Home Forums General Discussion Duration of high dose of Doxy

This topic contains 6 replies, has 3 voices, and was last updated by  enzed 4 years, 5 months ago.

Viewing 7 posts - 1 through 7 (of 7 total)
  • Author
    Posts
  • #307608
    enzed
    Participant

    I have just started on my 3rd week of Doxycycline 200mg daily after having to stop Mino because of die off reaction. My family doctor who prescribed the Doxy is concerned that the dose is too high and would prefer I halve it to 100mg a day.

    I would appreciate knowing the experience of others with CREST (SD, Raynauds, Dry Eyes etc) who are taking or have taken Doxy? How long is it necessary to take 200mg a day, and at what point, and for what reasons, is the dose lowered?

    While I was diagnosed with SD 4 years ago, I have had the symptoms for 30 years.

    How will I know if Doxy is working? What test will tell me that?

    I have been seeing the rheumy every 6 months for 3 years and see him again in August.

    Is there a blood test I should ask for? The rheumy does a raft of blood tests each time and the one that indicates over active immune system is always highlighted in red (for abnormal) on his computer screen but he has never given me a print out of the results nor would I have understood them if he had. Other tests all show as normal or within normal ranges including heart function, kidneys and liver. Lung function is 95%, the same as it was 2 years ago.

    I’m very interested in how others with CREST have progressed on Doxy.

    #368699
    PhilC
    Participant

    @enzed wrote:

    I have just started on my 3rd week of Doxycycline 200mg daily after having to stop Mino because of die off reaction. My family doctor who prescribed the Doxy is concerned that the dose is too high and would prefer I halve it to 100mg a day.

    How much minocycline were you taking, and how well are you tolerating the doxy at this dose?

    Phil

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

    #368700
    enzed
    Participant

    @philc wrote:

    @enzed wrote:

    I have just started on my 3rd week of Doxycycline 200mg daily after having to stop Mino because of die off reaction. My family doctor who prescribed the Doxy is concerned that the dose is too high and would prefer I halve it to 100mg a day.

    How much minocycline were you taking, and how well are you tolerating the doxy at this dose?

    Phil

    Thanks Phil,
    I was taking 100mg Mino, then reduced it to 50mg, then had 2 washouts, then started again on 50mg before stopping it because of serious fluid retention and stomach upsets. That all happened over 6 months as I tried to keep the AP going.

    I am finding the Doxy much more tolerable to take compared to the Mino. No major die off reactions – not yet anyway. Mostly fatigue at this point, slowing me down.

    #368701
    PhilC
    Participant

    Hi,

    A dose of 200 mg of doxy per day is not a high dose, it is the normal dose for doxycycline, and it’s the dose you should be aiming for (because you have CREST). However, considering your experience with mino, your doctor’s wanting to reduce your dose to 100 mg per day makes a lot of sense, so I think it would be prudent to follow your doctor’s advice on this matter. This is probably just a temporary dose reduction that he or she has in mind.

    Phil

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

    #368702
    enzed
    Participant

    @philc wrote:

    Hi,

    A dose of 200 mg of doxy per day is not a high dose, it is the normal dose for doxycycline, and it’s the dose you should be aiming for (because you have CREST). However, considering your experience with mino, your doctor’s wanting to reduce your dose to 100 mg per day makes a lot of sense, so I think it would be prudent to follow your doctor’s advice on this matter. This is probably just a temporary dose reduction that he or she has in mind.

    Phil

    Thanks for the info that 200mg Doxy is not considered a high dose. So far I am tolerating it well. I don’t want to reduce it unless I have to. Next visit to the rheumy in August I will ask him to explain the blood tests for my immune response. He has been recording them every 6 months for 3 years now, so it will be interesting to see if there has been any change, and if so, what any change means. He is very against AP but I’m OK with him feeling like that. I get Doxy from my family doctor. According to the rheumy there are only 5 CREST patients in this region of Australia and we are all under his care as hospital outpatients so he wants to continue seeing us all 6 monthly and carrying out progress tests. I’m OK with that too. He and I don’t have to agree on everything!

    My family doctor (I’m his first and only CREST patient) has asked me, for how long do I expect to take Doxy? I couldn’t answer apart from to say that others on this forum take AP for as long as 5 years but on various doses, while some alter their dose during treatment in consultation with their doctor and others ‘pulse’ 3 times a week once the disease has come under control. There’s a lot of shared information on this forum and it seems to me from reading different stories that there is no “one size fits all” in terms of AP treatment.

    So the only way to know if AP is working is by an improvement in the immune blood test that shows the immune system is improving compared to previous tests. Is this correct?

    #368703
    richie
    Participant

    Hi The best way to know if the doxy is working is really not through tests but rather how your symptoms are improving —By the way you mention fluid retention when taking mino –Is it possible that meds you were taking for Raynauds may have caused fluid retention —
    richie

    #368704
    enzed
    Participant

    @richie wrote:

    Hi The best way to know if the doxy is working is really not through tests but rather how your symptoms are improving —By the way you mention fluid retention when taking mino –Is it possible that meds you were taking for Raynauds may have caused fluid retention —
    richie

    It was definitely the Mino that caused the serious fluid retention. It took a month to get rid of it after stopping Mino.

    But it’s a big help to know it is symptoms that indicate progress, not blood tests. So far the skin thickening on my face and hands has stopped progressing and skin on one side of my face has softened, (the worst side) my eyes have more fluid without burning my eyelids which indicates my natural tears are no longer toxic, I need less daily pain medication (previously I needed 6 panadol, now down to 4) and sometimes needed codeine instead but no longer do.

    I will keep up the dose of 200mg of Doxy for as long as I can, which is until I have intolerable ‘die off’ reactions and hope for the best. My skin has just started to itch though – if it breaks out in sores again as it did on Mino, I will stop the Doxy. (I had to use antibiotic cream and wash in Phisohex to heal up sores when taking Mino).

Viewing 7 posts - 1 through 7 (of 7 total)

You must be logged in to reply to this topic.