Another drug to add to the cocktail

lindalegs

Hi to all my readers,

Saw my Rheumy on Friday and after my forthcoming op he'd like to me start taking Hydroxychloroquine. Apparently my inflammation levels in my blood aren't as low as he'd like and he feels that if I take this as well as Mtx then it could help get on top of things again. He also said that even though I'm only on 10mg Mtx we could reduce the dose if the Hydroxy works.

On reading the leaflet he gave me I see that the side effects are similar to those of Mtx which isn't a thrilling prospect really. :roll:

Do any of you taking Hydroxy suffer from the usual nausea and headaches and if 'yes' do they settle down in time as with Mtx?

Have you noticed a difference with taking Hydroxy, has it helped you?

The cocktail of drugs is becoming more varied with time ……….perhaps I need to take them in a glass with a cherry on a stick to make it even more interesting!

tkachev

I took it with sulfasalazine for several years and never noticed any improvement so recently I asked to stop taking them and they agreed. There is the issue of dry eyes so you need to get a pre hydroxy eye test and then a test a year later to see if there are any 'issues'.
I am not aware of suffering any side effects from this drug. When MTX joined in I had the usual nausea.I carried on taking them for at least 3 more years together with MTX and sulfasalazine but blamed all my horrible nausea on the MTX.

Good luck
Elizabeth

lindalegs

Hi Elizabeth,

Thanks for your speedy reply Are you saying you got dry eye or I might get dry eye?

It's a relief to see you didn't get any side effects though not good it didn't work for you.

I have to dash now as I'm going to my French class.

Talk later.

traluvie

Hi Linda..

I am fairly new to Hydroxy..
Have been taking it for a month 400mg and today was reduced to 200mg
I found the first 2 weeks quite bad, i was feeling very sick and couldn't really eat, just generaaly felt unwell..
They have now gotten in to my system and i feel ok..
Can't say i've noticed the benefits yet, but they say it can take 8-12 weeks to notice any difference if any..
I know for some it has worked and for others it has not..
Hope it helps you..
xxxxxxxxxxxxxxx

tkachev

It is a small possibility. I was fine though. I didn't improve one jot on Hydroxychloroquinine but I'm sure others have,

Au revoir Linda
Elizabeth

suzygirl

I take plaquenil (hydroxy), it helped with the fatigue, but not with my joints. I took mine in the evening after dinner to help minimise the side effects. No real problems with it. I haven't had pleurisy again since taking it, thankfully!! It is supposed to help prevent that.

You do need to have an eye check before starting and every year after. There is a very small risk of eye damage. To my knowledge it doesn't cause dry eyes. I had mine before starting plaquenil. It does take between 3 -12 weeks to achieve maximum effect.

Hope it helps you.

wibberley

Good luck with the Hydroxy, Linda. I've no first hand experience but my cousin takes it for her RA and likes it.

Lois x

skinnylizzie

Hi Linda

I've also been on hydroxychloroquine for nearly 3 years now, and can honestly say I have had no side effects what so ever. In fact, I have found that it has given me a wee bit more energy being on it, not quite sure if it has helped too much with joint pain but it has helped with energy. I'm still taking 400mg a day, and have found that when I'm not in a flare, it just takes the edge off, exhaustion wise!
As the other folk have said, it can take up to 3 months to kick in, but I found it started to help in about 6.
Hope it works for you too, especially the combination with MTX.
Let us know how you get on!

take care

tillytop

Hi Lindalegs

I think your idea of a "Proper cocktail glass" is a good one! I know how you feel, as I think do many if not most of the forum peeps!

I took Hydroxy for a while with no problems at all, either with the drug or with my eyes. As to whether it worked, hard to say because I was taking it alongside other meds - Gold and Cyclosporine if I remember rightly.

Really good luck with it and I hope it helps - and that you will be able to reduce the mtx in time.

Tillyxxx

frogmorton

Hi Linda

I take it.

It's ok, I had sort of dicky tummy at first countered by taking it halfway through meals.

I dont know what the eye problems are, but had an eye test before starting and regularly since - my optivian gave me the amsler grid whcih i think is relevant and checks for macular degeneration, but l been fine

You'll be fine Linda I'm sure

Love

toni xx

stickywicket

Hi there, Legs

Are you my long lost twin? Were we separated at birth? Yes, I've taken Hydroxychloroquine for years with no ill effects at all. I was put on it at the same time as methotrexate so don't know if it works for me but one/both of them sure does.

I think dry eyes are a possible symptom of RA not hydroxychloroquine but you will get eye tests for colour blindness. I've always passed mine with distnction.

Did Collywobble mention Tequila Sunrises? Yes please. Very generous.

need me bed

Ello legs et al

I take the Hydroxychloroquine, Sulfasalazine, AND Methotrexate among others (approx 17 tablets a day more on a meth day).... have had no probs with the 1st 2 at all.... But the Meth has been horrendous... getting lots of side effects with that... i've started to rattle when i walk..

lindalegs

traluvie wrote:

Hi Linda..

I am fairly new to Hydroxy.................................................
I know for some it has worked and for others it has not..
Hope it helps you..
xxxxxxxxxxxxxxx

Interesting Tracy - are you on any other Dmard like Mtx or Sulpha?

lindalegs

tkachev wrote:

It is a small possibility. I was fine though. I didn't improve one jot on Hydroxychloroquinine but I'm sure others have,
Au revoir Linda
Elizabeth

Merci Elizabeth, tu parles Francais comme moi?

lindalegs

suzygirl wrote:

I take plaquenil (hydroxy), it helped with the fatigue, but not with my joints...................... To my knowledge it doesn't cause dry eyes. I had mine before starting plaquenil. It does take between 3 -12 weeks to achieve maximum effect.

Hope it helps you.

Thanks Suzy, I'm not looking forward to the nausea and am hoping that I won't suffer from it - but I suppose I'll give it a go - he says I can decided whether to go on it or not. That's why I'm asking for other people's experiences, so every post helps.

lindalegs

wibberley wrote:

Good luck with the Hydroxy, Linda. I've no first hand experience but my cousin takes it for her RA and likes it.

Lois x

Thanks Lois, does your cousin just take Hydroxy or is it as a cocktail?

lindalegs

skinnylizzie wrote:

Hi Linda

I've also been on hydroxychloroquine for nearly 3 years now, and can honestly say I have had no side effects what so ever. In fact, I have found that it has given me a wee bit more energy being on it, not quite sure if it has helped too much with joint pain but it has helped with energy. I'm still taking 400mg a day, ......Hope it works for you too, especially the combination with MTX.
Let us know how you get on!

take care

Hi Lizzie,

I hope, if I decide to take it, that I'm like you've been with no side effects - strange you're still on 400mg I thought they reduced it after a short while. Have they left you on a high dose because your RA isn't controlled properly yet?

lindalegs

tillytop wrote:

Hi Lindalegs

I think your idea of a "Proper cocktail glass" is a good one! I know how you feel, as I think do many if not most of the forum peeps!..............Really good luck with it and I hope it helps - and that you will be able to reduce the mtx in time.
Tillyxxx

Hi Tilly,

Why have you stopped taking it?

.................. and I'll pour you a cocktail whenever you need one

lindalegs

frogmorton wrote:

Hi Linda
I take it..................You'll be fine Linda I'm sure
Love toni xx

Thanks Toni,

I was told I'd have to have an eye test, the worrying bit, for me, in your post is that my Mum was nearly blind with macular degeneration before she died - I shall mention this to my Rheumy in case I'm already prone to it.

lindalegs

collywobble wrote:

Bonsoir ma copine

Mine's a tequila sunrise, if you're buying ..........Good luck with it Legs,
love from Lynn xxx

Bonsoir mon amie

I've also read that it's a 'safer' Dmard and they don't have to monitor bloods with it ...just your eyesight. I too, thought I was doing well on Mtx and didn't realise my inflammation factors were raised I just thought I was having a slightly poor spell :roll:

That's a tequila sunrise for you and a cosmopolitan for me.

lindalegs

stickywicket wrote:

Hi there, Legs

Are you my long lost twin? .......Did Collywobble mention Tequila Sunrises? Yes please. Very generous.

Yes, Stickywicket I am your long lost twin, remember me, Kneepads

I'm surprised they do a test for colour blindness and this a total coincidence because not only did my Mum have macular degeneration, as mentioned by Toni but my Dad is totally colour blind and only ever sees black, white and shades of grey. This could be a reason for my not taking it.

I'm on cosmopolitan, Lynn's on Tequila Sunrise .............you have to be original for your order or I'm not buying

ironic

Hi Linda,
I have been taking 400mg of Hydrox for a couple of years now and have not had any problems with it. My opticians told me that it is very rare to have any problems with eyes as they have slightly altered the formulation so it is even rarer to have problems. It did take a good while for it to work for me but as you know we are all different. There have been others on here that felt the difference very quickly.
Like you I am also taking mtx now. I have been told if my RA gets controlled then I can reduce the Hydrox.
Hopefully it will be all you need to put you back on track.
Lv, Ix

lindalegs

need me bed wrote:

Ello legs et al

I take the Hydroxychloroquine, Sulfasalazine, AND Methotrexate among others (approx 17 tablets a day more on a meth day).......... i've started to rattle when i walk..

Hi Needy,

Wow that's one or two tablets there - you need a big glass for your cocktail. :shock:

I hope your Mtx side effects settle down, mine did quite quickly.

Your Username and I agree. Night, night.

lindalegs

ironic wrote:

Hi Linda,
I have been taking 400mg of Hydrox ............... I have been told if my RA gets controlled then I can reduce the Hydrox.
Hopefully it will be all you need to put you back on track.
Lv, Ix

Hi I

Was just off to bed when I spotted you.

Thanks for your reply. You too are on a high dose - have they reduced it at all? Strange that they'd consider reducing your Hydroxy and not Mtx when Mtx is the slightly more toxic drug.

Anyhow I must go to bed as I have an early start tomorrow.

See you all some time tomorrow.

dreamdaisy

Just because side effects are listed does not mean that they will all be lining up at your door. They list everything under the sun (and some extras) simply so one cannot sue. Oh to grow a second head, or turn green - then you could sue but as for the rest? No, they told you in the leaflet.

I think hydroxy is one of the gentler anti-inflams in terms of what it 'might' do side effects wise: the inflammation does need dealing with in order to further reduce damage and (hopefully) pain, so I hope it does the trick. The very best of luck with it, legs, and here's to better blood results. Mine's a Manhattan.

Isn't macular degeneration common now? I don't think it's as a result of everyone taking meds, the longer we live (and how scientists like to trumpet that) surely the more things will wear out. OK we can live until 100+ now, but what is the 'normal' life-span of our bodies? As far as I can tell that hasn't been stretched to match. My mum was diagnosed with it (the dry version) and the GP gave her something to take, with very good effects too. DD

julie47

Hi linda

I am on hydroxy and have been for well over a year. I didn't suffer with dicky yummy or anything else.
I had a clolour blind test and was ok after using it a year.

I am also on 10mg mtx...100mg x2 a day celecoxib , 20mg leflunomide and 200mg hydroxy.

I do think when they added the hydroxy it helped.

Hope it helps you too.

Take care juliepf x