Update from a gout sufferer's wife: revised diagnosis

Janet2
Janet2 Member Posts: 11
edited 24. Jul 2019, 17:35 in Say Hello
At the beginning of June I posted about my husband's latest gout flare up that started in April. I thought forum members might be interested in the latest turn of events.

His symptoms didn't improve and the pain and swelling seemed to be out of control. We both had gut feelings that this wasn't gout and, being extremely fortunate to have private health insurance through work, he pressed his GP for a referral to a rheumatologist. The GP was most reluctant and said it would be a waste of time and a waste of our money (having to pay an initial excess fee) because the rheumatologist would tell him the same "it is gout". We decided the investment in his health would be worth it and are so glad we did.

Following a raft of blood tests, X-rays and ultrasound it transpires that he has tested positive for the HLA B27 gene (Human Leukocyte Antigen B27) and he does not have gout. Following further blood tests he will commence disease modifying therapy.

His brother has gout and when he has flare ups it is always accompanied by the bright red swollen toe joint. My husband never presented in this way which was one of the many things that led to our gut feelings/gout doubts.

I wanted to thank people for their support in what has been a very difficult time and also to encourage people to press for further investigation if they have a feeling that something else is going on. My sympathies go out to all gout sufferers and chronic pain sufferers and their loved ones and carers. The pain has brought about very dark thoughts and talks of making a will (so out of character for one who has always been so upbeat and positive) but hopefully as he starts on a journey to bring this chronic condition under control all this will improve.

Sorry for the long post, thank you for reading.

Comments

  • stickywicket
    stickywicket Member Posts: 26,766
    edited 30. Nov -1, 00:00
    Hello again, Janet. It's very kind of you to provide an update. Often people just disappear and we never find out what happened to them.

    I'm pleased your husband will shortly be starting on DMARDS. If he has an autoimmune form of arthritis that is what is needed. I hope he gets on well with them as I have always done. The HLA B27 gene can be an indicator several different types of sero-negative arthritis. Does he know which he has? (It doesn't really matter as the meds are all the same.) I hope your GP will now be more aware of sero-negative types of inflammatory arthritis. It seems to be a bit of a blind spot with many GPs so you could have done a few people a favour by proving that it doesn't have to be sero-positive.

    I hope the dark thoughts will now ease but, when you're both feeling a bit more relaxed about things, it's never too early to make a will. I've done it and so has Mr SW. Not only do wills make life so much simpler, at a very difficult time, for those who are left but also they stop the government getting your hard-earned cash. There are some ultra-simple, one-page ones available on the internet and they are valid because my Mum used one.
  • Janet2
    Janet2 Member Posts: 11
    edited 30. Nov -1, 00:00
    Hello stickywicket

    Thank you for your supportive reply. He doesn't know exactly where we are at yet; awaiting results of chest x-ray and further blood tests. We're only just getting our heads round all the different acronyms and also looking for reputable sources of information. Thank goodness for forums like this.

    Our next step is to get his GP to make a/an NHS referral to the rheumatologist as insurance cover will come to an end eventually since it's a chronic condition. Thankfully the rheumatologist does have a/an NHS caseload so it shouldn't be a problem.

    It is encouraging to hear that you have got along well with the DMARDS - thank you for sharing. He is feeling more positive today, even more so having had your post read out to him. We'll get on to those wills!

    I'm new to using forums so I'm not sure what to do next. I guess my next update should go under a different forum rather than the "say hello" forum.

    Thanks again. m0150 (not used a smilie before so not sure it will work!)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello again, I saw your post last night but was tired and then somehow today ran away with me. I am pleased that the journey towards a more accurate diagnosis has begun and I hope the GP has had the grace to apologise and admit he was in the wrong. I'll be back tomorrow when I will hopefully be more alert. My best wishes to both of you. DD
  • stickywicket
    stickywicket Member Posts: 26,766
    edited 30. Nov -1, 00:00
    You're a quick learner with forum use, Janet :D You're doing fine.

    Useful and reliable sources of info are here (the grey menu above, where there is lots) and NHS Choices the title of which always makes me smile as we don't have a choice :lol:

    There are no guarantees with the Disease Modifying Anti-Rheumatic Drugs (DMARDS) which we take. The first one offered doesn't always work for everyone. Sometimes we have to try another or even two together (which I take). And they can take up to 12 weeks to properly kick in. But worth the wait :)

    The chest x-ray is to ensure there are no lung problems before we start on DMARDS. Well, no serious ones. I have mild asthma but that's OK.

    Yes, it's probably best to post on Living With Arthritis next time as more people look on there so you'll probably get more replies. meanwhile I wish you both a smooth ride :wink:
  • Janet2
    Janet2 Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi Dream Daisy, I hope you're feeling a bit less tired now. No, the GP didn't apologise (!) when my husband spoke to him today but he has agreed to make a/an NHS referral to the same rheumatologist which is a relief as it will be good to continue with someone we have confidence in.

    Hi StickyWicket, Thanks for your further helpful feedback. I thought it might take quite a few weeks to see a difference when he eventually starts on DMARDs and that it might be trial and error to start with and it was helpful that you mentioned it. It was good to know about the reason for the x-ray. Thank you for your kind words.

    For the future: I will take SW's advice and post on Living With Arthritis with any updates on my husband's journey. I find it helpful, reassuring and educational to read other people's stories (the good and the bad); it is generous of people to share and only right that, where we can, we should reciprocate.

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