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Date: 01.10.2012
From: Rob

Subject: Methotrexate - has anyone experienced these side effects?

Hi there, I'm Rob, 26 y/o,

I've been in methotrexate for 3 years (20mg p/w) and I've gone from not bring able to walk to playing football on occasions again. But since April I've had a number of health problems. I've had tests for some if these and the doctors don't believe it is linked to the methotrexate, but I'm still not convinced.

I've had really bad breathing problems, I've been diagnosed with asthma and have been put on inhalers for life. But was told this was a separate issue.

This week I've been really ill with some sort of virus, the main part it has gone now after a week. But I'm having major problems with dizziness and one side of my face is swollen and it feels like a problem with my ear, I getting problems with balance but the panic I get brings on my breathing issues which can make it quite a scary experience.

I used to experience no side effects at all but over the past 3-4 months I've got worse and worse with nausea after taking and generally feeling run down.

Maybe I'm just blaming everything on the methotrexate, but it just doesn't feel right at the moment. I feel horrendous overall and I am considering stopping it for a while in the hope it may help sort term.

One last thing, I've been put on penecillin for my virus, but I've read in a number of places that alongside methotrexate its not good. Should my doctor have even allowed this?

Thanks. Bit of a rant but thought I'd post this in the hope someone has experienced anything similar.

Thanks. Rob
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Date: 01.10.2012
From: Colin W

Subject: Re: Methotrexate - has anyone experienced these side effects?

hi Rob

been on MTX since 1998 , on 25mg at moment , only problem with MTX is raised Alt ( blood liver test ) so had to stop it for a bit but since been back on it had no problem

Folic adic sorts most of MTX side effects & on 5mg folic acid six days a week

never had problem with penecillin & Mtx & dont think most what you are going through is linked to it , could allways ask rhummy nurse , Omeprazole should help any stomace problems

one thing to rememmber with Mtx , we use a very low dose compared to those using it for Chemotherapy , not everyone gets on with it but its a good drug for RA/PA

hope you feel better soon
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Date: 01.10.2012
From: bsk

Subject: Re: Methotrexate - has anyone experienced these side effects?

Hi Rob

I was on mtx for only about 9 months. I had seriously bad chest infections. Are you under a chest clinic for your asthma? Suggest you might ask for a referral to one.

Whenever I had an infection that required antibiotics I was taken off mtx. Usual procedure was off for duration of antibiotics plus 5 days.

Re: nausea, I had that and folic acid didn't help. Was put on mtx injections instead. Apparently much better for stomach. I say apparently as only had one injection then got the mother of chest infections and got taken off it permanently!

Are you getting monthly blood tests? They should pick up any underlying problems.

Finally, are you dealing with your gp when you get ill or your rheumy nurse? I say that because not all GPs are particularly good on arthritis drugs. I get a lot of health problems on my drugs but I remember when I was on mtx, my consultant very firmly stated that I should contact the rheumy nurse or rheumy department and NOT be guided by my GP. This because I wasn't getting the right info and support - even though I have a very good GP practice. These drugs are specialist and, as I say, not all GPs are equal.
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Date: 01.10.2012
From: Jeanette

Subject: Re: Methotrexate - has anyone experienced these side effects?

HI Rob I am on MTX, but have only been on it for 6 months. From what I have read in the purple MTX treatment book they give you to monitor your blood tests it does say very occasionally mtx can cause severe inflammation of the lungs and you should contact your doctor or nurse. If it was me I would be getting back to the rheumatology unit. It also you must not take co-trimoxaole (Septrin) or trimethoprim. I honestly would try and get an appt with the RA consultant and not GP as even my GP says she knows very little about RA. Take care
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Date: 01.10.2012
From: val

Subject: Re: Methotrexate - has anyone experienced these side effects?

Hi Rob,

I have been to my GP today and been given antibiotics as she says I have a respitory virus and she doesn't want it going to an infection. I also have been feeling really run down, had dizziness and feel ugh a lot of the time. I've been on mtx for 16 months with other meds and sometimes after taking it I have a particularly bad day.

I agree with bsk and Jeanette and you should contact your rheumy nurse or consultant. Unfortunately I do not have one at the moment but hope it will soon be fixed. Hope you soon start to feel a bit better. Take care
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