Hydroxy/quinoric

[Mandypandy1969]

Been on these for about 6 weeks now. Feeling no benefit at all. 3 months seems an age away as I was told it could take up to 3 months to feel any benefit. I have had to go to the job centre today aswell as my e.s.a. Has been stopped. Cannot believe it as I didn't have this condition diagnosed until April hence I was already on e.s.a. For my bipolar. So why if I have another condition, has it been stopped. In the process of writing a mandatory appeal to d.w.p. But job centre chap was brilliant with me. No pressure put on me at all. He listened and has not put me in a stressful situation which makes lupus worse. I was so stressed before the appointment and pleasantly surprised today. He has even offered to go through my letter of appeal, scan it and send it to d.w.p. Attitudes certainly seem to have changed which is good for us.

[Lupiknits]

I'm very touched by the help the DWP chap gave you, and hope you get a good result from the appeal x

Edited to add, please keep on with the hydroxy, no matter how frustratingly long it seems to take to help. It took a long time for me, but did make a difference.

[Mandypandy1969 in reply to Lupiknits]

it was the job centre not d.w.p. lol. yes, I was told it would take a long time but I'm so much discomfort at the moment hence having to get medication to help as naproxen a waste of time. x

[Johnnyb10]

Mandy,

I have been on hydroxy since 2011 and it has kept me stable so it does work I feel, although everyone with lupus is different so can have different impacts. I would give it some time and then discuss how you feel with rheumatologist at next appointment and he can decide if treatment needs to be altered. Good luck, all the best

Johnny B

[Mandypandy1969 in reply to Johnnyb10]

thanks Johnny. I do realise how long it takes but the constant stiffness, aching all over is taking its toll along with the severe fatigue. naproxen and paracetamol not helping anymore. doc has put me on codeine with paracetamol instead. been put on 15mg 4 x a day. no change as I thought they would work straightaway. I can up it to 30mg 4 times a day which I will try tomorrow if no different by the end of today.

[Johnnyb10]

I started on a steroid which was gradually reduced over a few months, this controlled the condition and once under control I then went on Hydroxy which I have been on ever since. I started out with severe fatigue, temperatures everyday for a couple of months but it was the sterioid that put me straight and then the hydroxy maintained that position Johnny

[Mandypandy1969 in reply to Johnnyb10]

when I was first diagnosed I was put on prednisolone. I felt like a new woman. i was given 20 mg for one week tapering down 5ng a week to nothing for just 1 month. my next appointment I was given a steroid injection which didn't work. rang and spoke to rheumy nurse and put back on steroids like before for 1 month. I didn't get the same relief. I am in a right mess now. naproxen and paracetamol don't touch me. got given codeine 15mg 4 times a day yesterday. no difference today. Will double the dose tomorrow which he said I could take 1 or 2 4 times a day along with paracetamol. fighting a losing battle. to top it all I have been stopped e.s.a. and been forced to go into jobseekers. I am in no fit state to work but luckily i have a work coach who has been supportive as of yesterday. I am writing a mandatory appeal at the moment. I was claiming e.s.a. before I was diagnosed with lupus for bipolar. can't believe it has been stopped with 0 points awarded on my assessment and this condition has made things 10 x worse as I have highs and lows with bipolar.

[Johnnyb10]

I hope it improves for you, keep in touch on this site as it would be good to hear how you are progressing

Take care Johnny