treatment dilema

bighair

I have been taken of all my Rheumatoid meds due to elevated Liver enzymes and having a huge flare-up. Rhematologist will not prescribe Enbrel or Humira beacuse I have not been on Methotrexate yet (NICE guidelines). I can't go on Methotrexate becasue of my liver. I have been left in limbo with no-one making any decisions about treatment. What do I do?

skezier

Hi Big hair,

Welcome to the forum, its a good place and this lot are really good.

Its a catch 22 you have there.... Can't your rumo do something about it a there has to be some consideration given to people who can;t have mtx. know there are some here who have the biologicals and don't take mtx but i don't know if they did the mtx and failed first.

I know how you feel though cus I have been on 25 mtx both tablet and now jabs and its doing nothing. I can't have a biological cus of the postcode lottery and wont get funding....

Its not fair that there are drugs out there that could hep us and we are not able to have them but in your case there must be a way around not being able to tolerate mtx.... I really hope someone can help you and nice to meet you. Cris x

dreamdaisy

Oh I empathise. I was taken off all meds (apart from sulphasalzine, possibly a reduced dose of that too) in January 2007, rendering me bed-bound for three months (apart from visits to the hospital). This happened as enbrel had tried to explode my liver so I had to have a break from everything until that had settled down. It was a miserable time but I just had to get thro it, no alternative, and the time passed, as it does. The one thing I regret about that time is that my consultant put me on oral steroids and I discovered arthritic nirvana. I am devoting this year to coming off those babies (and yes, it will take a year if not longer).

I honestly cannot remember the sequence of events after April 2007. I will have a think about it, and if anything comes back I will return. I know that injected meth came into my life around about that time. What has caused the flare in enzymes? Do they know? What meds have you been taking to date? Are you an RAer or PAer or another form of this dross? DD

tillytop

Morning - and welcome to the forum.

I am so sorry you are having a rough time - this is a horrible situation for you to be in. BUT, I was sure I had read somewhere that the NICE guidelines on anti-tnf's for RA do make provision for people who can't take meth and, having looked at the guidelines this morning I have found the relevant paragraphs.

If you go to http://www.nice.org.uk/nicemedia/pdf/CG79NICEGuideline.pdf and look at paragraph 2.2.1.1 about eligibility for anti-tnfs, you will find the information and, if it were me, I would print that out and wave it under the rheumatologist's nose! Not sure if liver problems preclude the use of anti-tnfs but I reckon it is still worth a serious discussion with the rheumatologist. It may be that he is waiting for the liver to settle down before trying meth but even so, it is not fair for you to be left completely in limbo like this.

If the link above doesn't work, or you can't find it, please feel free to pm me or let me know via this thread and I will try again.

Thinking of you.

Tilly xxx

barbara12

Hi Bighair
And if you are new...a very warm welcome to this lovely forum, Im sorry I cant help with the meds, but I understand how awful it must be, I was taken off antiflams due to my kidney reading, and I have had an awful time.
I can see that the others have given you some info, and I wish you well with it all
And will be thinking about you.

julie47

Morning bighair

welcome to the forum from me too.

This is the 3rd time i have tried to reply to your post and been thrown out of the programme. :x

I am sorry that you have had to stop your meds and hope that your liver returns to normal soon. Hopefully the rhummys have a plan when you next visit.

Take care
juliepf x

tkachev

Hi and welcome from me too.

I'd like to think they are making decisions and when you next visit they do have a plan as Julie suggested. I do hope you have another appointment lined up soon. My liver results were high at my last appointment so I have had my MTX decreased. But it can cause damage so that is why they have taken you off. I'm sorry you are suffering so badly as it is a horrible pain to deal with. Perhaps you could visit your GP if in too much distress but I know it isn't easy when you hurt so badly.

Stick with us...

Elizabeth

Firemanphil_39

My understanding of elegibility criteria for Biologics is to try 2 DMARDS before.... Unless there is a contra-indication to using them! So surely that must be taken into account then?
good luck!
x

suzygirl

Hi, I also can't take meth due to liver problems. I am taking sulfa and so far no liver problems, although it isn't as effective as I think I would like. Your other option is Azathiaprione, it is used to treat patients with auto immune hepatitis so would be ok for you.

Trouble is getting to the bottom of the liver problems, whether its the meds or something else. It took a whole year to get to the bottom of mine, and mean't a considerable delay in proper treatment, which hasn't helped disease progression.

There are other options such as Cellcept as well, or cyclosphomaide. You really need a good chat with your rheumy.