Feeling relieved!

Just wanted to share my news that after seeing my private specialist he has prescribed me Hydroxy.

I have mild lupus thankfully.I feel very lucky after reading some of your stories on this site.I feel bad enough sometimes and I am a mild case.

I am relieved because I was left waiting from April till this December to see my NHS doctor, who was going to prescribe Hydroxy but wanted to check my kidneys first.Fair enough, but I was feeling a bit neglected.

So I have been on Hydroxy three days all is well so far!I just want to get on with my life without having to spend the weekend in bed charging my batteries for the next week!I also have a terrible memory and forget my words etc.I am hoping the Hydroxy might help with this?

Anyway It was interesting reading everyones experience on the medication and I am just glad I can at last be put on it to see if it helps.

Glad to have this great site!Keep smiling all you fellow lupies!!!!

11 Replies

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  • I really hope hydroxy helps you.I have been on hydroxy for just over a week.Not feeling to clever at the moment but,I must persevere.I hope hydroxy works for you.Good luck.

  • Dear Blinkey

    Sorry to hear you are not too good at the moment.I'm sure it takes months to get into your system so be patient.

    I didn't get up till 2.00clock this afternoon I had so much to do but another day tomorrow I suppose!

    Take care Karenx

  • Hi! I have been on Hydroxy for 13 years and it has really helped me. It has really stabilised my discoid lupus symptoms and made it possible to have a family and work. Dont get me wrong, there are bad days and I get very tired at times when I overdo things. But the majority of the time, I feel great! So good luck and keep in touch to let us know how you are getting on.! :)

  • Hi Dee that's great to hear!I must say after reading mixed opinions I was a bit worried about taking it.To be honest anything is worth a try!

    I do hope this will be a turning point now when it gets into my system I have high hopes I do hope I am not disappointed!

    I have had a busy week and slept till 2.oclock this afternoon !I was going t out this evening so I had to charge up my batteries.My house is like a bomb has hit it but I can't worry about that.It 's just so great knowing that there are other folk out there and you are not alone!Thanks for your kind comment .Take care of yourself. Karen

  • Hi, Im on hydroxy and I couldn't be without it now, my pain is under control although I still get flare ups and bad days it is such a relief.

    Lucy

  • Hi Lucy I'm glad to hear it is working for you! It's great to hear how it affects other folk and I know we just have to wait and see how it will affect us but I have high hopes!Anything is worth a try!

    Take care of yourself and thanks for message.KAREN

  • Good luck to you and hope you find hydroxychloroquine improves your day to day life. Personally, I can't say I have noticed whether it has made a difference or not to me and the thing is, whilst you are taking it, you don't know whether you would be worse off without it! - If you get what I mean. :0) Take care and glad you feel relieved.

    Yols

  • hI Yols I know what you mean.How long have you been on it?

    I have high hopes and am convinced it will help me!I was beginning to think I was going mad with all the stupid aches and pains and losing my memory etc.

    It is great having folk the same on this site it is comforting to know that you are not the only loopy loo!

    I do hope you find some relief somewhere along the line!

    Look after yourself and thanks for the message.Karen

  • It does take a while for it to kick in,as for losing you memory,i think we all go though that sle or not,I forget what im saying mid sentance.

    Keep well and safe.

  • Glad things going well for you!

    Have been on plaquenil for over 3 months and it really is dampening down many lupus etc symptoms

    Inspite of long waits, I did go down NHS route re diagnosis,m instead of private. It all took longer, but my rheumy seems vvvvv experienced & capable & humane, and didn't hesitate with diagnosis and treatment after taking my full history or well over 1 hour at our first appt.

    Have been wondering what would've happened if I had gone privately: eg do you get your hydroxy on an NHS prescription even though you've gone private?

    Also, what are you doing about declaring lupus to your insurers, eg car & travel insurance?

    Take care

  • Hi Barnclown sorry for delay in replying!

    I will be going back on NHS after getting a diagnosis from Private Doc.I must admit the private one agreed with NHS rheumy but he didnt actually prescribe me the tablets although he said hew was going to.

    I have started Hydroxy, and all is well-touch wood at the moment!

    I only have mild lupus do you still have to disclose to car insurance?

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