Decisions Decisions, In a quandary as to what to do next

At my latest Rheumy appointment I had a DAS score of 4.24 with ESR now down to 33 and CRP at 11, but this was after a week's annual leave and just resting up.

We discussed the fact that I would really like to be able to do my job (part time IT Lecturer) and still be able to go swimming or for walks with my partner on my days off (we met through our love of sport and being so fatigued and in so much pain most of the time is having a devastating affect on our relationship). We thus decided to try adding Sulphasalazine to my current prescription of 25 mg injectable methotrexate.

However, I had my fortnightly blood test (so only on the two a day, ie half the doseage that I was to work up to) and got a call from the hospital telling me to stop the sulphasalazine immediately and have another blood test next week before going back to discuss results on 11 March..... The addition of sulphasalazine made the nausea and fatigue horrendous and also brought on another flare in my shoulders, elbows and hands (not sure of the inflammatory markers from this test as the doctor was on her rounds so it was just a message via secretary) ... so my quandary is - do I just stick to Methotrexate and increase pain killers (adding ibuprofen regularly) as it has got my inflammation down to 11/33 or do I try something else? When I read some of the blogs where you have much higher CRP and ESR I wonder if I am being unrealistic in my wish to work and play a little. Feel like I have no-one to talk to as family live so far away and partner just says "its up to you" and just distances himself as it scares him to see me in pain and getting upset. I feel so confused and alone when it comes to answering "what next?"

14 Replies

  • I would stick to what you have for the moment and wait and see the specialist on the 11th march. Its only a couple of weeks away if you can manage until,if not speak to your gp and seen what they say. xxx

  • ibuprofen unless prescribed by your consultant is not recommended x

  • I don't think you're being unrealistic at all. It took me quite a while to find a mix of drugs that suited me, but I'm very glad I persevered, as now nearly normal. Or at least sufficiently normal that I can do things like go for a walk with OH, even if a bit slower and shorter than he might prefer. I found it really did help to say to my consultant that I was aiming to get to "normal", as then she seemed to be more responsive to to tinkering with doses and drugs rather than just leaving me on MTX. You've got a lot of life left to live, so worth trying to find a better mix for you - even tho' the process of trying them out isn't much fun either. Polly

  • I understand this dilemma you face all too well but as Sylvi says, the 11th isn't far away now so hang in there with paracetamol or whatever has been prescribed already - and discuss this more fully with them. I couldn't take Sulfasalazine because of an adverse reaction (swollen neck and ears and an all body rash) and I now take Hydrocy and injectable MTX - and like you my ESR is down a lot (they don't use CRP where I live). I was told that even 26, which I consider to be my normal range really, isn't as low enough to say I'm in remission yet. But unlike you I can walk fine and am not in much pain so I am wondering why I agreed to hike up my Metoject really - especially when its making me feel very sick again. If I were you I would aspire to normality and not take less as remission or even near. Never mind your blood markers - its reasonable to expect to be able to walk with your OH and get back to work too.

    I work and walk and even do daily Zumba - but I am increasingly fatigued although not sure whether this is RA or my meds or life or a combination of all of these. But its still reasonable to aim high as I'm sure your consultant will agree. There's still Leflunomide before anti-tnfs and you could spend a productive few weeks researching this and other options? Tilda x

  • Thats so much for the positive respinses. I mentiined ibuprofen as an anti infammatory option as this was discussed as an alternative to sulphasalazine at my last visit, but I was worried about gastric complications regular ibuprofen could cause. She did say that many consultants dont agree with ibuprofen along side methotrexate but she would agree to it as long as I didn't use it too often.... thats y I was so confused. it was only feb last year when I contracted the disease and it has been such a huge life changing traumatic year that I started to doubt myself and my desire for normality (even if its not my old normality of kickboxing 4 times a week etc lol ) thinking I should just stop whinging and just accept whatever relief and not expect anything much.

    Again thanks for ur reassurance, specially when u (tilda) told me u go to zumba that really gives me hope. Thank u so so much.

  • No you don't just settle for the MTX, you see the rheumatologist as quickly as you can get in and ask to talk about other options - of which there are quite a few.

    If you did want to take NSAIDs, then as long as you haven't been told not to, there should be no reason why you couldn't take over-the-counter doses (which are much less than prescribed doses).

    Ibuprofen and other NSAIDs don't seem to be used regularly for RA, but they are actually the drug of choice for spondyloarthritis as first line treatment - taken regularly and at full doses. I'm not sure why you would have only been offered MTX, SSZ and NSAIDs, unless they are actually treating you for spondyloarthritis rather than RA. If you do have RA then there are other DMARDs and also anti-tnfs still in the possibles list.

  • Think ibuprofen was an option due to money. when I first reached 25mg of methotrexate and suffered horrendous nausea my consultant had me taking my methotrexate split dose (half on monday the other half on thursday) for 3 months which resulted in my liver results horrendous and inflammatory markers almost as high as when first diagnosed. Only after 3 months of gradually getting worse did she finally agree to my move to injectable. So I think I will listen to u all and push for alternative when I see one of the rheumy nurses on 11th.

    Sometimes I think money is more important to them than their patients quality of life.

  • Re "If you did want to take NSAIDs, then as long as you haven't been told not to, there should be no reason why you couldn't take over-the-counter doses (which are much less than prescribed doses)."

    You should only take Ibuprofen, whether over the counter or prescribed, if you have checked it out with your GP or rheumy first and it shouldn't be taken regularly with MTX. I would pay close heed to Summer over this one with all due respect.

  • Thanks Tilda, it was my rheumy registrar that suggested it. However I think I will avoid this (and listen to advice from those with the disease) as my consultant is loathed to alter meds without blood result evidence of inflammation. When I show her pics of inflammed wrist she plays it off as palindromic or tries to say I was coming down with an infection or cold.

    Lets hope they offer me an alternative instead of fob me off with nothing.

  • Mine has been the opposite with me and says it's visible swelling and symptoms that count - he doesn't treat the bloods but the person. But I didn't see him last time and haven't had a chance to put this to the test thankfully.

    Re partners. Mine really struggles to comprehend, lovely as he is. I told him tonight that I just really want to quit MTX after 16 months on it - and he tried to dissuade me but how can he know how I feel - like I'm being poisoned with nausea and the foulest taste you can imagine in my mouth? He just shrugged and said "yes but at least you can do your zumba and walk the dogs now" which is entirely true but it's a fine balance isn't it? No one who doesn't take these DMARDs or live with RA can really comprehend the enormity of what we have had to take on board can they? Tilda x

  • Never mind the numbers in the blood tests, it's how you feel that counts. If it is badly affecting how you live your life, then the progress isn't yet good enough. Hang in there. There are other drugs they can try, and don't allow yourself to be fobbed off, especially if it's affecting your relationship with your partner.

    Dotty x

  • Thanks Dotty, I have always been sporty and adventurous all my life. That was my life choice and what I loved. So not being able to cycle, walk any distance or even swim is killing me inside. The last doctor I saw took this on board and allowed me to try sulphasalazine. But im seeing the nurse this time so not sure what their advice will b. It is really frustrating when they just tell me im not taking this disease seriously and tell me to stop overdoing things when all im currently managing is 3 days at work followed by day in bed and resting over weekend so I can cooe at work again.

    The support everyone has given me on here is brilliant. Cant thank u all enough :-)

  • It's hard to find a good balance, and I have found myself reassessing my priorities. I gave up pretty much everything to be able to prioritise work - hobbies, housework, looking after my daughter properly - and I still couldn't manage the job, but at least I know I gave it my best shot. I have come out of the other side with different views about how to use my time, and make the most of my opportunities.

    On the subject of nurses, I met mine for the first time last week and she was amazing. I guess the quality of nurses varies just as doctors do, but be optimistic. Mine in fifteen minutes put a whole range of practical things in place to help me, and I came away hugely relieved by the whole experience.

  • Hi nottsetcetc:-) I know what you mean about trying to do too much when you used to be sporty. I was the same. Coaching a junior footy team, squash, golf, walking. Then being hit by RA and having to stop. It's also difficult for your partner as well to try to make them understand what you are going throgh and why you are tired a lot of the time and can't do the things you used to and all the drugs you have to take. I found it difficult to get support/understanding from my wife as she couldnt offer any help with drugs etc.

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