Why only Sulphasalazine?

Hi - I wonder if anyone can think of a reason why my rheumy and GP only offer me Sulpha as an alternative or a combi drug to the MTX I'm taking? I took it for a while last year and hated it and had a bad reaction to it - so why would they ask me to consider taking it again and never offer me other DMARDs? I'm sure Plaquenil/ Hydroxy is less toxic than Sulpha - so is it about the expense perhaps or other side effects that they anticipate for me? I wonder if it has anything to do with my eyesight as I wear glasses and the optician said that Plaquenil is the only drug that would warrant for me to have more frequent NHS eye tests? Does anyone know anything that I might not be considering or do some rheumys just not offer all of the DMARDs to their patients to research and choose from?

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  • Hi Tilda.,

    I really don't understand why, my eyesight is terrible but was put on hydroxywhatsitsname.....

    and surely the sooner you try a 3rd alternative the better as if it does fail then your eligible for an anti-tnf...

    strange, hopefully someone will have an answer but think only your consultant can answer that one...

    while I'm at it, I'll reply to you here from your reply to me (haha you know what I mean!!); feeling even better today, stupid paranoia of taking RA meds but then again small price to pay for getting your life back :)

    Has your GP decided you MTX isn't working for you then?

    xx

  • No he hasn't - I think the wires have been crossed somewhere between me, him and the rheumy to be honest - and that's the downside of having to use my GP as a third party really. I tried to speak to my GP this morning because I know that he can be a bit forgetful (too many other demanding patients!) and isn't the greatest listener alwaysr? Also I'm aware that I can be a bit unclear - mainly because I feel so unclear about everything!

    And you know how it is when we only get a ten minute appt and then only see a rheumy once in a blue moon in my case for 15 rushed minutes? I end up going in all directions at once because I panic that I won't convey everything I need to - so he gets overloaded with info and hasn't got a complete picture of what's going on with me then.

    So he phoned me back this evening just an hour before my next dose of MTX and he said he'd spoken to my rheumy today and told him that he thought I would refuse to to take any more MTX because of the depression and that I was currently taking 12.5 mgs but was hoping to drop out of it altogether now?

    But when I saw my GP last week we spoke about this and he explained that he thought the depression related to the RA and the shock of diagnosis and told me not to stop taking the MTX because of my ESR of over 50 and symptoms. So I was a bit baffled today because he seemed to think I'd ignored his advice or that he'd never given me this advice to begin with? So he was pleasantly surprised when I told him that I was happy to keep taking it and wanted t move up a dose or two now as well

    So then I managed to explain that I had gone back up to 15mgs because of his advice - and although I do still believe the bouts of depression are drug related I'm prepared to put up with them if I don't have to cope with pain as well. He agreed and said he and rheumy both think that it's pointless taking the MTX unless I take it at a dose that's high enough for me to get the good out of it as well as the side effects.

    So now the aim is for me to move up to 20mgs over the coming month. He said rheumy said it was either move up to 20mgs of MTX or take Sulpha again at a smaller dose in combination with 12.5 or 15mgs of MTX. So I told him quite clearly, once again, that I hate the Sulpha and had even worse depression mixed with nausea and all body rash and lumps on my neck with the sulpha - which my GP put me on last year himself and he should remember! So why aren't they offering me the Hydroxy one I wonder? I thought most people went on that first before trying Sulpha and MTX. I can see why my GP may not have the latest info on how to treat RA with combination therapies but surely my rheumy would?! Any how I feel more frustrated than ever but at least I've now got 7 little pills disolving slowly in my gut rather than just six I suppose and soon it will be 8 little pills!

    So glad you're not on death's door with horrible shingles anyway. TTx

  • this is just awful Tilda, really not fair, it does seem like no-ones really taking in the whole picture and discussing your situation, thats so upsetting, you need to know whats happening and what your next step is if the hydroxy fails to do its job rather than being passed pillar to post!!

    I may have become depressed if it weren't for the support of the RA team where I am, I have confidence in them which you can't have whatsoever.....

    when I reached the 25mg of mtx last year I was all over the place, mostly anxiety, a bit weepy and terrible nightmares, soon as I told the nurse I was told to reduce it, I totally agree that it would cause depression. xx

  • Thanks Williby - everyone (OH and friends) seem to buy the GP's take that the depression is caused by coming to terms (or failing to!) with having RA but I'm not like that. I am the type of person who tries to term lemons into lemonade as I know I've said before - that's how I work as an artist and as a mother and as a friend. I don't generally dwell on things unless there's a purpose to dwelling on them and as there's nothing any of us can do about having RA there's no point on dwelling on the unfairness or trying to ignore or fight it (although I think I've been trying to fight it rather too much) best just try and make the best of it and make sure I learn as much about it as I can.

    So I really feel sure that the MTX is causing the depression because it's only for a few days a week after taking it. I tried the cognitive therapy site my GP offered me instead of anti-d's, but it just felt totally irrelevant? "Maybe you are recently bereaved or have been made redundant perhaps" the soft voiced man says and I just ended up shouting back at him "NO I HAVE NOT - Ive got RA!" - I am far too literal for such generalised stuff - I can't see how this could help me?! I don't think I'd even be so depressed if I had someone who listened and took the trouble to explain things to me. TTx

  • Hi Tilda

    I'm in the same boat, but the other way round! I'm currently on Sulfa only and, although I've now been increased to the highest dose, I've been told that I must re-introduce MTX soon. I had a very bad reaction last November to MTX at 15 and 20mgs, but they are re-introducing it at a much lower dose and then gradually increasing it to see if I have the same reaction. Why? - don't know. I assumed the reason was because of the criteria for getting the biological drugs is to try and fail MTX first, but this wouldn't apply to you!. At New Year they were going to put me on Leflunomide, but this hasn't been mentioned since, only MTX!

    Trish x

  • Did you know that if you can bear to inject yourself, you get more benefit from MTX for a lower dose? Along with less nausea etc. It was a really good treatment for me, (till recent events!)

  • It's nuts isn't it? Why oh why can't there be a coherent UK wide NHS strategy for treatment of patients with RA? In my case (as in yours) it doesn't seem to have any bearing on how I react to these drugs because I've never even been assessed or monitored for disease activity since November - beyond having a few ESRs (which I asked for) that were between 40 and most recently over 50 still after 5 months of MTX. Then my GP tells me I shouldn't read too much into this but apart from return of pain it's all the info I've got!

    I conclude it must all be down to the individual rheumy who has a certain affection for some DMARDs over others - based on their experience over the years i suppose. It worries me because it lessens my faith in the doctors who are treating us and they seem to forget that many of us have decent brains and access to sites such as this and all the information about the latest treatments at our disposal on the internet. Sometimes I really do feel I know too much now - which is really daft! TTx

  • Do you have a MTX blood test results monitoring book? So you can see for yourself the pattern that appears. I hope they are measuring more than your ESR.

    Mine includes CRP; Hb;MCV; etc... 12 measures altogether. Not that I am sure which ones really matter.

  • No nothing like this Phoebe - I have a DAS score book that NRAS sent me when I joined but I would feel like a fish out of water if I tried to show that to my rheumy or GP. I did get a print of my bloods the first time I saw the rheumy and copied it but that was almost a year ago. I've only seen him twice and it's been pretty rushed. TTx

  • Plaquinil was my first dmard, then mtx added gradually, then still moaning 6 mths later, so rheumy mentioned anti tnf vaguely & set ball rolling in that direction. So, was on steroids until Humira was approved, this n time stabilised bloods, no inflamm in mine now, and I think that's the best u can hope for.

    Am on less plaquinil now, still oin mtx as when she lowered it to 15 from 20 I got increase in joint pain - real or imagined I'm not sure.

    When I was going thru all the above , I knew nothing compared to now, and just followed orders. I understand a bit more now. I never had DAS score,never even heard of it, or NICE guidelines, and doctor scoffs wheni say 'they' think or have shown, she always asks who'they' are .... Smart eh?

    My rheumy promised me day one, that she would get my blood inflamm levels normal, of course I did nt understand that was nt a promise of a cure, but close enough. Sadly, I have some joint damage, not as bad as most on here, but nasty enough.

    How could she say this? she also couldn't say how long that would take. That is what happened, and if that is possible fr me why is it not possible fr very one? Her answer to that was, I did as I was told, they caught me early, and I tolerate the meds huh!

    I always think when reading others stories, the common thread is, you get the biologics quicker if you have RA factor if you are lucky, but much much more slowly if not for obvious lack of diagnostic info, if hat makes sense. I would say cost is a huge aspect of treatment, both as a public or private in states.

    Hopefully these meds will get cheaper as time goes by, and that will be when they are able to make tablet form, but of course 'they' won't make so much money on the consumables (injections)

    So...

    Gina.

  • Gosh it's quite a gamble these doctors take with us isn't it Gina? I'm just following orders too I think but unlike you I know a bit too much already about the impact that following some orders might have on me - such as taking Sulpha. The thought of going back to those yellow tablets which made me feel so nauseous from the outset and led to a sunlight reaction that was pretty extreme plus lumps all over my neck is not one I'd take lightly - especially when i'm well aware that there are other DMARDs they could add in on top of MTX now that might do the job better. I still don't know why there isn't a clear path of DMARD treatments that we all get put on in the same order - unless there are obvious mitigating circs such as much more aggressive disease or another drug or illness which might make a DMARD incompatible/ inappropriate.

    So I plumped for an increase in MTX over combination of Sulpha and MTX at lower dose and am not regretting this so far. Perhaps it is all psychological, but having taken 7 tablets of MTX last night I feel very tired this morning but also my wrists are a lot less painful this morning although my ankles are still tweaking nicely on the stairs!

    What I'm wondering is if the increase in dose levels out re joint pain again then perhaps the depression won't happen this week - if the RA pain is the cause if the low moods as I think it might be (constant low level pain is pretty depressing after all!). And if I do get really low again tomorrow and Friday then I'm going to conclude it's the drug and ask my GP for an anti-depressant to take after my MTX dose each week. Well that's my plan anyway. Now dog walk followed by Tai Chi class here I come!

  • It is baffling isn't it - and why don't doctors treat us as rational human beings and explain their decisions! We may not have medical training, but if things are explained properly we can grasp quite complicated things... I can work the dishwasher and put together flat pack furniture with no problem unlike my intelligent OH.

    From the reading I've done, Sulpha is considered to be more effective with more people than Hydroxy, but there's not much in it. I wonder whether the Rheumy has remembered that you had a bad reaction to Sulpha? Either that or if he thought that you were going to ditch the MTX then wanted to give you something more likely to be effective for you than Hydroxy?

    And yes Hydroxy does have the extra added side-effect of (reversible) deposits on retina which is why need regular eye tests, but I don't think that's a reason not to prescribe it. My eyesight's not brillaint and have family history of eye problems and that didn't seem to bother my rheumy when she gave it to me.

    Have you asked flat out whether you can try 15mg MTX plus Hydroxy?

    Px

  • Thanks all. No I haven't had a chance to ask that really Polly because this whole thing has been conducted in third person in form of my GP yesterday and the physio previously (during a choir rehearsal?!). It's all pretty unsatisfactory and there is definitely an assumption being made that I'm too neurotic about side effects - reading things where there are none etc.

    The trouble is that it wasn't the rheumy who directed me to take the Sulpha it was my GP - because he knew how long I'd have to wait before his referral happened and wanted me to get some cover because he felt sure it was RA (positive factor and high ESR and symptoms). So he put me on Sulpha and I was only on it for about 4 weeks and then got this really itchy all body rash and lumps on my neck and ear. At this stage I didn't even have a clue that Sulpha came with serious side effects because the pharmacist just handed it to me with no sheet and my GP didn't mention side effects so I wasn't looking for any.

    But as soon as I started on the Sulpha food tasted bad and I felt sick and that only stopped when I came off it. And I only came off it when I showed GP the rash and the swellings and he said come off it those are listed side effects and you can't stay on it with them. Then he got a letter from the rheumy saying he would see me in 7 weeks and please take me off the Sulpha and put me on steroids until he'd seen me so the whole thing is a bit of a sorry saga really?!

    If I had met with my rheumy I would have explained all this of course. My GP is great but he is seeing many patients with different things every day so he can't be expected to remember my case history and he didn't realise just how much I loathed that Sulpha until I said so to him on the phone yesterday. I did mention Plaquenil to him when I saw him a week ago and he just nodded and said yes that's one of the possible drugs I could be asked to take by the rheumy as well as MTX but he seemed to favour me trying Sulpha again.

    When I last saw the rheumy in November he said that I could try either Sulpha or MTX which were the usual first line DMARDs he offered newly diagnosed patients. I pointed out I'd already tried Sulpha and had bad side effects so that left MTX. He never mentioned Hydroxy though so maybe he doesn't think much of it? Or perhaps they want me to try Sulpha again so they can see for themselves the side effects and cross it off their list officially because the last time didn't count? I will make another GP apt for 2 weeks time and get my bloods done then write it all down this time - I think that's all I can do really. Off to bed now as the 17.5 mgs of MTX has wiped the floor with me again. I'll ask him about injections of it instead although it doesn't make me feel sick or mouth ulcers - but hair is getting much thinner at the front. TTx

  • Hi Tilda - you should ask for that blood monitoring book as you can keep checking results and point out patterns and things that the doctors often miss or forget due to having so many patients.

    Also re hydroxy, you should ask outright if you can go onto it. I wear glasses and was told I would need to have annual eye checkups - been on it for 18 mnths now and no problems. Like others it was the first drug introduced before I was even completely diagnosed, along with an anti-inflammatory, and they have been constant throughout the trials of other DMARDS which is why I believe that compared to many my disease has been kept pretty well under control. My rheummy said that sulpha and hydroxy are about the same strength and are never strong enough on their own (which I can definitely tell), but I think the hydroxy has helped dampen down the disease while trying out MTX (which I lasted on for 6 weeks initally before problems), then leflunomide (which caused problems after aout 6/7 months), and now back on MTX and all going well at the moment, but on lower dose than I was before when I had problems.

    Hope you get it all resolved soon!

    xx

  • Thanks Heather. I am trying to get my head round so many issues just now that I've decided to simply write a letter to my GP explaining where I'm coming from. I end up leaving these monthly consultations with him feeling so frustrated and misunderstood and just think it will be easier for him and for me if I put it in writing that I can't tolerate Sulpha and that I'm fairly certain that the MTX is inducing bouts of exhaustion and depression in me each week and I'd like him and my rheumy to consider this and treat accordingly instead of assuming I'm just a neurotic woman!

    I will stick on the MTX and go up to 20mgs (bloods permiting) because I want to tackle the RA and there's no point in taking it unless it's at the right level to do the job. If I hand in the letter before I see him hopefully he'll read it and get what I'm saying in time for Friday week and then we can discuss the option of Hydroxy added in and injectable MTX or anti-depressants etc in the ten minute consultation time and I'll come out holding my head up high with a proper plan.

    What d'you think does this sound a bit OTT or quite sensible? TTx

  • Yes sounds sensible, but pity you have to deal with your GP who isn't a specialist in RA! I agree there is no point in taking MTX unless the right level to do the job, although it could also do the job at a lower dose with something else in the mix ...I know where you are coming from with the exhaustion for a couple of days each week - I'm only on 12.5mg at the moment, but am exhausted for the day and day after taking it each week. However I'm also on a very lose dose of pred (only 5mg on alternate days as I'm coming off it) as well as the hydroxy and anti inflam and all seems to work okay together (do have days that are worse than others and do feel aches and pains, but nothing unbearable)....

  • Thanks that helps a lot to know. And yes it is a shame I'm only able to talk these things through with my GP and not a specialist I agree - it frustrates me a lot. But currently I feel I've got two male doctors who are jumping to conclusions about me and not really getting direct and honest review of my meds and that's what I need to tackle - and I think my GP is where I have to begin. Glad the drug combi is working well for you to date - long may it last! TTx

  • Hi Tilda,

    What a nightmare!

    Do write to your Gp and send a copy to RA Consultant, then you all know you are on the same page!

    Also if they write to each other about your RA - ask at your doctors for a copy for your file.

    This makes a lot of sense for all concerned.

    I'm off now to take down my Art Exhibition - you mentioned you are an artist- what do you do ?

    Cheers

    Jan

  • I work with my OH and we are conceptual artists who work with embroidery at the moment although we were trained as painters. What kind of work do you do Jan? TTx

  • I like the sound of that.....I am doing kiln formed glass at the moment and the Exhibition was with 6 other artists. It was good but so stressful, glad it's over but sold 5 pieces so that boosts the old morale!

    Jan

  • Sounds great Jan - well done! TTx

  • Hi T

    I was offered sulph as part of a tripple therapy with mtx & hydroxy (plaquenil) and I refused it. I refused based on the potential side affects.

    If you don't want to take it, then don't and ask for plaquenil instead. You've got to be pro active with your disease and if you don't want something say so.

    You must have regular eye test - once a year, but thats it. It makes you sick for about a wk, and I've experienced nothing else after that.

    Ring your gp and inform him you want to try plaquenil as you have already tried sulpha etc. etc.

    Good luck and lets us all know how you get on

    Sci X

  • Thanks Sci and Jan. I've written an assertive letter telling him some more about my background as a child in the hope that it makes sense of why my judgement about side effects is to be trusted. I ran it past a close friend and my OH (although he had just come off a few night shifts in a row!) and both said it was good after a bit of editing.

    I told him that if the increased dose of MTX doesn't seem to be working enough then I'd like to try Hyrdoxy and that I will not be trying Sulpha again because it made me ill (reminded him in what way so it's there in writing). When I see him a week tomorrow I'll tell him that he's welcome to copy it and send it to my rheumy but I don't have my GP or my rheumy's e-addresses so he will have to do this for me (or give me the e-address). It feels a bit of an outlandish thing to have done but I do feel better for putting it all down in writing and I'm hoping he will see me more for who I am now rather than just another pesky patient. TTx

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