What are people's experiences of being on methotrexate as a steroid sparing med? it is the only thing my cons has said he'll consider for me now though he has said there are considerable potential side-effects - liver problems and alveolitis. He said for me not to make a decision about it straight away but to read up about it first if I wanted to. There seems to be very little info around about it's use in asthma - more cancer, psoriasis and arthritis - so i wondering what experience anyone here had of it.
Becky a main side effect and a reason to take your time with this decision for someone your age is fertility, it affects this one by damaging your overies upto 60% and two effects the feutus development in that you shouldnt concieve while on it and it will be very hard if ever off it. the side effects are much the same for whatever condition given although worse for cancer patients as they get amuch stronger dose. I had it for 3 yrs and as a steroid sparer itdoidnt change my pred dose but it did make me more stable for a while, then my liver started to pack in and my suceptability to nasty infections increased. i was therefore stopped, my liver recovered a bit then put on azathioprine which is similar but not doing anything as yet other then affecting my liver.
the no so bad but annoying side effects i had was the day after taking it as its once a week it felt fluey and generally unwell and my hair came out quite a bit but that was more aftera while.
Hope this help
love and prayers
andrea xxxxxxxx
Hi Becky
I have been on methotrexate twice, once in about 1999 for a few months and again since May this year. I was started on it to try and get my pred down cos I developed steroid-induced diabetes.
The first time round I didn't notice any major side effects except a bit of hair loss, but my liver function tests started to go off so I had to stop it. It did seem to help me get my steroids down when I was on it.
This time round I've noticed some nausea and flu-like symptoms the day after taking it but my LFTs have been fine. I did at one point manage to get my pred down to 17.5 as well. However I have had ventilator-associated pneumonia twice in the last four months so they are questioning whether I can carry on with the methotrexate or whether it's causing a dangerous degree of immunosuppression.
The more serious side effects like the lung and liver fibrosis tend to be related to the cumulative dose that you've taken, so it doesn't happen right away. They monitor your LFTs and lung function tests to pick up on it early.
I would say go for it and try it if you want to; yes, the side effects are *potentially* nasty but some people get no side effects at all, and long term pred is hardly a barrel of laughs side effects wise! There is not a lot of evidence for its use in asthma, as you have discovered, but there is a little evidence for methotrexate and also ciclosporin, less so for azathioprine although a lot of consultants like it and have considerable experience using it.
hope you have some luck with it
take care
Em H
hi becky,ive been on methotrexate twice to,once 4 year ago,but was hospitalised twice in a few weeks with infection,so they stoped it,and again 18mnths ago,i think it helps me,im been on 15mg for last 8 months,and have got my pred down to 10mg but relapse soon after,havent had any side effects,but was in hosp 4 weeks ago,cos white cell count went high,but no infection,it now come down and carrying on as normal,hope it helps love mandy
Hi Becky,
Is this any help I cmae across it by accident
Methotrexate is a drug that is sometimes used in the treatment of cancers. It works by dampening down the body's immune system (the complex system of blood and other cells that fight infections and keep us healthy). Although asthma is not the same as cancer, people with asthma have an over active immune reaction to allergen triggers causing inflammation and irritation within the airways. Methotrexate is sometimes used for the treatment of very severe asthma (Step 5 on the asthma treatment ladder) as a way of trying to reduce the amount of steroid tablets these people have to take. Because methotrexate affects the body's immune system people taking this drug for asthma control have to be seen in the hospital out-patient clinic regularly (usually at least once a month) and also have to have regular blood tests (once or twice a month) to check bone marrow, kidney and liver function.
Wanda
Wanda, a side issue on this what is this ledder that you mention and how many steps are there?
Methotrexate sounds like a vicious drug I am glad I don't have to decide if I should have it or not.
Bex
The British Thoracic Society's treatment ladder
It has 5 stages 1-5, 1 been the mildest to 5 been the severeist.
Sadly Bex there some people are ""forced"" by severity of their illness who have to make such decisions such as the one Becky has got to make.
Wanda
Nobody can be forced into a treatment however severe they are? drugs are usd on guidelines that we dont all fit into, asthma is such a personal problem that even the top docs only use them as brief guidelines and some types of asthma such as the true brittles out their like Bex ( of which there is only about 500, as this term has been over used by docs who dont know the true symtoms or cant find anything else to call it) dont fit into these guidelines. The step ladder approch is onlt benefitical to those whose lung disease increases and decreases in severity, there are people who are above step 5 but that doesnt mean to say there arent alternative treatments to try? as said before different things worl for different people in different ways, but if your asthma is so bad that its affecting your life 24/7 then wouldnt a few side effect and a better life be a better option?
Andrea xxx
Yes andrea, the chance at a better life would be great, but the decision to take methotrexate isn't all that simple with the question of just a few side effects. The potential side effects of things like alveolitis (fibrosing of the lungs) are irreversible and if I became subject to it would have a lower quality of life than I do now. It could even lead to the only option being a transplant. The decision I have to make is whether or not I risk things like this (as well as other possible side effects that have been mentioned) without any guarantee that the drug will help in the first place ... though I'm guessing that if it wasn't working then it would be stopped hopefully before big side effects took hold. However, what if methotrexate helps to some extent - i.e. enough to warrant it's continuation - but then results in liver damage, infertility, lung fibrosis etc? It feels like a massive decision and I want to get as much info as possible about it and discuss it at length with my cons before I make a decision.
Sorry if my message came across wrong,
What I was trying to getting across was not that people are forced to take certain drugs because of the severity of their illness but rather that some people are forced because of the severity of their illness to make such decisions as to wheather to take drugs such as methotrexate.
Sorry if I have opened a can of worms there.
Becky
You are right it is a big decision and one that does need careful thought. I went through the debate with my cons over azithropin(sp) similar drug but in the end decided against it, even though for me it was only option left at the time as I cant have any form of steroids. The main reason the cons and I came to the decision after lots of discussion was that due the infections I already had and continued to suffer with, the risk of making that worse was greater than the benefit of helping the asthma. I also went through similar debate over theophyllin as having tried it the side effects for me at even a very very low dose were so great that the benefit was not worth the side effects as they were as disabling as the asthma so would not have improved my quality of life at all. Asthma as any illness is so indiviual to the person.
Your consultant seems very knowlegable and all you can do is listen to his opinion as he sees and treats you regulary, read the info we can give then decide. Dont forget you have been through a tough time so give yourself time to deal with recent events before coming to a decision which can always be reversed either way.
Rushing where angels fear to tread but it is worth remembeing these are possible side effects not definate ones. However, I can fully understand Becky being wary, to be able to head off for a UK camping tour one year and then maybe cos of the drugs used not the next means they could have a huge impact on her quality of life. I know I miss being able to scramble around favourite beauty spots Becky will know cos she visited becky falls how lovely it is but it is beyond me now, i would hate it if my treatment prevented me from doing those thing it is bad enough when it is the illness. It is about finding the right balence. Maybe the time is not right for Becky and I think she is right to seek an appt with her cons to really thrash it out.
Bex
Yep backs and all its so true, your docs the one best talking too, we can share our experiences but as weve all said were all different, your doc and yourself are the only ones who know you best. On alittle up though the docs have a duty of care to tell you all the pros and cons to cover themselves but the chances of getting the more severe side effects are slight but nether the less yhere to be taken into account. Dont rush Becky look at it asyouve coped this far with major splats so like said take your time, recover from this first and get some time set asid with your cons to discuss it in detail,maybe stat now writing a list off questions as you think of them.
Andrea xx
Becky,
I haven't read this entire thread but I read your post. I wouldn't worry about the fibrosis and transplant part of methotrexate. Your doctor wouldn't let it get that far it would be stopped before any long term damage like that was done. These are just 'possible' side affects which from what I've heard occur after you've been on the drug a good while. There are side effects with every drug we take if your doctor thought you couldn't take the side effects of a certain drug and they thought you wouldn't get much benefit from it he/she wouldn't offer it you in the first place.
tks xxxx
My son (sean) has been taking ciclosporin for 3 months now after extensive talks with Rbh. I was advised by them that ciclosporin and methotrexate are basically a very similar drug with similar possible side effects. I just wanted to say that Sean had weekly blood tests and we have recently gone to fortnightly to check ciclosporin levels, liver and kidney function and full blood count so that if any problems crop up the docs can act before there is any irreversable damage.
When I first read the possible side effects I was very worried and now if Sean looks a bit odd colour or has unexplained aches and pains I worry that its a major side effect rearing its head but fortunatly the only known effect he has had is very hairy arms and legs which he can get on high dose steriod anyway.
The first day Sean was taking this drug I felt like we had one foot over a cliff and if I had made the wrong decision I would have to live with guilt and Sean live with a worse quality of life but im relieved to say so far this isnt the case.
I had a long chat with doc at Rbh yday regarding how beneficial ciclosporin has been as Sean still has regular splats needing nebs and steriods and increased s/c but we both came to conculsion this drug was never going to be the miracle cure but if it keeps Sean out of hospital over winter thats the best we can all hope for.
Becky, this is a very difficult decision for you to make so as everyone has said take as much time as you need and ask con as many questions as you need to put mind at rest.
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