blood tests

[beeckey]

Hi my doctor rang me to tell me my liver test was really high and asked how i was feeling was i feeling sick tummy pains and so on and not to take my methotrexate but i had already taken it anyone else have problems with bloods. x

[Lomo1964]

Hi I had very high liver test results when I first was diagnosed with RA and they didn't want to prescribe any drugs until I had seen a liver specialist who said that it seems I could have non alcoholic fatty liver but nothing shown up on scan. My liver settled down but I have since learned that ra can upset the liver. I went for blood test last week and my result has raised again so have to go for another blood test next week. I find it really worrying I hope you get sorted but I think this is all part of the process. Good luck😆

[beeckey in reply to Lomo1964]

Thanks for that i had raised test at the beginning of the year but this time they are much higher

[Ellieellie]

Yes I have. After being on Methotroxate for many years my liver function readings starting climbing so they stopped it. They may let your liver settle down and restart you on the Methotroxate again or may try another med. they did with me and then my blood pressure went through the roof and now I am a candidate for biological treatment. Hope you coping ok and feeling less nauseous. Take care.

[beeckey in reply to Ellieellie]

Thanks i am already on tocilizumab

[Afcbsupporter in reply to beeckey]

Hi, I had to be taken off of Toclizumab because of my liver results, which was a great shame as its the best drug I have ever taken. (I wasnt on methotrexate at the time) My blood tests are OK again now, but Im not allowed back on the Toclizumab.

[beeckey in reply to Afcbsupporter]

Hi i am on Toclizumab i never thought it could be that i am the same best one yet.could i ask what you are on now.

[Afcbsupporter in reply to beeckey]

Golimumab - Where as the Toclizamub seemed to work from month to month once in the system, this one seems OK when its injected & wears down as the month goes on.

[Nitrobunny in reply to Afcbsupporter]

Hi! My liver numbers are a little high but stable and I'm on Toclizumab as well with no MTX because of an intolerance I developed over time. May I ask the both of you how long it took the Toclizumab to work for you? I just had my 3rd dose a week ago. It was the first full dose. The first two were half doses. The first two doses worked well for the first two weeks after the infusion. I had a really horrible flare (worst ever) at the time of third infusion and it doesn't seem to be helping as much. Perhaps because this flare is so bad. I'm concerned about my liver numbers as well. Sorry for hijacking your post.

[hanlm in reply to Nitrobunny]

Hi Nitrobunny - I was in your position a year ago. Had a horrendous time all last year with flares and started Tocilizumab last November. I'd also developed an intolerance to methotrexate and enbrel. Was desperate for it to make a difference quickly, it did take 4/5 months till I really felt the affects but has been brilliant ever since. My joints have never been less swollen and I've not needed steroid injections since Feb. I hope it starts working for you too soon xxx

[Nitrobunny in reply to hanlm]

Thanks so much for your responses. As I said this last dose was double the first two and the fact it didn't seem to work as well as the first two was really concerning but then again this flare has been the worst to date. I'm taking 20mg of prednisone and was down to 10 before this flare because the Toclizumab was seeming to help. It has kept the GCA symptoms completely at bay which is wonderful. I had two GCA attacks that landed me in the hospital in January. Hopefully in the coming months the swelling and RA pain will decrease as well. I met a few other people who said they either had success with Toclizumab long term, many years for some and a few said it worked briefly or not at all. Time will tell but I am hopeful

Thanks again for your kindness in responding to me. xxx

[beeckey in reply to Nitrobunny]

Hi i have been on Toclizumab for 5 years i think it was the 3rd infusion before i felt any different it is the best one i have tried but it is not working for me as well as some people say it is for them but for a lot of it works great so hope you are 1 of them best of luck and let us knw how you are doing x

[Afcbsupporter in reply to beeckey]

I was one of the guinea pigs before NICE had agreed toclizamub, & after probably the 2nd infusion I received, felt so much better, it worked wonders for me, but as soon as the liver tests were not showing well, I had to stop taking it. Personally over the 40 years I have had RA it was probably the best 4 to 5 years I have been.

[Karen77 in reply to Ellieellie]

Same experience here. I was off MTX for 7 months before my liver was well enough to start Arava. It's creeping up again, so we'll see what tomorrow's labs reveal. I don't want to have to stop the drugs as I am just starting to feel myself again.

[Joodee]

Hi, I am on Methotrexate and have occasionally had higher than normal readings on my blood test relating to my liver, however, these readings have settled back to normal after a blood test a week later. Have you been advised to repeat the blood test? I am always very reassured that the doctors pick up these readings and get in contact to check I am ok. It shows the system is working!

[beeckey]

Yes i go back next to repeat it so hopefully it will be ok thank you

[Lynnels]

Hi!

I was diagnosed with RA 5 years ago and have had a tricky journey of 4 years before finding the right medication to get this damn disease in remission. The start of the 'journey' as they call it was Methotrexate (various ways and with other drugs combined, and that did mess with my liver taking the ALT into the 90s So it was stopped for a few weeks, my liver improved and then they insisted on restarting. And then we'd go through the same again etc. This went on through all the oral and SubC drugs they could think of and Aas stopping the Methotrexate made no difference to pain I kept asking for it to be stopped completely. The consultant wouldn't hear of it and even when I was on an IV biologic (as I am now) continued with the Methotrexate. I eventually saw a Senior Registrar as an emergency as I was so ill one time (rather than the consultant) and he took me off Methotrexate and said I didn't need it and that research had shown that there wasn't really any reason to take it whilst having the IV Biologics and that some consultants just prefer to do it.

So I came off it, and have never looked back. I've seen a liver specialist to access if there's any other damage rather than a fatty liver and all seems fine. Even now, for some reason, my ALT swings upwards but comes back on it's own accord. I've stopped worrying about it now. Like Lomo 1964 said, all part of the course I think.

I hope all turns out well for you.

[beeckey in reply to Lynnels]

My goodness what has got to happen before they listen glad you are feeling a lot better x

[Denise64]

Hi

Yes I'm on methotrexate and for the first time in nearly 3 years I got called back as liver not so happy at the moment , so went back yesterday and awaiting my results . but a little tip is to make sure you are fully hydrated as the nurse said my liver may have just been dehydrated ! now I didn't know that. SO it may not even be the meds. Hope it settles down for you.

Dee x

[beeckey in reply to Denise64]

Did not know either Thanks x

[Joy_1]

Hi,

I too am on MTX. Started taking it in Nov 15. I have had a few raised ALT readings especially at the start. Consultant said not to worry all down to MTX and then results settled back into the normal range. 1 blip in the summer but then next one was fine again.

Yes as mentioned RA can affect the liver. I know of someone whose RA attacks her arms, legs and liver.

[beeckey]

Thanks x

[Amy_Lee]

I took mxt too. My ALT reading from normal to 42, then 83. My rheumy reduced my mtx from 20 mg to 15 mg when it was at 83. Then the reading was back to normal for 3 months. It went up again in Nov to 46, my rheumy again reduced the mtx to 12.5 mg. I was asked to go for another blood test last week. The hospital did not call me, I suppose it should be okay then. I will know the actual result when i visit my rheumy again in Jan 2017.

During those period of abnormality, I felt perfectly okay though.

[beeckey]

Yes i just feel like i always do

[Scrappie54]

I have been on Methotraxtate for several years with Liver levels sometime high. When this happens, Dr stops it for three weeks and recheck the levels. Most of the time it goes back to normal levels. This just happened last month, just restarted Methatraxate this week with levels in normal levels.

[beeckey in reply to Scrappie54]

Thanks x

[PennyW1]

Hi. Ive also got problems with my liver results. Have to stop my sulphasalazine and await a phone call from rheumy team as to what to do next. I also have to have blood tests fortnightly untill im told otherwise. Nice to know someone has same problem as me, but sorry to hear your having problems. Btw im not feeling sick or having tummy pains either.

Take care