Home Forums General Discussion I’m back for a short while

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  • #308720
    maz.aust
    Participant

    Hi to everyone who can (maybe) remember me lol

    Well what the past 18 months this has been,

    1st broke my humerus (I stood on my dog in the middle of the night, he of course jumped up & threw me into the door jamb, it could only happen to me) however apparently for some unknown reason the humerus is extremely difficult to heal & in my case took 10 months after a plate was inserted to heal, & yep I now beep at all airports.

    But that little exercise exacerbated my arthritis, because as we all know without use it goes crazy & yep it was now rheumatoid, which then resulted in me having metacarpal replacements of my right hand.

    Stupid me then thought I might just try mtx for the first time to see if I could stave off any more damage to my joints and guess what am allergic to it !! then tried Arava and guess what allergic to that too !!

    My rheumy was tearing his hair out and basically said there was nothing he could offer – other than biologics – which I won’t take, because of 2 reasons:

    1)f I had such a bad reaction to tablets I can only imagine what kind of reaction I would have to injections, and
    2) I have no intention of ever using biologics

    So then he said quote ‘I think you have done exceptionally well on AP so why don’t you just go back to that, and if and I mean if you ever need me I am here & closed my file — keeping all government agencies happy with no one being able to question his treatment of me.

    The good news is that I am all good – apart from the plate pinching every now & again because I have full motion my arm is great & my hand is a complete success with 98% motion & grip (meaning I can’t close my fist fully it leaves about 10mm open).

    The best news is now I am apparently back to palindromic as well – so Lynnie you will know how I feel.

    That’s it for me —
    How are you all ???

    I did miss you,

    Cheers, Maz (Aust)

    Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
    1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
    1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

    All off days Probiotics

    #374975
    lynnie_sydney
    Participant

    Hi maz.aust
    Lovely to “see” you πŸ˜€ πŸ˜€ πŸ˜€ though so sorry you’ve had such a rough trot. Cant believe your rheumy said that to you – wonders will never cease. But it also makes sense in many ways that the strange form of R.A. we have (the palindromic kind) doesn’t seem to respond well to the usual suspects in R.A. drugs anyway, apart from the allergic issue you’ve had….and I know you’ve had issues with being allergic to other medications before. But maybe that was all a blessing in disguise, as you say you are doing really well now, which is so good to hear.

    Your having ‘gone back’ to being palindromic pretty well mimics what happens with me. As soon as the disease decides to migrate into my smaller joints (hands and feet), I have a protocol change (or 2 or 3!) and the progression reverses. That’s pretty well where I’m at now…..protocol changed last October (trialled a few) then again in January this year and presto! the smaller joints are once again behaving.

    For me, it all seems very much like the strange things that happen with Lyme and Lyme-like illnesses – quite different to classic R.A.

    I am assuming you are back with Dr D? Was it she who told you that you were ‘back to palindromic’?

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #374976
    Jan Lucinda1
    Participant

    Greetings from the U.S.-

    Good to see your post.

    Jan

    #374977
    maz.aust
    Participant

    Nice to be back Lynnie .. πŸ˜‰

    I knew 5 months in that the metacarpals would need replacing and seriously it really didn’t bother me – not much you can do but do what you have to — seemed to bother everyone else though…lol

    Yep for the rheumy and he was I would say in his early to mid 50’s — most unexpected.

    The only reason I saw him was to stave off the idiots from attacking Dr K (knowing mtx etc wouldn’t work thanks to tonnes of trials with Lyn, long ago & checked again recently) but the powers that be had started to look into my file and I was in protection mode for Dr K even going to a strange GP when I got the reaction to mtx & it was she who rang the rheumy (again protecting Dr K)

    We all go through rough trots don’t we !!! the broken ankle was also a strange accident, I slipped & kicked the ironing board & one guess where the iron landed — yep on my ankle !!!! lol

    The medico’s thought I may have osteoporosis but after much testing they realised I didn’t and both breaks were just bad luck

    Your thoughts on palindromic (quoted below) is exactly what happens with me…. 4 trials of meds and finally behaving πŸ™‚

    “Your having ‘gone back’ to being palindromic pretty well mimics what happens with me. As soon as the disease decides to migrate into my smaller joints (hands and feet), I have a protocol change (or 2 or 3!) and the progression reverses. That’s pretty well where I’m at now…..protocol changed last October (trialled a few) then again in January this year and presto! the smaller joints are once again behaving.”

    Hope you are well & that Maz is ok???

    Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
    1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
    1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

    All off days Probiotics

    #374978
    emmaline
    Participant

    Can you explain what you are talking about with palindromic… i.e. what happens when the disease decides to migrate to the small joints? Is that when you know you are getting better or when you know you need a protocol change? It’s just that I’ve been having really good days and I think I’m seeing improvement on AP, but my hands have been really bad in the morning. It could also be that once they feel better in the afternoon I’ve been pulling weeds. I won’t be doing that anymore. Still, I’d like to understand what you two ladies are talking about. Thank you.

    #374979
    maz.aust
    Participant

    Sorry Emmaline, am really busy invigilating for the next 2 weeks so I would like Lynnie to jump in and explain palindromic for me

    We all have bad days/times and for me it does mean a tweak of meds is called for just for about 10 days then I head back to my normal protocols

    Will reply via a private message when I get a chance πŸ™‚

    Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
    Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

    Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
    1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
    1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

    All off days Probiotics

    #374980
    lynnie_sydney
    Participant

    Hi Emmaline
    Palindromic Rheumatism/RA is quite different symptom-wise to classic RA. It tends to attack the larger joints and on one side only. In my case it was the tendons that were far more painful than the joints. Attacks would mostly come on suddenly at night and the pain was nothing like the stiffness/slow burn of RA – rather like medieval torture and at excruciating ‘just shoot me’ levels. Palindromic means ‘comes and goes’ (comes from the Greek). My attacks tended to last 3 days. When they were gone, I was perfectly normal again. There is some thought that it is a completely different disease. It can morph into RA, often combining with it, but the two are very different beasts. I describe my symptoms/experience in some detail in my 2007 testimonial:

    https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html

    It is quite common for the rheumatological expression of Lyme Disease to begin with Palindromic symptoms.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #374981
    emmaline
    Participant

    Thank you so much for sharing! I read your story lynnie. What a time you went through!
    When I first started with this condition, it was waking up with two very stiff and extremely painful fingers. Though I surely have classic symptoms of RA as well, the swollen joints that come and go freakishly fast, started later. Recently, my hands I have tendon issues. I feel like the cords are going to break! I often wake up in jolting, excruciating pain because my hand tendons and wrists are so painful… 10/10 pain. It happens to my shoulders, elbows, knees, hips (big joints) as well. It shoots through my feet like plantar fasciitis. It happens on both sides but not the same… ex: right hand, left foot. I will have to look into this more. Either way, I’m on 100mg Mino MWF, so I’m doing what I need to do at this point. Thank you again. I am so grateful for this site and people like you who are so generous to help.

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