Home Forums General Discussion Update from Tetra/macrolide and seeing Rheumy 3rd visit

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    Hi Maz and All – again I didn’t want to add to my long winded previous update and so complicated anyway the posts are still there if anyone wanted to look at them – Yes Maz I decide to take the 250mg Macrolide (klacid) with the TETRACYCLINE “doxy”50mg twice a day MON WED FRID – it seemed both logical and simpler . I did have those liver enzymes all checked BEFORE I added the Macrolide again seemed a logical thing to do given my previous experiences. THIS is all my GP.

    MMMMMMMMM just had 3rd visit to Rheumy she is truly a lovely person I have visited 2 other Rheumy over last 19 years and went no further because they were not particularly pleasant – haven’t we all been there 🙁

    Before I had GP visit I had flare from HELLs HELL (so nothing to do with Doxy as on it for 6 months AND nothing to do with adding Macrolide because I hadn’t at that stage.

    DESPERATE from extreme pain after 3 days I took prednisone that had been sitting unused from 3 years ago in fridge ( I didn’t want to do the amounts previous rheumy threw at me so there they sat unused) – I did 7 days 10mg first few days then 5mg few days = 7 days then just came off – eased pain ENORMOUSLY no wonder people use it.!!!!!!!!!!
    I DO know Dr M used it to help etc. I also know ALL the pitfalls.

    **** SO I rock up to Lovely Rheumy after a 3 month wait and FESSED UP – she was very nice about it – I asked if I could use this as a tool for flares PAIN would she be fine with that . WELL she HATES them she said well yes you can and its great they worked BUT I would only want you doing that maximum 3 times a year for a week as the drug binds so strongly even like that at tiny doses.

    **** I then asked if i could possibly re try the Plaquenil again but like pulsed 3 times a week ( I was on 100mg for 9 weeks daily and it made me jittery or at least Hubby said so !) BUT it was NO we tried that it didn’t work pain wise so that’s off the list ( my idea was pulsing with antibiotics NOT that she knows I’m on antibiotics except for eye disease ( Hard to navigate these sins of ommission )

    ***** UPSHOT she gives me script for prednisone low dose AND OH NOOOOOO Azathioprine 25mg – she absolutely does do due diligence of giving me all the pitfalls and benefits and said it really is your choice go away and think about it. IF you trial it have bloods done and see me 3 months if not see me 6 months.

    I just want to say here she is one of the kindest specialists I have ever met just not on antibiotic wave length – otherwise she is some sort of saint as she works incredibly long hours I’m not sure she goes home and won’t rush patients – which makes her secretaries SO ANXIOUS its palpable – whenever she says to scretary make an appointment for 4/6/7 whatever they wait till she has taken her next patient in before they have an epileptic fit of HOW DO I DO THAT !!! I just wanted to give her some accolades because we all know we have some MEAN ones out there.

    ***** THIS has TOTALLY done my HEAD IN as even though I have huge pain factors my ANA is positive only at titre pattern speckled 80 and my ANCA Titre is only around 400 so this is considered low – THIS has only shown in last 3 years out of the 19 years. The 400 reading drops to 30 when I’m on antibiotics yes indeed . It was hard enough convincing myself to take the Plaquenil (yes I pre did eye tests) and only DESPERATION sent me to Prednisone (and bloody WONDERFUL it was so I can now see how people get use to taking it and can’t get off) – SO I just can’t get my head around what to think about. I CANNOT see myself taking AZATHIOPRINE – I would have given the Plaquenil another pulsed go with antibiotic :(:(

    **** Flying solo is hard as we all know – I can’t think of one more thing to do have done LDN etc etc etc etc etc etc i COULD possibly get my Dr/GP to up Klacid to 500mg 3 times a week but think I would be pushing her too far and I absolutely CANNOT afford to lose her.

    ****** Has anyone done Prednisone at my low doses stated say 6 times a year for a week WITHOUT the things my rheumy is freaked out about ?? Maybe even less than a week if it just gets rid of intense pain briefly even 3 days of use anyone done that ????
    I know none of us are doctors all just shared experiences !!!!!

    I have an entire journal of what I have done in the last 19 years so if anyone wantsto know just ask but NOTHING has worked as well as MINO nd that is an absolute no for me now.

    Thank you fellow travellers – Susan


    Hi Susan,

    **** Flying solo is hard as we all know – I can’t think of one more thing to do have done LDN etc etc etc etc etc etc

    How much LDN were you taking, and how long did you take it?


    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein


    Hi Phil – It was at least 7/8/ years ago I was on LDN and from memory I did experiments with GP took 1mg, 2mg , then 3 mg (compounded no additives) I did it for at least 8 monthsevery day .

    It caused really bad sleep and “loo” issues even when I switched to morning taking. It didn’t help pain and was very expensive.

    I also think that 2014 was the year I had the good break through with “mino” until I ht week 106 . Anyway thanks for imput.
    I’m still hoping someone will chip in as well with other comments on my :):):) Many thanks Susan

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