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

Mat48
Mat48 Member Posts: 1,075
edited 7. Mar 2013, 04:22 in Living with Arthritis archive
So I'm seeing my GP tomorrow. I don't have a rheumy nurse and next consultant apt isn't until August and this is what I plan to give him to read (see list below). I have to give a work presentation an hour after my appointment and I know I'll be on edge. But I really need to get this settled finally I can stop this raging battle I'm having with my meds.

To avoid faffing about trying to explain myself to him I've decided to just type it all up and then let him read it after he's done my bloods. I'm so stressed out all the time just now and think I'd actually rather just have my RA than dread injecting MTX and the sickness and horrible taste and all over chill that will inevitably follow. This week the foul taste is still here and it's almost time for the next dose. I don't know if the taste is just the methotrexate or if it's the combination of Hydroxichloraquine with 17.5mg MTX and I won't know unless I stop them both I feel. Is this completely mad or does anyone here understand how I feel?

Pros of quitting MTX and Hydroxy ---Cons of quitting MTX and Hydroxy

Constant foul taste would go away ---- Pain and stiffness of RA return

No more nausea for 2 days a week---- Fatigue returns

Mental focus might return
Pins and needles might return

Less fatigue and insomnia
More tiredness and insomnia

Skin might improve (small blisters) --- Exercise would be more hard

Chills and icy cold hands might
locking joints at night again lessen

I could start taking another DMARD --- ESR might rise again

Find out whether RA is still around
Risk permanent deformity
If you get lemons, make lemonade
«13

Comments

  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Mat, I don’t think your GP can take you off meth (though I know special ways of doing things have to operate where you are) but you are clearly upset and very anxious about the whole meth thing. I can see why the whole thing is getting to you and I think it's a good idea to show him this so that he knows too but you know RA does require some strong meds, if not meth then something else. Please don't just consider taking nothing. It's not a long-term option and that comes from one who can no option but to take next-to-nothing for years

    I don't know what he will or can do though my guess is he'll try to bring forward your appt with your consultant. Maybe you could have a steroid jab or even go on a short course of them to tide you over. There are, as you know, options other than meth and maybe your consultant will decide it's best for you to try one.

    Whatever happens tomorrow I hope it goes well for you and you emerge feeling happy about the outcome.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    the point of the drugs is to stop joint damage & once its is you cant get it back , some of us the RA is so severe I had to give up work within a few months & even being on Mtx + Sulpha needed joints fused within a few years

    with Mtx it helps if you take higher folic acid but not sure about the nausea because never had it , as for the injections , went back on tablets myself , only problem had with Mtx is liver blood test raised & had to come off it for year & endded up with high CRP over 30 & endded back on Mtx but with 5mg folic acid six days a week which sorted the problem

    one other thing is mild depression goes with long term illness & you could talk to your doctor , hope you feel better soon

    ps just seen what stickywicket & totaly agree with her
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Oh Matt, it is indeed a quandary and we all feel like taking a break from all the meds at one time or another.
    I am glad that you are going to discuss this over with your GP tomorrow. I must admit when I was on the tablet form of mtx I used to have a metallic test in my mouth which was really horrible. It did ease off after a while but I did try all the tricks in the box. I am now seven weeks into injections and in my case it has made a massive difference to my nausea and I feel more ‘with it’.
    Could you go back onto the table form and split the dose? I found if I ate something starchy i.e. porridge, spuds that it did help but even with that I knew going up more than the 17.5 would have been the last straw so to speak.

    Sticky has summed it up and as she says there are other things that you can consider that can help.

    As for sleep well I can’t help there as I have been walking the halls most nights for years anyway.
    The blisters sound like a reaction so your doctor might have some thoughts on that for you.
    I have been on Hydroxy for about three and half years with no problems but I have started with tinnitus so I am wondering if there is a connection.
    I think it is a good idea that you have made a list as it does start the conversation off.
    I have always been a reluctant patient when it comes to any meds and it has been a hard lesson to learn. But I have got damage and I do think if I had not been so set in “getting on with it” then I would not have as much.
    There are so many things coming down the line now from research that there is lots of hope.

    Hang on it there and see what your doctor has to offer. I am sorry that you have to wait so long between appointments.

    Good luck for tomorrow and I do hope your presentation goes well too.
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Thanks all. I know it's a risk coming off these meds but I have been on MTX for 16 months and Hydroxy for a year and this taste comes and goes all the time plus chills plus nausea. Some weeks it seems tolerable and others it's hellish. I had my dose of Metoject raised a month ago then had a week off because I had a heavy cold. I found that despite increase in folic to 4 per week it's still a case of feeling really lousy.

    But I would put up with all of it apart from the foul taste, which I had on the pills and now on the injections and it's just making me miserable. I haven't had any pain since last June - although my ESR was still high and I had increased stiffness and all over pins and needles for a month which apparently was active RA. I am pretty robust about pain but not so about feeling sick and having a horrible taste in my mouth. It makes me feel as if I'm poisoning myself - which in a sense I am?! :roll:

    I was thinking of stopping the meds and then after a break - if the RA comes back then I could try Leflunomide. I've already tried Sulphasalalzine but had a serious reaction to it. My GP can authorise me to stop but he wouldn't without the rheumy's approval, so I expect he will write to him or email explaining my feelings. As it happens the rheumy is up here at the end of this week but the clinic will be fully booked now.

    I just keep wondering if it mightn't have all gone away and how would I ever know. I realise this is very unlikely but it niggles away at me. I think my fingers are drifting very slightly on my right hand but I don't think they have got any worse. My liver is always a bit high but has only been seriously over normal range a few times. I feel very self indulgent moaning about the horrible taste when so many are in serious hell with this disease but it just seems to colour everything and makes me really low. Mat x
    If you get lemons, make lemonade
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I think the 'feeling low' might account for some of this, Mat. It's hard to see the bigger picture when one aspect - the taste and nausea - is dominating so much of one's life.

    If your RA has been active as recently as last June I doubt there's any chance it's just gone away enough for you to even cope without meds without even thinki ng of long-term effects. However, as I said, I understand it's hard to think of long term effects when the immediate side-effects of the meds are so persistent. I wish you luck tómorrow. Let's know how it goes please.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Thanks SW I will. Ideally I would come off for a few months just to see and for my dratted brain to register that I do actually have this RA - and then I would be okay to start on something else - I'm thinking Leflunomide/ Arava. I don't know why I just can't accept that I do have it. After all I need to do is look at photos of swollen joints and soft tissue from last year and the previous one to know I do intellectually. But somehow I just think of myself as too well and fit to be filling my body with this stuff that makes me feel so low and nauseous all the time. Its weird but maybe its like a war that you can't believe in until you see it for yourself - or like the death of a loved one that the brain just will not take on board properly? Mat xx
    If you get lemons, make lemonade
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Mat

    I am afraid I cannot help you with the RA meds because I do not suffer from that. Nevertheless my heart goes out to you especially as at this time I am having a battle with having been diagnosed with Osteoporosis. I am strongly advised to take drugs by the rheumy who did the report on my DEXA scan. So far the two I have had to try (starting off with the cheaper ones of course because that is how it goes these days) have had abysmal side effects plus getting the norovirus inbetween I feel like if I have diarrohea, stomach pains and nausea again I will scream. So at the moment I am on nothing and back to normal if you know what I mean and plucking up courage to going back to the gp yet again to see what he is going to try me on next. I won't go on with my woes as you have enough of your own but I do kind of know where you are coming from with your pros and cons and so on. You are not alone in your battle of whether to take meds or not. We kind of know we should but ........

    I hope your appointment is productive for you.

    Gentle hugs
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Thank-you Elna that does sound like a very similar dilemma actually. Mat x
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It's not easy, I understand that. I missed at least four years of treatment (and don't I know it :lol: ) but everyone's arthritis is different. Arthritis affects our lives and our choices: our lives are affected and our choices limited. If the current hardships outweigh the beneifts then stop but only you can decide if that is the case. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    I won't just let my RA rage and rage DD but I have to somehow accept that I have got it in order to keep on suffering the side effects. If it wasn't for the taste and the nausea I would just suffer the rest (chills and facial blisters including inside my nose!) and have done so for 16 months (not without moaning a bit though!). There's no point going back onto the tabs as they made me feel even sicker and didn't bring down the inflammation much at all. If we take these things then we need to take the right amount and in the right form for us I feel. I don't know - the thought of quitting MTX is pretty scary too though. Round and round I go... Mat x
    If you get lemons, make lemonade
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I think I'm right in saying we both have auto-immune histories which should be the envy of no-one. There are other meds besides meth and they may suit you better; I know I should remember those you have tried but I don't and I apologise. :oops: It can take a deal of time to find the right combination to suit (I use the word 'suit' very loosely). DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Thanks DD - I don't know why you should remember? there are many people who come on here more often than I do and its impossible to recall people's histories unless they are regular and frequent contributors I think.

    I've taken Sulpha before (bad reaction) and am now on MTX sub cut and Hydroxy. So that leaves Leflunomide really and then anti-tnf which I don't believe my brand of RA warrants - not yet anyway. The drugs I'm currently on, the Metoject especially - have brought me to a state of near remission I feel. So it isn't a decision I would take lightly as choice isn't huge now. I could ask to reduce sub cut MTX to 10mg and introduce Leflunomide as a third DMARD if things kick off badly again - I think this is called triple therapy? But i'm very focused on less being more and eliminating the foul taste i admit.

    You are right about shared history of autoimmune stuff and I also am concerned my ESR and CRP which were consistently high until sub cut mtx was introduced in September. ESR now down to 26 for 4 months. Both my parents died at 73 from heart failure so the systemic inflammation concerns me a bit too? x
    If you get lemons, make lemonade
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Mat48 wrote:
    I could ask to reduce sub cut MTX to 10mg and introduce Leflunomide as a third DMARD if things kick off badly again - I think this is called triple therapy?

    One or two on here are on triple therapy. The only name that springs to mind is julie47, who doesn't post much now. She's on meth, hydroxy and lef I think though I could be wrong. It might be worth your asking about it as a starting point rather than just if things get bad as you could possibly get the meth down to something you could tolerate that way.

    I'm just nattered at the thought of you trying to ditch the lot. I remember how you were when you first came on here and I remember how I've myself. If you had a bad flare it could take some time to get re-established. Anyway, I hope you get something out of this appointment that you'll feel happier with.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    I made the decision to stop the Mtx as, like you, couldn't live with the side effects. My consultant happy to go along with it. I had to increase steroids until on biologics but they do help prevent joint damage.

    What is preventing you from ringing your rheumy to discuss this with them? It's what I do when I get into trouble and the nurse can't help me or she is away. I never wait for my appointment if I need help.

    Has your rheumy never discussed moving onto biologics/anti tnfs? This usually the next step.

    The other thing I would suggest is phoning the NRAS helpline. After taking Cimzia and getting very ill whilst on it I decided to come off all my drugs :shock: but, after a long conversation with them, changed my mind. They are very, very good and knowledgeable.

    Best of luck with your appt today.
  • scattered
    scattered Member Posts: 326
    edited 30. Nov -1, 00:00
    I hope I'm not speaking out of turn here, but have you considered counselling Matt? I think you need to speak to your RD about the side-effects the meds are causing, but I really don't think coming off them to experience a flare up will gain you any acceptance of RA or having to take meds.

    The feelings you have around the meds are very normal. I think we all question whether we actually need them and would like to be on as few as possible. You've said it yourself though, your disease has been much more controlled since the increase in MTX, as seen in your bloods and that your fingers haven't drifted further. If that isn't proof that you have RA and the meds are controlling it, then what is? The RD can do something about the side-effects you're experiencing and that may mean switching to a new drug. From what I'm reading though you're very much in denial that you have RA and the Side-effects from the MTX are the icing on the cake. RA isn't an easy disease to accept and I don't think any one of us accepts it completely. We all fight and rage against the disease, however we must accept it to a agree so we can work with our doctors and our medications.

    l'm sorry if I sound preachy, I don't mean to! I've just been where you are and know how hard it is to find balance. I've had counselling for my RA and my lack of acceptance led to other problems in other areas of my life. The counselling helped me work through what I felt and allowed me to come to a rational decision on my own.

    Take care.
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    hello Mat
    The others have given you lots of advice, I just want to add my support and wish you well with whatever you decide....its must be such a weight on your shoulders.
    I do like scattered idea of asking for counseling..just to see if it helps..I would hate you to come off the meds then be back to square one.
    Please let us know how you get on xx
    Love
    Barbara
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hi Matt

    Sorry you are having such a hard time at the moment, I'm afraid I can't advise about the meds as it's OA I have, I see though, you have had good advice from the rest, hope you feel a bit better soon..............tc.................Marie
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Hello everyone and thanks for all your advice. I agree that in an ideal world I would have counselling because I really am struggling and it would be so good to get it off my chest to someone who was paid to listen. But there isn't any counselling available up here really.

    My GP just scanned what I'd written briefly and said I'm on monthly bloods now so didn't need them retaking 2 weeks on. I asked him if he would just take my ESR as haven't had it done for 6 weeks but he said no wait until all bloods are done by the practice nurse in 2 weeks time. He did talk through it a bit and I explained about the foul taste. He says both the MTX and Hydroxy can cause bad tastes so he wants me to come off the Hydroxy for 2 weeks and see if it improves. If not I'm to go back on it and move down a dose to 15mg again with the MTX and see if I feel better. If not go down a bit further until the horrible taste stops.

    He said that he could understand how horrible the taste must be but he remembers how bad I was with the RA untreated and thinks I should try and avoid coming off a drug that's worked so well for my RA. Also suggests that Leflunomide mightn't give such good control as the MTX - in his experience patients don't seem to do quite as well on it but it remains as an option if we exhaust every avenue, apart from stopping the meds completely. I feel a bit deflated but really don't know what else I expected of him. He did agree that rheumies often treat RA very over aggressively to try and stop damage and pointed out that once damage occurs there's no going back. I know he's right logically but...?

    Ah well I'm exhausted now as had long meeting and presentation followed by hospital lunch followed by bring the boss home and then driving her for an hour back to the airport. All seems to have gone well though. Xx
    If you get lemons, make lemonade
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    I can understand you're feeling a bit flat and exhausted, Mat, but, actually, that sounds like a good, flexible plan to me. I hope you get the desired result and quickly.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Thanks SW you are a great support as always. Mat x
    If you get lemons, make lemonade
  • Sparkys6887
    Sparkys6887 Member Posts: 58
    edited 30. Nov -1, 00:00
    Hi Matt.

    So sorry to hear your struggling. I was 30 when I was diagnosed. I couldn't believe my luck already having a neuro condition. As my wife and I were trying for a baby I wouldn't take DMARDS so was only taking oral steroids. Every now and then I would take myself completely off my med'a sometimes gradually and sometimes in one hit just to see how i was or if the RA had gone away. The last time I did this was when a friend recommended a wonder cure. Only problem I needed to be steroid free for 8wks. I got down to 3mg the the pain was excruitiating and my step-children and wife were upset at witnessing me shuffling about unable to raise my arms above my head.

    I'm a qualified psychotherapist/counsellor and had lots of Therapy both as part of my training and out of choice. I have really struggled to integrate my RA and it has only been this last year that I have learnt to work with this part of me rather than fight it. There are charities, organizations and therapist in Private Practice who offer on-line Counselling which may well be an option.

    The other thing I did which really helped was change my consultant and request a referral to an RA nurse specialist. I'm now due to start humira as the side effects of the DMARDS were awful, though not as bad as yours sound. The RA Nurse said no-one needs to severly suffer from side effects when we are suffering enough as it is.

    Good luck, my thoughts are with you.
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Thanks so much for telling me some of your RA story Sparkys. That must have been such a worry and burden of responsibility re conception and I can see how therapy/ counselling would have helped both giving and receiving. I've been informally counselling a close friend since her son and only child died a few years ago by misadventure. Being chosen for this role by her has forced me to do some soul searching too. At times I've almost envied her (not for her terrible suffering of course) for having me to speak to and wished I had someone else too re RA and other stuff.

    My husband says I'm becoming a withdrawn workaholic now and only interested in people who are going through similar stuff themselves - not focused on or interested in his thoughts or problems. I think hes right although I try to be. I have been awake for most of the night AGAIN and now have two teens to wake and two dogs to walk as husband will be coming off a nightshift. I can't realistically see that the stopping of Hydroxichloraquine is going to make much difference to anything but I'm prepared to try it. The thing is that I'm really not in much pain at all these days unlike you so I do feel very guilty making such a fuss?

    But on the other hand this has gone on for a long time - 16 months really ever since I started on the MTX. And because both my parents died suddenly, both of heart failure and both at the ages of 73 - my mum only 3 years ago - I think a part of me is always wondering if I perhaps didn't deal with this properly and the RA was just a temporary delayed shock reaction. No one else I know of (and these would all be online friends because i don't know others with RA in person) seems to be as well as me with their RA.

    I think it probably would all return with a vengeance if i dropped the meds if i'm realistic, but at the moment it just feels like the drugs are a massive overreaction to my own condition and I find myself dreading Tuesdays terribly because of the Metoject later on today - to the point where I get in a real grump and actually feel quite tearful and low when I even see the packet containing the syringe and the sharps bin. Its not about injecting really because it was just as bad if not worse about the pills. Its just about the foul taste and nausea I think.

    But also how can I be fit enough to do 30 mins Zumba each day if I have RA? My emotions are all over the place just now but I think I have to postpone my drug holiday because I've got 3 weeks to create some designs to scale for a hospital art project and I've also got friends coming up from all over the UK for my 50th birthday party in a few weeks time so I can't really afford to find out whether RA is real or not just now! Thanks for letting me sound off here - it really helps. Mat xx
    If you get lemons, make lemonade
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    You are not in a good place right now, Mat, are you? The knowledge of the nausea to come plus the relentless taste thing (I had it while on chemo) must cloud your day and I can understand that.

    However, it seems clear to your docs, and to us, that you do have RA which, untreated, would leave you in as bad a situation as you were when you first came on here.

    Both scattered (who, to me, always makes perfect sense on every post) and Sparky have suggested counselling. You yourself say you envy your friend for whom you are providing a listening ear. I'd say go for it. As Sparky says, you can go privately or even do it online.

    I think many of us have had - short - periods when the arthritis seemed unreal. That's just the meds 'talking'. It's very real and here to stay.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
    Thanks SW - I agree that the advice and support on here is always second to none. I have written to my consultant this morning via the physio who runs the rheumy service up here. She's just replied saying that she's passed on my message of update and is sorry about the nausea etc. He usually gets back to me quite quickly via her so I'm feeling a bit more upbeat today despite yet another night of insomnia. He is actually going to be holding a clinic up here on Thursday and Friday (I know this from another online patient of his) so perhaps he will squeeze me in for a quick chat although I'm not expecting it as I was seen by his colleague a few months ago so am not in line for an extra consultation of course. I may look into online counselling but I spend so much time on my laptop for work that I really don't know if I could bear more when I should be doing stuff with my sons or the dogs or work or daily exercise. Mat x
    If you get lemons, make lemonade
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
    hi Mat , your GP seems very good & makes a lot of sence ,

    those of us that had RA a long time will remember the days when we would go to Rheumatology Department & see a lot of people who had RA a long time with a lot of deformed joints & we ourselfs knowing we would end up like them

    but everything has changed & you dont see it now & main reason is Methotrexate , it stops most of the joints getting deformed & the doctors can hit RA hard & control it & let you live a pretty normal life

    there is great things happening in RA research & at some time they will find a good treatment for RA but you have to protect your joints ,

    hope you feel better soon