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Posted: Tue Dec 7th, 2004 06:39 |
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Scott,
That phase one instruction is meant for people just starting out on minocycline at 25mg every other day. But we also include instructions for people already taking a higher dose AND getting an intolerable Herx reaction to lower the dose to 25mg and change to every day.
You asked, "Why would I spend all that time working back up to a dose which was not causing the herx in the first place?"
You would do that because you felt so terrible at the higher dose that you would want to make sure that you didn't get ambushed by the Herxehiemer reaction again. We always err on the side of caution.
Best,
MegLast edited on Tue Dec 7th, 2004 07:28 by Foundation Staff
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Sam
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Posted: Tue Dec 7th, 2004 17:21 |
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Meg,
Thanks for trying to answer my questions. I really do appreciate your 24hr/day committment! For some reason there's a communication gap that I just can't seem to bridge, but I'm not going push the Phase 1 documentation issue any further. If I get into trouble at 50mg q48hr mino, I will drop back to 25mg q24hr as you suggest, erring on the side of caution.
The question I then have is, after the herx has subsided while taking 25mg q24hr, how do I get back to 50mg q48hr which is the dose that caused the herx in the first place? Do I jump back up to 50mg q24hr and try again, or do I work back up to 25mg q48hr first by slowly extening the dosing interval from 24 to 48 hours and then jump back up to 50mg q48hr and try again?
I know it probably seems like I'm crazy pushing for clarificaton on this, but here's why:
1. Dr. Marshall has stated that one of the reasons for Phase 1 is so the patient can learn to control the herx before moving to Phase 2.
2. The severe herx I experienced about six weeks ago was uncontrollable (In fact, made worse) by using the following MP approved herx-control methods:
-- Increase Benicar to 40mg q4h
-- Add pure Quercetin
-- Stop the minocycline
My herx raged on for weeks after doing all of those things, so severe that I probably should have been in the hospital.
3. Therefore, I'm desperate to find a way ( Put a plan in place ) to control a severe herx should it happen again without exposing myself to a repeat performance of the past two months. At the same time, I'd like to eventually get through Phase 1 and progress to Phase 2 with some confidence that I'll succeed there without resorting to experimentation and pure luck.
Hope that makes sense.....
Scott M.Last edited on Tue Dec 7th, 2004 17:22 by Sam
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Aussie Barb
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Posted: Tue Dec 7th, 2004 17:31 |
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Dear Scott,
re >> "2. The severe herx I experienced about six weeks ago was uncontrollable (In fact, made worse) by using the following MP approved herx-control methods:
-- Increase Benicar to 40mg q4h
-- Add pure Quercetin
-- Stop the minocycline
My herx raged on for weeks after doing all of those things, so severe that I probably should have been in the hospital." <<<
re >>> "after the herx has subsided while taking 25mg q24hr, how do I get back to 50mg q48hr which is the dose that caused the herx in the first place?"
you do this >> work back up to 25mg q48hr first by slowly extending the dosing interval from 24 to 48 hours and stay there till stable, and only then jump back up to 50mg q48hr and try again?
we have found that going to this more frequent dosing schedule stops the uncontrollable herx, is better than taking no mino..
How is that? keep asking till we get it to you.. best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Sam
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Posted: Tue Dec 7th, 2004 19:07 |
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Aussie Barb wrote:
you do this >> work back up to 25mg q48hr first by slowly extending the dosing interval from 24 to 48 hours and stay there till stable, and only then jump back up to 50mg q48hr and try again?
we have found that going to this more frequent dosing schedule stops the uncontrollable herx, is better than taking no mino..
How is that? keep asking till we get it to you.. best, Barb ....
Dear Barb,
Thanks for your specific reply. That helps immensely, and I will follow that specific advice should my herx at 50mg q48hr become uncontrollable again.
I would like to follow-up on a point I made previously, however, which relates to the following statement regarding controlling a herx with mino in the new phase 1 documentation:
"If you are already taking a higher dose, reduce the dose to 25mg every 12 hours or 50mg every 24 hours."
Who does the above quote from the Phase 1 documentation apply to? Someone taking 75mg mino q48hr? Someone taking 100mg mino q48hr?
I would like to make a suggestion that the Phase 1 documention be clarified by providing separate, specific instructions applicable to each dosage level ( 25mg q48hr, 50mg q48hr, 75mg q48hr, and 100mg q48hr ) to be followed when an uncontrollable herx hits at each level. Or, if the same advice you gave me applies to all levels, then the above quoted statement should be removed from the Phase 1 documentation.
Does that make sense? Do you now understand my source of confusion?
Best,
Scott M.
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Aussie Barb
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Posted: Tue Dec 7th, 2004 19:20 |
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Dear Scott,
re >> ""If you are already taking a higher dose, reduce the dose to 25mg every 12 hours or 50mg every 24 hours."
Who does the above quote from the Phase 1 documentation apply to? Someone taking 75mg mino q48hr? Someone taking 100mg mino q48hr?" <<<
the above quote applies to both the person who was having an intolerable herx while taking 75mg or 100 mg..
see >My Herxheimer reaction is too strong. What should I do?
and we are available at MP.com should you or anyone have questions..
I will bring your post to the attention of Board staff. thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Sam
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Posted: Tue Dec 7th, 2004 19:39 |
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Barb,
Thank you so much. That was the specific clarification I was looking for. If I ever make it to 75mg q48hr or 100mg q48hr, I'll be prepared to deal with intolerable herxes appropriately.
BTW, the wording at the link you reference is identical to the wording in the new Phase 1 docs. IMHO, it's not clear at all that this refers to people with intolerable herxs at the 75mg or 100mg levels. Thank you for passing this along to the board staff.
Best,
Scott M.
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Aussie Barb
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Posted: Tue Dec 21st, 2004 23:48 |
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Scott
we haven't heard from you in a while? how are you going?
How long have you been on mino and Benicar now? since August?
Letting you know too, that since our discussion, the wording has been clarified in the phase 1 doc.
Happy Holidays, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Sam
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Posted: Sun Jan 2nd, 2005 18:21 |
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Good News! Today I am taking my fourth dose of Minocycline @ 100mg q48hr. I've not experienced any additional severe herxs. The abdominal and back pain, while not completely gone, has substantially improved. Overall, I'm probably feeling slightly better than before starting the MP. I seem to be stabilizing at the maximum Phase 1 dose of Minocycline and am ready for the transition to Phase 2, possibly later this week.
Barb, I've updated my signature line which should now make clear the answers to your questions regarding start dates.
Best,
Scott M.
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Aussie Barb
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Posted: Sun Jan 2nd, 2005 18:49 |
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Thanks Scott,
FAQ > How do I know if I'm ready for phase two? to help you to make your move.
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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