NRAS Logo
Logged in as: pedro-pmc Search | Moderate | Active Topics | My Profile | Members | Logout

New Topic Post Reply
Hydroxychloroquine Options
LouiseMc
#1 Posted : Friday, August 05, 2011 1:28:12 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 4/20/2010
Posts: 153
Location: Kent
Hi

I had by hospital appointment yesterday & unfortunately my disease activity score is the highest its ever been, it was 6. something. my nurse was very good and looked over my notes and could see that since diagnosis in March 09 we haven't really got my RA under control and my esr hasn't really reduced.

So next plan is to add Hydroxchloroquine, I've been on mtx since January and recently have started doing this my injection because of a very sensitive stomach! Just wondered what people thought of this drug? Confused They also said that if things do not improve that i will probably have to have Biologic treatment, which I'm not to sure what that involves?

I did feel light headed earlier but i think that could be more to do with that i feel very down again, I've been on anti depressants since January. Ive been off work for the last two weeks and really cant face going back next week, feel very low and it wouldn't take much for me to burst into tears Sad I also cried in my appointment, what a wolly! Just really had enough of this RA its so unfair that we have to go through this and are unable to cope with the everyday jobs like just doing our hair!

Im fed up with my weight also, i cant seem to stick to a diet because all i want to do is comfort eat!

Grrr! Sorry for moaning just very fed up!



Take care
love lou xxx
I love people who can make you smile even when you do not feel like smiling. x
jeanb
#2 Posted : Friday, August 05, 2011 1:39:38 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 3,006
Location: Timperley
Hi Lou

First of all - stop apologising!!!! You are not allowed to apologise on here!

I'm sorry you are having such a tough time. I take hydroxy and have not had any side effects at all, although I do wonder whether it has done me any good as my blood results are not much better now than before I started on it! However, one forum friend swears by it so it must affect us all differently.

Lots of people on here are on biologic drugs and for many, they are a lifesaver. Your DAS score seems to point to that being your next option.

Good luck with it all and let us know thingsprogress.

Love Jeanxx
jenni_b
#3 Posted : Friday, August 05, 2011 1:41:32 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
Hello

sorry things are tough going.

hydroxychloroquine is a fairly mild drug in the scheme of things but is often used with MTX and also in something called triple therapy (with sulphazaline added too)

Anti tnfs are expensive drugs that are very powerful and they dont try you for those until you have failed at least 2 DMARDs.

Anti-tnfs are either through injection or through IV and they can be very fast acting.

there are several to choose from: Cimzia, Enbrel, Humira, Infliximab etc.

Cimzia is a newer one but it doesnt hurt!

By all means look up the drug company websites for these.

Jenni xx
how to be a velvet bulldoser
LouiseMc
#4 Posted : Friday, August 05, 2011 1:46:59 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 4/20/2010
Posts: 153
Location: Kent
Thank you ladies.

Sorry, ARRH i apologized again. I just hating sounding like Im feeling sorry for myself..... although I'm am but i shouldn't because it could be a lot worse xx

I love people who can make you smile even when you do not feel like smiling. x
Julia17
#5 Posted : Friday, August 05, 2011 5:57:59 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 2/18/2010
Posts: 1,098
Location: farningham kent
Hi Lou

Sorry to hear you are having such a rough time at the moment, I think when we break down at such times, I have done it, it certainly lets them know just how low and ill you feel. It is very difficult for the medical profession to really understand how much we have to suffer with the constant pain and all the other issues we have to cope with all the time and I think it gives them some idea.

I hope you are able to move onto some new meds as soon as poss, I have taken hydroxychloroquinne but I don t think it really had any impact.

Take care Julia x

amandalewin
#6 Posted : Friday, August 05, 2011 11:08:59 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 7/6/2011
Posts: 65
Hydro is often deemed as a softer option than the others and used with triple therapy as already said...

Give it a go- it may help calm the inflammation and pain.

The anti tnfs were made solely to treat RA whereas the other meds treat other diseases.

I take 400mg of Hydro and sulpha and can still nurse my baby girl on them!

Amanda
Tracy-Street
#7 Posted : Friday, August 05, 2011 11:29:17 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/12/2011
Posts: 124
Location: Wilts, nr Stonehenge
Hi Lou,

I have been on Hydro-whatsit triple therapy since Oct last yr, no side effects what so ever.

I have also been on Cimzia since may, WOW what difference I felt, 90% less fatigue, 60% less flare-ups, my Mum kept asking if I was still bouncing off the walls lol. I felt great.Administering my own syringes was no problem either, done and dusted in minutes.

BUT..........the last couple of weeks, I have been deteriorating. This week I have not been pain free at all.

Go for it, I hope it works for you. You will get training etc.

Lots of kind thoughts

Trace xx
Mairead-H
#8 Posted : Saturday, August 06, 2011 5:26:14 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/26/2010
Posts: 128
Location: Birmingham
I had hydrothingy but, as with everything else to date, I had an adverse reaction to it. Signs to look out for are skin rashes, mouth ulcers, cold sores, diarrhohea. If you get those symptoms stop it immediately and ring your Rheumy helpline or contact GP for advice. I had to stop after two weeks and it took a week for the symptoms to subside.

Don't freak though, I'm a worst-case-scenario, having had two serious allergic reactions to two out of the four DMARDs I've tried (sulfasalazine, hydrodoodah), and got vicious side effects from the other two (leflunomide, methotrexate). I'm a bit of a walking case study and figure they'll have me in for vivisection before long. When I walk into the clinic all you can hear is bones crunching from the hand-wringing despair and frustration that precedes me. RollEyes

I just wanted to highlight the potential side effects so you recognise them early and not leave it too long like I did with sulfasalazine.

Mixing DMARDs can work well. Unfortunately our disease is a bit of a suck it and see hence the shake and bake approach. Good luck xxxx
brendab
#9 Posted : Tuesday, August 09, 2011 3:35:45 AM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/3/2009
Posts: 62
Hi Louise

I've been on hydroxychloroquine since 2007 and so far it has worked very well for me. It took about 10 weeks to really kick in the first time but then I stopped them as I wasn't feeling good. In less than a week I couldn't even lift a spoon to my mouth so I starting taking them again but only half the dose which is 200mg. I'm now taking 300mg every day (1.5 tablets) and coping well. My consultant told me hydroxy is a very benign drug but can work well. I'm also on a low dose of steroids and amytriptylene. Good luck - Brenda
Rose-B
#10 Posted : Tuesday, August 09, 2011 4:18:40 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/20/2010
Posts: 1,749
Location: Somerset

Hello Louise

So sorry that things are bad for you at the moment. I empathise with you . I have been on hydro in the past and had to stop
it due to side effects, however there are very many who are able to get witht he drug very well. Fingers crossed for you
I really hope that it works.

Don't ever apologise you are ok to share your thoughts. I am also off the past 2 weeks as not coping so I do understand.

Rose x
LynW
#11 Posted : Wednesday, August 10, 2011 1:38:49 AM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Lou

Sorry things are not good for you at the moment but on the positive side with new medication added to the mix there's every chance things will improve. Unfortunately these things do take time to kick in so in the meantime try to rest when you are able. Can you perhaps stay off work a while longer until things are more stable? Try to stay positive Lou there are lots of options out there and the right drug/combi will be found for you.

Give yourself a treat ... you deserve it ThumpUp

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Users browsing this topic
New Topic Post Reply
Forum Jump  
You can post new topics in this forum.
You can reply to topics in this forum.
You cannot delete your posts in this forum.
You can edit your posts in this forum.
You cannot create polls in this forum.
You cannot vote in polls in this forum.

SoClean Theme By Jaben Cargman (Tiny Gecko)
Powered by YAF 1.9.3 | YAF © 2003-2009, Yet Another Forum.NET
This page was generated in 0.160 seconds.