Sorry, I'm fed up & hope I don't depress or dishearten anyone. I know mtx etc. do work wonders so often but I'm having a bit of a crisis of confidence about the drugs & would like to get it off my chest. At the moment it just feels as if I was put on mtx because I had RA and now, further down the line I'm due to have Sulfasalazine added in because that's the next step .... but none of it feels particularly clever or targeted. I'm trying to see the drugs as damage limitation but I don't actually have any proof that that's what they do. For all I know I'd be in the same state without them because my disease seems to have short, aggressive phases followed by much longer quiet ones. I just feel that I do not know much about what's happening and that, more to the point, nor does my Rheumy. It's like he's on auto-pilot and I actually quite understand that, not sure what else he could do.
I know that the development of anti-tnf therapy marked a huge step forward in the treatment of RA but is there anything else happening? Just reading posts here makes me aware that RA comes in so many forms ..... there's now recognition that cancer is actually many completely different diseases & that's paved the way for a much subtler approach to treatment but that's yet to happen with RA.
Have run out of steam now but know I'll be more optimistic tomorrow. Luce xx
Oh Luce i can definately see where you are coming from.
I also felt like i was just a number to rheumy nurses, yet another ra person so we'll shove her on mtx. That didnt work so we'll shove her on leflunomide. Only last week when i went for an appointment (which when i got there they actually asked me what appointment was for but that a whole new story lol) i met yet another rheumy nurse (we have quite a few) and even though they didnt need to see me she was actually a person, who took time to speak to me and she listened.
I am going to ask for her in person next time.
As for the meds im still unconvinced they are working for me. Ive now been put on hydroxy alone (though my esr has doubled since diagnosis) so i cant fathom out why a less harsh drug when im obviously getting worse.
Thank you! That's just what I needed, just that reassurance that others feel the same way (though heaven knows I should know that by now!). Mtx did get me to a much better place I think - but the tricky bit is that I was starting to feel a bit better before the drugs & that fuels my doubt about them. Now I've sort of plateau-ed out with some of my joints actually getting worse although I feel well in myself, mostly.
Hoping the hydroxy does work for you, not as strong as mtx, that's true but I suppose they are hoping that it might just click for you. There is just so much 'wait & see involved' ......
Possibly it's because you have to be seen to "fail" a number of DMARDs before you may qualify for biologics? It may be that your rhematologist has a plan, even though s/he hasn't shared it with you.
nice.org.uk/nicemedia/pdf/C... This is a link to the NICE guidelines for treating rheumatoid arthritis, which may give you either a clearer idea of where your rheumatologist is going, or enable you to ask some more questions if s/he doesn't seem to be following the guidelines.
It's such a freakily variable disease, I guess they are all just trying stuff out to see what works for each individual patient.
Oh yes, I do think that traipsing through the DMARDs is part of the 'plan', if you can call it that. But honestly, that's a right old kettle of fish, isn't it! If I were to start thinking too much about how ludicrous that all is I might have to kick something, most definitely not a good idea! Last night I was stumbling around in the dark on my way to the loo & had a few words with my disease, I actually threatened to punch it in the face and called it some nasty names! Clearly I'm losing my marbles but it felt good!
I've seen the guidelines before but will look at them again before my next appointment in 2 weeks time, as you say it will help with the questions.
Luce, try not to dwell too much on it as it will only make you worse. I am afraid i don't know much about all the drugs that i am on as long as they work i don't care. Its not that i am ignorant about it,its just this bloody disease takes so much away from me as it is without worrying about all the technical stuff. You will have flares and yes they will sattle down after a time and you need to rest and hopefully it will pass. I hope you soon feel brighter and as soon as we have some sun and hopefully we will all feel better. Hugs your way luce.xxx
Thanks Sylvi! I do go with your approach most of the time because we do just have to get on with it. How the drugs work does interest me a bit though, that's just how I am, but at the moment I am wondering whether they are working at all, that's the trouble! The sun is shining this morning - for some reason I'm always happier in the mornings these days, darker thoughts sometimes after dark! Enjoy the sun if it's with you too,
I am the same when the sun is shining i am in a better place. I suffer with s.a.d during the winter months and i find the dull dark days very hard. xxxx
Luce I felt you were brewing for a bit of a low somehow - from tone of your comments perhaps? Or maybe its because I've been swirling around in the RA whirlpool myself lately I can spot when others are in there too? I think they may have more of a plan than you realise - but of course it is trial and error to an extent, yes. My rheumy, the main guy, explained to me that RA is just a sweeping term given to our disease by a bunch of rheumies and it probably actually encompasses several different diseases in reality.
I get in such a muddle myself over what to do and whom to believe I really can't advise but I think you should at least try the Sulphasalazine for what its worth. My last consultation was with a number cruncher chap who worked everything out scientifically and wasn't interested in discussion - apart from when he got quite starry eyed about the effectiveness of Metoject versus MTX tablets.
I've been taking two DMARDs as you know and am seriously minded to ask to come off them for a while now and then ask to try Leflunomide instead. I feel I've given MTX 16 months of my life. Its worked well for my RA - mainly since taking in injectable form - but side effects are such an issue for me that I just feel worn out with it all. I don't know if I fear the effects of RA as much as the drugs anymore and maybe I need a rude burst of joint pain to make me appreciate our meds properly again? - I just don't know, we will see. Tilda xxx
in reply to
Thanks Tilda, I definitely will try the Sulfasalazine, I'm not minded to give it all up just yet! Your phrase about mtx made me laugh, I've given it quite a few months of my life too, the only consolation is that they weren't exactly the best ones!
And yes, a burst of serious joint pain & I'd appreciate the meds big time! But meanwhile I think constructive doubts are in order though can be a tad painful in themselves.
Cheers,
Luce x
Well the worst situation of all to find ourselves in would be serious pain AND side effects galore so I think its important to appreciate what we have presently. But I would challenge any doctor or non RAer to say this to me and not receive a bloody nose just now!! Xxx
I know someone who works in rheumatology research - they are currently working on genetic predisposition to success or failure with RA drugs, in other words they are seeing if there are genetic reasons why certain drugs work with some people and not others. If they can find certain gene markers that mean MTX will work well, they know to try it, some people are fine on it for decades And if the genes say no then they they would try something else. It is all still in research but maybe it will help people to be targeted with the right drugs in the future.
Wow! Did not know this was going on & even knowing that it is does help. There's so much talk about genes these days but genetic predisposition seems to play a huge role in auto-immune diseases so maybe a breakthrough won't take too long. I can see me aged 105 clinging on for that breakthrough, too stubborn to turn up my toes till it comes!
I went to a foucs group trial meeting on bip this roughly similar to what dogrose is talking about they are looking on a dnna/ dellular level and hoping to use etantercerp roughly in lay mans terms like a vaccine to "prevent people with strong genetic history of ra to see if it stops them getting ra!. existing diagnosed sufferers not eligible for this trial .
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This rings bells ..... possibly heard about it on here ....
Hi Luce. Think we are all feeling the same about this. When i go for my monthly infusion of tocilizumab you get to speak to people and we are all there for different things, but in one session at least 5 other RA sufferes came in & we were all on completely different treatments injections & infusions ect. I was amazed at all the different treatments even more since joining on here
It would be gr8 if they could come up with 1 wonder drug but unfortunately ive found out RA is not the same for every one because of different chemical inbalances we all have. Its a very confusing condition me thinks :-). Xx Alison
That is at least quite comforting to me because I sometimes feel so useless for not being able to tolerate drugs as well as others appear to. The emphasis on how different we all are in our genetic predisposition to the drugs we tolerate or don't makes me feel a bit less of a moan bag somehow?! And I dont know anyone else here with RA - no rheumy clinic as such as rheumatology is held in the main a&e so people sitting in the waiting area could be there for anything really. Tilda x
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Oh gosh you shouldn't feel bad about not tolerating drugs as well as some - but I suppose we all have these kind of feelings .... I have this completely irrational fear that as I've had no probs with mtx I'll get my come-uppance with the Sulpha or something else down the line ...
That's interesting - I don't remember being assessed etc. for half the things in those boxes! Wonder if the flow chart is followed to the letter for anyone?
Until I got RA I think I'd fallen into thinking there were broadly 2 sorts of diseases...the ones where you get given a pill/treatment/whatever and then X days later you're better, and then the diseases where there's no cure and you end up dead. And of course RA isn't like either! So it's made me get curious and try to find out as much about it as possible, including looking at histories of people with RA. And I think that to an extent that's given me the proof I need to keep taking the drugs, as I can see small changes in my hands and feet that shows me that there is something up, and know that I really, really don't want to end up like RA sufferers in the 18th/19th/20th century. So I don't need the horrendous pain back to persuade me to keep chucking them down me. Well, most of the time anyway - as I think we all have doubting days now & then?
And I'm lucky in having a consultant who's happy to talk about her strategy for treating me, so although there's a degree of trial and error I don't feel that it's totally random. She has explained to me how she views sero-neg patients slightly differently from sero-pos and so on, so I have some confidence that she's using her experience and looking at me as a person rather than just following NICE guidelines on auto-pilot. So, question back to you is whether you've tried asking your consultant? As maybe having a more communicative relationship with him/her would help you too? Polly
Well, I am proactive but get it wrong sometimes e.g. I probably shouldn't have asked to delay the Sulphasalazine at the last appointment. As for achieving a more communicative relationship with my consultant, not sure what more I can do at the moment other than stalking him. He's new, I've only seen him 3 times & I've been trying to kind of gain his trust - I'm aware how daft that sounds but he was more discursive last time I saw him, seemed to accept that I'm able to understand this illness & I guess that's progress. He pretty much admitted he was a bit stumped which is okay by me - honest at least - but obviously I do need to press for a way forward. I see the nurse next time but that might not be a bad thing, she seems very much on the ball & I'll go prepared to ask for key concerns to be relayed to my Rheumy.
Don't you think it would make the job so much more interesting to have an interested patient? I felt that with my consultant actually - although I know he's pushed for time at each 4 monthly clinic and I've only seen him 3 times in all - but he seems to enjoy discussing my points more now he knows that I come here and that I'm interested in RA generally. I'm sure most consultants must be like this because otherwise it would be just so boring if all patients just nodded and went away without questioning or discussing the drugs or info relating to their RA? You don't sound like a lost cause with your RA Luce, so I'm sure there's room to open up some discussion with this chap and push him to expand a bit on his specialism? Tilda
The Humira was sort of chosen for me due to it being good for treating eye problems (or at least not causing them). Now I have been taken off it due to eye problems! Still waiting for MRI results for MS and blood tests for Lupus, either of which can be brought on by Humira. I sometimes wonder if there will be anything I can take or will I end up a twisted root ball of pain as nothing will work.
Was going to ask 'how do you cope?' but I know the answer to that, same way as we all do, I expect. But my RA is much easier to cope with than yours so you've given me a boost in the 'just get on with it' direction, thank you Dogrose. Really hope the MRI results are reassuring, will look out for what happens. x
Luce, i think the same way as you, i am now on sulpha and metx as well, sulpha does nothing on its own so to my way of thinking it is just the next step. You summed it up well there Luce.
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Thanks Mads. I am sort of seeing Sulphasalazine as one to get on, fail, & tick off on the way to anti-tnfs! But there again NICE recommend dual therapy, I think, so I guess that's the rationale for combining the two.
Unless I'm confusing you with someone else I think you've been having a tough time recently? I'm hoping the combination starts to work for you if it hasn't already or that your next step hits the spot. x
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Thank u luce like you my consultant doesnt open up much he is a stand in my usual is on extended maternity leave. He was going to up sulpha on the last visit but iasked to go back on metx with sulpha and he said ok then but forgot to write to doctor and when he did gp couldnt understand his letter. Didnt give me alot of faith at all.
I think that's a bit of a hasty assumption Luce re ticking off on route to anti tnfs? If you aren't in much pain and haven't got soaring inflammatory markers it seems unlikely that you would qualify for the big expensive guns - although I know you've sustained a fair amount of damage prior to diagnosis. But if my rheumy is anything to go by it's symptoms that count in the here and now. Of course I might have got this completely wrong but I think you should start a drug on the assumption that it may well work.
There are people taking combinations of therapies very effectively on here. Sulpha is only a little behind MTX in terms of gold standard I believe and that's just because it's not quite as toxic or quite as well tolerated. But it's been around a long time and works wonders for lots of people and reasonably well for others so I wouldn't be too dismissive.
Please forgive me if I'm being a loose canon though - I'm just back from my two weekly film club night and pissed on wine again!! And my GP was sitting at the table next to me so I don't need to do a disclaimer on Monday morning when I have my blood test either! TTX
It has been around for a while, I believe. I think it is classed as a Biologic drug but not an anti-tnf .... just checked on Wiki & it said that it blogs other cytokines not tnfs (tnfs are cytokines). Big claims for it in this article though. Interesting to hear the medical establishment admitting that new treatment options are needed for RA. But oh for new CHEAP treatments as effective, or more effective than Biologics!
Those big claims for success were made in 2009, wonder if they've been proved since then? Would you take it if it's as good as they thought back then??
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