My Rheumatologist will only give tentative diagnoses AFTER 4 YEARS attending his clinic. I have Sarcoid Arthritis, Fibromyalgia & Chronic

Venous Insufficiency, Osteoarthritis, hypothyroidism, high blood pressure etc. & recently my condition has worsened. I have tried Leflunomide, Methotrexate but could not tolerate them now he proposes Hydroxychloroquine which I am about to undertake. Is this just hit-or-miss Cookery Book Medicine?

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  • Hi Waff, sadly your right, with the benefit of 30 yrs experience I can confidently say it is a case of trial and error when it comes to medications.

    Hope the Hydroxycholroquine works for you.

    Beth x

  • Thanks for replying Beth. I remain philosophical. See my other replies explaining my GP follow-up.

    Waff xx

  • Hi Waff,

    Unfortunately RA is an awkward thing to control, as there's a huge amount of variation between people 's symptoms and about what they'll tolerate and what will work for them.

    Although you & Beth are right overall about trial and error approaches, most rheumy docs do follow a rough map to guide them through the choices. And this is based on experience of things that are likely to work the best. I'm not trying to defend docs as some are just dreadful (or lazy), but I think it helps to know that it's not complete and utter guesswork although I do feel like a lab rat at times.

    Anyway, here's the link for the map - not that all docs follow this, and it's not the lightest reading but it might help you.

    healthguides.mapofmedicine....

  • Hi, I didn't expect such a quick reply!

    My GP phoned this morning explaining that I have to discontinue taking Citalopram before undertaking Hydroxychloroquine as it could cause heart palpitations so I am starting to phase them out tomorrow over a 2 week period then I will see him to discuss the programme so I am pleased with his care & consideration. My condition is complicated - whose isn't? - so I cross my fingers.

    Thank you for your message

  • Hi Waff. As I've just said on Reikimaster's post my rheumy said that we can get too hung up on what we call the various forms of inflammatory arthritis of the autoimmune family. I think he's right because even under the heading RA there seem to be loads of people with incredibly different symptoms and different tolerances to different drugs and many other related or apparently unrelated conditions.

    For example all my life until a few years ago I was caked in eczema and often it was every bit as painful and distressing as this RA. My joints would crack open and I'd have seeping wounds all over the place and have had blood poisoning several times. Now the eczema has completely disappeared and the same joints that were most affected by the eczema are now the ones most affected by the RA - so I can't bend my fingers now because they are stiff whereas I used not to be able to bend them because the skin would crack open and bleed.

    I can't see how these things can possibly NOT be connected - and yet there is no connection being made by the medical profession between them at all. I used to see dermatologists now I see rheumatologists - but I'm just me and I don't really expect the doctors to understand how these things are connected because it's so individual and complex that they just have to stick to their own specialism and medicate accordingly. It was trial and error with the eczema and now it's trial and error with the RA and that's just how it seems to be.

    I really hope the Hydroxycholroquine works for you. TTx

  • Hi, Thank you for replying. Your health history makes mine look much less so I do count my blessings as so many others have to tolerate much worse. I have varicose exzema but nothing as bad as what you endure.

    Keep as well as you can yourself. It does help to hear comments from other people who suffer similar conditions.

    Waff xx

  • Well Waff that's the great thing about coming on here - it usually puts things in perspective.

    But I have to say that I found the period of uncertainty prior to diagnosis of RA the worst of all for one of my highly impatient nature. I can cope with pain to a degree and all the other stuff but worrying that others wouldn't believe me or would think me a time wasting was the worst thing I've had to deal with so far. The eczema was at least visible even if I did get branded a neurotic as a child for it - but then having something so visible is a mixed blessing and one I personally am delighted not to have to have at all any more so can't have it all ways I guess.

    It's much easier when you have a clear cut diagnosis and aren't left stranded in a kind of limbo with all these different ailments you mention. But then I do sometimes wonder if my desire for a diagnosis didn't mean that my rheumy just gave me one to keep my happy - because I do think all these inflammatory arthritis autoimmune diseases are much of a muchness in terms of suffering and medication so perhaps we read too much into a name? The spectrum is huge really and each one of us has a different presentation and history with other health and medication factors to consider so it must be very difficult for rheumatologists to get the measure of each different patient, also given the huge time constraints on them? TTx

  • Thanks again Tilda, Maybe just dawdling along fearlessly is the best medicine. Since being restricted by my condition (s) I watch Animal Planet on SKY & it really draws out my compassion & empathy. Animals just keep going & disregard (accept) any terrible afflictions they endure & they are a lesson to us humans. Keep well yourself. xx

  • Hoping it works for you best wishes waff and welcome x

  • Thanks. I look forward to seeing other people's comments on their conditions. I find I get more information from fellow sufferers than from my Rheumatologist or GP. Saying I am 'A mystery patient' doesn't encourage faith does it? My most helpful advice comes from the members of my local Pain Association Scotland Group which meets every 2 weeks & is also uplifting for the social interaction. xx

  • I like the idea of dawdling along fearlessly - if only it were possible for me but unfortunately I get sidetracked by things that terrify me often. Nice to have another Scottish forum member too. TTx

  • Hi again Tilda, There are so many things set to terrify us in our precarious health situations. Many people I speak to are especially concerned over the idiotic & ill considered actions of our new Government but it does make one think more deeply of one's future!

    Best wishes to you. Waff xx

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