Happy Christmas everyone. If anyone is there I'm looking for some advice/to pick your brains please.
Judging by the posts I see here, I think I'm fairly lucky with my lupus symptoms and would say I have mild disease. I suffer pain and inflammation and general weakness in my hands along with overall mild fatigue. I have been diagnosed just over a year and been taking hydroxychlorquine for most of that time.
Despite early reservations, hydroxy has helped reduce the severity of my symptoms to where I am today. But also have blood issues - low platelet and neutrophils which are up and down all the time but mostly in the borderline on the bottom end of the range. I do not suffer increased infections. Other causes have been ruled out so lupus has been put as the cause for this.
I have a rheumy and a haematologist looking after me. And have had regular phone consultations this year but not physically seen my rheumy since I started on the hydroxy. She has offered me Azathioprine - to alleviate the hand symptoms further and to address the blood issues. The haematologist is happy for me to take this drug but not some of the other common options. He said it could also make the blood symptoms worse but that I would be monitored. But both say its my choice and to read the leaflets and let them know if I want to try it....... I'm not a medical professional - how do I decide?
It seems like a pretty heavy duty drug to take if I don't really need it. Plus, without having seen me physically for over a year. Would I be better off waiting until/if things get worse? Am I doing my self harm by not taking it either in respect of my hands or the blood issues?
I find it really difficult that doctors do not give you their opinion any more. I appreciate the free choice - but it is difficult to know what to do for the best. I do my research but I am not a doctor. Can anyone offer any advice please? I have another consultation in a week or so am trying to make a decision before then.
Thank You.
tom part
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SashaT64
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Hi.the drug is what I call one of the big guns it is a powerful drug.these drugs are chemotherapy drugs used in low doses for lupus RA etc.like you i started on hydroxchloroquine then i was put on azathioprine. I managed 7 weeks.then i started being sick about 2 hrs after I'd taken it .....i had developed drug induced hepatitis. It was stopped straight away and I then had to wait 3 months for my liver to recover before starting something else.im now on another big gun mycophenolate.so it didnt work for me.ive had few issues with mmf usual initial side effects.it will mean regular bloods mine on mmf are every month. One thing to consider about taking meds for lupus is it's also about the long term.if your symptoms gets worse before you opt for treatment damage could done ...kidneys,lungs ,heart,nerves maybe. Its also about preserving what you've got now and preventing permanent damage. My lupus went undiagnosed and untreated for 5 years...its taken 2 years and alot of medication to get it under control. Only you can make the decision but for me it was the right one xx
I've taken azathioprine for maybe 15 years or more. Everything else disagreed with me - sulfasalazine, methotrexate, leflunomide, mycophenolate - so this was the next option.I couldn't tolerate 150mg a day as it lowered my white cell severely. 100mg a day was tolerable, but over the years I've managed to reduce to 50mg a day. I take it in conjunction with hydroxychloroquine and I consider myself to be well controlled.
You will have frequent blood tests so problems can be detected quickly. I started off with blood tests every 2 weeks and pre covid I was having them every 6-8 weeks; I have a very clued up GP so feel confident that issues will be detected. I'm now having blood tests every 12 weeks to reduce my potential exposure to covid at the surgery.
The bottom line is we all respond differently to treatment and only you can decide if you want to try it. As Spanielmadlady says untreated SLE can be worse for you. In my experience I am happy to try new treatments because I have confidence in my Consultant and GP.
I have taken Azathioprine for my lupus. I thought it was working well but come to find out, it caused liver toxicity. Reaction was masked by steroids so when I tried it again, I had a severe reaction.
With that being said, it was the only immunosuppressant that worked for me. Gave me energy and made a lot of my symptoms better. Sucks I can’t take it.
It did tank my cell counts but mostly my platelets. I sometimes wonder if less platelets thinned my blood and that’s what actually made me feel better.
Any medication is about weighing risks vs benefits. Azathioprine is like chemo-lite but well tolerated by most. Make sure they check TPMT levels before starting. If your levels are low, there is a higher chance for toxicity.
I always felt like I would never resort to taking these types of heavy immunosuppressant medications. But when they return any amount of functionality, I think it’s worth a try. That’s just my opinion. You could always ask for a second opinion just for management plan.
Hope you find something that provides relief. Happy Holidays and Happy New Year!
Azathioprine made me ill from the get-go (I lasted about 10 days). Have they tested to see if you have enough of an enzyme called TPMP (I think)? You need this to metabolise the azathioprine and if you don't have enough then it can be dangerous. Mine was borderline - the rheumatologist told me this and said if I had side effects I should just stop.
That said, while I would think carefully about whether to take such a heavy duty drug, it may be that she has prescribed it to stop things getting worse, as the lupus is progressing. (I'm sorry to even be suggesting this - but I had lupus for a long time that was more or less controlled by 'lesser' drugs like hydroxychloroquine - and then suddenly it wasn't.) I have often, in the past, baulked at taking what I see as evil drugs that "they" are foisting on me - only to find out later that said drugs actually do make me feel better and improve the quality of my life.
Maybe you just need to try it and see? You can always stop taking it if it is not helping.
Hi I take 200mg of hydroxychloroquine twice daily for the last five years it made me feel sick for about an hour for the first three weeks but after that I’ve been fine with only very mild flare ups, due to extreme stress , I would totally recommend to help with skin rash 🙋♀️
Thanks all for the replies. I have got to have the enzyme blood test if I decide to go ahead. They have also done some scans to make sure everything else is all ok.
I currently take 200g hydroxy 4 x week, and 400g 3 x week.
Writing this post and reading your replies has helped crystallise things in my mind. I’m guess I’m scared about taking this drug, and the longer term of taking it if this disease gets worse. You’ve helped me put together some more questions for the doctors when I speak to them next.
Prunes - you also hit the nail on the head with your comment about trusting your doctors. I don’t think I’m in that place yet , not with the rheumy anyway. Doing this all by phone this past year doesn’t help either.
Hi SashaT64. I was started on azathioprine in July this year to help with stubborn pericarditits that is refusing to clear up. I'm on 50mg a day which is the lowest dose . Apart from a sore tummy on the first few days I've had no problems with it so far. Had bloods done every 4 weeks for the first few months but now it's every 3 months. As others have said I think it depends on the individual as some have had terrible experiences with it. Like you I hated the thought of adding more drugs to the mix but something had to be done as I wasn't doing well. Good luck with your decision and hopefully if you decide to go for it, your experience will be positive like mine has been so far. X
Salzer, did it clear up your pericarditis? I'm in an almost identical situation to you. I've had pericarditis since March which is refusing to clear up. My consultant prescribed Azathioprine a few weeks ago, 75mg a day, but told me to wait until after Christmas to start taking it, as it often makes you feel sick when you first start taking it. I've not started taking it yet as I've now got pneumonia for the second time this year and can't face feeling nauseous on top of everything else. Although I am desperate to get everything under control. What else do you take with it? I'm on 400mg Hydroxy per day too and 7.5mg prednisolone. I'm a tad confused about the pred though as my consultant mentioned getting me off the pred as it was making me gain weight but then didn't actually tell me to stop taking it.
Prednisolone is used to keep inflammation under control until the azathioprine kicks in so you wont stop it yet as the azathioprine will take at least 8 weeks to start to work and 6 months to gain full effect.ive been on prednisone for 7 years. I also take hydroxchloroquine and mmf .
Hi lupusnewbieIm sorry to read your struggling with such persistent pericarditis. Its a nightmare that i know only too well. Im wondering does your rheumy know about colchicine?. Have you tried it?. Im on it permanently as its a strong anti- inflammatory that is brill for pericarditis. Its used as a way to diagnose it because if it helps then its definitely pericarditis. It turned my life around!.
I see your also on steroids 7.5mg ?. Sometimes the dose needs to go up hiigher to really knock it on the head!. Has your rheumy mentioned this?. They can give you a steroid taper to sort it out better. Maybe worth asking. Also the nsaid celebrex a cox2 anti- inflammatory can also help pericarditis.
I hope you'll soon be feeling a lot better. Keep safe Xx
I'm on 7.5mg of prednisolone too, so to be honest I'm not sure how much the azathioprine has done and what is the steroid effect. But with the combination the pericarditits is much improved but not gone. And many other symptoms have really improved too so overall doing much better. Also taking hydroxy. I was taking colchicine for a while too, prescribed by cardiology but rheumatology took me off it.
I think the plan for me is to gradually decrease steroids too and increase Aza but have to see cardiology before that happens but they are so backed up because of covid that I'm going to be waiting a while for that.
That's rotten that you have pneumonia again. I can see why you don't want to risk nausea on top of that. I make sure to take the Aza with dinner and that has prevented any tummy problems for me, it only took a couple of days to get used to it. When I started, I figured that it takes so long to start working that I wanted to start sooner rather than later to find out if it worked for me. It's a difficult call to make isn't it? X
Thank you. You have inspired me to start the Aza sooner rather than later. I think I'll collect the prescription on Tuesday when the chemists re-open and start it then. I'm just so fed up of feeling crap all the time. The sooner I can see if it works the better and I'm not back at work till the 5th Jan so now is as good a time as any to go through a nauseous spell if I'm going to have to. I've also been on colchicine for the last 5 months but it didn't improve things at all so the rheumatologist took me off it.
Hi there. I think symptoms can vary from person to person. I had chest pain going into my shoulder and neck, a weird cough, severe dizziness, palpitations and generally felt very ill as well as other flare symptoms that are typical for me. I was admitted to hospital and finally diagnosed when an echocardiogram showed an effusion. I think symptoms can be milder but I felt really very unwell and was pretty much bed bound for a couple of weeks before diagnosis. The tests they did included ECG, chest xray, echocardiogram, blood tests including for inflammation and to rule out blood clots and heart attack I think. Hope this helps. S
I have never taken azathioprine but have had other immunosuppressive. I find a useful question to my rheumy is something along the lines of: if you were in my position, what would you do knowing all that you do? I had to stop one drug because of nerve damage but it had worked so my lupus has never been as severe again. For me it was worth it and yes I do trust the doctor involved. He got me diagnosed and sorted after 10byears of messing about. Wishing you all the best.
Hi, I have RA with a Lupus overlap and was diagnosed 13 years ago but the Lupus overlap has grown stronger and this was noticed in 2019 when I ended up in hospital with a pulmonary embolism due to my blood being too sticky. At the time I was taking sulphasalazine and Hydroxychloroquine sulphate which was not controlling the diseases. Back then my crp levels were around 30, this is an inflammation marker on a blood test that shouldn't be more than 5! Since starting the azathioprine last year, also still taking Hydroxychloroquine, my inflammation seems to have reduced. I am a lot less achy and my crp has dropped to 8, still over but much better!
My suggestion would be to really think about controlling the disease as it can get away with you and build up to a hospital stay which would be awful right now!
I started taking azathioprine 11 years ago after a really bad flare and overuse of painkillers (antiinflamatories and steroids for years). It changed my life for the better. I was able to come off the steroids for good. I started on 75mg and went up yo 125mg because of a recent bad flare but that was my first flare in 10 years! I recently tried to reduce the dose myself to 50mg because I was worried about the long term side effects but ended up in a bad flare which proved to me that the drug was keeping things under control. I had to start hydroxy too and I'm doing very well on 100mg daily of both. So my point is I believe these drugs really do help some of it takes a while. In the beginning it upset my tummy but I found taking at night got that sorted. I hope you find a solution that works for you.
Hello Sasha,Happy New Year, you have taken this drug for a while and it sounds like you finally found some comfort.
I have been taking Azathioprine 50 mgs for almost 3 months and haven't felt any better, I actually feel worse especially at night when sleeping. I have started feeling my feet and hands numb when sleeping and it wakes me up, is that a side effect from the drug?
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