Hi,

I thought I would start off a thread on Hydroxc as its my 2nd dmard to start taking after failing mtx. I know theres a few of us who have started off on hydroxc recently and thought maybe have a thread to share our experiences of it.

Anyway here it goes. I was recluctant to go on the Hydroxc after the mtx nightmare and this morning I woke up with my left eye blurred and it wouldnt go away. Thankfully after a good five minutes or so my sight came back. i have an eye condition that effects the oil producing glands so I do from time to time have this blurring but i did panick when I woke up and couldnt see out of the left eye. Thankfully I spoke to the optician and she told me that the problem with Hydroxc causes permanent blurring eg it wouldnt have gone away. thankfully I knew this or it would have been yet another emergency panick fuelled trip to the ER. Which just goes to show how valuable information is for us to understand and understanding gives us control. It also helps that I have an appointment with the optomotology appointment in January so I can get an eye check up

Anwyay (touch wood) all seems well for the moment . Though I know my RA is not undercontrol yet but i have only been on hydroxc for 5 weeks or more and it does take a while. I just hope it works and it works well. I also would mention that like the mtx my RA seemed to get a bit worse when I started a new protocol or perhaps its just conicidence. I have had my first blood tests on thursday the nurse cut me pretty badly when she leaned over to get the 2nd valve she pulled the needle in my skin and later the cotton was blood soaked and the entry area is slashed and bruised and looks a right mess. I am pretty upset as I didnt want to complain and it felt like a papercut at the time and I winced. Of course I am really upset that I didnt say anything, thankfully I am not going back to that hospital to get my bloods done again. My husband said that it will get better - but they should take better care of my veins. I thnk I will show it to my rheumy when I go it but I think he wont be interested and its really PALs that I should speak to - but really dont have the energy to go down that road.

So hows it been for you ho are on hydroxc?

Hi,I have been on Hydroxy for just over 5 months and had no trouble taking it during that time.However,for the past two weeks I've been experiencing head pain every day and I just can't seem to get rid of it. It's been so troublesome that I've made an appointment with my GP to see if it's linked to the Hydroxy now it's been in my system for a while.(It takes 5-6 months to get into the system).If he doesn't have an answer I will ask the rhuemy consultant when I see her just before Christmas.The head pain has really been getting me down and I know it's not a normal headache. Brenda.

Hi YA

Yes fire away

Im part of Hydroxy club for almost 4 weeks now.
no problmes with it at all.

also on Mtx 15 mg.

so far RA has started to improve to point on far less painkillers,and tis also helepd with Lupus sdie things which for me was bonus have say.
ive got tell rheumy now how its helped.
no porblems at all with it.

im only on 200 mg so he may increase as couple times of bad RA while away,and rash started up but did quickly die down.
so bit complex as im on it for 2 conditons.
havnt got me blood results yet so be keen see how things are clinically as rheumy would say.

hope that helps u.
a very postive exp hydroxy now feel why on earth wasnt given it sooner as Mtx Alone was a issue-re side effects and also not bringing inflammation levels down enough.

well im very glad new rheumy gave me hydrpxy.

also very postive time wiht amtripline-for ym fibromalgia.

inky07

Hi

I've been on hydroxy for over two years now and it seems to be keeping me stable. I started on 400mg a day but after a few months I started getting odd side effects. I just felt 'out of it' and faint nd had to keep sitting down. I told my rheumy who hadn't heard of these side effects but he said I should stop it for a few weeks and see what happened. BIG MISTAKE. After a week I was lying in bed crying as I couldn't even get a spoon to my mouth. I then decided to try again at a lower dose and for a while took 200mg daily with 5mg steroid. When I started to get very uncomfortable I upped the dose and now alternate 400mg and 200mg daily which seems to work. I have tried to reduce the steroids from 5mg but when I do something horrible usually happens. Probably coincidence but............
I also now take amitriptylene for the nerve pain in my leg caused by a broken off piece of disc and this has also improved my quality of life considerably.

I had to have my eyes tested before starting hydroxy and now have yearly tests. I have worn glasses for some years but so far so good.

I hope it works well for all you new ones trying it.

Brenda

I must admit I feel very good at present but don't know whether this is due to the increased MTX or the hydroxy. As the Hydroxy takes so long to get into the system, I would think it's the MTX.

With regard to the possible eye problems; My optician said that as long as I visit him for a check up every 6 months, he will be able to keep a check on things. I don't think I will know if it's affecting my eyes as I have so many probs with Sjorgren's - watery, blurred eyes for about 30% of the time. I don't think I'll be able to tell the difference - we'll have to see!

JENNI - I love your new Avator

Hello Mrs Woman i am on hydrox two a day. Also 20mg injection methetrexate. Have been for about two years and doing really well on it. Hope it works well for you.Kathleen Mc.

I'm in the same club, MTX 20mg Hydroxy 400mg for almost 3 years now. Still taking Naproxen, Tramadol 2x 150mg daily, Paracetamol also 50mg Amitriptyline because of Fibromyalgia. I don't feel I'm doing very, I was also on Sulphasalazine as well for a time but had to stop that because of a nasty rash. I've had eye tests yearly and after the last one he had to send a letter to my GP saying that I had very slight cloudy striations on both eyes which may have been caused by the medications. My GP asked me to show a copy of the letter to my Rheumy because I was due to see him anyway and when she contacts him he doesn't get back to her. The Rheumy said it was nothing to worry about my eye sight is not effected. My eyes do feel dry and scratchy at times but that could be due to the RA. I am due for an eye test now, I must make an appointment. Glenys.

Hi MrsWoman

I have been on HCQ from July 07. I have not had any problems with it at all . But it is not enough to keep my RA under control on its own. I started on 400 mg a day and it was reduced to 200 mg in June 09. I am also on Imuran and Enbrel.

Hope it does the trick for you.

Joy

Hi All hydro people
I'm sorry that you had such a bad experience with your blood test Mrs Woman. You really must complain.

I've been on hydro 2 tabs per day for 6 weeks now and still feel awful. My rheumy stopped sulph as it wasn't helping. I'm starting on MTX also after my cardiolgy tests.
I take 25mg amitriptyline at night and also 4x2 of co-codamol 30/500mg per day and 2 arthrotec 75 per day. I have a other meds for other problems too.I had a steroid jab at my last appointment (no help).

I'm still in lots of pain, can't sleep because of the pain but sleepy all the time even though my GP put me on morphine patches on Monday for 2 weeks to start with.
Really could do with some relief from all of this.

Shirley x

Hi

Just gone through a big list of various worries and anxieties with GP. Asked if I was on teh list for swineflu shots - apparently not says that hydroxc does not interfere with immune system to the same degree as other drugs. I suppose the problem I am having at the moment is that i have been on steriods for a while and their potency is starting to wear off a bit as i am coasting on a low dose and the hydroxc hasnt kicked in yet. I am concerned that I am on a dmard thats not that potent and worried about getting erosions after all they only get picked up after the damage is done.

Anyone have any side effects at all?

Glenys Specsavers were doing eye tests for a tenner a month or so ago.. perhaps check out the websites. Also perhaps the dryness is caused by central heating as my eyes are drying out and even younger women have been complaining to me about central heating having a drying effect. you could get some tears to moisten your eyes in the interim until you have them checked out.