hydroxychloroquine & side effects

salamander

Hi, my rheumy put me on this a couple of weeks ago saying it had very few side effects. Well, I've got two of them already! Tinnitus - keep getting it and found it in the list today and loss of appetite. Normally, I wouldn't say that is a problem, esp as am on steroids (!) but it says to see doc if it persists. I've lost about 4 lbs in two weeks. Am just not hungry, not even for my usual indulgent chocolate!

Anyone else had either of these? Tinnitus seems a very odd side effect to me.

Also seem to be coming down with a sore throat - again! I don't think I need to worry as when I was on Mtx but does anyone know? It's says you can be more prone to infections but I've only been on it a short while.

On the plus side my knee (for those who were so supportive before) is so much better today. For the first time in over a month I'm not aware of it throbbing away. Injection kicked in at last.

Wonkylegs

salamander wrote:

Hi, my rheumy put me on this a couple of weeks ago saying it had very few side effects. Well, I've got two of them already! Tinnitus - keep getting it and found it in the list today and loss of appetite. Normally, I wouldn't say that is a problem, esp as am on steroids (!) but it says to see doc if it persists. I've lost about 4 lbs in two weeks. Am just not hungry, not even for my usual indulgent chocolate!

Anyone else had either of these? Tinnitus seems a very odd side effect to me.

Also seem to be coming down with a sore throat - again! I don't think I need to worry as when I was on Mtx but does anyone know? It's says you can be more prone to infections but I've only been on it a short while.

On the plus side my knee (for those who were so supportive before) is so much better today. For the first time in over a month I'm not aware of it throbbing away. Injection kicked in at last.

HI Sal

sorry to hear that you are suffering again ...... but hopefully the side effects might lessen with time, which is what I've usually found with all the DMARDs that I've tried out so far.

I Did take hydroxy for a time, but that was so long ago and I had so many problems at that time, that I can't remember whether it affected my appetite ..... but Probably not knowing me!

As for Tinnitus, I do get this on occasions, especially when I am tired, or feeling particularly sickly with the MTX. I haven't ever mentioned it as it is fairly mild, and rarely is a huge problem to me.

I would suggest that you talk things over with your GP or rheumy nurse if you're worried or can't manage with it.

also I am sure that there is an association for people suffering with tinnitus, and they will surely have advice on how to lessen it's impact. (I seem to think that I've read that wearing/using earphones wasn't advised, but I am not sure of that :oops: )

hope you soon feel the benefit of the new drug.

hugs
WOnky

chris7

Hi Sally

Goodness :shock: I can't even spell that much less advise on the side effects so I hope others can give you some practical support soon.
Hope you do manage find some answers and a treatment that really helps. Glad the knees easing a little for you though and just leaving hugs and an order for that sore throat to leave you alone!! (((( ))))
take care
Chris

chris7

Hi Wonky

Didn't see you there when I posted but glad you could help. I knew someone would be able to advise. Hope you keeping okish there.
love
Chris

Wonkylegs

HI Chris - we cross posted

Sal - found a link to the British Tinnitus Association & they have a helpline

http://www.tinnitus.org.uk/index.php?q=About+the+BTA

hope that helps

WOnky

PS - their office is not far from where my dad lives maybe that's why I knew they existed

salamander

Thanks Wonky and Chris, I suppose they all have their problems. Thanks for the link to tinnitus site, will have a look at it. It's not too bad just takes me by surprise. If it gets worse I will mention it.

I should be grateful for the loss of appetite as I wouldn't mind getting back into my skinny jeans for winter! However, I love my food so mealtimes not such a pleasure. Glad to hear that side effects go after a while. I don't feel nearly as tired on it as the Mtx, which, unfortunately, I might be going back on in the new year.

Seems to be one thing after another, literally. A friend said to me today 'Oh! it's just like flu. You'll be alright after a bit.' I was a bit gob smacked as she doesn't seem to understand how hard things are. I suppose I should know by now that people don't understand. That's why I post on here.
xx

salamander

chris7 wrote:

Hi Wonky

Didn't see you there when I posted but glad you could help. I knew someone would be able to advise. Hope you keeping okish there.
love
Chris

And how are you Chris? Feeling ok?
And you too, Wonky!

chris7

Hi again Sally

You have had a bad time of things lately with one thing and another and I so hoped you could have a spell of feeling better by now so do hope things improve for you soon and that you don't feel too dragged down by it all. Am sure others will be along to send support tomorrow who do understand it is not like the 'flu' so do keep posting.
Thanks for asking, my energy levels have dropped today after day 2 at wonkas but only one more this week, am so tired I just spelt my name wrong on another thread! :oops: must get to me pit. Sorry about the loss of appetite there, and do hope the side effects are temporary for you. I will look in again.
take care
love
Chris

Wonkylegs

HI sally

I'm ok ish thanks (reducing the steroids and it's not much fun :roll: )

wish I could wave a wand but have to be patient I think ( not my strongest point :oops: )

hope you feel brighter tomorrow.

night night

WOnky

dreamdaisy

I have had tinnitus for about seven years now, thanks to sulphasalazine. I don't notice it so much during the day - plenty of other noises about then, but at night it can be distracting. I love my MP3 player! DD

joon51

Morning Sal, Hoping your sore throat is a lot better today. I am also on hydro as a add on to mtx this is my second week of taking hy, joints feeling alot better but I don't feel so good on the inside ( tummy pains headache) I don't normally suffer from those shall give it a couple of days to see if it settles down.

Am I right in that you are no longer taking mtx,

Hope your knee is still behaving itself

take care

June

frogmorton

Hi Sal

I forgot the loss of appetite Sal

I DID have that but it was far too breif

back to normal in about a month or so

Not had tinnitus as i have it already

Love

Toni xx

salamander

Thanks everyone. It seems it is a common experience! DD, I have a white noise machine which I use at night sometimes. Apparently, it is great for tinnitus. I've had it for years as I live in a flat in a city and it blocks out noise.

Interesting to hear that the appetite loss will wear off. Will have something in hand for Christmas at any rate Toni!

Wonky & Chris, we just have to hang on in there. Reducing steroids is awful and I never manage to get off them. I'm alternating between two doses at the moment. I think they make me more emotional which doesn't help this situation.
take care and thanks
xx

alarkra

Hi Salamander,

The tinnitus must be a horrible side-effect to have, you have my sympathy! I once had a weird side-effect when I took eyedrops for an eye ulcer - It dropped the pitch in one ear, so any kind of noise (people talking, music, the birds) sounded horrific as it was all clashing chords!! Thankfully it wore off after a couple of days. Having tinnitus must be awful though...

As for the appetite loss - I haven't had an appetite for about 3 months now which is due to my RA apparently (although I am on Hydrox). I've lost a stone in that time (although some would argue that it was a necessary stone to be lost, so I'm actually not complaining as I'm looking rather trim now ), however, do keep an eye on it as you don't want to loose too much weight and I also find myself that there are times that I would love to feel ravenous and hungry so I enjoy eating.

I hope you feel better soon. ((HUG)) xx

cthornley

Sorry I can't help with your side effects although the tinnitus sounds maddening
I was taken off the hydroxychloroquine for side effects (ha typical, I never get side effects and then I go on a drug known for not having many and get them :roll: ) I had nausea and an upset stomach which also put me off my food, I lost a lot of weight and took myself off it before my consultant also came to the same conclusion and officially took me off it.
You need to weigh up how much good it is doing with how lousy its making you feel - if the bad stuff outweighs the benefits you need to consider going back and trying something else

hope that it settles soon
Chrissie

salamander

thanks Alarka and Chrissie, of course the appetite loss might be the arthritis. That hadn't occurred to me as I'd been on Mtx until August. Great (but not in a good way!)

Chrissie, I always get the side effects! I've got a bit of a bad stomach too but will see if it settles. My rheumy and gp are both away and not worth bothering the other drs about.

tjt6768

salamander wrote:

thanks Alarka and Chrissie, of course the appetite loss might be the arthritis. That hadn't occurred to me as I'd been on Mtx until August. Great (but not in a good way!)

Chrissie, I always get the side effects! I've got a bit of a bad stomach too but will see if it settles. My rheumy and gp are both away and not worth bothering the other drs about.

Hi Salamander, I have been on the Hidroxy since March, I was absolutely fine until about 6 weeks ago, my appetite totally dissapeared, have lost 6-8lb since.. I have always had appetite problems when I have been in pain, you must know that feeling, you're starving, start to take a bite of your favourite meal, and bamm, 'cos of the pain, you can't eat...? That has been going on for a long time, this is different, I don't have an appetite, it's like I don't even like the thought of eating if that makes sense? I never thought to put it down to the Hyd... seeing as I had been on it so long before this started.. I never read the side-effects, just in case.. Last time I read them was a lot of yrs ago and one side-effect was 'sudden death may occur'!! :shock: So that kinda put me off reading them.
Have not really noticed anything else though, my eyes and hearing are fine.. I take Lanzoprazole for my stomach anyway and now Mobeverine too as I also have IBS.. So stomach wise things seem ok.
Am having to have some liver tests done though, something in my blood tests is higher than it should be, having an ultra sound on 4th next month, not sure if any of this is to do with the medication, but 12+yrs on Dihydrocodiene before a recent meds change probably did my liver no favours..

(well, that was a long one eh? )


Tony

alarkra

tjt6768 wrote:

salamander wrote:

Last time I read them was a lot of yrs ago and one side-effect was 'sudden death may occur'!! :shock: So that kinda put me off reading them.

Tony

Tony! While I was going some reading up about the anti-TNF's I saw that one of them had information on it which said 'There have been severe side effects known from this drug, including death'... at which point it made me exclaim to my sister - "Erm, I would say that DEATH is not really a side effect, it's kind of an irreversible consequence don't you think?!"

And so now I don't read any of the side effect information unless I start to feel poorly. It's just going to freak me out unnecessarily! :shock:

skezier

Hi Alarkra,

Right there with you... never read them for the same reasons Only I still had it and I didn't! x

Hi Sally,

I hoe it does sort its self out for you a Wonky said sometimes these things can get less the longer your on them. Fingers crossed and also did they come up with a different type of steroid for you?

Hang in there flower at some point its got to get easier. ((((( ))))) Cris xx

salamander

Thanks everyone.
Tony - that's interesting. I'm not the slightest bit interested in food. Usually am over fond of it! Noticed I'm not snacking these days. Thanks for the 'sudden death' side effect :shock: didn't know about that one! Not on my leaflet thank goodness. I'm on lansoperzole too and have mebeverine which haven't used for ages. Might dig some out. Can you take them with the hydroxy?

Hi Cris, thanks. No I'm still the same steroids but also on propanalol as am getting anxiety attacks and feeling nervous (also a side effect so I read.) My own doctor is back on Monday so shall give her a ring and have a chat. Blimey, the cure is nearly as bad as the illness!


How are you doing Cris? You ok?
take care
xx

tjt6768

salamander wrote:

Thanks everyone.
Tony - that's interesting. I'm not the slightest bit interested in food. Usually am over fond of it! Noticed I'm not snacking these days. Thanks for the 'sudden death' side effect :shock: didn't know about that one! Not on my leaflet thank goodness. I'm on lansoperzole too and have mebeverine which haven't used for ages. Might dig some out. Can you take them with the hydroxy?


Don't worry, the 'sudden death' was not on any of my current meds, lol.. Can't remember which it was though, had that many through the years.. :shock:
I have been prescribed both the Hyd. & Meb. at the same time and I was discussing everything I was on with my GP at my appointment this morning so I assume they're good together..
I was a **** for snacking, especially chocolate etc but even that doesn't hold too much interest these days.. I am surviving mainly on fruit, about the only thing I am ok with at the minute.. I did manage to eat some spicey chicken yesterday though, only a small bowl full..

Tony

frogmorton

Sal

That was me too - no interest in food, but it did pass and as Tony said the arthritis can do it too. I wouldnt take them without the lanzop as I blame them for my belly aches a while back too. Solved by the used of lanzop and eating at the same time as meds.

Hope it all settles for you soon.

Love

Toni xx

salamander

thanks tony/toni Helpful to know all this stuff. Of course they never tell you. Thank god for patient leaflets. Do you remember the days when they didn't give them out (showing my age here) but you took everything on trust? Will talk to gp next week about Meb. I hope I'm only these drugs for a couple of months - before I move onto something more toxic lol!

No more tinnitus yesterday. DD I don't know how you've coped with it for 7 years. Do you get used to it? My mum got it after a fall, or it could have been all the drugs she took of course, but she used to say it sounded like a Welsh choir! She listened to the radio at night. I've got a sound generation and last night slept to gently falling rain. Quite pleasant actually!

dreamdaisy

One can either let things beat you, or you can get on with it. I think many things come down to mind over matter: I don't mind and it doesn't matter. It is a comparatively little thing compared to the pain and difficulty involved in sitting, standing, walking, lying down, washing, dressing, cooking and cleaning. DD

julesj

I've only been taking hydroxychloroquine for about 3 weeks but it has just been making me feel so ill I've stopped taking it.
I also have had a lingering sore throat/viral infection the whole time - even antibiotics would not make it budge... but I couldnt see this on the list of side effects. Didnt get tinitus but kept getting blurry vision, not being able to focus my eyes, stomach upset and constantly thinking I was going to faint. Also got migraines... and the stuff didnt really help! Do you know if it's ok just to stop taking the stuff.. it's not like other drugs where you have to reduce the dose before coming off it completely. I suppose I've not been on it long enough so it shouldnt matter.

tjt6768

Wow, it's a long time since I saw this thread, lol..
I know when I was told by the Rheumy Doc to stop taking the hydroxy as it wasn't doing anything other than supressing the appeitite that they did just stop it, but I would advise maybe ringing the rheumy nurse first just in case?
I ended up losing almost two stone on this med, however I am sad to say that the weight has since piled back on :x :roll:

Best of luck Jules, let us know how you go on please