Discontinued hydroxy

[tallytutu]

I have recently seen my rheumy for a routine appt. He has stopped my hydroxy as a precaution as I’ve been on it for5 years. He has referred me to eye clinic. My white blood cells have been low for sometime, he wanted to increase my aza but reluctant to do this. My urine sample was++ he has sent it off for testing. I am obviously in a flare . I’m really am worried about the flare getting worse without the hydroxy , I know it takes a while to leave my body but I’m still a bit wobbly about it. I have had X-rays also as he noticed my gait . I have had more pain in my right hip , knee , shoulder etc . I tend to be a get on with it sort of person and carry on as best I can. Who wants to listen to some one whining on about their health. My family are really good but I don’t feel I can keep going on about the pain. I have another appt in 4 months. I really hope I can go back on the hydroxy as I feel a bit vulnerable without it. Does anyone know if hydroxy has to be permanently discontinued after5 years. Is this a new protocol?

[weathervane]

Hi , i had to come of hydroxy last November after nearly two years . My white cell count was very low and she thought this was the cause , rather than rituximab. I noticed no change after coming off it and my white cell count remained low which was problem as i was due disc surgery. I started taking multi vits with zinc and selenium and smoothies with kale spinach and fruit and my count went up . I dont knowif it was a coincidence but i have continued with them . I hope you will be ok as it’s worrying to come off a drug that you have been on for years , best wishes 🌸

[grannyjogger]

Oh dear, after writing a really long reply, it has just disappeared. Grrr!!!

I've been on hydroxy (200mg twice a day) for over 6 years. At my last appointment a couple of months ago rheumy said their protocol was now to try to reduce or stop long term use of hydroxy. She suggested either dropping to one a day or stopping altogether. I agreed to reducing as I thought it would be more difficult to get it prescribed again if I stopped. I have not actually taken it for two months now and I haven't really noticed much difference. My joints are slightly more painful but not enough to panic about.

On the positive side my gastro problems are improving (I have gastritis, large hiatus hernia, severe acid reflux, bile reflux since having my gallbladder removed, slow transit of food through the gut, fatty liver). I have often wondered if the hydroxy contributed to my GI problems (even though I was on Zentiva brand that is supposed to be better for the stomach).

Another positive is that, after agreeing to try the hydroxy reduction, I pressed my worries about the symptoms I think indicate Sjorgrens (as does my GP, who has expressed surprise that the symptoms have not been investigated further). In the past rheumy has just advised nose and mouth sprays and over counter lubricating eye drops but has now agreed to refer me to ENT/maxillofacial department for assessment.

I don't know if I will continue to be positive in the long term but I haven't had a flare for a few months so I'm feeling positive at the moment.

I hope things go well for you. Good luck x

[nancarolyn]

I have taken it for 30 years. No problems with it. Never heard this.From USA, if that makes a difference. God Bless you.

[tallytutu]

Thank you all, perhaps I’m panicking and won’t notice the difference. Fingers crossed. Best wishes .

[SamDBH]

I have had mine stopped. Was on it for ten years and had loads of side effects Which just have tests about now. It is a drug that can cause issues being on it long term. I have had to adjust my diet and lifestyle to cope with not being on it and increases my anti inflammatory intake. I have also have some steroid injections when systems picked up. Still not sure what they are going to do next as taken ages to get appointments about all the things hydroxy caused.

[Cubiche]

I have been on hidroxy for more than 5 years and recently had a bad flare up that show I have lupus nephritis and the doctors at the hospital took me off of it and when I went back to see my rheumy he said lupus patients should be on it. And that is the medicine with the less side effects and more benefits. You do however need to have your eyes tested every year because that is one side effect. I have never had any issues with it. So just check with the eye doctor and if everything is ok, keep taking it.

My doctor name is Edgard Janer check facebook or google it. We are in usa but you may be able to email or contact him.

[Tallytutu2003]

Thank you both for advice. I wish I had thought of asking when I was at my appt but I often don't think of these things until afterwards😩🙄

[Poshcards]

hi, I have been on hydroxy for about 20 odd years now x

[Bebe76]

There is no specific maximum amount of time one should be on hydroxy. However your doctor should have referred you for eye exams 5 years ago prior to starting hydroxy to get your baseline results , and you should have had them yearly. There shouldn't be a need to stop unless there's evidence of toxicity.

[loopy-lou]

I have been on it for 10 years. No side effects so far.

[Wendy39]

Hello

I’ve been on Hydroxychloroquine for nearly 5 years. At 400mg a day.

At my last NHS Rheumy appt last September she told me she’d been on a course recently and she wanted to reduce both my Hydroxychloroquine and my immune suppressant- MMF but she would leave it for now, as I am actually under Dermy led care.

She then discharged me to be looked after by GP alone.

When I went to see a lupus specialist privately I relayed this to him and he said that the Hydroxychloroquine would be the very last drug he would reduce, if ever.

It makes me wonder if all these rheumies have been on the same course telling them they must reduce Hydroxychloroquine???

I had my eyes tested as a base line before I started the drug and at first got them tested 6 monthly and now yearly.

As long as you get your eyes checked and report any eye/vision issues or show other contra indications, it seems that lupus experts think it’s OK to stay on. But obviously each patient must be assessed individually.

Maybe next time ask more in depth questions about their reasoning for this, especially if you do get worse after coming off it.

Hydroxychloroquine is supposed to be good for lupus aches and pains in particular and is anti inflammatory I believe.

Hope I’ve helped a little.

Wendy

[ColinSLE]

I have been taking hydroxychloroquine for about 20 years. The last time I saw my rheumy he said that new guidelines were for annual eye tests which I used to have but they were discontinued

[SjogiBear]

This is a very interesting thread as at my last appointment, my rheumatologist said that I should halve my hydroxy as I've been on it for five years now. I have halved it since about April time and as I haven't really noticed worsening symptoms, I have decided to stop it completely and haven't taken it for the past week. I know it has a long half life but I really couldn't see any advantage in continuing to take it if the doctors seem to be concerned about it and the risk of sight problems does seem to be greater than first thought. I have no idea if this is the right thing to do or not but it feels right for me at this point in time. I will be interested to see if I also have an improvement in my very annoying and uncomfortable gastro symptoms now.