Hi All you lovely people. I was wondering if anyone can help me. I have only been diagnosed with lupus about 18 months but the more I learn the more I feel I have had it years. It definitely went into overload when I caught covid early on in the pandemic and well... you can guess the rest.
Anyway, I am coming down of yet another flare. The wounds on my skin have cleared with the increase in steroids but my joints are still painful, I am shattered and my hair is now falling out. The prednisolone doesn't seemed to have helped the joint pains like before and my lupus markers and white cells are all still raised. Anyway sorry rambling again.... my consultant wants to start me on azathioprine. Having done a bit of research I can't say I'm looking forward to it due to the possible side effects. Does anyone have any experience with this medicine? The alternative was methotrexate but due to my breathlessness which is still evident 2+ years after.covid he was reluctant to use that. Has anyone tried either and what should I be aware of or worried about? Moreover does it work?
I am also on 7.5mg of prednisolone reducing to my baseline amount of 5mg (can't get lower) and 400mg hydroxychloroquine
Sorry to ramble but just can't seem to decide what I should do. I feel so rubbish at the moment. If anyone has used the azathioprine did it help.
Thank you in advance. And I hope you all have a good sleep and a day that makes you smile 😃 x
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If your symptoms aren't controled, usually you are put on immunosuppressants before lowering prednisone. Why does your doc want you to lower before introducing an immunosupressant? Im taking mycophenolate which from what i was told has a bit less side effects than AZN. I tried methotrexate too and it dint do much for me. But results are always individual. Usually you try one for several months, then if it doesn't work or you get side effects that you cannot tolerate, you switch to another until you find one that works best for you. Good luck finding your best cocktail of drugs. Hope something works for you. Also methotrexate usually works well for joints, and mycophenolate if ypu have lung involvement
Hi.i agree with Tan and can't understand why pred is being reduced before an immunosuppressant is used.im steroid dependent can't get below 7mgs ,take 400 mgs of hydroxy and have lung issues.I tried azathioprine first and it made me really poorly.after 7 weeks I started being sick and i had developed drug induced hepatitis. I then had to wait 3 months for my liver to recover.Ive now been on mycophenolate for nearly 3 years without issue bar nausea and headaches at the start and with increases.ive had 2 lung flares in the last 6 months and have had my mmf increased from 2gms a day to 3gms.prior to Nov I'd gone 2 1/2 years without any.
It's all trial and error until they find the drug combo for you which I know is hard when they take so long to work.
Your breathlessness may not necessarily be helped by meds...you may have a dysfunctional breathing pattern. Im currently having respiratory physio to help with mine.there are also different breathing techniques that can help like sniff the flower blow out the candle.have you been referred to respiratory? May be worth asking about respiratory rehab or physio.. kind regards SML xxx
Hi SML I have been referred to the respiratory team and have breathing exercises. Fingers crossed that works. Thank you for the rey and advice. Sounds like you're having a rough time too. Hope you feel better x
The exercises will help if you stick to them.breathlessness becomes less frightening when you know how to control it.ive got exercises to do in time to my steps when out walking the dogs and lying in the beach pose makes you use your diaphragm to breathe rather then your shoulder muscles. I'm ok off the mmf at the mo as I needed antibiotics for a uti and I'm now dropping steroids after lasts months flare......we've just got to keep jumping over life's hurdles haven't we. Take care xxxx
I used prednisolone and Azathioprine together. Prednisolone was reduced to a stop when they taught Azathioprine had started working fully. I think Azathioprine did not agree with me, moreover because of my chest symptoms, Azathioprine was changed to Mycophenolate and I was better on Mycophenolate. It is good that you are referred to the chest physican, very important. Exercise, however small is equally important. For me I have now been off Mycophenolate for almost 4yrs but on Hydroxychloroquine twice a day and that helps. I also take vitamin D and a food supplement and that really help with my joint pain. Good luck with everything and look after yourself. Take care. Big Hug xxxx
Hi, I was really worried about starting Azathioprine and put it off for 2 years but I have now been on it for 2.5 years and have had no issues at all apart from some nausea. It has helped quite a few of my symptoms.
Thank you that reassures me a.little. It seems that everyone has different side effects so I may have to just try and see. Thank you for replying. It's a lonely world it is.
I resisted the immunosuppressants for so long because I was worried about the side effects and that I would have non stop infections and would have to shut myself away from the real world. I haven’t been anymore ill than before and Covid and shielding aside, life has carried on pretty much as normal. I am sensible and try not to be around anyone who is ill with a cold etc.
It can be a very lonely world but there are always people on this forum to support you.
I would say give them a go and see how you get on. Good luck 😊
Hi. I ve been on Azathioprine for 9 years with a 1 year gap in the middle to see if it was playing any part in my constant UTI’s. (It wasn’t I m still battling them). I can’t tell you how much it helps me. The year I was off it was hell and made me appreciate what a difference they make. I don’t have any noticeable side effects that I can definitely attribute to medication as opposed to Lupus but would take it anyway as I m so much worse without it. It is a very individual thing but I would say it’s worth a try if you are struggling. I ve never tried methotrexate so can’t comment on that. I hope you find a combination/ balance of what will work best for you. Don’t get discouraged 😘
I've been on azathioprine for over a year or so due to being on steroids since the Dark Ages. Positive: it kind of helped me go beyond my baseline - still on them. However, I've become weaker. Don't know if it's related or not because I've been getting bouts of weakness leading up to my lupus diagnosis and it's currently being troubleshooted. I digress, sorry... Negatives: some ppl report nausea but for myself, my appetite has reduced. Again, not sure if this is due to taking a cocktail of drugs and my body is trying to adapt from nothing to 8 tablets per day.
I couldn't take methotrexate due to breathing problems and pneumonia on more than one occasion. So can't comment on that. However, you might have a lung function test and your respiratory history will also be taken into consideration before they make a decision but they tend not to prescribe this particular immunosuppressant if you have respiratory problems or even a history of it.
The other positive is that NICE guidelines require strict blood monitoring, so the prescribing regime is different to steroids and hydroxy... Can't spell it and too lazy to check via Google. Also, before prescribing, you will have a discussion with a nurse about the pros and cons plus talk about any underlying concerns about the medication. Must say, the blood monitoring does, in a round about way, suddenly urges you to learn more about the various tests from the ranges to your body as a whole, which is good. Some naturally go over my head lol.
You will have to, if you choose to take azathioprine, invest in a good sun screen as well and increase your calcium food sources.
Other than that it's not too bad and I'm no longer scared of needles. The main thing is that it will help you to hopefully taper down from steroids with more success and educate you more about the various blood tests. Again, for me and like everyone else, it's been a very bumpy ride (steroid tapering).
Hi Amakura. Thank you for the reply. It was really helpful. I have a history of sepsis caused by pneumonia and also covid related Lyng conditions so maybe methotrexate isn't for me. My liver test came back OK so expect to start azathioprine this week. Researching the side effects but would love to reduce the steroids.
Thanks for the advice re extra sun screen. I don't usually go out as always suffered with the sun and feel like it's burning through me after about a minute.
I read a post (posted via the Lupus UK administrators) about sunscreen on prescription, which I wasn't aware of. So it might be useful to enquire about that during your Azathioprine consultation as well.
Good luck and one day, we will all be free from steroids' tight grip but in the meantime, treasure the valuable support it is currently providing your body. You'll get there sooner or later - one way or another!
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