Recently Diagnosed and So Joined

After a long period of illness, I have recently been diagnosed with SLE. I've started on the Hydroxy. Any kind of steroids are out of the question as I have bi-polar (well controlled) and it's not worth the risk of any mentally-interesting side effects. I understand the hydroxy can take quite some time to help with improvements. 3 to 6 months I think. In the meantime I have co-codamol as needed. Meloxicam was so hard on my stomach my GP had prescribed 4X the usual dose of omeprazole.

Has anyone else been down the hydroxy only route? How long has it seemed to take any effect?

10 Replies

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  • Hi Lupyknit

    Welcome to the site.

    I'm on hydroy but take other drugs too so can't comment but I'm sure you'll get a response from the community.

    You take care and keep in touch

    Xx

  • Hi I've been on hydroxy for about 2 yrs and take omeprozole too. It took about 6 mths to have any real effect but I can't do without it now, it's made a big difference to me ! I could hardly walk before because of muscle pain but now I go to a gym most days too, I still get the odd flare up occasionally but nothing like before. Hang on in there, keep taking it and hopefully it will help you too :-)

  • I'm on 400mg hydroxy a day and like you not on steroids, though I have had the odd steroid injection, but my rheumy is anti long term use of steroids.

    For me it did take 3 months to see an improvement and now after nearly a year I feel a big improvement. I was in much more pain and had much more fatigue before. I still have symptoms if I over do things etc or spend time in the sun, but these days i can spend a day or so resting and get back on track fairly easily. Whereby before it was constant and I just didn't know what to do!

  • Does the sun still cause a flare even if using sun cream protector? Just wondered.

    X

  • No if using factor 50 is fine. Ì made the mistake of using factor 25 this summer and suffered the consequence!

  • It can do. This really depends upon how sensitive the person is to UV exposure, the wavelength of the light, the factor of the suncream, how often it is reapplied and how long the exposure may be for.

  • Thanks for the information. x

  • Hey there:-) welcome to the club:) I was diagnosed 2 years ago and started plaquenil straight away, I haven't used anything else. I noticed a difference in around4 weeks, but it would of been 3-6 months before real improvement showed in my inflammation. My fatigue is up and down still, sometimes numbing...other times not so bad. I guess I can really tell how much difference plaquenil has made if I miss a couple of days of tablets, the pain and stiffness is terrible. It's been worth it for me...I'm by no means the old me or pain free but for the most part I can battle on. I et bloods done every 6 months, try and walk half hour every day, eat as healthy as I can, avoid stress and the sun and rest when I must. It's a whole package now....

  • Thanks for the replies. Now I'm off the meloxicam (which my rheumi liked for its anti- inflamatory properties) I won't need the omeprazole much longer. Looks like I'll have to be patient with the hydroxy - patience is not my strong point, but lupus is teaching me this! I am, at the moment, getting out to walk 20-30 mins a day, as I have a dog, but with winter coming on the reynauds will make it harder. I have celtic skin, so have always avoided the sun. Nothing to change there. I still have a fair amount of genetic flexibility and am trying to do a few of the simpler old ballet barre exercises to keep some muscle mass as I'm now officially hovering on the seriously underweight point. This forum is great for all its help.

  • Thanks for the warning. I get 6 monthly eye checks as routine, but will certainly tell my eye doc

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