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Autoimmune disease


18 replies

imelda3 · 22/05/2018 16:43

Can anyone tell me about their experience with this please? Have had a look at the old threads. Have been prescribed this for seronegative RA but am reluctant to take it due to previously having horrible side effects and no improvement with Sulfasalazine and Methotrexate (although fair to say symptoms now worse). Has it worked for anyone where the other 2 havent? Thanks!

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loveyoutothemoon · 24/05/2018 17:52

I'm on this but not taken the other two. I've had no sides effects other than slight problem with my memory (which is one of the side effects), but I don't know if it's due to the hydroxy.

ButterfliesandMoths · 24/05/2018 22:29

I take methotrexate and hydroxychloroquine, originally I was on only the methotrexate, 17.5g weekly but they decided to add the hydroxychloroquine, 200mg twice a day and it's just enough to make a difference. A big difference, been taking it a good few months and no side effects yet. If I miss a dose I can really feel the difference in my fingers, stiffness starts.

Frax · 24/05/2018 22:34

I've been taking it for about two years. No major side effects.
Minor ones include excess wind, solved by splitting the dose into morning and night.
Slight weight loss, though could be coincidence.
It worked well at first but is less so now and I may have to start methotrexate.

shakeyourcaboose · 24/05/2018 22:42

Also been on methotrexate and hydroxychlroquine. (lupus) only issue for me was acid reflux or what felt like that! Dealt with by omeprazole

Plannergirl9 · 24/05/2018 22:42

I am 35 and took methotrexate for 22 years from the age of 12. At the time it was literally a life saver. Pretty shit side effects.

I also take Hrdroxychloroquine and have done since I was 12. No major side effects for me. You do have to get your eyes checked much more regularly as there is the potential for eye problems.

I would definitely give it a go. I take 400mg a day.

imelda3 · 26/05/2018 17:28

Sorry everyone - got waylaid and also accidentally disabled the notification that there had been a reply!

Thanks for all the replies. I made the “mistake” of reading the patients information lealflet and convinced myself that my eyes were going to change colour and all my hair would fall out - so good to hear your positive stories.

Have been sitting looking at the box for 2 weeks no - I think I’m actually in denial about the whole thing as my symptoms are mildish. Does anyone else have seronegative RA?

OP posts:
Frax · 26/05/2018 19:24

The problem with RA is that it won't get better only worse. The drugs stop further damage to your joints.
Hydroxychloroquine is one of the gentler RA drugs. It does take a while to work though, you might not see any change for several weeks.

ihearttc · 27/05/2018 08:44

I have Sero Negative RA and I only take Hydroxychloroquine. I was diagnosed nearly 3 years ago now. My symptoms weren't particularly severe but they wanted me on Methotrexate and Hydroxychloroquine immediately. After researching both I decided that giving Methotrexate (which I appreciate is the first line of attack for RA) is a bit like giving morphine for a headache so wanted to try just Hydroxychloroquine first.

They agreed but said I would have to go onto Methotrexate if my symptoms didn't improve. I took 2 tablets a day for over 2 years and can honestly say I have had no side effects at all...and I usually get side effects with most medication. I have my eyes checked every year and my optician has said its very very rare to have toxicity issues with the modern day dosage. Since October last year I have reduced my dosage to only 1 tablet a day as everything was under control and it's continued on the reduced dosage (my Rheumatologist told me to do this btw)

I also have Pernicious Anaemia which is also closely linked to RA and the only time I really feel rough is when my B12 injection is due.

Feel free to ask any questions.

imelda3 · 28/05/2018 16:36

Thanks ihearttc for all that information.

Was spurred on by everyone and have now taken 2 doses! (I’m such a wuss!).

I think the problem with SRA is the woollyness of the diagnosis - I have spent quite a few years thinking that it must be wrong but it’s only now when things have got worse that I think maybe it is right. I definitely can’t rely on Naproxen to completely kill the pain anymore. So I will see how I get on. Good luck to everyone else X

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LilacIris · 28/05/2018 16:45

I’ve taken it for a decade (400mg) with no problems at all. I hope it works for you; I definitely notice a difference with it.

Freetodowhatiwant · 28/05/2018 16:49

I took it for about a year in total for entirely different reasons so I can’t comment on whether it will help your symptoms but I will say I found it a most pleasant drug with no nasty side effects. I have autoimmune thyroid disease but this was taken to help prevent immune issues that were causing miscarriages.

honeysucklejasmine · 28/05/2018 16:50

I have taken it since 2006, no problems at all.

Although I do get frustrated because I find some formulations more effective don't try to tell me they are all the same, they aren't IMO BlackRock Pharmaceuticals make the best type, and Quinoric is worst. Plaquenil was the gold standard but it's not made any more.

honeysucklejasmine · 28/05/2018 16:51

I mean, it's frustrating trying to find a pharmacy that carries my preferred brand. I can only get it from one location in the whole city now.

Frax · 28/05/2018 17:42

honeysucklejasmine what are the differences that you notice with different brands? I just get what the GP in house pharmacy gives me and currently on quinoric.

ihearttc · 29/05/2018 16:49

I take Zentiva brand which is what the hospital pharmacy gave me.

SpeckyB · 30/05/2018 20:32

I was diagnosed with seronegative RA due to symptoms and family history. I was on sulphasalazine (horrible drug). After 10 years and gaining other autoimmune conditions, I was referred to another rheumatologist, who established that I actually have Mixed Connective Tissue Disease, not SRA. I now take hydroxychloroquine and Azathioprine, and it’s been life changing. No more dodgy side effects, no more ill managed symptoms. I finally feel I have the right diagnosis.

honeysucklejasmine · 30/05/2018 20:36

Frax I find BlackRock more effective. Quinoric, IMO, tastes foul even if you swallow very quickly, and I find it not as effective in managing my flares.

imelda3 · 01/06/2018 14:10

Thanks everyone - I feel very encouraged by your stories. Day 6 and all ok - hope you are too.

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