I'm a little confused at something my consultant said to me last week.

My CRP's been high for several months now and I started injecting MTX a month ago with the hope that it would help. I had an appointment with my consultant last week and when I said that I didn't think that injecting it would make much difference he said it could make a vast difference when it's injected because it bypasses the liver and I will get the full dose in my system. I've got to see him again in January and if my RA is still active the next option for me will be anti-tnf's. I asked if I could try triple therapy first, knowing that others on here have had good success with it (not really happy about anti-tnf's). He then said that triple therapy was more beneficial to the consultant than the patient. I didn't know what he meant, so I asked if it treated the symptoms and not the cause. He then said something along the lines that if I did go on triple therapy it would be hydro......(can't spell it), and this was the least effective dmard and it wouldn't do anything for my RA.

So that then brings the question of why do some consultants do it if it's not effective? I realise that he may be thinking that my CRP's been too high for it to have any use for me, but it still leaves his comment that triple therapy is more beneficial to the consultant than the patient. Do they get brownie points if they keep the cost of medication down? Are they only allowed to put forward a certain amount of patients a year for the funding? Anyone got any idea.

On a lighter note.........when he said that MTX will bypass my liver when I inject it........I quickly asked if that meant I could drink more alcohol, he just laughed and said NO!!

Paula

hi,this seems to be a minefield,i am on mtx inj and hydroxy,i was on naproxen but the consultant stopped it as soon as i was able, he told me it goes for the kidneys so no win there, i feel the same= ie stiff tired etc etc,i too think its a lottery of doctors and having to sort out the costs,must say i have been one of the lucky ones for treatment, we are as per in their hands,take care.dorothy.must say
never heard of anything passing the liver?
rose give the jags a go it really worked for me,the tabs made me feel reall bad,the needles are so fine and easy its like getting blood done just the thought of doing to ourself the thing,mind and rub the sight after as i didnt and it can nip abit off and on if you dont.good luck

Hi there. I can't really shed much light on your consultant's comment about the liver as your blood supply goes through your liver and it has a role in dealing with toxins and nasties so I'd have thought the MTX would still have an impact. Could he perhaps have said your stomach, as injections would definitely help reduce adverse reactions on your stomach lining? But injecting does mean you get the full effect as some of what you put into your stomach does go straight through you...

As Rose said each consultant has their own preferred approach, so perhaps it is to due with the amount of paperwork associated with getting people accepted to use anti-TNFs as I think they are supposed to follow a proscribed route. My personal view is that we'll have to live a long time with these drugs, so I want to stay on first rung of the ladder as long as possible. I'm on MTX and hydroxychloroquine, which is working for me at the moment (fingers crossed of course), and still have a third DMARD in the wings if I need it. It seems that over time the drugs get less effective, so I'm happy to keep anti-TNFs for later. However, some people do think anti-TNFs are impressively effective so keen to get on them as soon as possible. What scares me is going through them all and having nothing left to try! However, hope this is all academic by time you next see consultant and your RA calms down completely without more drugs. Polly

Thank you Polly and Lyn for your replies.

I am currently taking 6 SLZ a day and 20mg of MTX, I have been told by my specialist nurse that 20mg of MTX is the maximum dose even though I have read on here that some are taking 25mg. I had MTX added a year last June and to be honest I think I have gradually got worse whilst I have been on it. My CRP April, May, June and July were high (well high for me), I knew something had to be done, I think we all get to that point sometimes. I was having my grandchildren coming over from Gibraltar for the summer holidays and I didn't want to mess about with my medication incase I had some sort of reaction to it being changed (I've been very lucky up to now and had no side effects from either drug). I knew I was to see the consultant in September so I spoke to my nurse to ask if I could have a steroid injection to tide me over till September. She got back to me saying I could and the consultant wanted me to start injecting MTX. I knew that injecting MTX would mean more of the drug in my system and I have read of some people just feeling so ill from taking MTX so I decided to wait till they had gone home.

I had the steroid injection and it did take the pain and stiffness away, yet my CRP results were still high, can't understand that. I have been injecting MTX for four weeks now and I must say (not wanting to tempt fate her so fingers crossed) that it does seem to be working, I do feel alot better than I did in July. Got to see consultant in January, appointment made, to see if my CRP goes down, if not he thinks that the next thing, like I said in my original post will be anti-tnf's. I thought that I still had the option of adding another Dmard, being that I am only taking two but the consultant thinks differently.

I really don't want to go down the anti-tnf route, am worried about the side effects etc. It didn't help matters when the specialist nurse once told me that you have to have two counseling sessions prior to starting the drug, that in itself is frightening. I sometimes sit thinking about it all and get a bit worked up about the thought of taking something that's not been tried and tested for very long, but if I don't then I may end up really bad having to have joint replacments. I have to weigh it all up and think about my quality of life if I don't. I really do think that with RA being a progressive disease with no cure likely soon it will be inevitable that one day I will have to consider taking it.

So that brings me to my next concern, if I am offered it would it be wise to start it giving the current cut backs in the NHS and the proposed idea that funding is put into the hands of GP's (thinking here that my GP may think that the cost is too much for one patient). Told you that I think about things alot. Now thats a thought, maybe thats why my consultant wants me to start on anti- tnf's and not another Dmard. Oh my mind is in such a whirl at the moment.

Paula xx

Hi Paula

I can't comment on MTX and the liver - as MTX didn't suit me anyway. But I was told that Hydroxy wouldn't be strong enough for my RA as it only works in milder cases!!! Hence I never tried it although a friend of mine is on it!!! I did try leflunomide and sulfasalazine - not very successfully; but I have to say I am now on an anti-tnf (Humira) on its own and it has revolutionised my life.

I was really worried about the side effects etc before - as I read through the leaflet they gave me in advance... but I have to say I decided I have nothing much to lose (as I was in so much pain and unable to do anything - unless I was on steriods 20mg/day - which long term wasn't a good plan) that I might as well give it a go. Amazing..... gone are the sore and stiff joints. Just an ongoing knee problem but that is all. CRP and ESR are now always less than 5!!

So I hope that helps a little.

Anne

Hi Paula

Sorry I am very late with this but I hope things are improving for you

Sheila x

Hi Paula,

I've only just caught up on this, as you know I was started on the triple therapy, my consultant says everyone who is newly diagnosed should be started on this combination. I know it works better for new patients, but I am unsure how helpful it is once you have taken others. The bombarding your system with the triple therapy worked for me as I have no pain now at all, hopefully things will stay like this, my rheumatologist says there is every possibility. I actually called and spoke to her secretary and left your message to ask her. I have not heard back yet, she may or may not be able to comment. If she does I will give you the feedback. All I can say is I was extremely ill with RA at the start and was unable to do much at all, I was also very scared of taking all these tablets at once, but I am so glad I did and I truly believed in these drugs. I remember her telling me at that time, was the best time to get RA as science was so far advanced in the research for it. My consultant is so up on all the new research, and so very thorough. I think I will always remember the first time I met her, she put her hand on my arm and told me I would not walk out of her surgery as bad as I had just walked in, these words will live with me. I hope with all my heart that you settle with the injectable MTX and have no more problems. Although I do not feel pain now myself, when I read of others I can feel it for them in what they write.

Every good wish for success.

Lorna xx

Hello Lorna

Not seen you posting much recently and wondered if you were OK, nice to see you back posting.

When you said that you have no pain now, are you taking any pain relief? I ask because even when I've been told that my RA is undercontrol, I cannot manage without taking regular pain killers. Because I am now feeling so much better and the fact that I hate having to take so many tablets yesterday I decided to not take my morning pain killer. I take one 800mg slow relief pain killer morning and evening so I have constant pain relief in me. By 9pm yesterday evening I was regretting not taking my morning tablet. It frightens me sometimes, no, most of the time that I am so dependent on my twice daily fix of pain killers. I still can't understand and I don't think I ever will that if my RA is undercontol, I still need pain relief. Just want to add that I have been told that I haven't got any bone erosion.

Paula x

Thanks Lorna for your reply.

I'm so pleased to read that things RA wise is so good for you. I've read a few times on here that some don't need to take regular pain killers, just wish that I was one.

I've asked my specialist nurse, why, when I've been told that everything is undercontrol, I still need pain killers and have just been told that you've got RA and it's painful. Well, that reply just doesn't make sense to me. I realise that when they say 'it's undercontrol' it doesn't mean that the RA's gone away, but in my mind if we have got pain in our joints the RA must be there doing something, which may then turn into some sort of damage.

I was told most of last year that it was undercontrol, your bloods are fine, yet during that time my fingers on both hands have changed. I no longer can wear any of my rings, the fingers on my right hand don't bend much at all and the fingers on my left hand are even worse. This hit home a few days ago when I made myself and my husband a cup of coffee, I couldn't hold a cup in my left hand because the fingers would not bend sufficient for me to hold the handle of the cup. Yesterday my husband had to cut my meat up for me, even when using a sharp kitchen knife I couldn't do it. How embarrassing that would of been if I was in a restaurant and I had to of had my meat cut up like a child. Been told that my tendons on my fingers are inflamed, well they must of been inflamed since early last year. I do the finger exercises that I have been given but I don't think they make any difference at all. I think they give them to us so we think that we are doing something to help ourselves.

I just sometimes feel that part of me is slowly been taking away, bit by bit. I get use to losing something and then somethings else starts. Problem is, until they find 'the cure', this will just continue to go on and on.

Sorry for my moan, but it just gets me like this sometimes.

Paula xx

I know just what you mean about the hands Paula.
Mine have deteriorated during the time I've had RA and are still getting worse in spite of me being on humira which helps me a lot.
Sometimes if I can't cut up my food I feel so angry that instead of asking for it to be cut up I say I'm not hungry and don't bother eating it.
Don't know if it's just my rheumy nurse but I find now that if I say a joint hurts she says "oh it's probably OA", then she doesn't have to treat it. I feel as if they are not interested in those of us who have had RA for a long time, just in the new patients.
Sending hugs,
Love Doreen xx