LUPUS UK
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Azathioprine

I've just been subscribed these instead of the planquil has anyone else tried these and how are you getting on. Just want to fund out if they helped and any side effects

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Hi

I am on azathioprene and hydroxy .When I started and at each dose increase of azathioprene I had awful headaches , nausea and dizzy spells for about two to three weeks. Had weekly blood tests to start and now four weekly. It hasn't made me feel great but has helped to reduce a fair bit of stiffness in joints and greatly reduced blood in my urine so definitely doing some good. I have to add SLE isn't my only condition so may help you more so.

Good luck and hope you get some relief of symptoms real soon.

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hi, I`ve been taking azathioprine for about 8 months. there have been some awful side effects. I take it coz I have a lung disease, my tongue splits I feel tired almost all the time. I am taking 150mg daily, but consultant wants me to be taking 150mg daily. but I don`t think my body can take it. again I also have other medical problems. you may find your better suited to it than I am. I do hope so.

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Hi Tanithrs I'm so sorry uve had those awful side effects I'm hoping that as im only on 25mgs per day that it won't be too bad. The things we have to go through? Wishing you all the best.

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Thank you for letting me know. I hope u continue to improve and I will update how I am getting on😊

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I had these meds, they were the first I tried after being diagnosed with SLE but they didn't agree with me, they affected my liver function, it happened quite rapidly so I had to be taken off of them. However, I was on weekly blood tests so it was quickly recognised so if you are on weekly blood tests i'm sure if there are any issues you will be notified. I felt generally unwell on them but that could have been because of the irregular liver, hopefully you will be ok.

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Thank you I will only been in them for four days so hopefully they will be ok. Keep well☺

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I take Azo and Hydroxy together and they have made a major improvement to my health.

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Both together? Ok he told me to stop the hydroxy and just take one a day of the new meds. I hope it makes a difference. Thank you ☺

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Yes I take them both together. I started on one Azo a day slowly building up to four a day.

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I was given Azathioprine to take with Hydroxy but it made me feel so bad I had to stop. They replaced it with Mycophenolate which I have been on for eight months.

I only have blood tests now one in two months. All results fine and I feel so much better . I know lots of people get on fine with Aza so give it a go. Good Luck !

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Thank you😊

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Thank you☺☺

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I was on Azathioprine but it didn't agree with me so now on Methotrexate. People react differently to different drugs so it might work really well for you. Just bear in mind if it doesn't suit you there are other options to try x

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Thank you so much glad u r ok on new drugs. Will update once I see how I'm getting on ☺

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Hi,

I am now a retired M.D. (male) (in the U.S.A.) and also have SLE (as well as discoid and CNS Lupus). I am on Plaquenil, but the overwhelming fatigue and headaches were too much to deal with. I added Cellcept (mycophenolate) and am doing considerably better......will never be 'normal'...but better. ALL Lupus patients should be on Plaquenil because it has been proven to help prevent diabetes, vasculitis flares and many other problems caused by Lupus. Cellcept is a great adjunct to plaquenil because it is a potent immunosuppressant (also used as a prednisone sparing drug).

Being a Dr., the only thing I don't like about Cellcept is that about 1% of patients develop brain cancer.........just hope I am not the 1 %. Quality of life is more important to me than the quantity of life.

I hope I have been a little informative and wish you nothing but the best.

P.S.

I didn't like azathioprine because I didn't get the relief I wanted and I couldn't deal with the side effects. I also have Sjogrens syndrome and Reynauds disease.

Please contact me if I can be of any help to you; the short synopsis of my life is really only a tidbit of the hell I have been through with Lupus.........hospitalized twice and had a TIA due to Lupus.

VADERVIPER

I will be happy to answer any question you have, please don't hesitate to contact me.

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I have been on azo for over 15 years now. I was on plaquenil but it caused sediment in my eyes so I had to stop it. I take 200mg /day azo and 1 celecoxib. Overall I am doing not too bad, but I am developing diabetes, struggling with severe menopausal heat and have constant plant fasciitis. The pain is so bad it is hard to get to sleep. if I stop the azo for 1 day I get severe migraine... in fact I have ringing in my ear constantly. I suffer from nasty head ache and neck pains and constant infections in my urine. Constant vaginosis and if I don't take my vitamine D I develop folliculitis. I have chosen to avoid steroids but it is tough having SLE, Sjögren and Raynauds. The Sjögren is the cause of my vaginosis and e coli in my urine, since I have nothing to defend myself being so dry. It also causes blapheritis and staphies to flourish in my nose. Even after taking 7 days antibiotics I am still not clear of the infections. My options are running out. Tried so many drugs and none were doing anything better than AZO. Side effects of AZO luckily were very limited. This shows how one drug helps out to one patient and not to another.

Morlobach

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Hi Moroblac thank you for your response I am so worried about possible side effects but I'm joyful that they will be minimal. Thank you keep going! Us lupies have to stick together 😁

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Hi Vaderviper thank you for your very informative response. I will definitely let you know how and if these new meds affect me. Keep well

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Hi

I was on & off Azathioprine, for about 10 years, but in the end I was taken off it as it severely affected my white blood count & my liver. I was often having to have blood tests sometimes twice a week, until they were finding it impossible to get any blood from me. I was then prescribed Plaqunil & Cyclosporine. I was on the Cyclosporine for around 5 years, until again that affected my white blood count, I was then taken of them, but still take Plaquinil & Celebrex. I don't remember any other side affects with Azathioprine other than my blood counts & so you may not be getting these headaches that everyone is talking about, especially as you are on them such a short time & everyone is different. By the time you read this you will probably be finished your course of treatment. I hope it has worked for you, we all know our own bodies & how things affect other people differently, good luck.

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I thank you for your response.. I wish you well😊

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I tried aza this time last year and it made me very sick, but my sister had it for crohns earlier this year and apart from nausea was fine with it. I am now on methotrexate which is suiting me side effect wise and no issues with bloods etc. Don't worry if the aza doesn't suit, there are other drugs out there to try and just if one causes sides effects doesn't mean that they all will. Good luck. xx

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Thank you I will update if there are any major dude effects. Keep well😁

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