Curious!

Hi everybody

I would be very interested to hear which medi/s is or has been working for YOU?

What improvement did it bring?

Hope you can all enjoy a reasonable evening.

Greetings

x

[margareth8537]

You seem to have hit a quiet patch with no one answering, so here goes.

I have been on 400 mg. hydroxychloriquine for about 10 years now. First tried it and hated it, gave up. Then another consultant told be it took about three months for it to have much effect but it was worth persevering. He gave me a couple of steroid injections to get me through that, and one day it kicked in. I still have some fairly extensive flares, but prefer to use 5-10 mg. prednisalone, rather than try something else. Have had breast cancer, and the chemotherapy for that actually helped the lupus, although it was much worse when I was going through radiotherapy. Would not recommend that though!

I have been managing to lose weight this year and that is helping my general health.

Anyway, Ursi, hope some others get in touch.

Best wishes for 2013

Margaret x

[roobarb]

Hi ursi. How's is your foot, are you in plaster? It must be hard getting about in the snow. We've had severe frost for few days in the UK, but a bit warmer again now. I'm hoping we get some snow here, even though it is a nightmare to get about in. But it looks so pretty & lifts my spirits by reminding me of all the fun we used to have sledging when I was a child growing up on the North Wales border. Even though my hands used to turn blue & go totally numb, I didn't know what Raynauds was back then!

Anyway, to answer your question, the only thing that's worked for me so far are steroids. I seem to go up & down between 5-10 mg depending on how things are. Plaquenil only ever helped with my dry eyes, but had no effect on fatigue or joint pain. Azathioprine helped with fatigue & SCLE rashes, but as the dose was increased I had a bad reaction to it of severe abdo pain & had to stop. I also had the same reaction with Mycofenolate. I am wondering whether to ask my rheumatologist if it's worth trying the liquid version of azathioprine to see I react better with that. I keep meaning to post a question to see if anyone else has tried this, but haven't got around to it yet.

What are your experiences with meds for lupus?

Best wishes from Cheshire. X

[Hidden in reply to roobarb]

Hi roobarb. My foot pain comes and goes, just like everything else Seing the surgeon who did my back op tomorrow and will ask him sbout it. Not plastered or anything else cos it's the middle toe.

Not been out except for docs and hospitals and the occasional shop when my friend would always take me in the car for 3 months now. Feeling like a hermit!

The snow has now nearly all gone. Where did you grow up? Once lived in north wales (little switzerland for me)

Started on 50mg steroids then 30 plus Imurek which had to be stopped (itching). Then changed to Plaquenil which didnt agree and stopped after 1 week.Now just 20steroids. Waiting 2 see what hospital has 2 say friday.

All the best, you can always pm me!

xx

[chrisj]

I've been on plaquenil since 2005 and it works for me, seems to have things under control. The chemist sent quinoric a couple of weeks ago which gave me side effects of stomach pain, and diahorrea. I had to call my gp and she made sure plaquenil was on my repeat prescription, so all is well again.

I've found since treatment that I dont suffer the cold so much, my circulation is better. I take ramapril for that but I'm sure the SLE drugs helped as well, that would be my most noticable improvement

I use painkillers too but they're for osteoarthritis and sciatica which are separate issues.

[Purpletop]

It is probably quiet on the forum because everyone is getting ready for Xmas (tree, cards, presies shopping and wrapping, cooking, cleaning, etc).

I'm only 5 months after diagnosis, so not that much trend data from me. I've started with steroids and I felt great at 7.5mg dose but I've been taken off those slowly but Plaquenil kicked in about 2 months from starting to take it and has improved my mental focus and the fatigue and the joint pain. I still have chest pains and shortness of breath for no apparent reason and also numbness in hands and feet that I'm still investigating because neither the steroids nor Plaquenil seem to help resolve those. So I haven't yet arrived to the most optimum combination of medication but working towards it.

[Sher78]

No longer take ANYTHING 2 'treat' my conditions. Have tried near enough everything & 4 me the side effects have always outweighed the benefits so now I just pain manage instead, which is not the ideal situation, as in the long term, my tolerance 2 pain relief will b mental but this is MY CHOICE & is what works best 4 me at present. Who knows, down the line I may b begging 2 go back on Hydroxy etc but 4 now this is what I find works best 4 me & my body x

[Hidden]

thanks guys,very informative.