Conservative treatment?

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Dandy123
Dandy123 Member Posts: 6
edited 9. Jul 2019, 08:02 in Living with arthritis
Hi All

I got some form of arthritis last september, starting in one knee following a routine vaccination, now spread to the other. They are swollen and painful (sometimes enough to prevent walking for a day), but not too hot. After blood tests and synovial fluid examination they didn't really know what to call it, but they currently assume its psoriatic arthritis since my dad has the skin symptoms of psoriasis (I currently don't).

I've been in Switzerland the last 6 months seeing a rheumatologist, and I'm starting to get concerned about whether the care I'm getting is too conservative. She doesn't want to put me on DMARDs due to the side effects, so I've been on ibuprofen and Cox 2 inhibitors, and a couple of times corticosteroid injections into the knee. All of these help quite a bit, but I still limp around on many days (I'm 27) and I'm starting to worry about long term damage. Now it feels like one of my shoulders is going the same way.

I've read that you should be put on DMARDs pretty much immediately to stop damage - at least for rheumatoid. I'm starting to wonder if, due to the health insurance based system here, rheumatologists are dragging out the treatment in order to collect more money overall (even if subconciously)....

What were everyone else's initial treatments like on the NHS? Does what I'm getting sound conservative or similar to your experiences?

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Dandy and welcome to Versus Arthritis forums.

    I'm sorry to hear that you have been diagnosed with a form of arthritis: identifying which sort can take some time but the treatment is usually the same.

    The website has a range of information on types and treatments for arthritis. Here is a link to information on psoriatic arthritis:

    https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

    Interesting to read the comparisons of Swiss Health Service with the NHS. I'm sure you will get the personal experiences from our members that you are asking for.

    Best wishes
    Brynmor
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I had very conservative treatment for the first five years - none. This was because my then GP did not recognise the signs of an auto-immune arthritis and kept assuring me the inflammation would go away. When I eventually began the meds it was all far too little far too late but even then rheumatology didn't fully believe I was one of theirs. It is smarter of great personal satisfaction to have proved them wrong. Not.

    I began in 1997 when my left knee began to swell. By 2002 it was 27" in circumference, all above the kneecap, rock hard in some places and squidgy in others. Surgery was performed in February of that year which cleared it but by the September it was beginning to return. Rheumatology were still not convinced I was their pigeon and kept trying to palm me off onto orthopaedics who didn't want to know. Fast-forward nine years and I was diagnosed with psoriatic arthritis despite having very little psoriasis (this was a genetic gift from my father, Ma passed on the asthma and eczema so I was always a candidate for this dross).

    I went to see a private rheumatologist at one point because I felt the NHS was not cutting the arthritic mustard only to discover that they were. I have no answer as to why your rheumatologist is not putting you onto any DMARDs which is hardly surprising as I am not a doctor but it could be, that like mine, your PsA has not begun where it should which could be raising some doubts. It is meant to begin in the smaller joints such as the fingers and toes, it is also a sero-negative form of auto-immune arthritis which can throw even the professionals let alone the mere amateurs. I am still written up as having RA but I cannot be bothered to argue the point because the meds are exactly the same, it's only the joint damage which is different.

    I apologise for not being of any help whatsoever but I cannot second-guess the preferences of an individual. Any professional in any sphere has their way if doing things, quite why she is so concerned about potential side-effects of a medication she won't be taking is beyond me. Speaking as a patient it would be better if she was more concerned about the potential side-effects of not taking the meds to control disease activity but that does not seem to worry her. Perhaps it's time to see another rheumatologist who might have a different approach. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    I've read and re-read your post and two things stand out to me.

    Firstly, I doubt the rheumatologist is dragging out treatment purely for financial gain. I don't even see how that would work. You're still going to have to keep seeing a rheumatologist whatever meds you're on. How does the consultant gain by not putting you on DMARDS?

    Secondly, you write that it all started "starting in one knee following a routine vaccination,". I've never heard anyone say before that that's how their RA or PsA began. We don't really know how it begins other than that hormonal changes after a pregnancy can trigger it. All we really know is that often there's a genetic pre-disposition which meets up with some unknown environmental factor. A vaccination? Possible but very unusual.

    what I do wonder is if your rheumatologist is not convinced that you have PsA and is actually wondering if you might have Reactive Arthritis which does arrive following an infection. Although ReA can morph into RA it can also clear up so milder drugs are usually tried. Just a thought. Try mugging up on it here https://www.versusarthritis.org/about-arthritis/conditions/reactive-arthritis/

    However, re names - well, I was officially diagnosed with Stills Disease aged 15. I was told it'd be RA if I was older but, because I was a child, it was Stills. Nowadays I think they'd call it JIA. They did try to make it PsA on many an occasion because my Mum had psoriasis but my body resolutely refused to co-operate so RA it is.

    Have you actually asked your rheumatologist why no DMARDS? It's a reasonable question. It doesn't have to be aggressive. You could print off some evidence from here (top menu not the forums). It is definitely regarded as normal to clobber it hard and quickly if it's PsA or RA. It would be reasonable to ask why not.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Dandy123
    Dandy123 Member Posts: 6
    edited 30. Nov -1, 00:00
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    Thanks for the replies!

    @stickywicket
    Reactive arthritis was my first suspicion since I had a vaccination and the next day the swelling occurred. I read some case studies from the British Medical Journal documenting very similar cases, usually either an ankle or a knee, following the same TDP booster. My take is that this simply triggered the onset of autoimmune disease (since the booster will trigger some immune reaction)... My Dad's psoriasis was actually triggered by a rabbit scratch! The difference between mine and the case studies I've read is that mine later spread to other joints, and isn't responding so well to treatment (the studies concluded reactive arthritis, and they did manage to get it under control with anti inflammatories and taking off the weight).

    The only reason she gives me for not giving the DMARDs is the potential side effects being worse than the disease itself. But since I'm in at least some pain about 80% the time, and I'm often limping into the office, I find it a little hard to believe.
    Here the rheumatologists can claim crazy high prices for things like knee draining - up to 500 francs a pop. Which is why dragging it out could in theory lead to financial gain. It's very cynical I know, I think my mistrust has come from dentists performing shoddy fillings for no reason other than money. You can't trust a system that makes money out of you being unhealthy! It makes me furious how much money is made from biologicals alone...
  • Dandy123
    Dandy123 Member Posts: 6
    edited 30. Nov -1, 00:00
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    FYI - a case study for vaccination-linked arthritis with a nice discussion at the end. Apparently some vaccines can even trigger rheumatoid. https://ard.bmj.com/content/61/2/185.1
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    Firstly, thank you very much for the info and useful link on vaccinations.

    Secondly, I had to smile when I read “The only reason she gives me for not giving the DMARDs is the potential side effects being worse than the disease itself. “ as I frequently tell newbies, reluctant to take DMARDS, exactly the opposite. Modern DMARDS weren't around in my early years and I have the body to prove it.

    I hadn't thought about costs in relation to knee draining, steroid shots etc but I guess it does make sense. My son, in USA, had a root filling by a dentist who told him his insurance didn't cover it. My son duly paid up but later found the dentist had taken the money from his insurance too. (Eventually, that dentist had to flee the USA having done the same to many other patients.)

    I don't know how true it is but I read once that the old Chinese system was that doctors were only paid when their patients were well. Now there's a thought!
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    If it is reactive arthritis then that sheds a different light on things because that does eventually clear. It can take years to do so and then there's the matter of its return should one fall ill again. Any procedure involving a needle runs the risk of introducing infection into the body be it vaccination, knee draining (an horrendous procedure in my experience) or, in my case, doing my sub-cut injections of meth and imraldi to control the PsA.

    As for the money side of it if I was a private medico I would be targeting the worried well, a rich source of income. I think that here in the UK we are completely unaware of the true costs of drugs and procedures thanks to the protective cushion of the NHS. I have never understood why people find the true costs of human medicine appalling but happily shell out thousands on treating their pets. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Dandy123
    Dandy123 Member Posts: 6
    edited 30. Nov -1, 00:00
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    I think people are horrified by the 'true' costs, at least for drugs because in fact they are very much made up in order to maximise profit for big pharma. It's natural to be horrified when an HIV pill goes from 13 to 750 dollars overnight... The difference with biologics like humira is the companies learned their lesson and to prevent a public outrage they started it at a huge price and creeped it up from there. Nice article here: https://www.nytimes.com/2018/01/06/business/humira-drug-prices.html
    The only reason they get away with it is, like you said, its indirectly paid by the NHS or insurance companies.

    It outrages me that some suits are raking in more money than anyone can spend in several lifetimes just because some unfortunate people really want to be able to walk. And these suits are not even the scientists that developed or produce the thing with their brains and hands. And I'm convinced that these companies have no interest in a cure for anything, even if it were attainable, because a lifetime of drugs is just wayyy more profitable.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I'm used to living a compromised life thanks to my genetic inheritance. The development of a variety of drugs has enabled me to broaden my narrowed horizons in a way I suspect you wouldn't be able to comprehend and as for the comment about 'some unfortunate people really want to be able to walk' I assume you are talking about you.

    It is a fact of life that arthritis of any kind causes pain. It is far harder to manage when it's a new phenomenon and in a limited number of joints. Luckily for me the onset of mine was just more of the same - this is considerably harder for you.

    I am not unfortunate and I have never not been able to walk, it's getting harder to do so for sure but that's because I've been dealing with it for twenty-plus years and the damage in multiple joints is extensive. I have lessened the damage to my hips because I began using walking aids in my early forties, I realised they were a benefit rather than something to resent. To be honest it is hard to recall what it was like in my early days but I dealt with it because you do. When one hasn't been challenged by an ongoing condition then it's harder as you have no experience, limited knowledge of a suddenly faulty body and so lack coping strategies.

    My pharma investments are some of my best performers because people are frightened of being ill and demand cures. Good health is easily lost but for many can be retained and regained f they have enough luck not to get anything serious. When one is born with crud one's stuck with it. Of course drugs are big business: legal or illegal they always have been and always will. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Dandy123
    Dandy123 Member Posts: 6
    edited 30. Nov -1, 00:00
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    There is no need to be condescending. I wasn't referring to you specifically, I don't know your situation of course. And everyone has different ways of dealing with things, and different perspectives. But I assume you would be just as outraged as anyone if overnight the price of a drug you needed increased 50 fold (although your investments might make you biased). If the profits were more reasonable, structures like the NHS would have more to spend on other things, and wellbeing as a whole would increase. Some way or other, the common man is paying for corporate greed. Much of the time the research that lead to the breakthrough was funded publicly. I am a publicly funded neuroscientist - yet if my research led to a drug for schizophrenia Novartis would be picking up the profit.

    If no one ever got angry and simply said 'that's the way its always been', we would still have children in workhouses. The fact is, pharma is not abiding by normal market laws. I'm not saying what they're doing is illegal - it's just an annoying fact about having middlemen pay for drugs - but as competition for biologics has gone up, so have the prices. The only way that used to be able to happen is if companies formed cartels, which is largely illegal in industry. I don't resent the drugs, or even my condition - believe it or not, after 1 year with this I've come to accept it's happened. I do however resent some fatcat making off with more money than is even useful to him just because we are not controlling this outrageous market.

    Imagine if every company collaboratively just started hiking the prices of food so that they were making 100s of percent in profit. There would be instant protests.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I hadn't appreciated I was being condescending so my apologies - type does not convey facial expressions or tone of voice. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    I read the article i the NY Times and broadly agree with the author though he does seem to confuse DMARDS and NSAIDS. I also agree that there is probably little incentive for the large pharmaceuticals to invest in cures. How sad!

    I recall a news item of a few months ago as to whether or not the difficulties of getting some, very popular meds, was due to impending Brexit or not. I think the likeliest answer seemed to be 'mainly'. But it was pointed out that the NHS, being a large organisation, can negotiate a good price for most drugs whereas countries in which health providers are many, and so smaller and having to negotiate individually, pay more. Ironically, one reason why we were short of some staples was that we pay so little we're the first to be 'cut out' if stocks are low.
    https://www.bbc.co.uk/news/health-46843631

    https://www.bbc.co.uk/news/health-47646193
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright