At the last consultant appointment, which was two days after my father died, I was told by the doctor At the last consultant appointment, which was two days after my father died, I was told by the doctor that she thought I might be in remission. So she wants to withdraw my meds (methoxtrate + infliximab). Additional reasons are that I have fatty liver disease and a reaction to sunlight (which has since stopped even in the bright autumn sunshine). I’m not confident – she hasn’t done any tests and I managed to defer the implementation of this decision to the new year – as my world had been recently turned upsidedown by my father dying. I’m trying to find research or experiences of remission. The academic literature I’ve found (Curr Rheumatol Rep 2010 vol 12 p. 355-362) says that there’s very little evidence for real remission, and that there could be dangerous subclinical inflammation which can only be detected by checking with ultrasound or MRI. It took me many years and tears to get to the level of well being that I’m at now. I know that even if infliximab is working now, if its withdrawn there’s no guarantee that it or any of the more advanced biologics will work in future. And having seen my father nearly reach 102 I really don’t have huge ambitions to reach that sort of age. Any comments will be very helpful I hope! I am trying to be positive incidentally and am extending my exercise programme - in the autumn sunshine this is so lovely.
Does anyone have experience of remission?: At the last... - NRAS
Hi Cathie....I am so sorry to hear about your Father.. .from my experience the last thing you need is to mess with your meds right now. I had been on Mtx for about 5 years- 20mg per week - until a month ago when I was sent to A&E with stomach pains. When I saw Rheumy he said to stop the Mtx as my blood tests showed I was in remission - I had tolerated the Mtx very well and was almost pain free. I'm now having all sorts of gastro tests, but all my RA symptoms have returned with a vengeance - hot swollen joints, stiffness and for some reason a splitting headache. My Rheumy said I could go back on Mtx at a lower dose if I had any symptoms - so I am seeing him next week and we'll see what happens. I don't know if there is a definitive test for "Remission" - I just assumed the blood tests told what was what. & that the Cosultant knew what he was doing! If I am ever in the position of being told I am in Remission again - I will ask a lot more questions as my life has been tune upside down again by this wretched disease. I hope you get things sorted quickly........Kathy
Thanks for this Kathy - I'm so sorry to hear of your experience. I have been to see my GP who 2 weeks after my consultant appointment hadnt received the blood test back from the hospital. That article I read which was quite recent said that there isnt a definition for remission but that ultrasound scans can reveal whether there are some ways in which your disease is active. I have been keeping a diary of my symptoms and things I can do. Went for a walk in the Pentland hills (well down a glen actually) the other day, further than I'm normally comfortable with and I could do it. I want to fight this!
On your case can you get to see your blood tests? I dont trust my doctors enough to just go on what they're saying. For instance it transpired that my consultant hadnt seen the report about the fatty liver disease who really just wanted to keep an eye on things. And she hadnt seen a letter my GP wrote to her either. I hope your gastro tests yield something which can be dealt with easily. I have a big gallstone, but since its not doing anything, they're happpy to leave it. All a bit gung-ho I think!
Yes Cathie I see my blood tests and speak to the RA Nurse if I don't understand anything (which is most of the time) and the hospital even has a computer that sends me a rude letter if I am more than 7 days late having the 2 monthly bloods!!! The results also go to my GP, who is on the phone like a shot if anything seems amiss.....I do trust the GP & the Consultant who both keep me in the loop. I am wondering if whatever is wrong in the gastro region is anything to do with the way I feel - but I have that horrid pain in my jaw that seems to point to it being the RA. I do so wish I had questioned the decision to come off the Mtx. I think I was feeling so low with my tummy probs that I just sleep walked into stopping! I will speak to the Consultant's secretary tomorrow and ask her if the Rheumy can schedule some scans - I'm having a cat scan abdomen on Wednesay so hope they can fit me in with joint scans as well. I do hope if you do decide to come off the meds it works for you.
First, I wanted to say that I am so sorry about the loss of your father and I do understand the feeling of your world being turned upside down.
In terms of your remission - were I in your position I would completely share your concerns about stopping the meds. I was in my eighth year or so years into aggresive RA, when, after a relatively short time on Infliximab I was officially classed as being in remission. I felt fab and my inflammatory markers were very low indeed. I actually began to wonder if the RA had "gone away" and to wonder whether I needed the Infliximab. But luckily, nobody ever even hinted at stopping the meds. I did stop Sulfasalazine (because the consultant and I agreed that it probably wasn't actually doing anything any more) and I was able to cut the prednisolone right down but I continued on the Infliximab until I had to stop due to an allergic reaction. I then went straight onto Humira and subseqently onto Rituximab. I had quite a long gap between Humira and Rituximab (my choice) and it wasn't long before the RA was back with a vengeance and it was almost like going back to the early stages of RA, more than 10 years earlier. It has taken the last year or so to begin to get things back on track again. So my feeling, based on my own experience is that a med induced remission will only continue so long as we keep taking those meds. I think there is such a thing as "true" remission (as opposed to med induced remission) and I have read (and I have a feeling it's mentioned in the NICE guidelines somewhere) the suggestion that stopping meds may be appropriate if remission is achieved but I have also read that, with the biologics, once you have stopped taking them, they may not work for you/or you may not tolerate them if you start again after a break.
I wonder what is behind your consultant's thinking? Do you think it is a cost concern? Personally I feel it is very short sighted of him and I would have thought that, having got you to the point of remission, he would be keen to do everything possible to keep you there.
I do hope that you have the opportunity to discuss this further with him and that you are given the opportunity to continue with Infliximab which is clearly working very well for you.
Does the Influximab affect your liver? I do agree that it sounds like a cost related decision and can see exactly why you are doing your homework in this period before it all stops. I think only a very small percentage of people go into spontaneous remission or remain in remission once the drugs are stopped.
I know you have told me that your research has led you to believe that the fatty liver might have happened independently of the MTX and that the rheumy didn't even know about it - but from where I'm sitting that would be my main concern as MTX can be seriously harmful to the liver and you really don't want liver disease whether or not your RA is in remission. Perhaps you should try and research new combinations of drugs so that when and if you are forced to come off both your drugs your know what to aim for if and when things kick off again? Tilda xxxxxxx
Thanks everyone - sorry if I havent responded adequately so far, but had grandson (aged nearly 8) this afternoon. i can do things with him these days, whereas before I went on these meds I could hardly lift him. So serious homework is needed and not hasty decisions.
I think I should try to contact the rheumy nurse. I've never met her but at least have a name now. Part of the confusion is that I moved to the present hospital from one in England and they just continued my treatment. But I didnt get a thorough examination those four years ago and I think this may be making things worse. But I hope that pooling my experience will help anyone else in this position.
I'm not sure if its to do with cost.. I asked her straight out if it was and she said no, that if I become ill again I would go straight back on biologics, but even that isnt so easy is it. Maybe they wont work again. At the moment I'm missing my old consultant (Tilda knows him) who believed in leaving sleeping dogs lie. But when you wake them abruptly they do tend to get up and bite and my new consultant might regret her hasty move on this guinea pig.
I think this is getting a bit silly - that's the result of being with an 8 year old all afternoon...
Hope everyone's oK
I'd be really reluctant to withdraw infliximab, and the cynic in me makes me really wonder if its just a cost thing that they are wanting you off it. The whole point of keeping on taking infliximab is to PREVENT disease activity, which it can't do if you stop it. Also I'm pretty sure there seems to be some concern that if you stop and start the anti-tnfs you may be more likely to develop an allergic reaction when you restart, or they won't work.
Definitely resist stopping it unless they can very clearly show you that proof that if you did have to start it again a) you would get onto it very very promptly, and b) that it would have the same effect it does now. I wouldn't trust either of those things though, and would much rather just stay on it. What might be an option would be to reduce either the dose slightly, or the frequency of it.
I think this is a really hard one, especially if you have been told that your liver is not 100% (sorry for my flippant comment re giving liver a break earlier, I hadn't realised that this was an issue for you). The thought of stopping drugs is on one hand very scary to me as from hating the idea of MTX I now realise that it could be my best friend, as I am just so much better. But also the thought of keeping on taking them forever is equally scary, as who knows what they're doing to me underneath and the risks they have.
I have nothing against rheumy nurses, mine is great, but for a decision like this I really do think you need a full discussion with the consultant. There may well be some mid ground, perhaps dropping down MTX and keeping on the Infliximab as I think that is possible, even if is better to take the two together. If you did that for a bit it might help see if the RA has gone quiet, and without risking the whole stop/start of Infliximab? But overall I think it's great news that the consultant thinks you are in a shape to contemplate this, so try to keep that thought uppermost and think positive. And if you are doing stuff to help yourself I think that also helps show the doctors that you are serious about managing your health, and makes them more likely to listen to your concerns. I tend to think my rheumy take me seriously when I moan as she knows I've put effort in to being as we'll as I can be. So enjoy the walks! Px
My next consultant appt is in April. Shes proposing that my last infliximab will be mid November. The next one would normally be due mid January. I don't know what I'm supposed to do about the mtxate. My gp is willing to try to get another consultant appt before Christmas but wants to wait to see letter from consultant and blood tests which haven't arrived yet. Something is going very wrong in the communication process.
Hello again Cathie
What Tilda said above made me think further about this. Assuming it really isn't a cost-related decision, I wonder if they would they consider stopping "just" the mtx do you think (I'm guessing that's a more likely candidate for affecting the liver and causing the sunshine rash than the Infliximab). Or maybe reducing your mtx dose? I am not able to tolerate mtx so have had all 3 of my biologics without mtx alongside. The consultant has told me that, had I been able to take the mtx I may not have become allergic to Infliximab and Humira - but he also said that, in his view, a mtx as "low" as 7.5mg weekly would be enough to support the biologics and minimise the risk of developing antibodies to them. To me, the idea of leaving the Infliximab as it is and reducing the mtx dose very gradually to see what happens would be a much more sensible option rather than stopping everything at once. I don't know if you have found the same, but my experience over many years is that when I reduce a med, my arthritis "bites back" and it takes a while to know how things will actually be once settled on a lower dose. So stopping everything at once just seems barking to me! I really hope you can get some answers soon Cathie so you know what you are dealing with and if/how best to fight the system.
If I was in your position I would tell the doctors and nurses that I am going through alot right now and don't think it is a good time to deal with the uncertainty of coming off the meds, after you have dealt with the passing of your father you will have a better idea of what is right for you to do. Making decisions while emotional is never a good idea. take care of your emotional health first and take your time, don't let them pressure you in to doing something you are not comfortable with. I'm so sorry for your loss, take care of yourself.
NRAS is splendid!! Just to share with you all that I wrote to the helpline and received a very thorough and helpful message. they advise me on my rights, but also suggest that a gradual withdrawal would be much better. I've asked them if I can share the response with interested others, and will let you know when they reply.
But with your wise contributions and the NRAS wisdom combined I'm feeling much more cheerful about things.
Hi Cathie, I had a total remission when I was about 7 until I turned 16 & got my wisdom teeth out, then my JRA came back stronger than ever. I didn't take any meds at all during my remission & I got to be a regular kid that loved & played sports.
So sorry you just lost your Dad. I hope that you keep feeling Ok and achieve remission status.
i dont know weather you read some of my blogs
all i can add knees swelled up in 1991 ankles hurt didnt know what it was.
12 later ok again
2005 knees swell up again 18 months later completly gone could not run on leg but walk for miles
2012 april knees swell up again other things start to go to like hand and back etc etc and not pulling back as good this time.
so mine some sort of inflamation so maybe you can have a long remission.
whish i could go back to 1991 and know what i know now
Thanks Minka. I've been looking through my med notes and the doctors have been saying I'm in drug induced remission for ages - 2005 or something? But so far I havent tried it with no meds at all. That's what this rather inexperienced doctor was suggesting. I think I have beaten her back a bit. Now methotrexate is being maintained. Mainly because I've made sure she has more information...
This is a difficult business isnt it. One thing I've learned (like you Minka I'd like to turn the clock back sometimes) is that the more information you have the better.