I have had 2 steroid injections in 2 months and they seemed to help but now being put on hydroxychloroquine has any one else used this?

[denisep]

Not sure been recommended to go on to hydroxychloroquine and 2 ibuprofen tablets a day has any one else tried or recommended this?

[Lizziefoxton]

Hi Denise, I'm on hydroxychloriquine and have been for 4/5 years, personally i dont feel it makes much of a difference but carried on with it just in case, I also have to take 6-8 30/500mg cocodamol per day for the pain in my joints.

I have had some quite bad flare ups this past 2 years so my specialist has given me Methotrexate 10mg per week to start with which makes me feel a bit sick at times and folic acid for 6 days not inc the day i take MXT, I am only on my 2nd week so fingers crossed it works! I hope Hydroxychloriquine works for you, i guess its different for everyone

Liz

[Jennie_103 in reply to Lizziefoxton]

Have you tried pregabalin for the joint pain? Doing wonders for me! And less side effects in terms of drowsiness and digestion than co-codomol too. Just started Hydroxychloroiquine a few weeks ago. See what happens!

[denisep]

Thank you so much for replying, I am worried as i really dont want the pain that i had before. i still have it but no where near what i did have. I have heard bad and good for this drug ?

[Lizziefoxton]

I think it depends on the person some people react badly to it..and some it really helps, i still have flare ups but i'm hoping that it has diluted mine a bit as they are still painful thats why i have carried on i know no different now!

I'm new to the Lupus sites etc so its always good to talk to fellow people on the same tablets I've had the steroid injections many times before and only this year have i opted out of it as i found it didn't help me but like i say its completely different for each person! You will have to let me know how you get on with Hydro, I've tried MXT before but if i get any infections which we're all prone to, i have to stop them to be able to take anitbiotics so third time lucky i wont get anything else! Good Luck! xx

[Rhodes62]

I take hyroxychloroquine, 60mg axcroxia and I have had two steroid injections in the last 6months. Also iron tablets. The injections give me a feeling of well being. This lasts 6 to 8 weeks. Wishing you well Denise.x

This was helping until 3 weeks ago i had a bad flare. I am feeling well again .... well as well as I normally do. I too am new to these sites too and it has really helped me get through this flare to read people have had similar experiences. I would like to thank everyone who offers advice support and who write of their experiences.

[Jeffmoz50]

Hi Denisep. I tried this anti maleria pill but without any good effect. You should be aware of the possible side effects though, My side effects were hot flushes and blister like legions in my mouth and around my genetalia, so I was told by my doctor to stop taking it straight away. Hope this is helpful? Jeff

[denisep]

oh my that doesnt sound good, what were you put on to replace?

[helenfirebird]

Hi. I took Hydroxy for 5 years without any great effect - still had to have oral steroids every 6 months. But the warning is you can't take it for longer than 5 years or it can affect your sight and while on it I was told to have annual eye tests with my optical knowing I was on the drug so she knew what to look for. Good luck.

[Jennie_103]

Yes, definitely need annual eye exams on Hydroxy and take it with food to combat nausea. I have to say I'm doing well on it a few weeks in with no noticeable side effects apart from a bit of an alcohol intolerance - I can't sleep very well if I have a drink but there's no "avoid alcohol" warning on the packet...

Can't tell if it's working yet though - they said it would take several months.

Give it a go - after all what do you have to lose? Can come off it immediately if there's a problem (unlike some where you have to taper off over months) so it's probably worth a shot.

[jomul]

I have been on it for 5 months and it has worked very well for that fluey feeling. It took about 3 months to work and then i really had more energy and stopped the low grade fever. I had an eye exam just before I started and I go back next month to have them checked. I do also take naprosyn, an anti inflammatory.

[margareth8537]

I've been on hydroxychoriquine for about ten years now. When I first tried it I gave up quite quickly as there seemed to be no benefit. A couple of years later another specialist recommended it and warned me it would seem to have no affect for about three months. He was right! But after that it suddenly clicked in and I have stayed on it since. My lupus started flaring when I got breast cancer three years ago - anxiety can trigger it. Had some steroid injections, and the steroids I was taking for cancer meant that my lupus then caused less trouble than usual. It has been flaring a bit recentlry so I am on steroids, but would not like to now come off the hydroxy. As I also have problems with eyes, they check regularly to see if that is causing any damage, but seems to be unrelated.

If it does work for you it is much less likely to cause the side effects of something like methatrexate.

Best of luck

[tintin49]

planequil does not suit me nearly three months into it i am having a massive flare a month later still flaring. rheumy told me to keep taking it and i feel like hell on earth. i am not taking it as i dont see the point of taking something that makes me feel like hell on earth. i had a teroid injection and will see how i get on. i dont understand why doctors insist on you taking it if you are obviously allergic to it its pure madness. and i ma sorry but if something is not making a difference i dont see the point of taking it as it is a very strong medication

[denisep]

Thank you all so much for your comments, my headaches on it were terrible and i ended up staying in bed with the headaches instead. I had a steroid injection 7 weeks ago and besides from feeling a little last week i feel not to bad, i was in bed for 24 hours which is not good. With the sun on its way at long last i am a little nervous as this normally makes me feel ill but do feel like i need sun too. I know i am not the doctor and stop a drug without consulting him is not a good thing - However, My last appointment was April, my appointment in June was postponed as he had to work nights in the hospital and my next appointment is the very end of August. The nurse at my doctors now gives me the steroid injections. x