Hydroxychloroquine: Hi, after a visit to my rheumy... - NRAS

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Hydroxychloroquine

WiltonT profile image
22 Replies

Hi, after a visit to my rheumy nurse yesterday I've now had another steroid injection and had Hydroxychloroquine prescribed to take alongside the methotrexate. I just feel like one minute I'm feeling like things are improving and then the next I'm back to square one! I was diagnosed on Dec 30th and know it's still early days but feel a little frustrated and worried about getting the disease under control, the amount of medication I'm taking and finding the correct combination of medication to help. I know through reading your comments that a few of you are on various DMARD's does adding a second help? Have you experienced any side effects? Thanks in advance T x

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WiltonT
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22 Replies
JacquiThomas999 profile image
JacquiThomas999

You and I are going through this at the same time. I looked up the NRAS website and there was an article on combined MTX and Hydroxychloroquine saying that MTX was the base line and add ons improve the situation. I also started this regime today so we will travel together.

WiltonT profile image
WiltonT in reply toJacquiThomas999

Oh really, good luck and hope the combination works for us both x

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS in reply toJacquiThomas999

Here's a link to the article Jacqui mentioned:

nras.org.uk/combination-the...

This is a common combination of drugs and can work very well. They can also add in a 3rd if necessary. The good news is, they are doing something to try to get the disease under better control, though very tough having to wait for each change of medication to kick in.

I hope you feel better soon.

Victoria

(NRAS)

helixhelix profile image
helixhelix

Well I've been on that road for 6 years now, and it's done me very well. MTX made a big difference, but still left me with little niggles and aches that slowly started to increase. So Hydroxy was added. At first I didn't think it did anything, but after a couple of months I realised that I was able to do much more. And I had no side effects from it.

A while later the disease did start to get active again, so Sulpha was also added in. And I've been on the triple mix for about 4 years now and am normally in remission - with occasional blips when I fall off that particular wagon.

And everything I've read said that for many people double or triple therapy with traditional DMARDs (ie MTX + Hydroxy, etc) works as well as using biologics. So hope you do as well as I have.

WiltonT profile image
WiltonT in reply tohelixhelix

Thank you, this is reassuring. X

dtech profile image
dtech

I was same as helix. I am one of the lucky ones that have had no side effects from mtx, hydrochloroquinine, sulphasalazine and naproxen. Was in remission after four years on them, so was able to cut out the naproxen and quinine. So good luck and I hope it works for you as it did for me.

Matilda_1922 profile image
Matilda_1922

Hi

I am in a similar situation as you. Diagnosed in January and started methotrexate and a few weeks ago added hydroxychloroquine. I feel much better now apart from stiffness especially in my wrists which is causing discomfort when writing.

Good luck

WiltonT profile image
WiltonT in reply toMatilda_1922

Thanks for replying, do you take the Hydroxychloroquine daily? hope you get some relief soon x

Matilda_1922 profile image
Matilda_1922 in reply toWiltonT

Yes maximum dose 200mg twice a day

WiltonT profile image
WiltonT in reply toMatilda_1922

Oh thanks, yes I've to take 1x 200mg per day for the first week then 2 x 200mg per day thereafter x

Matilda_1922 profile image
Matilda_1922 in reply toWiltonT

I started hydroxyquinine 200 mg twice from the beginning. It's strange how different units have their ways in initiating medication. I feel much better but some sickness around the time Of week when I take MTX. I will mention this next time as I believe the injections are better. I tried to put off the injections but think I should try if allowed to change over

Moomin8 profile image
Moomin8

Morning all😀

Can I join the gang please? The one which you were diagnosed Jan this year?😀

Slightly different road though...first put on 10mg mtx for 3 months along with 5mg folic acid 3 days later, along with steroid injections ( which never worked!) and 2 courses of 30mg a day for a week. Also omeprazole to cover me from every single antiinflammatory in the doc's arsenal. 4 months in (due to rheumy appointments being pushed out) I'm on 20mg mtx with (3 days later) 5mg folic acid for 4 days along with omeprazole, Etoricoxib, its b12 & d3....

Still flaring terribly😐and don't have appointment with rheumy until July!

I'm wondering if they add another smarts then. Have any of you suffered any side effects from the other demands?

Matilda_1922 profile image
Matilda_1922 in reply toMoomin8

I'm in a similar position as you. Pain more or less gone but stiffness is the issue causing me discomfort at work as mainly writing. Very behind the time. Can't wait for electronic records which I hope will be soon. Told not soon enough for me.

I suffer with some nausea a day or 2 day after MTX going to ask if I can have injections. Been worse following starting hydroxychloroquine five weeks ago. Apart from that I feel the best in a long time.

Hope you get sorted soon.

I have lost faith with the Rhuematlogy department I'm under. Called the help line earlier this week to be told not manned by nurses anymore They said would pass on message and was expecting a reply.

I'm due a telephone review early July.

It's not my local hospital but they saw me sooner.

I may consider asking if I can transfer as it will be easier for me but thought will see how things go as I work at my local hospital and would like to be off site for my ongoing care.

popsmith1874 profile image
popsmith1874

I'm in same boat and waiting t be screened for Biologics after failing on Metx sulfazalasine and hydrox ,I had to bite bullet and get a steroid injection as was in agony

keywester profile image
keywester

In my case I either take multiple meds for control or suffer pain and flares. I take Leflunomide, Plaquenil (Name brand Hydroxychloroquine which for some reason works better than generic for me), and Humira. Been taking for over two years with once a year or so of intervention with Prednisone. Very proud of my rheumy. She is the best physician I deal with.

dtech profile image
dtech in reply tokeywester

I was told plaquinel has been discontinued. So you may be switched to another brand, but the company that made plaquinal is making the new one, which is the same! Work that one out. Lol

keywester profile image
keywester in reply todtech

My prescriptions for hydroxychloroquine continue to be filled with Plaquinel. It is more effective in controlling my symptoms than generics.

dtech profile image
dtech in reply tokeywester

How odd. Maybe it's just in the uk?

Calph profile image
Calph

Hi when I was diagnosed with Tara was started on methotrexate and on hydroxychloroquine and made a big difference but after 7 months started to flare and was put on Cimzia and are on all 3 at the moment. It has helped my hands a lot but still got symptoms in other trigger spots. On my eleventh week on Cimzia so still early days yet. Hope you start to see some improvement soon. The only side effect I have got is a metallic taste which I have read is from the methotrexate.

Calph profile image
Calph

Should have been ra not Tara lol

RichardG profile image
RichardG

I think most of us have probably been through this. It took just over 2 years to find a combination that worked for me. Now on Humira and methotrexate which is brilliant for me.

RichardG profile image
RichardG in reply toRichardG

I should add that I started on methotrexate which worked for a while. Then added hydroxyquinoline which worked for a while then added sulphazalazine which I could not tolerate. Then started on my present combination which I have been in for about 3 years.

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