Home Forums General Discussion A question on Tetracycline Family / Marolide family – Maz ???

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  • #467101
    PhilC
    Participant

    Hi Susan,

    Am I correct( just clarifying) in reading that you are saying IF it was yourself you would be doing daily dosing with a day or two off but NOT pulsed as in MON WED FRID ?

    That is correct. The reason is the seriousness of your disease (MCTD). Scleroderma, another serious disease, is usually treated with daily dosing and not pulsed dosing. Therefore, I would approach the situation in the same way.

    If your doctor is opposed to daily dosing for some reason, there is another protocol that may satisfy her. Some doctors treat scleroderma with azithromycin in a cycle of 5 days on and 5 days off. Most likely, the reason they do this is because azithromycin has a rather long half-life (68 hours).

    Phil

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

    #467102
    susanmary
    Participant

    Hi Phil – thanks a lot for clarifying with me MOST appreciated- I’m slowly but surely putting a plan in place with accumulated info and suggestions for my Doctor.

    You have all been a great help – I did massive research before even trying to persuade Dr to go down “tetra” pulsed route many years ago – so in that way she trusts me to have done my home work. I did mention to her last visit a couple of months back that I’d like to try another antibiotic (especially given my pain reduction when treated with antibiotics for a totally different problem after a operation complication) she made a note for next discussion/visit ! as so many here it’s been a long 18 years of throwing up of hands to pin a diognosis down – I think I’m probably very lucky well I KNOW I’m very lucky it’s not scleroderma but rather a label of MCTD, RA type – ALL I know is it is incredibly painful and I haven’t managed “to get use to it” over 18 years !!!!!!! SO Once again thank you Phil and Maz – Susan

    #467119
    susanmary
    Participant

    Hi Maz/Phil and all – ME AGAIN – I didn’t know whether to start a new thread so sorry if I should have.

    UPDATE – unfortunately my GP is covid bound so my appt delayed :(:(:(

    I suppose I try and be positive to give me more time to gather wits .
    My long story is above so won’t waste your time going over – IN THE MEAN TIME of last post was able (Phil) to get my hands from existing script of a THIRD type of Doxycycline NO DYES – I’m using this MON WED FRID 50mg twice a day I did do a week lead in (remember this was prescribed for eye part of disease optho does not believe it works for other ) NO RASH SO FAR .

    AFTER my wonderful “MINO” results and the UNFORTUNATE having to stop allwek106at info in previous mails – I did transfer to Doxycycline (did get rash but wasn’t like therecent one from hell sorry no longer remember brand) I stayed on it from June 2017 till Nov 2019 but MON WED FRID but we disccontinued because unlike “Mino” absolutely ZERO pain relief didn’t raise liver enzymes just did zippo pain.

    QUESTIONS – IF this Doxycycline I have JUST got my hands on IF helpful I would still consider adding a Macrolide (I did 25Omg Klacid with MINO way back) –
    I WAS just going to go for the Macrolide family “roxy” or whatever is avaiable in australia SO in some ways getting my hands on a third type of Doxy has COMPLICATED it because it may do nothing for pain – SO ( I know as suggestion only advice) would you add a Macrolide with DOXY MON WED FRID ???? I know when I DO get to see Dr she is going to ask me what I want ( a rare creature). WOULD you wait longer (appt now end Jan) so I would only be using DOXY till then anyhow and hope like hell it works ???????? ANY advice appreciated.

    QUESTION – does anyone use prednisone just say 5mg twice a wekk or pused (lovely but mainstream Rheumy) says oh no need higher and not really receptive for me using it just for the mind numbing painful flares _ i know it can be done and RB book says so – I may be able to get GP to assist there as well. I wouldn’t want to be on it all the time anyway because of side effects 🙁

    QUESTION Plaquenil 200mg I only lasted 10 weeks as made my leg/hip pain worse and hubby says( absolutely maintains it) I was acting very ANXIOUS – does anyone pulse this ??? Rheumy again says doesn’t work like that – but again we all here think or have to think out of the box. I’m a very very tiny person 42kg so at least my Rheumy is cautious.

    Anyway goodness – sorry but I’m just trying to get the best outcome I can AND like all of you it’s a self regulating be the detective ,tenacious patient. I TOTALLY believe in AP – I just have to be very careful not to get GP bamboosled as I know Rheumy is thinking of BIOLIGICS next year and I’m NOT – she isn’t pushy or mean extremly kind just very mainstream whereas GP is more open.

    MANY thanks for any “advice only stuff” Hope you are all travelling okay – Cheers Susan ps I’m not insane I just sound it At the moment !

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