Can I decide what treatment I have?

Hi, I was diagnosed 2 yrs ago and put on hydroxy which worked well initially, but now not so good. I see a rheumy every 6 months for 10 mins at a clinic and the last 3 times it has been a different rheumy. The last but one was really nice and said the hydroxy was no longer controlling my RA and I should add another medicine and suggested sulphasazaline. He gave me a leaflet to read and said he would prescribe it at next appt if I was happy to start it. But next appt was a different rheumy again (and a really grumpy, unfriendly one). He said I should be in mtx not sulpha and gave me a leaflet to read with the plan of prescribing this next appt. BUT having read both I feel I want to try sulpha first. I've read up on both and mtx seems by far the stronger drug with way more dide effects and I'd like to give the other a try first. Maybe leaving Mtx until I'm really bad. But can I insist on trying something different? I also enjoy a glass of wine at the weekends while socialising with friends and don't want this hideous disease to take that away from me too! (I understand you can't drink alcohol on mtx but can on sulpha.) anyone else been in this situation ?

10 Replies

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  • Hi Tracylux

    Lots of us have had the alcohol / MTX dilemma! The advice they give varies from you can have a glass or two every now and then, to total abstinence. When I was on MTX I drank most nights (but not on MTX night) and my liver function tests were always perfectly OK. I'm not advocating that by the way - just recounting my own experience.

    Do a search on this site for MTX alcohol and you will find plenty. There was a very recent one in fact. Here: healthunlocked.com/nras/pos...

    Lots of opinions and advice regarding the mix on that thread!

    MTX is the 'gold standard' treatment, lots of people find it very effective. That's probably what your grumpy rheumy meant by you should have been given it.

    I had a severe adverse reaction to sulfasalazine and ended up in A & E.

    Whether you can choose will probably depend on your rheum team and (by the sounds of it) who you see on the day. I believe 'failing' on MTX is one of the qualifying criteria for biologics. It certainly used to be. You can certainly express a preference and explain your reasons (honestly 😀). You might be surprised.

    All the best.

    Ade

  • I was on Methotrexate injections and for me it was vile, caused me to be depressed and I stopped it. I'm now on sulphasalazine and hydroxychloroquine and im doing ok now much better. As someone once advised me on here, its our condition and it's up to us to make the decision as to what we take or not take. Just read up get lots of information and tell the consultant what your decision is and what you want to do. I'm sure you will make the right decision and if it doesn't work out you can go back and ask for your meds to be reviewed. Take care,im sure it will all work out.

  • Hello Tracyluc. I was diagnosed with mild Ra in Nov 2014 and started on hydroxy. My hands started to swell Jan 2015 and on Aug 2015 sulfasalazine was added on to hydroxy. My rheumy said I still have mild RA. I continued working as my hands continued swelling but I had no pain. Since I had no pain I just figured it was going to be a part of the "new me".

    Jan 2016 I woke up with throbbing painful wrists and hands. When I saw my rheumy he told me to take the maximum dose of sulfasalazine , 7 pills aday....Well it is now June 2016 and my hands are still swollen and painful. Though not as painful as before. I have been off work since January 28th.

    I see my rheumy on June 13 and I am going to demand to be put on MTX. I do not care if he still calls my RA mild.

    Sulfasalazine and hydroxy may work for some people. I wished it worked for me. My advice to you is try the sulfa, but if you think your disease is "quietly" progressing then switch to MTX. I too love wine and spirits, but I can barely lift a glass now.

    Take care

    Sue

  • Hi Tracylux.

    Sorry to hear your a fellow sufferer too,but on this site you will find that many folk will give you good sound advice and share their experiences.

    Up until Nov 2015 I was taking all 3 of those drugs.hydroxy,sulfasalazine and mtx jabs together.

    This is just my personal experience of what happened with me and if you have been reading posts on the site you will have seen that different drugs work differently for folks and the side effects vary enormously.

    I was put on hydroxy along with mtx tablets a few years ago.The mtx tablets made me feel very sick and gave me headaches and so I was put on lefluminide instead of the mtx pills.I took that for a while but again started unpleasant side effects.Then I was given sulfasalazine instead of lefluminide, but at this time was still taking hydroxychloroquine.

    I was ok for a while on sulfasalazine but it was not making a great deal of difference to me.So at that point I was introduced to mtx jabs.Starting on a low dose and slowly increasing it.

    The side effects I suffered were awful.I started losing a lot of hair ( which I was told was the sulfasalazine) and 2 days after the jab I felt awful,sickness,stiffness,nausea,headaches really unpleasant stuff.I did my jab on Thursday morning and Saturday was a complete wash out for me.I chose to do my jab on Thursday as I knew I would be poorly on the Saturday which would not interfere with my work schedule.

    Anyway in Nov 2015 I was rushed into hospital with kidney failure.It was attributed to the mtx poisoning my system.This is not a usual side effect I already have chronic kidney impairment so don't worry that doesn't happen to everyone.

    At that point sulfasalazine and mtx jabs were stopped immediately.( I can't say I missed the side effects at all ),and just on hydroxy.I told the dr that the hydroxy on their own we're not very effective but I was told if I stopped them it would bring on a flare,so I carried on and am still in them.

    I was without RA meds for 5 months awaiting my kidneys to improve and in March/April time I was started on prednisolone.These steroids make me feel like superwoman and quite perky.They dont alter my physical ability to do tasks and I still need painkillers to get me through the day,.I am not able to walk unaided and can't stand long enough to boil a kettle and that hasn't changed.

    There seems to be a difference of opinion re alcohol usage and mtx.I too enjoy a glass or two of wine and I still used to have some but in lesser quantities and more selective in my timings.I tried to avoid having a drink 2 days either side of my jab or the day I had my jab so I used to have a drink on Sunday's or mondays.I sometimes did have a drink on other days but it was only one and a very small one.But be guided by your GP on this one.

    You will need to have regular blood tests for monitoring of your liver/ kidney function which will keep an eye out for any potential problems.

    So it is not my place to advise you in which order to try these drugs but I have always understood that with RA the sooner and more aggressively they treat the condition then the more effective it will be and have better results.As mtx is stronger than sulfa then this is probably the reason they have suggested it to you.I suppose if you really wanted to then you could insist on the order you try these meds but would it be in your best interests? And also different rheumys have different preferences for drug usage. You really need to be guided by your rheumy as to the way forward.Sorry for lengthy rambling reply.

    Hope you get the right meds for you.

    Crusee

    XX

  • Hi Crusee. I have read alot on the side effects of MTX on this site. I was unaware that it takes 2 days after your dose that you feel sick. How many days are you sick for? Can you still continue to work a full work week or do you need to work part time? thanks for any advice you can give me.

    Take care

    Sue

  • Hi Suzanne.

    I have read on here that some folks are affected the day after and some not at all.For me it was 48 hours after.I asked my gp about this and he explained that the drug was at the height of its toxicity at that time .Sometimes it even went on into the Sunday so it wiped out my complete weekend.I dont think it's cast in stone, everyone is different but this is how it was for me.

    I have a full time job but am lucky enough to be able to work from home.So if on any day I don't feel so chipper I can waddle downstairs in my pj's and sit behind my computer and phone,get on with my job and no one knows any different. it has had an immense difference for me to be able to work from home.

    At present I am on sick leave due to the kidney episode but intend to return full time when the docs tell me it's ok to do so.There are days that if I was working in an office I would not be well enough to go in,but the way I work I can still manage my job.

    Thinking of going part time and even retiring all together.I have worked 37 years for the same company so maybe it's me time now.

    Hope all goes well for you.

    Crusee

    XX

  • Thanks for your reply. I would love to work from home but I work face to face with the public.

    I have put in my disability papers for my company and this will allow me to work part time on my own hours. But I still have to leave my home.

    Take care

    Sue

  • Well technically speaking I work with the public too,but my company have done it as a reasonable adjustment so that I can work from home.There are times when I should attend external events but what I do is if someone else wants to go then I will cover their portfolio for the day/ week whatever is required.

    I miss out on some things but others like to go and at least that way I can keep my job.

    I also work on into the evenings so that if I gave had to attend a medical appt during the day there is never any question about me going as I more than make up,the time so it works well for both my and my company.

    Like I said I am either looking to reduce mine or retire completely.Havent quite decided yet but I think I will miss it.(never thought I would say that!!!)

    Good luck with your request for part time hours .

    Crusee

    XX

  • It is not helpful when there is no continuing care. As there is no easy way to work out which drug 'will be the one' it is a case of trial and error. Read up on the drugs - NRAS or arthritis research websites and bear in mind everybody reacts differently and you may not be affected by any side effects. Make a list of bullet points for your next appointment to enable a rational argument/discussion at your next appointment. Farm

  • Hi. I think you should make an appointment to discuss your meds with your rheumy nurse. They are there to help you and to make your life as pain free as possible by prescribing the right drugs for you. There are so many RA meds and it does take time for the right one to be found for you because we are all different, have different degrees of disease, have different reactions to the drugs and progress at different rates. I think the most important thing is that you do what your rheumy team tells you. They are the professionals and they know best. There must be a reason for them giving you the drugs you are on. I am on mxt and have been for 14 years. It has been great for me with little or no side effects and I am in remission. There is no harm in asking if you can take mxt but be confident that if you are told it isn't what you need then it probably isn't. I hope you get an appointment soon. Good luck.

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