Wanting to come off RA meds..feeling a bit desperate

Mat48 · 5. Mar 2013, 05:07

Thanks. I don't see or know anyone personally with RA here so I haven't had that formative experience that you and others have had of course. But my GP did point out that once damage occurs it's too late to go back and I do know this really. If it weren't for feeling lousy on the drugs I wouldn't be here moaning I promise - but as SW knows the foul taste, day in day out, is really getting me down plus the knowledge that tonight and tomorrow will be spend feeling as if I'd boarded a ship for a rough passage is just not at all nice and I don't know if it's strictly necessary either. Mat xx

dreamdaisy · 5. Mar 2013, 05:22

It's very easy to become utterly absorbed by the disease - the feeling of being short-changed by life can be a difficult one to overcome. It's also easy to become very boring if all you can think and talk about is arthritis.

RA is a pernicious disease and as such needs strong meds to help fight it; those meds can come at some cost to us in other ways and only you can determine whether you want to stop the meds and let it run free or carry on with it being controlled to the point that you can do other things with your life. I've been there and tried that with so many meds, at last the disease is controlled but far too late so the OA is now a bigger problem. My life expectancy is already shortened thanks to the drugs - so what? It's about gaining some quality of life whilst I'm alive and trying to make the best of what little I have. DD

Mat48 · 5. Mar 2013, 05:33

DD I agree with you about the relative merits of staying on drugs as opposed to letting a disease run wild. And I'm not worried about the long term consequences of these drugs either - as I think I've told you before when you imagined that was my preoccupation. However you talk about quality of life being the main thing and having a really disgusting taste in your mouth continually - like a mix of iron shavings and some liquid from the old garbage pile - is actually impacting quite a lot on my quality of life, as is the nausea, but as that only lasts a few days per week at the moment I would put up with that. It is very preoccupying - but I'm not preoccupied with the disease itself and I only come on here to bore you lot - I don't speak about it to my sons or friends or my husband much! But I do think about it far too much it's true but again that wouldn't be the case if it weren't for the nasty side effects.

Perhaps the question I should be asking here is has anyone tried Leflunomide when the side effects of Methotrexate became intolerable, and if so has it controlled the disease as effectively and what side effects were bothersome or unbearable if so?

dreamdaisy · 5. Mar 2013, 08:20

I apologise for my imagination - I respond to what you write and how you express things. Silly me!

I tried leflunomide for some time, I spent the four days of one Easter break in bed with the blackout blinds down thanks to a headache from hell. Did it impact on the arthritis? No. Did it make life a misery? Yes. Was it worth it? Yes, because it could have been the right med and I would never have known. Does it work for others? Yes. One last thought, how much FA do you take? Good luck, I hope can resolve things soon. DD

Mat48 · 5. Mar 2013, 08:33

Thanks DD back on track with you now! I take four FA per week - starting 24 hours after Metoject and stopping 2 days before as per rheumy's instructions. I have been getting mouth full of crap for almost the entire time I've been on MTX but as I go up the doses it worsens significantly. Not sure what it's about but I feel as if I were being poisoned. I don't think I can bear any more chrystalised ginger or ginger tea or spearmint chewing gum and even the bottle of wine over a weekend is no longer doing the job - or rather they do but in increasing quantities and they wear off within minutes (apart from the booze which feels like pure joy of escapism every Friday or Saturday night now!). This taste is turning me into a binge drinker and can't be helping my liver at all (although blood tests have been fine lately I'm almost sorry to say!). Thanks for your take on Leflunomide - that's the kind of stuff I need to know. And bad tastes are as bad as headaches in my book - they colour everything! Mat x

scattered · 5. Mar 2013, 11:17

I was on leflunomide for a while. It did improve my RA slightly but I had to come off it after 6 months because it just wasn't doing enough and it tore up my gut. It has a reputation for being tough on the digestive system, and in my case it certainly lived up to it! In case studies it has been shown to be comparable in efficacy to MTX but more people suffer side-effects on it. That said, I do know of people who swear by it.

Regarding the counselling: you could look into telephone counselling, or ask NRAS if you could become a participant of their telephone befriender scheme. If it helps, think of counselling like physio for your brain. It's just as essential for RA and your general health as exercise is, but people rarely think of their mental well-being. Taking the time out to tend to your mental well-being has a huge impact on how you cope with the physical aspects of RA.

Take care.

Starburst · 5. Mar 2013, 15:49

Oh Mat, sounds like a real quandry. I don't have time to reply fully right now but I wanted to add one quick thing. If you struggle with tolerating MTX, I'd be suprised if you were recommended leflunomide as the rough rule is that they are similarish. I had very few side-effects on MTX and I've tolerated lef really well too. My rheumy said she expected this which is why we decided on the combo of them both. It is definitley worth increasing the FA to 6 days a week. I was suffering bad hair loss and ulcers on MTX and the FA made a big difference.

I'm not sure if anyone has mentioned this but have you been checked for oral thrush? I get it quite frequently and it makes everything taste horrid.

Be kind to yourself x

Mat48 · 5. Mar 2013, 16:28

Thanks. I'm sure my GP would have checked if it might have been oral thrush and I have no soreness in my mouth? I'm not sure about Leflunomide really but it's the only main DMARD left for me. Maybe I will find that things improve once I'm off Hydroxichloraquine you never know! Mat x

trepolpen · 5. Mar 2013, 17:02

hi Mat , dont blame you realy , had same thing with Enbrel , had bad reaction & caused a lot of pain & after talking to the Rheumy nurse came off it , the drug worked realy well but gave me so much pain with the injection site & starting new anti-tnf drug this month

do what your GP said , come off Hydroxichloraquine fisrt & see what happens & if thats what is causing the problems & maybe later try coming off MTX & onto something else or Hydroxichloraquine again but taking nothing & you will end up crippled & in a lot of pain , those of us with a lot of joint damage can tell you its not much fun

Mat48 · 5. Mar 2013, 18:05

Thanks Trepolpen. Its a weird thing coming on this forum - I often feel I've been seen right through and found a bit hopeless?! I am feeling really hopeless just now because on one hand I so value my ability to move around and use my hands and wrists and not to experience pain - but on the other I find taking these drugs makes me feel very alone in my everyday life? My friends are lovely but they don't really get the consequences of these drugs or of the RA and I've long since given up mentioning it. My family notice that I exercise and rest more in equal measure but again they don't get it.

And if I ever do yet and explain the drugs and how sick they make me feel afterwards I get these blank looks and then they say things like "oh you shouldn't really be on such awful drugs, you look too well to need them? how can you justify poisoning your poor body? - have you tried cutting out tomatoes yet? Have you tried shiatsu or acupuncture?". It does conspire to make me feel even worse somehow. So thanks for keeping it real for me re crippled joints etc. Hope the new anti tnf works out better with no side effects. Mat xx

stickywicket · 6. Mar 2013, 04:31

Arthritis is isolating. We are different. We do things differently and often don’t do things at all. The DMARDS are ‘different’ to the sort of meds that most people use ie they don’t make us better and, in some ways, they make us worse but, without them, we’d be worse still. It’s a strange old arthritic world.

How many times on here do we tell people that friends and family are not really going to understand? We suggest the Spoon Theory and the Gorilla in the Room but it’s only to give an idea. Try this, try that, try the other. It cured my neighbour’s mother’s friend. Then they look at you expectantly, waiting for you to get better. And you feel you're letting them down when you stubbornly persist in your disease :?

Mat, you have to know and accept your position. You have RA. The GP and the consultant both believe it and so must you. You must believe it enough to take the nasty meds and, if absolutely necessary, the side-effects because without the meds you’ll get worse quickly. You can ask for the meds to be tweaked, altered, used in different combos but, at the end of the day, you’ll still have to take some and be able to explain to those well-meaning friends that cutting out tomatoes alone won’t cure you, nor shiatsu, nor acupuncture. You need the nasty stuff because, without it, life gets even nastier and, much as you love them, please would they stay away if they have a cold or a virus :roll:

Mat48 · 6. Mar 2013, 04:50

I agree wholeheartedly with you SW. The thing is that at the moment I feel too well in my joints to have RA and to justify such aggressive and sick making drugs. But someone posted on NRAS that they are in big flare for a month after a long remission and having not taken the drug route at all. Then another came in to say snap - also in lots of pain.

So in my view it takes courage to agree to the drug route, although in my subconscious its been the other way around until today - and I felt cowardly just agreeing to everything I'm advised to do by health practitioners.

The courage it takes is not only about putting up with nasty side effects and feeling like a poisoned guinea pig, but also standing up to all those who say "oh my sister has that too in her thumbs but she wouldn't go down the drug route?!" or "are you mad - do you know you are just a victim of the pharma business?!" Or "why on earth are you taking those awful meds - you look fine to me?!". Its so waring and takes so much stamina to withstand it when feeling crap?

But I do know you are right SW don't worry. I will get my courage back again soon and I slept well with Amitriptyline and Buccastem last night so my resolve to keep head held high is stronger again! Mat xxx

dreamdaisy · 6. Mar 2013, 05:01

I've had oral thrush for years now. There's no point in taking meds to get rid of it because I'm still taking the meds that cause it. I have a disease that has a tremendous impact on the whole body (not just the joints) and yes, those without it have no idea what life can be like so just thank them politely for their nonsensical suggestions and make some of your own when they complain about a twinge in a knee or have a little sniffle. (Knee twinges? Oh, I rub the inside of a banana skin against it and that stops it immediately.)

I joined the forum in April 2010 and it didn't take long to notice the repetition of topics, simply because everyone who joins is new to all of this and is therefore, somehow, different to the rest of us who have been living with arthritis for years. We're all in a club we would rather not have joined but there's nowt to be done about that; we have no choice about having an auto-immune arthritis but we do have a choice in how we are going to cope and deal with it. Sometimes it does indeed get all too much, even after sixteen years of it I still get down every now and again (today is one of those days) but I shall treat the arthritis with the disdain it merits and plod onwards and sideways.

I feel I've offered as much support as I can for the time being so I shall wish you well and hope that things improve for you soon. There's no doubt you are struggling mightily but you're not the first to do so, nor will you be the last. Only you can find your way through and hopefully you will be able to use your experience of this tough time at some point in the future to help all the new ones who don't know (as yet) that they'll be finding us. DD

ichabod6 · 6. Mar 2013, 08:28

Hello Matt,

Rather than coming off all medication completely why
not consider reducing the dosage.
The prescriptions written by your medical team are not
written in stone.

Mat48 · 6. Mar 2013, 09:38

Thanks. I'm keeping an open mind. Just got some stuff from the chemist called Glandosane (very apt if it keeps me sane!?) which you spray into back of the mouth as needed. Its a synthetic saliva designed for people on chemo and with oral hygiene or other problems and it seems to be working quite well. Its making me wonder if this bad taste is the MTX or maybe Sjoegens or something relating to the RA perhaps?

Other good news is that I'm not experiencing any nausea after last night's 17.5 Metoject for once and have been off Hydroxy for 3 days now. Feeling more hopeful that I may find a way of staying on Metoject at least. Not actually sure that Hydroxy makes a big difference to my RA but it does always make me feel slightly sick afterwards. Thinking maybe it interacts badly with the MTX for me? If this proves to be the case and neither bad taste nor nausea are caused directly by Metoject I could then maybe drop Hydroxy and move up if necessary on the MTX instead? Mat

stickywicket · 6. Mar 2013, 13:40

That sounds better, Mat. I hope it continues that way. Good luck

frogmorton · 6. Mar 2013, 14:36

Hi Mat

I am so sorry I have missed this thread :oops:

I have come in so late that you have worked it through already....l am pleased for you. I have been on hydroxy for years now and luckily it has never made me feel sick at all.

I hope your plan works out

love and ((()))

Toni xxx

toady · 6. Mar 2013, 15:10

Glad to hear you are feeling more as if there might be some various options.

Have been following your thread with interest, and i do identify with A LOT of what you have said. I also put off MTX for a long time, for 2 reasons. One was that, like you, I was unconvinced I needed it for what (at that time) was relatively mild symptoms. My diagnosis was inflammatory arthritis but I was sero-negative and had lupus-like symptoms as well. The first consultant I saw was a total clash of approach in that he would not entertain any other course of action than a DMARD, to the extent he refused to monitor me even slightly further down the line. I understood the hit-it-hard argument, and that he felt ethically unable to collude with me in a no-treatment approach for obvious reasons. I had also recently lost both parents and come out at the end of a very long period of related stress, at which point the arthritis kicked in, virtually to the day.

However my next consultant (different hospital) felt that yes I was quite lupus-y, agreed to let me take Plaquenil alone, and for a long time I did very well on it. Consultant had a solid set of people doing very well on it alone, I was told, and no reason why I might not be among them. I had no erosions, and as my diagnosis was still not hard-and-fast, that allowed me to back up my theory that I had been right to follow a different line. Not to say feel a little smug & self-righteous. Sadly at almost the point when I was going to be allowed to cut to a maintenance dose of Plaquenil, my Holy Grail, things started to go back the other way. I resisted for a good long while after but had to cave in the end. At least I felt I'd given it a shot and if I had been proved right, would have been thrilled to have avoided heavy drug therapy if it had been unnecessary. HOWEVER I know I was dicing all the while with irreversible damage, have had some deformities as a result, and I was lucky it did not backfire badly on me. MTX as it turned out did not work for me anyway but it least it allowed me to get onto an anti-TNF as well, which is working so far.

Second reason, was for me, nausea was a huge issue (I have a phobia anyway), and would have made life unbearable for me if I had had a bad time on MTX. That was difficult to convey to the rheumy team, with their unwavering line of 'there's no choice, you must get the inflammation under control'. I felt backed into a corner with a choice that was no choice. Controlling my arthritis but feeling sick & awful most or even some of the time would have been like someone offering to fix my car but taking the keys off me. I might be flexible, but what would I be able to do feeling rough 24/7? Which is why for me there is no apology necessary for 'making a fuss', no side effect is a small matter if it is ever-present and intrusive. Eg I would take the deformities I now have in my hands any day over feeling nauseous, which would not be everybody's view - it's a highly personal thing, no-one can tell you a set of circumstances is the better or worse of two evils.

Rather long post but in a nutshell, I gambled with staying away from DMARDs and it could have all turned out very differently.

Hope the new spray continues to help, and I expect it would be stating the obvious that you're already are drinking lots of water as well as the wine?!

Best of luck, toady.

Mat48 · 6. Mar 2013, 15:27

Brilliant message Toady thanks so much! Your story is very interesting to me and I am very relieved to have someone who sees exactly where I've been coming from on the loathing of meds. Glad you are now on anti-tnf although I am surprised because I thought you had to be on MTX for them to work properly? Anyway I'm no defeatist but I was starting to feel defeated by nausea and foul taste - far more so than changing shape of my hands and stiffness and lack of clench or grip in mornings etc and more so actually than I was by pain. I really do hate feeling sick and having a disgusting taste all the time

I'm not saying I feel great just now 24 hours after my Metoject because I still have a feeling that I liken to a mouse gnawing at my insides after food and I still have the foul taste now despite a few sprays of the wotnot. But I am following a new lead and don't want to blame everything on MTX all the time because it has worked very well for me mostly - credit where credit's due.

The other thing I've noticed recently is that I am struggling to read stuff in books and on the screen and to work on close up stuff as an artist. Fearing the Hydroxy might be the culprit I made my annual optician apt a few weeks ago but he said my eyesight hasn't changed in a year. I bought new glasses, that I could ill afford because I use varyfocals, and he persuaded me to get an anti-glare tint and also to adjust the part of the lense which is for close up stuff so there's more of it. But to my dismay this fuzzy vision has persisted where all things close up are concerned and I'm suddenly wondering about whether dry eyes might be the culprit now? I mean I thought they were just dry because I was so tired with insomnia - and this may well be so, but I think I might look into Sjogrens further and go back and tackle my optician because squinting at the screen all the time is just daft! Mat x

toady · 6. Mar 2013, 18:02

Hi again Mat, & glad to be able to pass on a bit of fellow circumstances/thinking.

I am still on MTX as well as the anti-TNF, sorry if unclear. Hoping to reduce sometime. I appreciate they work together but can't help think the MTX is getting a free ride, as it did nothing at all for me on its own, inflammatory-wise (though I realise it has other roles working alongside the anti-TNF).

I went straight onto MTX subcut without ever trying the tablets, probably because in the end the rheumatology team figured it was their only chance of getting me to try it at all. It's definitely the only thing that tipped the balance in the stand-off between knowing I had to take it & the brick wall of 'yes but I can't'. Wish I had known about subcut earlier as I probably would have hastened the process along & saved a year on steroid injections waiting for MTX to (not) work so I could move on. I do feel a bit 'offy' occasionally & sick toxic headachy on it, but it is minor & not unbearable in my case. I do hope you find your symptoms subside to manageable as you adjust your meds & dosages, or even with time & acclimatisation (including the mouse-gnawings!)

Sjogrens indeed sounds well worth looking into further.

rockchick · 6. Mar 2013, 18:05

Mat, I too have been following your thread with interest. I don't have any pearls of wisdom to offer, but I understand 120% how you are feeling about your meds. I think what Toady has written explains it perfectly - that's one of the best replies I've read on this forum. I can relate to it so well.

However, I wanted to say that the fuzzy vision you describe sounds exactly the same as the symptoms I had. It took several opticians and even more eye tests to establish the problem is in fact dry eyes because of the RA. It would be so bad at times, I was beginning to think there was something sinister going on, yet the opticians kept telling me my eyes were healthy. Not one of them tested me for dry eyes. Needless to say, I'm hanging on to the optician I now see.

So yes, it might be a good idea to see your optician again. Sometimes there seem to be so many things going on at once, it's hard to know which are symptoms of RA, and which are side effects, or neither of the above.

Good luck with everything
RC

Mat48 · 6. Mar 2013, 18:38

Wow another fascinating (well to me anyway!) response! Thanks so much. I plan to nip into town first thing about these new glasses because they weren't cheap! Will ask the optician for a dry eye test/swab if he can fit me in. It does make sense but then it could all be down to anxiety or imaginings as a lot going on in rest of my life just now re work, family etc. Or this blasted disease is turning me into a neurotic hypochondriac perhaps? Sort of hoping so actually because I struggle to believe in my RA and my hypothyroidism so goodness knows how I'll accept another autoimmune thingy. And I always thought dry eyes side of RA sounded particularly unpleasant like chalk squeaking on a blackboard? A bit film noir for my liking. But of course, being infinitely suggestible, my eyes now feel dry and gritty and I'm wondering why its taken me so long to make the connection?!

And Toady I re-read your first comment and now can see that you take both MTX and anti-tnf - I thought you meant the MTX didn't make any difference to your RA and so you exchanged it for anti-tnf. Was a bit baffled.

Ah well quality of life a bit further diminished if it turns out to be RA or Shogrens but hey ho. :roll: Mat x

elnafinn · 6. Mar 2013, 19:15

Hi Mat

I am hypothyroid and I was diagnosed with dry eyes years ago. There can be a connection but you may well know this already. I do not suffer from RA.

All the best at the opticians tomorrow. Thinking of you.

Elna x

Mat48 · 7. Mar 2013, 01:54

Thanks Elna. I'm beginning to realise how little I do know actually! Mat x

stickywicket · 7. Mar 2013, 03:57

Mat48 wrote:

I still have a feeling that I liken to a mouse gnawing at my insides after food

Have you ever had an endoscopy? That sounds like how I was when I had ulcers.

Wanting to come off RA meds..feeling a bit desperate

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