new drug - Hydroxychloroquine
salamander
Member Posts: 1,906
hi everyone, just got back from my consultant. For those of you who don't know, I've been waiting weeks for this appointment. Was on mtx but that has been stopped so only on steroids. Well, he's upped them again for two weeks to get me out of trouble, which is fine, I guess. He's also put me on Hydroxychloroquine 200mg twice daily with a view to moving to anti-tnfs in the new year. I've got an appt with him beginning of Jan.
I don't know anything about this drug apart from having to have an eye test before I go on it :? Any info about it gratefully received.
I didn't tell him how rough things have been because I think he is doing what is needed. I really like my rheumy so tend to be a bit more relaxed in my appointments than with other docs
(though I did get out my list
Feel I am on a path again which is good as have been treading water for quite a while now. It's good to have a plan!
I don't know anything about this drug apart from having to have an eye test before I go on it :? Any info about it gratefully received.
I didn't tell him how rough things have been because I think he is doing what is needed. I really like my rheumy so tend to be a bit more relaxed in my appointments than with other docs
(though I did get out my list
Feel I am on a path again which is good as have been treading water for quite a while now. It's good to have a plan!
0
Comments
-
Hi salamander,
I'm so pleased for you that you are now on a definite treatment pathway.
I don't know anything about the Hydro. med but there are sure to be some folks around who can offer you some info from their own experiences.
great to hear of your appointment.... having a rheumy that you trust is definitely a big plus!
will look forward to reading about your progress when you start the anti tnf.
Iris xxx0 -
Hello!
I started on Hydro a couple of months ago.
Not seen any improvement with it however no adverse side effects either.
So not much help to you at the moment - sorry.
Remember to think positive though that it will work as it just might
Keep smiling, Carol0 -
Hi i was on it for a short while earlier this year in combination with other drugs it did help but I had severe stomach problems with it so had to stop as I was losing too much weight
However I was assured that this was very rare and my rheumy hadn't had any other patients react like this. Apparently it's usually a well tolerated drug but doesn't always work for everybody. It did however really help with the fatigue....first drug to really do that!
Sorry this probably isn't much help hope somebody can tell you something more useful.
Chrissie0 -
Hi
Sorry I'm no help with the meds but glad to hear you know where you are going treatment wise and are more settled.
Its great to have a good rheumy isnt it.....I've got OA so its an orthopaedic surgeon i see but he is lovely.....goes out of his way to help.
What a difference it makes
Love
Hileena0 -
Thanks Iris, Chrissie, Carola and Hileena,
I
Chrissie & Carola, did either of you have your eyes tested before you started on it?
xx0 -
Hi Salamander,
I'm on hydrox along with mtx, sulpha and meloxicam (I know, I rattle if shaken!). The only side effect I have is dry eyes. I didn't have an eye test before I started on these drugs, however, I recently went back to my optician (2 weeks ago) as my eyesight deteriorated suddenly as my contact lenses were definitely not as sharp as they should be. My optician said that the reason for this is most likely that it's the hydrox affecting it because it's got a 'common' side effect of dryness in the eyes. My eyes are a lot dryer and so this could explain the vision problems because they get tired more quickly and dry out which cause the lenses not to sit properly. He's given me some good lubricating eye drops as there is nothing more he can do for me right now as increasing the power is pointless. I've seen a bit of improvement, so dryness is the only problem.
There can be an eye condition that you can get from arthritis, but this is unconnected to drugs taken in association to arthritis, so I will not confuse you by telling you about it!
I hope that helps put your mind at rest. You have probably been advised to go for an eye test to make sure that you don't have any underlying problems which can be aggravated by hydrox or they may tell you that you can be prone to dry eyes and so it's something you should just be aware of - I'd say it's best to go just to be sure you've got it covered! I hope that hydrox makes you feel a bit better!0 -
Hi Salamander
I was diagnosed with RA some years ago and was on the H word. Turned out that I was a borderline case and after @ two years I was a lot better. Never taken it since and my probs now seem to be more OA.0 -
Hi Salamander
Just read your post from yesterday and wanted to say how pleased I am that you had a good appointment yesterday! Glad the rheumy suggested you increased the steroids again to give you some interim relief. Re the Hydroxy, I had that for a while and had no problems with it at all. Not sure how well it worked tho because I was taking it in combination with other things and I don't really know what was doing what if you see what I mean!
I'm sure there will be a drug info leaflet on this site with more info too.
Really pleased too that the rheumy is talking about anti-tnfs for you in the new year - gives you something really postive to hang on to doesn't it?
Good luck with it all.
Love Tilly xxx0 -
Hi
It is very important for you to have an eye test before taking Hydroxy and at least once a year while on it, side effects are rare with this drug but dont risk it have the eye test done.
I take hydroxy along with mxt and sulpha, it is one of the milder drugs so hopefully you wont have any trouble with it.
i take mine with breakfast and dinner was told to do this just incase have any stomach probs.
best wishes and good luck with your future treatment0 -
salamander wrote:Thanks Iris, Chrissie, Carola and Hileena,
I think my rheumy is just ticking boxes but don't mind that if I get what I need in the end. Thanks for your useful comments. I will wait and see what happens:) Just nice to be on something again to protect my joints, that's my big worry at the moment.
Chrissie & Carola, did either of you have your eyes tested before you started on it?
xx
Aye (pardon the pun) they tested my eyes. It is very very rare indeed that Hydro causes eye probs - they just test to be on the safe side. I take the same amount of it as you are and have had no adverse reactions.
Good luck on it and hope you had a decent sleep last night as a good sleep is the best medicine with a handful of positivity!
Carol0 -
Thanks everyone. Alarka & Page& Lynn, I will take your advice and call my optician this morning. I already suffer from dry eyes so will have to be better with my eye drops. Tilly, Yes, it is good that he is considering me for anti tnfs. I was worried that he wouldn't because of my bad chest infection but the xray was as clear as a bell so that is good news.
Lulu, you give me hope that I might recover from this illness!!0 -
salamander wrote:Thanks Iris, Chrissie, Carola and Hileena,
I think my rheumy is just ticking boxes but don't mind that if I get what I need in the end. Thanks for your useful comments. I will wait and see what happens:) Just nice to be on something again to protect my joints, that's my big worry at the moment.
Chrissie & Carola, did either of you have your eyes tested before you started on it?
xx
Hi yes I did have my eyes tested and was advised to have this done every year (which I have done for work anyway as I use a PC all day) but the optician said that it was a very rare side effect and they just do it to be safe.
I was also given a card with a test that I could complete myself that the nurse in clinic showed me how to use....but again she said it was very rare.
Generally this is one of the best drugs for not having side effects so touch wood you’ll be fine
Chrissie0 -
thanks Chrissie0
-
Hi,I've been on Hydroxy since June '09 and I've never had any bad reactions with it.It's a lot less toxic than most other arthritis drugs.MTX was added a few months ago after a bad flare so I can't say if Hydroxy is completely efficient on it's own.As others have said,the regular eye test is essential. Breane.x0
-
Hi Salamander
I have taken it for 3 years. I did not have any side effects and as already been mentioned here it is very good for fatique.
I have my eyes tested at the hospital every year. They take a picture of your eye balls and mine are fine!!!!
I should also go to the opticians but as pennies are very tight at the mo, I have not been.
Fxxx0 -
Rainbow77 wrote:Hi Salamander
I have taken it for 3 years. I did not have any side effects and as already been mentioned here it is very good for fatique.
I have my eyes tested at the hospital every year. They take a picture of your eye balls and mine are fine!!!!
I should also go to the opticians but as pennies are very tight at the mo, I have not been.
Fxxx
Hi Fay, thanks for this info. I rang my optician this morning and they are going to look at my eyes this afternoon. Not going to charge me for it as is a 'medical reqjuirement.' Maybe they will make the same exception for you.
x0 -
breane wrote:Hi,I've been on Hydroxy since June '09 and I've never had any bad reactions with it.It's a lot less toxic than most other arthritis drugs.MTX was added a few months ago after a bad flare so I can't say if Hydroxy is completely efficient on it's own.As others have said,the regular eye test is essential. Breane.x
Thanks Breane, am going to get my eyes checked today anyway.
x0 -
Hi Sal
I am on it too Just fine - had slight belly issues but the lansoprazole sorted that
Love Toni xx0 -
Been on it for just over 3 months, no issues at all. I take them whenever I remember in the day, usually after a meal.
They might be helping, not totally sure yet as supposedly it can take up to 6 months to see the full effect.0 -
Hi again Salamander.
Glad your chest x-ray was clear. Do you know which anti-tnf you wil be having and when, in the new year you can start?
Love Tilly xxx0 -
Thanks Toni, Caprica & Tilly, good to hear of others experiences. Had an eye test this afternoon and am ready to go!
I don't know what I will get yet Tilly, just need to get this second dmard out of the way first I'm still testing -ve for RA so that rules out some. I've got a lot of confidence in my consultant, he is very experienced and involved in all the latest research so trust his judgement completely. He's also very nice, which helps!0 -
Hi again Salamander
So you just have to wait and see then re which anti-tnf. But sounds as if you have a really good consultant which is great news and having confidence in him must give you peace of mind.
Really good luck with it all.
Love Tilly xxx0 -
tillytop wrote:Hi again Salamander
So you just have to wait and see then re which anti-tnf. But sounds as if you have a really good consultant which is great news and having confidence in him must give you peace of mind.
Really good luck with it all.
Love Tilly xxx
Thanks Tilly!
xx0 -
Hi Sally
So glad your appointment went well, fingers crossed it start to work for you very soon.
What always amazes me on this forum, is all the information you can get so quickly...much better then seeing the doctor
Love
Barbara xLove
Barbara0 -
Salamander I remember I first became ill on Xmas day, My friends were picking me up to take me for lunch and I phoned to say I had flu and that was it Wham! my GP spotted it instantly and I got a Rhumy appt. very quickly so I started on the 'H' almost from day one that probably had a massive effect on the RA. I often wonder if it is still there but if so it is in small doses ie, sort of itchy burning skin that feels rather like a scald, red hurting minor joints, etc. but nothing major.0
Categories
- All Categories
- 12.2K Our Community
- 9.7K Living with arthritis
- 777 Chat to our Helpline Team
- 398 Coffee Lounge
- 23 Food and Diet
- 224 Work and financial support
- 6 Want to Get Involved?
- 173 Hints and Tips
- 400 Young people's community
- 12 Parents of Child with Arthritis
- 38 My Triumphs
- 128 Let's Move
- 33 Sports and Hobbies
- 244 Coronavirus (COVID-19)
- 21 How to use your online community
- 37 Community Feedback and ideas