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not treating RA?

mamadeesixmamadeesix Posts: 83
edited 28. Jun 2018, 10:13 in Living with Arthritis archive
Since being diagnosed with RA, I have talked to a few people who have RA and are not being treated with disease modifying drugs, such as methotrexate.

Three people that I know have RA and do not take anything like it. They take over the counter nsaids or Celebrex or something similar, and that's it.

Given the serious possible side effects of this drug and the fact that no one I know, in person, has been prescribed this.....it gets me wondering.

How do they determine if one should take it? On one hand, you read that RA should be treated seriously and aggressively. On the other hand, you read that methotrexate hIas serious, potentially fatal side effects and should only be taken if you have life threatening cancer or the like.

I'm so confused.

Comments

  • dibdabdibdab Posts: 1,498
    edited 30. Nov -1, 00:00
    The most serious side effects come with the huge doses used for cancer. For RA the dose is a tiny fraction of that dose, and the regular blood tests keep a close eye on potential problems. Please try not to panic, I took methotrexate for several years but have now moved on to Leflunomide in combination with sulphasalazine and hydroxychloroquine. If you read the modern research it makes clear that by treating early the potential joint damage is greatly reduced enabling those with RA to function more fully for much longer.

    Obviously only you can decide what to take, but I would recommend discussing the options with your rheumatologist and reading the literature available from reputable sources before making a decision. For my part I know that when I have to stop my disease modifiers due to chest infections I soon realise just how beneficial they are.

    Deb x
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Take the DMARDS. Every time. Mine, too was treated for years with just NSAIDS and the occasional burst of steroids because modern DMARDS weren't available back then. All I can say is that you too could have a body like mine. With the possible exceptiom of bits of my spine I have RA in every joint. And resulting OA in most. This is because although the side effects from DMARDS are potential, the actual effects of RA are real.

    Perhaps your friends have medical insurance problems but, if not, I think they're being very short sighted. Last year I was off DMARDS for 3 months followingman operation. My ESR levels doubled and I grew a couple of impresaive rheumatic nodules. Just take the meds. I wish I'd had the option.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    In my experience people confuse RA with OA, not knowing there is a difference: this could be because they don't want to know, they are naive or they are stupid.
    Your friends' health issues may appear to be, on the surface, like yours but I doubt that they have the same specific set of issues. You are not a doc not a rheumatologist, are any of them? . My friend with PsA, who is wonderfully controlled on six sulph tablets per day, is nothing like me in how the disease affects him yet we have the same issue.


    OTC anti-inflammatories can be used in the treatment of OA but in the case of an auto-immune condition disease activity can be controlled only by immuno-suppressant medications. People do not think of the consequences of not taking the 'nasty' meds:. Google the phsyical damage caused by untreated RA and see if that option appeals. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daffy2daffy2 Posts: 1,713
    edited 30. Nov -1, 00:00
    People do not think of the consequences of not taking the 'nasty' meds:. Google the phsyical damage caused by untreated RA and see if that option appeals. DD
    Sound advice although you may then feel even more as if you are between the devil and the deep blue sea! However in making a decision you do need both sides of the argument. RA doesn't confine its effects to the joints; cardiovascular disease is a known increased risk. Interestingly it would seem that methotrexate is good at reducing the risk of CV disease due to RA - in addition to also treating the disease itself. This might be of interest - see the para on meth.
    https://www.arthritis.org/living-with-arthritis/comorbidities/heart-disease/
    As has been mentioned already, meth is used in cancer treatment at very high doses; this tends to distort the benefit/harm picture and I think is conveniently, or as a result of ignorance, not taken into account by those who shout loudly about 'evil meth'. It has been used since the 1950's, initially for cancer and then later for RA, and as more has been found out about it the side effects and treatment regimes are increasingly better managed. The role of folic acid supplements is the most obvious example.
    Just a thought, if you had been diagnosed with some form of cancer for which chemotherapy provided a very good chance of successful treatment would you have the same inclination to refuse that treatment if it involved taking meth?
  • BettyMacBettyMac Posts: 165
    edited 30. Nov -1, 00:00
    I'd echo what the others have said; modern drug therapies have changed the effects of RA for so many of us.

    There are some people for whom methotrexate may not be appropriate, due to other health problems such as bone marrow disorders or liver disease.

    Doctors tend to try patients on other drugs first - and if they don't work, methotrexate might next on the list to try.

    The best bit of advice I was ever given is to be very organised for appointments with the rheumatologist;
    Write down any questions.
    Keep a diary of your symptoms etc - and take a copy so they can get a clear picture of how the disease is affecting you.
    Take a friend or relative - they often remember the questions and answers I don't!
  • jennandjennand Posts: 113
    edited 30. Nov -1, 00:00
    The other point to mention is that OTC nsaids also can have serious side effects. If it’s not supervised by a Dr, then potentially they are at risk of gastric, cardio and renal damage. And of course the long term effects of under treated RA. Not worth the risk. We have a wonderful NHS ( in the main) and RA is a treatable condition.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Unluckily for mama the NHS applies only to the UK. We are indeed the lucky ones when it comes to treatments, in the good ol' US of A illness is big business hence the appeal of OTC. Mind you, that also appeals to people over here with their hard sell of quack remedies, preying upon the fears and worries of the genuinely ill and helping the worried well to keep worrying! :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mamadeesixmamadeesix Posts: 83
    edited 30. Nov -1, 00:00
    Thank you guys. You have certainly given me more info to make a better informed decision.

    I have a mission trip this week, so won't start anything new until after that.

    It should be interesting to see how I do this week.....it's a construction based mission, so I know there are a lot of things I cannot do, as my tennis elbow is not in it's best place. I won't be hammering or painting with my right hand for sure.

    Just the nature of physical stuff all day has me slightly worried.

    Also, one of the guys I know with RA is going......so it will be nice to talk to him, also. Maybe get more insight as to why he is not taking a disease modifying drug.

    Thanks again!
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, I hope you are coping OK with your active week. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
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