Lack of confidence in the medical fraternity.

Posted , 6 users are following.

After browsing through some of the posts here I’m questioning the Rheumatologist’s diagnosis of RA.   My wrists are incredibly painful as is my neck and left thumb along with elbow, upper arms and ribs to a lesser extent.  Since starting on MTX a week ago the pain in all those areas has increased markedly so I’m reluctant to increase the MTX dose from 10mgs to 15mgs on Monday.  

I have no swelling, no joint pain on touch (aside from the thumb which has been troublesome for years), no redness and until I started on MTX had no fatigue.   From memory my last blood screen some months ago picked up no markers for RA either, I’ve since had another blood test but won’t know the results until my next appointment a month away.  

Since the first symptoms appeared my life has changed dramatically:   I can np longer engage in my favourite pursuits and am linited to sitting around all day, reading the paper, watching TV or tapping on a keyboard, any activity/exercise sees a marked increase in pain.

I’d like to know of others experiences as I simply don’t have the confidence in the medical fraternity that I once had, I feel they are just playing guessing games at the expense of my health!

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  • Posted

    Tony - some blood tests are next to usless.  Taken straight from my next lab order. tests needed for CHEM20, FBC, ESR, CRP, and medications noted MTX/LEF, thats the methrotrextrate, and Leflunomide. check that you Dr is testing you for these. I have learnt, that when my ESR is very high, my pain level is higher, but also when my CRP seems to mirror ESR, my pain level and swelling is up. Just a thought, have you visited somewhere overseas in the last few years, in northen Australia we have Ross River Fever, and Dengue, and apparently both of them can present as arthritis, cripling arthritis and huge amounts of pain. I think, people do get admitted to hospital with it. I have always thought that my arthritis may have started as a dose of Ross River, but tests come back negative, although not ususal to have false negative, I know a neighbour ex nurse, who kept at her Dr, saying she had Ross River, she had seen it when nursing, eventually got a positive test at about the third try.
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  • Posted

    Hi Tony - MTX takes a while to build up in your body, up to 3 months. It won't be working after one week so your pain may be good old uncontroled RA. Are you on steroids to control the inflammation in the meantime? Fatigue and brain fog is part of RA and unfortunately, also a side effect of MTX. Damned if you do and damned if you don't.

    Doctors start with a low doses of MTX and slowly increase in case your liver or kidneys don't cope with it. But if it works, it is one of the best treatments.

    And yes, they are playing guessing games but not at the expense of your health. RA is a strange illness. A drug that works great for one person will not work at all for someone else. It is trial and error. They are starting you on the one that works best for most people.

    I took MTX and it knocked the RA on the head beautifully - then my kidneys got upset. Tried Hydroxychloroquine and sulferzalasine which did absolutely nothing. Leflunamide was next. It helped but not enough. Now I take it combined with Humira. I was on prednisone to hold the fort, the whole time we ran these experiements. Only just weaned off it.

    I recently took part in a research project which aims to find out if genetics are the key to why meds work for one person but not another. The hope is that they can do a genetic test and know immediately what drug to use for you. But they're not there yet so until then, your doctor has no option other than trial and error.

    I know how frustrating this is. It took 5 years to get the meds right for me so I really hope MTX will work for you.

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  • Posted

    Yes, I'm on Prednisone, my GP initially thought the problem was PMR so started me on 15mgs, emrgency Doctor increased the dose to 25mgs a little later but I get very little releif.   Five years?   I won't be putting up with this for five years, not for me I want some quality of life, If I can't have that I shall leave the building!   It seems to be falling down anyway, who wants to stay in a building that's falling down?. 
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    • Posted

      Oh I don't know... I've lived in a half dilapidated building for years, and my spirit is just fine...! No need to leave it just yet.

      Be patient.

      We are called patients to remind us to be patient.

      To be honest, from the sound of your symptoms is does not sound like RA. Upper arms, elbows, neck... none of these are common in RA.

      RA is normally a knees, fingers, toes sort of malady. Hips sometimes, shoulders too...

      Truth is, I've been on forums for 8 years re this illness and I don't recall anyone talking about elbows, upper arms, neck or ribs...which is not to say they didn't, of course. (This dilapidated house of mine is short on memory!)

      Wrists, yes. Wrists can swell and become supremly painful, but the point to me is, is this joint pain you're talking about?

      Or muscle pain?

      Someone here mentioned dengue.

      I have had dengue fever twice and I can tell you, apart from the fever, it's all agonising muscle pain and aching everywhere, aching aching. That is a different kind of pain than that with RA, which is limited to joints and movement, more crunching.

      RA also is accompanied by the even worse fatigue symptoms.

      Pain with RA usually starts with stiffnessand pain when you get up and gets bit better towards the evening, the more you move. It's also nearly always bilateral (your thumb??).

      Your doctors may actually not know what you have nor how to treat it – yet. Give them time.

      They're not gods and they're doing their best most of the time. It can be a long journey, and bearing with it with peace of mind is part of your healing process.

      And remember there are other choices than preds and MTX and that gang: Biologics.

      If it turns out you do have RA and can't manage the firt line of care, the D-Mards, then they might, if you're in the UK, consider you for biologics.

      And if the NHS gives you biologics, you can consider yourself a lucky bunny! (I don't know about the bunny part, actually)

       

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  • Posted

    I have it really bad in my wrists, cannot use them at all at the moment.   The thumb problem I've had for many years but it seems to have gotten worse since being diagnosed with RA.   Elbows and neck are both OA they also seems worse now.   Multiple complaints, difficult to seperate..
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  • Posted

    Hi Tony ive had the same as you 15 years ago I still get mild symptoms ie ribs elbow shoulders wrists ankles toes neck infact every joint in my body.

    fortunately it only lasts a hour or so and soon ebates. apart from 3 pred shots in the first year ie I was living in the south of France and did a lot of driving and was locked in every joint!!!! I've never taken other drugs as they scare me. However a few months ago my right elbow jammed was useless and my shoulders too I was feverish so I rang the private doc  I never normally go to medics and said I'd read 5 mg pred is harmless even long term, can I have some so I took 10 mg along with ibuprofen and parcetamol and it worked well.

    now I just take 5 mg and occasional paracetamol.

    i have a special program diet etc that has worked for me and when I had these minor flares I can now sence that I've eaten the bad stuff.

    my grandfather and great grandfather had arthritis all over like me and he claimed it was the war stress etc in those days they were told it would burn out which it did with very minor damage. I guess they were lucky or maybe they didn't have ra. In my case though it sort of has burnt out the only damage is my right elbow won't fully straighten but it's no handicap to me.

    my grandfathers lasted 4 and 6 years. I was definitely diagnosed with aggressive ra following pmr. 

    So there's ️hope yeh? Things will get better we are given these challenges and we can take responsibility and overcome them.  💙

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  • Posted

    I'd love to meet the b*st*rd that gives us these challenges, he would have a very bloody and bent nose by the time I finished with him - just as well I don't believe in such nonsensical rubbish!

    Wish mine lasted for an hour or so, I have pain 24/7 and can't use my handsat all even though I'm on 16mgs of prednisone and am takling MTX as well as paracetamol and the ocassional ibuprofen.

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