Methotrexate Drug Treatment

Hi

I start this treatment on Monday and would love to hear from anyone else taking this.

I was not to well when my con was telling me about it and I now have lots of question I wished I had asked.

I see him next Dec 27th but if anyone can tell me how they have got on with this treatment please do.

I do know that I will need to have my blood's done offten and be careful around infections but I am worrying if there is side effects that if any that start early in the treatment or later.

Also I would love to hear any possitive comments about the treatment.

Thanks

Chrissi

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Hi Chrissi,

I'm sorry to hear that you have had to start methotrexate, but I hope that you will get some benefit from it.

Methotrexate is a powerful drug with anti-inflammatory and immunosuppressant properties. It is used intravenously in much much larger doses to treat some cancers and also in other inflammatory diseases such as rheumatoid arthritis. It is a drug that has been around for a while, so quite a lot is known about the potential side effects and things that need monitoring.

The aim in asthma is to use the drug at doses that are predominantly anti-inflammatory, although the immunosuppressant effects cannot be escaped entirely. By adding in an additional anti-inflammatory, the hope is that this will help with asthma control and allow the dose of prednisolone to be reduced; as we all know, high dose pred for some time can cause quite a few problems.

The starting dose is usually between 5 - 10mg once a week - this can be increased to 15 - 20mg if it is well tolerated and is not having the desired effect at a lower dose. It takes a few weeks to build up in the system but after that, many people find that they can gradually start reducing their steroids without any ill effect.

It does have some significant side effect, and some of these can be serious. The most common effect is that you may feel headachy, nauseated and have flu-like symptoms for a couple of days after the day that you take it - people who work full-time may want to take it on a Friday night so that these symptoms don't interfere with work.

The more serious side effects that have to be monitored for include severe immune suppression with low levels of the infection-fighting white cells; anaemia; liver dysfunction; kidney dysfunction; and rarely, lung fibrosis. These effects will be monitored for by very regular blood tests and you will not be allowed to be prescribed your next dose unless you have had the blood test and it is alright. You should also look out for rashes, sore throats, fever or any other signs of infection and report these to your doctor urgently. Of course, if there are any other symptoms that you are worried about, these should also be reported to your doctor. You will also probably have regular lung function tests (although you are probably likely to be having these anyway) - this will allow your consultant to assess whether the drug is working, and also to pick up very early any signs of the very rare side effect of lung fibrosis (this is not usually a problem if picked up early).

You may be prescribed folic acid to take on the days when you are not taking your methotrexate - this can help to prevent anaemia and some of the other side effects.

It is also important to note that methotrexate is well known for causing abnormalities in unborn babies, so it is essential that you do not get pregnant whilst you are on the drug. Many doctors recommend that if you require contraception, you should use two different methods whilst on this drug.

All of this probably sounds quite worrying, but although methotrexate is not a drug that is ever used lightly, the vast majority of people will have minimal or no side effects, and many people find it very useful in getting the prednisolone dose down. Of course, prednisolone itself can have very significant side effects, as I'm sure you know, so it is always a question of balancing the risks of taking the one drug against the other.

On a personal level, I have taken methotrexate on two occasions. The first time was in about 1999, when I was having great difficulty in getting my pred dose down below 25mg and was experiencing significant side effects. I took methotrexate for about 10 months, and tolerated it well, without noticing any significant side effects. It did allow me to get my pred dose down to 10mg, which was the lowest it had been for two years. I had to stop taking it after some minor changes in my liver function tests (I didn't feel unwell in any way and there was no permanent damage done). Even after stopping it, I still managed to keep my pred dose down for almost a year afterwards.

My second experience of methotrexate was not quite so favourable. I took it from May to September last year, again because of difficulties in getting my pred dose down and side effects associated with that. Unfortunately, I was ventilated twice during that time, and both times I developed ventilator-associated pneumonia, which had never happened before. My white cell count and other measures of immune function were relatively alright, but my consultant was unable to rule out the fact that methotrexate had contributed to me developing these infections, although he admitted that pneumonia is a common complication of ventilation and it could have been a coincidence. On that occasion, I also didn't really manage to get my pred down whilst on the methotrexate.

There are other drugs that are used in a similar way in asthma - the most common ones are the immunosuppressants ciclosporin and azathioprine. They have slightly different side effect profiles, although they are still powerful drugs that can cause problems and have to be monitored closely. If methotrexate doesn't suit you, though, it might be that one of these other drugs will be a possibility.

Obviously, to be started on this drug, you have been on long-term pred for some time. I hope that you are being properly monitored for the long term effects, including having your blood pressure and blood sugar checked regularly and having bone mineral density scans.

Hope this helps and that you have some luck with the drug.

Em H

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Thank you for the reply Emily

A Big thanks for the info.

You have answerd all the questions I had (for now). Yes I have been on Pred for a long time and its due to the side effects I have that they have been trying for the last 12months to get me off it with out much luck. I do work full time (ifs that what you can call it with all the time off I have with hossi apoint's etc) My Con has told me I have to take my 7.5mg of it on A Monday's as he said there will be more med staff on during the week if I have any probs .

I am sure if I do not suffer any side effects after a few weeks and I ask him if I can change it to Friday's he will let me, Thanks for that info about taking it on Fridays.

The main side effect I recall him telling me was mouth ulcers (prob cos I get them now and again and I hate them) So my fingers are crossed on that one.

I was feeling a little worried about Monday taking them and not knowing the answers to my questions but I am felling much better about taking it now.

Again thanks Emily

Chrissi

x x

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my son is on methotrexate and has been for abt 2 years now and he has to have regular bloods every month and as i result of it he as got severe lymphopenia and has to be very carefull abt catching infections but all tht said he is now down to 10 mg pred and although he is unwell at the moment ( will be ringing his consultant tomorrow) so prob be uping his steriods but the benefit of him having this treatment is loads better than the side effects as he has been so better off on this medication,,, can i ask have u been or are u on sub cut bryicnal as he was put on this before the methotrexate just some thoughts for you and i hope u get the benefit tht my son has got by being on this med

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thanks for reply owens mum

Well I took my first dose today went to work as normal but by lunch time I was feeling a lot more tired and light headed than normal so I got someone to take me home just incase. I fell asleep as soon as I got home and did not wake up till 6 tonight. I am not sure if it was the meds or just one of those days. I have had a sub cut (bryicnal ) last year but it did not go well. I hope that after today there will be no more side effects and if tiredness is going to be the only side effect I get then I will be a happy bunny.

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your welcome chrissi

im pleased to hear tht u were pleased so far are u having the tablets or the injections owens on the injections as its better for children as his consultant said it first owen was upset everytime he had to have it but now hes ok abt it and he has felt the benefit of it.......... if u have got any questions dont heisertate sp to ask ruth

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Hi Chrissi,

I'm really glad to hear that your first dose of methotrexate wasn't too awful, even if it did wipe you out for the day! Tiredness and 'flu-like symptoms are quite common and may improve with time - if they don't, you might want to ask your consultant about switching the day so that it doesn't affect work (although this does mean that it can spoil your weekend a bit, which is annoying!).

As you say, though, these sorts of side effects are minimal when you consider the possibilities, and certainly minimal compared to being on long-term high dose pred, which is obviously the alternative.

Best of luck, and I hope it continues to go well.

Em H