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Rank: Member
Groups: Registered
Joined: 12/23/2009
Posts: 15
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This will no doubt sound silly to you - but I have been taking MTX since last March/April and have been feeling quite good. Lately I am feeling tired and I seem to just hurt all over. I have RH in my hands wrists and feet, but I feel now just as if I am coming down with the flu. I work full time and get really tired. Last week I my blood results showed that my ALT was 99, the nurse in the surgery just said "a bit of concern - but don't worry" and that the doctor had seen the results and signed them off. I contacted my RH nurse in the hospital who got back to me within the hour to say that I should have been called by the surgery and told to stop taking MTX immediately and wait until I had a normal blood test. It appears that the maximum number is 100. I have made an appointment with my GP surgery to find out why this happened, as I have been informed that they receive the results from the hospital via computer the following day. I am a bit worried about causing any problems as I know I need these people, but my liver was extremely inflamed. Has anyone had any experiences like this - I have not felt like this since before I started taking MTX (does this mean it is beginning not to work) I am sorry to be such a "pain" but this side of it is new to me thanks Jane 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Jane,
Sadly, sometimes the meds do stop from working as well, and also sometimes they can affect the liver. MTX is one of the meds which one absolutely must be monitored on, usually for the liver and the WBCs.
I would definitely ask to see your rheumy soon, the GP *should* be able to arrange an emergency NHS appointment for you. (within a week)
Liver results can fluctuate hugely so please try not to be too worried by this. NEVER feel guilty about turning to these people for help, that is their job and you deserve the very best of care and support with this illness.
What will probably happen is they will re-check blood, take you off MTX for a time or lower the dose, administer a steroid injection to help with the pain and inflammation and hopefully discuss other med options.
Much love and prayers,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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PS; AND NEVER say sorry on here! LOL
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Jane
I know this is a bit scary, but please try not to worry too much.
Quite a few of us on the forum have had the same thing happen and some of us several time.
I can only tell you about my own situation, but I'm sure others will come on as well.
I have been on/off the mtx 3 times for the same reason. However, they don't usually worry until the ALT level rises to 150, and then I come off it. It's quite a common thing to happen. Once you have had a rest from the mtx for a couple of weeks or so, your levels will go back to normal and you can re-start the meds. If you have any sort of infection, this will also push the ALT levels up, so maybe you've had an infection and not noticed it. The Liver is a wonderful organ and very quickly recovers and regenerates.
Take care
Love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jane,
I've had this "scare" too, and had to stop the mtx for a couple of weeks .
As Jean says, the liver soon gets back to normal and just because you go back on the mtx it doesn't mean it will happen again, but if it does, another break from it will do the trick.
The first time my alt went up I felt like I had flu so this could be what your problem is.
Hope you feel better soon.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Hi Jane I had this problem too and my liver results slowly went back down. I think you should find out what happened because if the doctor signed it off and then one took you off - who ismonitoriling you. Do you keep a track of your bloods in the little red book? This is quite important. With me I was on a low dosage but my bloods kept doubling, from the very start I think they should have taken me off it much before they did but I am quite cautious now. However you have been on it a while and as the others say it does fluctuate with different people and sometimes the stop and restart you. The other thing is whether or not the metx is doing its job. Dont worry and all the best. 
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Rank: Advanced Member  Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi Jane, I have been taken off metho 3 times due to the alt, just looking at my booklet I have had, 134,139,184. I get my bloods taken at the hospital, they prefer it that way as they get the results back the day after and if there is a problem they can ring straight away. In my case they rang me and told me not to take my next injection and to come back for another blood test. After a couple of weeks I was back to normal. The consultant left my dose as it was, when it went up again he reduced it to the level I am on now. I am now in the position where he knows I cannot take any dose stronger than a measly 7.5 mg. In my case there was no need to worry as they monitor you so closely. My GP and practice were never involved.
Hope this helps to set your mind at rest, as I know from experience, it can be very upsetting.
John.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jane, I had this problem with leflunomide - flu-like symptoms etc.When my GP came, he sent the Community Nurse to take my bloods, and my ALT came back at 140, so I had to stop the lef until things went back to normal. Before I changed hospitals, it was my GP who was the most vigilant about my blood results. At my current hospital things are really good. Try not to worry about the high result, as it doesn`t take long to come back down once you stop the drug. Kathleen x
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Rank: Member
Groups: Registered
Joined: 12/23/2009
Posts: 15
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Hi Everyone Thank you all for being so supportive, it is great to know that you are all there. I have my next bloods are next Tuesday so I will speak to the nurse then the following week with my GP - as you say I will find out why Iwasn't called back and told not to take MTX until it had gone down. I have my record book with me at all times and I had been keeping a separate little diary for any changes in my aches and pains but I have let that slide - I will start making notes in it again. Thinking back I have been feeling as if I have been "kicked by a horse" flue like. You mention that if it happens again I can see my Rheumy, who starts the ball rolling on this me or my GP? Thank you all again - silly as this sounds speaking to you all I feel I can now have more about me to ask why did this happen and why wasn't I told to come off MTX even for a while. speak soon Jane 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hi Jane xx
I dont take mtx but glad to see you've had great support from people with similar experience and just to say hope things get sorted and u feel much better soon,
love Liz xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Well, the GP should ring you if say your bloods are worrying and tell you to either have a rest or come off it and then pass on the results to the rheumy. The rheumy and GP *must* have a form of communication or else things get overlooked....
Amanda
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