hand SSZ is still a DMARD of course but one of the better ones in terms of toxicity & if you have low disease activity. It's combination of an anti inflammatory & antibiotic & has been around a long while, around 80 years, so has treated plenty of people with RD, myself included. Have a read up on it & be sure you're informed enough when you do need to make the choice versusarthritis.org/about-a... Ask more questions of your Rheumy if necessary.
I hope you come to the right decision, the one you're most comfortable with.
Thanks nomoreheels yes it’s the retinopathy. NICE have changed their guidance due to the retinopathy being less rare. I have been on it over 10 years and on 400 where I should have been on 300 max. I will check out SSZ. I’m not sure the planequil was doing anything. I suspect the low signs are from infections or diet etc. Interested to now about a washout. And how easily prescribed.
True, actually as far back as 2014. But importantly higher toxicity rates are seen in patients with a high BMI & in patients older than 60 years (10.1 % v 0.5% for those aged <45). Also in longer duration of treatment, this we already knew, that the longer you're on it the greater the risk.
I'd be having frank words in your position, see what your Rheumy thinks may be your best option. I think I'd be wanting to change!
I did not know the % that’s quite a jump. 10%! he told me that people are on it 20 plus years. He booked me with the nurse to discuss options in 3 months. Meanwhile I will have another eye test. Hydroxychloriquine is such a doddle to be on no real monitoring compared to rest. I just want to keep away from surgeries and clinics. Anyway lucky to have breathing space and sort my head out. I’m still interested to see if there are alternatives...
On the other hand plaqnil is still a med. Yes it still controlling your RA, how long you do not know the I’ll ness is still there and the effects on your immune system until you need something something else.
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