Hydroxychloroquine experiences please!

[mineofuselessinformation]

I've finally been diagnosed with either inflammatory or palindromic arthritis today (symptoms don't fully fit either, but I think palindromic is more likely having been told about it today - never heard of it before.)
Anyway, I've been prescribed the Hydroxychloroquine (and naproxen) and have a follow-up in three months.
Anyone else taken / taking it?
Thanks

[mineofuselessinformation]

Ummmm, anyone?

[FancyPuffin]

Me!

I was on it for about a year for Rheumatoid Arthritis (which incidentally presented as Palindromic initially) it was fine to start with and did help a bit, but, I went on Metholexeate as well after about 4 months and have had really bad nausea. I cut out the hydroxy as it seemed to make the nausea worse.

Definitely worth trying it as generally it's well tolerated and did help at the start.

[mineofuselessinformation]

Thanks for that Puffin.
It just feels great that someone believes me, and understands my weird symptoms, and also that I don't want to end up a gnarly old lady before my time. (I'm only 50 and have had joint symptoms for over 15 years.) and, also that I can take a medication that might stop the inflammatory process or at least slow it down - I'm slowly losing mobility in both large and small joints and getting more knobbly as I go.

[FancyPuffin]

It's awful isn't it. I remember that feeling well!

Because I didn't have the classic presentation with pain in symmetrical joints my Rheumatologist fannyed about and tried to diagnose me with Fibromyalgia It was only when my Rheumatiod Factor and CCP antibodies (the 2 main tests for RA 1 positive is enough so 2 is pretty damn conclusive) and my deformed swollen hands that he took me seriously and started medication. Unfortunately it was too late to prevent long term damage and I'm left with some pretty crappy hands not that they're essential or anything However, I haven't had more damage since starting the meds and my inflammation has gone down.

Honestly, the sooner you get cracking on the meds the better. I'm 18 months on from starting meds and the pain is so much better that I don't need the naproxen anymore. I almost feel like a normal person most days although my body lets me know if I've overdone it. I also used to encounter lots of arthritis suffers in my last job (healthcare) and most of them live a normal life.

I'm 33 so not prepared to give up just yet

[FancyPuffin]

Blimey that was long

There are some great Facebook groups about as well that are really supportive

[mineofuselessinformation]

You're damn right about the giving up, puffin.
I can't do it. I live alone and that means being able to do things for myself, plus, I'm not ready to be 'an old lady'!
Glad to hear you've had a good experience.

[mineofuselessinformation]

I should add, I'm negative for rheumatoid factor.
I'm very lucky in that I'm being referred to the 'hand team', whatever that is, to try and keep mobility as I'm losing mobility, grip and strength.

[redannie118]

Hi I was prescribed this for systemic sclerosis and like a previous poster was also on methotrexate and it made the side effects worse. I'm off it now but it does take up to 5 months to get into the system so gI've it time

[Tagetes]

I'm on both hydroxychloroquine and methotrexate for RA and have been for a number of years. Never any problems with either.

[newpup]

I have just been diagnosed with palindromic arthritis which looks likely to be rheumatoid :-( I have been offered steroids which I have refused as the side effects sound horrendous. I have been given info on hydroxichloriquine methotrexate and another drug and will be deciding with my consultant in two weeks which one is best for me. Anyone has any helpful advice I would be very grateful.
Diagnosis was such a shock! Went to GP for my terrible joint ache, saw consultant on referral and after an MRI scan of my hands was diagnosed with arthritis. I am in my early 40's. I also tested negative for rheumatoid factor!
(Sorry for thread hijack!)

[Squirrills]

I started on hydroxychloroquine a year ago. It seems the least nasty of the possible drugs.
I had had joint pain for years and GP diagnosed osteo arthritis. Eventually my RF was elevated and he referred me to Rheumatologist. He initially diagnosed palindromic rheumatism (later said RA) and started me just on the hydroxy.
It has been very successful. The fizzing joint pains have gone and the grinding fatigue.
I had a big flare in May which lasted about six weeks and I have one finger still swollen and sore but otherwise a major improvement.
I do have osteo arthritis as well which of course is not helped by RA drugs.

[ninjapants]

I take it and have ever had any issues with it. I also take Sulfasalszine and recently had a Rituximab infusion to treat rheumatoid arthritis. I took methotrexate after initial diagnosis but it made me constantly unwell.
Take it and see how you go

[mineofuselessinformation]

It's good to here that I'm not alone - at one point I was really beginning to doubt myself and thought I was making a fuss about nothing.
newpup, you haven't derailed at all, just added to the discussion!

[newpup]

Thanks Mine. So glad to find this thread, I feel really confused. I went to the GP with extreme fatigue and joint pain and in a couple of weeks have been diagnosed via a letter following an MRI scan. Just have no idea what to do. I have a GP appointment later today so hopefully I can discuss it with my GP. I have no idea how the consultant will react to me not taking the Steroids but the side effects sound awful!. However over the last few weeks the joint pain and fatigue have got worse.
I have no one to talk it over with.

Hope you are okay Mine. I was beginning to doubt myself too. So it was good to know I had not got it all in my head!

[FancyPuffin]

new I refused steroids as well, I couldn't face the side effects and weight gain. Just hold really firm when they suggest them.

It definitely meant that the road to feeling a bit better was a bit longer but I'm still pleased I didn't take them even if the doc and nurse thought I was bonkers

[newpup]

FancyPuffin that is good to know! I struggle with my weight anyway and the idea of gaining weight is terrifying, I also have close friends who have struggled with steroids and it was horrid.

It would be good to have better pain relief but I am coping and the side effects of steroids would actually be worse than coping with the pain!
I have no idea how the consultant will feel about this! He wrote to me with his diagnosis and a prescription for the steroids. I have a follow up appointment in a few weeks to see how I get on with them and to discuss the next step.
Somedays I feel okay just tired. Other days the pain is fairly bad and appears in random joints!
I know I tested negative for Rheumatoid Factor so thought that meant it was not arthritis. I assume you can still have it even if you test negative?
Hope you are feeling well now.

[newpup]

Saw my GP who was sympathetic about me not wanting to take steroids. She said that I may have inflammatory arthritis rather than rheumatoid there are many types apparently and my rheumatoid test was negative and I have no family history. Any body know what the difference is?
She prescribed Naproxen to last until I see the consultant in two weeks. But today I have been struck with the most awful Pain in my heel, I can hardly walk :-( Is this part of arthritis? I have cried it is so painful :-(

[Squirrills]

newpup Rheumatoid Arthritis is one kind of inflammatory arthritis.

I have needed very little pain relief since starting the Hydroxychloroquine. FWIW I have also lost weight, an unwanted side effect in my case. The only other side effect is slight gastric upset but I manage this by having one tablet morning and evening and eating buckets of lovely Greek Bio yoghurt.

[mineofuselessinformation]

newpup, what you describe is exactly why I (finally, after three years) went back. The sudden onset of pain made no sense to me - my two worst are a gout-type pain in my big toe joints dear lord above me, I've been known to cry getting my shoes on, or otherwise walking barefoot to the car park at the end of work because I didn't dare try, the other one that's been really bad is my left hip. While I was on holiday a few weeks back it was so bad I couldn't lift that leg up to climb stairs.
I'm really hoping the hydroxy sorts me out.

[Lonecatwithkitten]

I have been taking it on and off for the best part of 10 years now. First thing you response can be brand specific so it is worth ensuring that the Pharmacy don't switch your brand around, only Zentevia works for me.
I take 200mg hydroxycholoroquine and between 500 and 1000mg of Naproxen a day.
My diagnosis swings about a bit and my last check up the rheumatologist declared he no longer cared what name we were going to call it just how we treated.

[Bloopbleep]

Hi I take 400mg of hydroxychloriquine a day and have done for 18months for a connective tissue disorder. I get the occasional bout of nausea but nothing worse than my monthly hormonal nausea. I haven't had any other side effects that I'm aware of but I've also not had any major flares either. I honestly don't know if it's doing anything but as I don't know if it isn't, I'm not willing to go cold turkey in case everything returns.

[vintagechick43]

I was also prescribed it for inflammatory arthritis but couldn't take it for long as it really upset my stomach !!!! I now take sulfasalazine and have now been diagnosed with RA, it was showing up negative but on my last appointment at hospital they said I was now showing positive for it. My mum also has it so wasn't at all surprised. I can cope with the joint pain but it's the fatigue that really pee's me off especially when you I don't have an understanding dh.... I'm also about to start a new job where I will be on my feet 6 hrs a day, I'm dreading it.

[mineofuselessinformation]

I'm amazed to hear the histories that are similar to mine, but at the same time very down-hearted that many of us have had to wait (needlessly IMO) for some form of sensible diagnosis.
I've known for many years (I don't know exactly, but at least 15) that something wasn't right, but just couldn't get a GP to take me seriously until just under three years ago - and even then I was told I had osteoarthritis, practically patted in the head, and sent away.
By then, of course, the damage was already done to several of the joints in my hands.
Has anyone had any experience of getting sensible advice in limiting what they do - in terms of things like gardening, decorating, etc?
That's what I really struggle with. I live alone, so anything like that falls to me.
It's a case of do it, and suffer, or try to ignore what needs to be done... (Or pay someone else, which isn't always feasible.)
Please don't think I'm having a pity party here - I live a pretty good life, but am just stating how my life is.
Sorry for the rant!

[Bloopbleep]

mine have you seen an Occupational Therapist? They have some really good tips and can point you in the direction of good adaptations for everyday things

As for diagnosis - mine changes with every visit. I had joint pains from my teens but was constantly dismissed and referred to a psychiatrist at one point as my GP was convinced it was in my head. I had ridiculous fatigue for years, blood tests revealed nothing but persistent raised inflammation markers. Then I had an underactive thyroid but the fatigue didn't go away after it became stable. It wasn't until my late 30s and I had a rare form of scleritis that an ophthalmologist took bloods that shows an autoimmune problem. I ended up making a private appointment to see a rheumatologist as I'd been on the waiting list for NHS for 6months and he dx'd an undifferentiated connective tissue disorder, then a mixed ctd and then RA but without the blood test confirmation. They also flirted with vasculitus which terrifies me. The rheum says it doesn't matter what they call it, it's treated the same. The best drug I ever took was adilumimab (humira) at first with mtx then on its own. I've been symptom free for over a year since coming off it and wouldn't hesitate to take it again if needed.

[mineofuselessinformation]

Bloop, interestingly, dc1 has an auto-immune condition, and I'm convinced DM has RA, which has been passed off as osteo. (She has the same 'joints taking it in turns' symptoms as me.)
The fatigue thing has struck me throughout this thread - I've been totally knackered for the last 18 months, needing to nap when I've got home from work.
I have a new activity tracker which shows how badly I sleep at night (less than 50% deep sleep) which I suspect is down to pain.