Home Forums General Discussion First flare after 18 month remission, now what?

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  • #463337
    Thriving
    Participant

    Hi,

    This is my first post. I am sooo glad to have found this website.

    Ive been on Minocycline 100mg MWF since March 2016. I have been in complete remission the last 18 months after suffering with RA, Fibro & Sjogrens for 8 years. I’m being treated with AP by my Naturopath. I am currently out of the country and cannot see her and when I do see her next month I’m not sure she knows how to handle a flare while on minocycline. I’ve read Dr. Scammell’s book and done a lot of research. I am a pharmacist and decided based on what I have researched to double M & F doses to 200mg. Thinking about increasing W dose as well. After 4 weeks I am feeling much better. What have others done in this situation? How has your AP doctor treated a flare?
    The good news is just as Dr. Scammell states in his book, you never fall back to your previous level of disease when you flare on AP. That has been very true for me and I am pleased that this is a “mild” flare, nothing like I used to have. I am optimistic that this stress induced flare will resolve soon and I will go back into remission. Any words of advice are welcome!

    #463342
    vinny
    Participant

    I have been using Minocycline since 2007. I do best when I use 100mg everyday. I have totally stopped trying to skip days.

    Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

    #463343
    Lynne G.SD
    Participant

    Hi There;
    Please don’t forget about the good old HERX..All was going just fine for a few months and then the rug got yanked out from under me..If I calculate the number of days it hit me I expect it totals more than 3 years.Every time I changed dose,added or subtracted a different antibiotic,added a supplement It would hit.Mind you I have/had??? Lyme and had to use 6 different antibiotics and 3 herbals so God only knows what was going on.Today I am just fine but it sure took time to happen althought all sighns of SD were gone after a few years.

    #463344
    Pinkmoth
    Keymaster

    Hi and welcome!
    Some people treat flares by changing up the antibiotics a bit like doing rounds of IV clindamycin.

    I had a flare in Sept and I added daily azithromycin to the Mino because I seem to do better on that. My LLMD is starting me on another pulse of fluconozole after Thanksgiving.

    Can anyone else chime in about how they have responded to their flares?

    Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
    Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
    Meds: minocycline (Zydus generic) 100mg 1x daily,
    Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

    #463345
    Thriving
    Participant

    I have been using Minocycline since 2007. I do best when I use 100mg everyday. I have totally stopped trying to skip days.

    Hi Vinny,

    I started Minocycline at 100mg daily and had a really bad Herx reaction. I then went down to MWF and have done really well with that. Perhaps now that I’ve been on Mino for more than 2.5 years I could handle a daily dose, but I wonder about the rationale behind the benefits of pulse dosing? Has that kept you in remission? Do you do anything differently during a flare?

    Thank you for your input.

    Cheers.

    #463357
    Thriving
    Participant

    Hi There;
    Please don’t forget about the good old HERX..All was going just fine for a few months and then the rug got yanked out from under me..If I calculate the number of days it hit me I expect it totals more than 3 years.Every time I changed dose,added or subtracted a different antibiotic,added a supplement It would hit.Mind you I have/had??? Lyme and had to use 6 different antibiotics and 3 herbals so God only knows what was going on.Today I am just fine but it sure took time to happen althought all sighns of SD were gone after a few years.

    Hi Lynne,

    Am I understanding you correctly……that you had a Herx after being on AP for 3 years? Are you thinking I may be Herx’ing? Sorry, I’m a little confused. Thank you for taking the time to reply, much appreciated. 🙂

    #463358
    Thriving
    Participant

    Hi and welcome!
    Some people treat flares by changing up the antibiotics a bit like doing rounds of IV clindamycin.

    I had a flare in Sept and I added daily azithromycin to the Mino because I seem to do better on that. My LLMD is starting me on another pulse of fluconozole after Thanksgiving.

    Can anyone else chime in about how they have responded to their flares?

    Hi Pink month,

    Thank you for the welcome. Thank you so much for sharing I’m learning so much. I’ve heard of IV antibiotic use. Just learned from this site about treating with a combination of antibiotics, this is very interesting. Very interesting that you are also adding an anti-fungal, fluconazole. Did you test positive for a fungal infection? You take Mino & Azith daily then pulse periodically with the fluconazole? Is the theory that there are more than 1 infectious agents being treated? I’ve only been tested for mycoplasma, is it treated with antibiotic combinations as well?

    Cheers,

    Jamie

    #463360
    Pinkmoth
    Keymaster

    Thriving,

    I did not test positive for a fungal infection, but I’m seeing an LLMD (lyme literate doctor) who tested me positive for Bartonella. (my lyme test was pretty inconclusive)
    They treat bartonella in a lot of the same ways as lyme, and apparently this doctor has had a lot of success treating people with these types of inflections with fluconozole. Here is a study of the effects of fluconazole on lyme (https://www.ncbi.nlm.nih.gov/pubmed/15337633)

    I take mino daily, 100mg morning and night (im treating for scleroderma). My LLMD has me take 250mg Azithromycin twice daily for two weeks, and then be off for two weeks. So pulsing that. The fluconazole will be pulsed in the same way.

    I don’t know much about what other antibiotics work well for mycoplasma other than Mino that could be used for a combination therapy (I was never tested for mycoplasma). I’m sure some other folks on here could speak on that topic!

    Were you ever tested for lyme, common co-infections of lyme like bartonella and babesia, or any other types of infections besides mycoplasma?

    I actually believe that despite testing positive for bartonella, that it’s not necessarily the only infectious trigger for my rheumatic symptoms. I think we all walk around carrying a lot of life inside of us (parasites, viruses, bacteria, etc) and it can be difficult to pinpoint which exactly in all of that tangled mess is the problem (if it’s any one thing). For example I’ve tested positive for other things besides Bartonella, like toxoplasmosis, and have a history with EBV/mononucleosis – all of which have been linked to the presence of rheumatic/autoimmune diseases.

    But despite all that, I do know that mino, clindamycin and azith all had effects on whatever organism(s) are triggering my symptoms. I think that’s one of the advantages of combination therapies – you get a better chance to find something that really works against whatever particular thing(s) that’s causing the problem.

    Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
    Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
    Meds: minocycline (Zydus generic) 100mg 1x daily,
    Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

    #463367
    whaleharbor
    Keymaster

    I flared/relapsed BIG TIME after I think almost 10 years in remission…a change in generics and a very stressful time caused it, I’m sure. I went to my doctor who gave me a systemic shot of prednisone and he switched me to a different generic. He also upped my dose of mino for a while but I had to go back down because I really can’t tolerate more. After a 1 1/2 years, I’m back now I think about to where I was before. I also had to up my dose of celebrex. I know you said you can’t see your doctor right now but perhaps you can call them?

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #463389
    Dunlop321
    Participant

    HI,

    I’m on mino since 2013. It has worked really well for me and I have been in remission. I had even gotten sloppy around taking my regular dose of mino (easy to do).
    About 6 weeks ago, I noticed a mini flare which has gradually gotten worse. I’ve also had a stressful time recently. I’m now taking my mino regularly and also some anti inflams.
    Any advice or tips would be welcome?

    #463391
    CMS12
    Participant

    I too have experienced flares since starting Minocycline in 2009. I had a major flare 4 years ago when I was switched from brand Minocin to Watson generic. At the time my mother was dying so I suspect that contributed to it as well. Like Lynn every time I change generics, change dose, or have significant stress I flare. I’m herxing right now. Ran out of my final stash of Minocin about 6 months ago and went on Torrent generic which has worked for me in the past. So, I’m herxing, flaring, something? I suggest daily dose of 100 mg too. I took Minocin for years MWF and was in remission. Then when I flared from switching to generics Phil suggested upping dose. That did the trick and I went back into remission once I found a generic that worked for me.

    Look around your environment. Has pharmacy changed your brand of Minocycline, are you under added stress, taking a new supplement, etc.? Hope that helps.

    Cindy

    #463444
    April15533
    Participant

    When you have a flare, explain what happens to you, how long it lasts.

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