Hi everyone, Im Paul, 44, diagnosed SLE in november, bit of a shock, always been fit active and busy, but stressfull situations at work have taken their toll i think and after several periods of bad muscle and joint pain and feeling wrecked, went to see a GP who refered me to a Rheumi who made a diagnosis.
Never heard of lupus, so when i went home and looked it up i must have stared at the screen blankly for 2 hours, reading the same page over and over.
Anyway, rheumi decided to put me on hydroxy, explaining that this would over time help to aleviate my joint pain by allowing the body to produce less of the "fluids" that lubricate the joints, of which im currently producing too much.
I found naproxn was a big help day to day but he told me this was not a good long term solution.
After 2 months on hydroxy i had to half my dose down to 200mg, as i was constantly feeling sick and unwell (christmas day was a bad day, after watching my 10 y/o son open his presents, had to go back to bed as couldnt funtion). Then a couple of weeks after this i stopped altogether. I wasnt sure if i felt bad because of Lupus or the meds,but soon after stopping i began to feel less ill and havent taken hydroxy since. Dont know if i gave it long enough but couldnt carry on with them.
Been back to see my rheumi again 2 weeks back and he now wants me on methatrexate as he says i have a high level of protein in my urine and he is concerned about kidney function..
I feel pretty good in myself now and am worried about this drug and its side effects and the intrusion of regular blood tests and other jabs to back it up. I manage my pain with occasional naproxyn (no more than 1 or 2 a week). I want to get my protein levels sorted but worry that i didnt give the hydroxy a long enough go and that methatrexate may be too much to take on.
Does anyone have experience of both, is it the drugs or the Lupus making me feel ill? I have a lot of questions i guess.
Thanks for listening to my inner ramblings.
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pfoz88
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Im also having trouble with hydrox which ive only been taking for 11days as i was diagnosed two weeks ago, its made me very crampy with servere stomach pain which was so bad i couldnt eat and lost 4lb in a week. it also made my chest feel very asmatha like and caused serious acid reflux which has made my swallowing sluggish. all this in 1 week. it frightened me so much i stopped taking it 3 days ago and i do feel better but my rhumy nurse is concerned as i do need medication so i ask myself what can i have as i thought hydrox was mild. somehow i think we are going to suffer side effects no matter what we take.(it is depressing) good luck !
naproxn can damage you kidneys long term and if they think there is lupus damage already then this will be why they arent keen for you to take then. all NSAID non steroidal anti- niflamitory drugs, are processed washed out the body buy the kidney other drugs by the liver hence there concern,
there are similar drugs to the hydrochloquine processed by the liver mepacrine being one might be worth chatting to you rheumy as to is there an alternative,
hope this helps best of luck
methotrexate is often well tolerated i had to have mutiple attempts of suck it and see to find the meds to suit me frustarting i know but everone is an individual. and if you potentially have kidney disease then you may need it. you can also get anti nausea meds from you GP i found them very helpful. yeh have offten wondered which is worse the drug or the disease.
Hi Paul, had methotraxate!!! Yuk, as a person who has had LUPUS since 1999, My body has rejected most of the drugs given. Now I take as little as possible, just my anti rejection drugs for the kidney transplant, thanks to lupus!! steriods 5mg of prednisolne, Alpha calcidol 5mg, asperin and have oxy norm for the really bad days usually 3/4 out of 7. I meditate, gentle exercise and rest when my body tells me to. My reaction/side effects to methotrexate included itching, sickness, lethergy and my breathing was hard. Every wonderul lupus sufferer one different, every drug effects people in different ways. Lupus is very unpredicable and so are peoples reactions. Visit our site beatthebutterfly.com, watch the vids, read the blogs, comment. e mail me if you want a chat. Take one day at a time.
regardless of lupus YOU ARE WONDERFUL AND UNIQUE, try not to let it rule you....... I konw your journey has only just started, but it does get easier.
Hi Paul,
It does take time to find the right meds for you, I am on mycophenolate mofetil which is an immunosuppresant and it has worked wonders for me. I tried so many meds with varying side effects but for now I am ok.I remember when I was first diagnosed and feeling very scared and alone, I coped by finding out as much as possible about lupus and being pro-active and assertive with my Docs, some don't like it but tough. The lupus experience is so different for everybody so hang in there and things will improve. Be kind to yourself, rest when you need to. The biggest positive for me about lupus has been the fantastic people I have met (patients and Docs) who have supported me emotionally, and when I have a bad day there is always cake!!
Always been a big fan of cake, so im well aware of its healing properties. I guess the main issue for me is im the main bread winner in the house and need to get the balance right with meds, work and rest. At the minute i seem to be working day and night but i know this is not helping me.
As difficult as it is you need to slow down with work, you already know that I think. I was the breadwinner for my family and pushed myself so hard I ended up being of sick for 6 months. I had to learn to listen to my body and rest when needed. Are your employers sympathetic, maybe they would let you cut down on your hours for a time? (just a thought.). Lupus can be very tough, I so hope that your Docs can sort you out. Off for a vanilla slice now lol Take care
Hi Paul my 14 yr old son has been on hydroxy and azathioprine and high doses of steroids since being diagnosed last Sept . He was a fit and healthy lad and struggles too with the uncertainty of is it the meds making him feel so crap everyday . He has fortnightly bloods which are mainly in range and his rhemotologist say they think his flare up has settled ( he had over a litre of fluid drained from round his heart caused by lupus) . He is currently having his steroids reduced every other week which comes with awful side effects too . I think it is going to be a while before we too get the answer of whether he will start to feel ok when just on hydroxy and azathioprine. All I would say is it is a rough ride which u have to do as without treatment lupus can be unpredictable . Use groups like this to get others experiences but remember it is a very individual illness . We haven't found many male perspectives either so that can be difficult too ... Just take a day at a time and just deal with what that day throws at you ..x
Im trying to be more aware and look after me a little more, have noticed a few people saying they think ive lost weight or look thinner, (didnt really need to, was 14st now 13, im 6ft 2) this has worried me a bit. Did 2 custard tarts in after tea last night and all has been good since
Touch wood joint pain has been good for the past 2 months ish, but the kidney function thing is a big concern.
hi paul, im sure ur heads reeling from all the advise and warnings, i was the same and 2 years later am probably still the same , like most ppl on here i truley believe thats the meds are taylored to suit ur needs, when i was diagnosed in feb 2010 i was 41 and like u very active have always been a working loan parent with a carreer and my son has special needs, ive suffered with various illness for over 12 years . Well i ll get to the point i am on 120 meds a week this is my choice if i do not take them then i couldnt even get out of bed thats mentally and phyiscally, metho and hydoxy are 2 of them, like you i researched and made my self flare up with worry but sat there with a sheet of paper and i literally weighted up the odds and ive been on both for 2 years now and yes i have 2 take this drug or that drug to prevent sickness/heartburn/integestion and so on but for me to have some sort of "norm" life with my side i choose this hope this helps :))
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Take care 
Advice on Mycophenolate pls
Looking for a diagnosis.
Reduction in hydroxy = return of symptoms?
Advice needed: Going back to NHS after going private.
Help with dx
