 |
| Author | Post |
|---|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Thu Dec 2nd, 2004 00:52 |
|
| Wow Chris, it is good you can see an immediate difference from cutting out the commuting / light exposure.. Congratulations on taking good care of You. best wishes, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Chris
Moderator
|
Posted: Fri Dec 3rd, 2004 21:14 |
|
Day 9 : 3 Dec 04(restarted)
Benicar 40mgQ6h; mino ~25mg Q48h.
Self flagellation was never something I'd considered
before. This comes close.
Wed night I took the about 30mg mino. Thurs morning
was uncomfortable. Thursday from 10-4 I was feeling
good and was up and
working at the keyboard, and making good progress.
Last benicar was 11:30PM. I woke, feeling ill
at 3:30, again at 5:30AM feeling miserable. My
sense of time gets real sharp when I feel a need
for benicar. I was miserable with aches, pains, brain
fog, and touchy stomach until it started to
clear about 2PM Friday. In 6 hours or so I get
to start the cycle again. whoopee.
I think I'll take a little more care to take
25mg mino or less this time.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Chris
Moderator
|
Posted: Tue Dec 7th, 2004 19:54 |
|
Wed Dec 1 - ~30 mg mino
Thu Dec 2 - feel good, productive day
Fri Dec 3 - misery, clears up 2PM, try ~20 mg mino
Sat Dec 4 - achy day, not that good
Sun Dec 5 - achier day, not that bad - try 50mg
Mon Dec 6 - feel good, productive day
Tue Dec 7 - aches in the earlier part of the day, but peak starts at 2PM - will take 50 mg again
n.b. I take the mino about 10pm. That seems to
work best to make the next day usable.
The effect of higher mino seems to be:
1. The more mino the better I feel on the day
after taking it.
2. The more mino I take, the later on the second
day following will the herx peak and the longer
it continues into the evening.
Dec 3 spooked me a bit, it's been a while since the sarcoid has made me feel that miserable. However, this seems to be a 'no pain, no gain' game. Since the following lower dose gave a markedly milder reaction that it had previously, it seemed reasonable to see if the Dec 3 reaction had actually improved things and so I tried 50mg. It seems to have been a good call, since today was somewhere between the 3rd and the 5th in herx.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Chris
Moderator
|
Posted: Fri Dec 10th, 2004 02:24 |
|
Day 15, dec 9
Wed started good, but I had to drive to work (1hr each way) so might have set things back a bit. Things stopped feeling so good about 1PM. The herx today was an irritating level of aches & pains & loader than usual tinnitus, but I still got some work done on the keyboard.
However it's been 48 hours, and the herx, though low, is still around.
I'm tempted to step up to 75mg mino, but will do one more round at 50mg.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Chris
Moderator
|
Posted: Thu Dec 16th, 2004 03:33 |
|
Day 22(?) Dec 15
two steps done at 75. I find that at 48 hrs after
a does, the herx is not yet gone. I went to 60 hours
to see when it actually stops, and found that getting
a few hours off before the next round is an
emotional boost.
I tried 100mg this AM, and that gave me back the
shakes & chills I'd missed for a while. But
it's still not as bad as that caused by the first
50 mg dose. I seem to get a slight case of herx
on the way up the mino curve and then a worse one
as it tapers off. Is this common or am I imagining things?
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Thu Dec 16th, 2004 06:24 |
|
Chris,
The timing of your Herx reactions has been reported by others too. It probably has to do with differences in bacterial susceptibility and tissue perfusion but I can't say for sure.
You are adjusting your mino schedule appropriately. Good job!
Best,
Meg
|
Chris
Moderator
|
Posted: Thu Dec 16th, 2004 20:27 |
|
Day 23 - Yesterday was good. My head was clear and I was able to get things done at the keyboard. There was a big of mental fog but not bad.
This morning, I was thinking of going into work to clear up some end-of-year things. But at 1pm I got hit with strong shakes, chills, aches, pins-and-needles, and I had to crawl into bed for a couple of hours. The first 50mg dose gave me about 10 hours of feeling really miserable, all of the above plus a very touchy stomach. This episode caused by the first 100mg mino was short and sharp.
My stomach wasn't affected, but that might be because I've had to give up coffee altogether, and limit the tea to 2 cups a day. Even then, there is usually a half-full cup of tea on the desk the next morning. If the need for caffeine hadn't gone away with the ability to tolerate coffee, I'd be in really sad shape.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Chris
Moderator
|
Posted: Mon Dec 20th, 2004 05:50 |
|
| The second dose of 100 mino had minor herx. After shaking so bad I didn't feel safe standing up for the first 100mg, I was a bit apprehensive, but as with the 2nd dose at 50mg, the 2nd dose at 100mg gave much milder herx than the first.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Tue Dec 21st, 2004 22:18 |
|
Dear Chris
to read your report, it looks to me that you may have been on Benicar and mino for 5+ months?
can you let me know if that is right please?
you may like to be looking at How do I know if I'm ready for phase two?
all the best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Wed Dec 22nd, 2004 04:20 |
|
Chris,
It's important not to stay in phase one too long. The bacteria that are resistant to minocycline may find the newly vacated inflammatory tissues a welcome place to multiply. That's why we want you to add a second antibiotic after 3 months or so on the MP. If you are worried about too much Herx, you can start phase two with a reduced minocycline dosage to make sure you don't get sacked by the Herx and then ramp the mino back up to 100mg every other day.
I'll email you the phase two questionnaire and then the phase two guideline so you can talk it over with your doctor.
Best,
Meg
|
Chris
Moderator
|
Posted: Wed Dec 22nd, 2004 22:18 |
|
Yes, it's been 5 months. But for the first 4, I tried to work. That didn't work out so well, as the brain fog seem to show up just when I needed the brain to work.
I had not seen the warning about being on phase 1 too long. It wasn't until recently that I could take time off work to let the herx roll.
Since I got to the 100mg level, and the severe herx stopped after the first dose, I was just about to ask for phase 2.
Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Chris
Moderator
|
Posted: Sun Dec 26th, 2004 10:05 |
|
Phase 2 started Dec 24. 'Daunting' is my wife's review of phase 2.
Other than poor sleep patterns, I've nothing to complain about for the last few days. I'd skipped a day in the 100 mino cycle to get a couple of good days for the 24th and 25th.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Sun Dec 26th, 2004 17:47 |
|
Dear Chris,
a link for you >.IMPORTANT MESSAGE FOR MEMBERS IN OR READY FOR PHASES 2 AND 3
best wishes, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Chris
Moderator
|
Posted: Mon Dec 27th, 2004 20:06 |
|
| I was feeling fine until about 1:30, when a very uncomfortable pins & needles herx enveloped me for about 2 hours before it started fading away.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Chris
Moderator
|
Posted: Tue Dec 28th, 2004 02:45 |
|
| I spoke too soon, it still hasn't fully faded away.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Tue Dec 28th, 2004 22:15 |
|
Chris,
I'm not sure I'm understanding your dosing. 
You say you started Phase 2 on 12/24 but stopped taking mino? That would mean you took Z alone?
Remember, the Z and mino must be taken together, on the same day. They work synergistically.
If you are having a strong herx on the Z alone, I strongly encourage you NOT to add a full dose of 100mg of mino with it, but try only adding 50mg q48h, for the remainder of the 10 day cycle.
Then, repeat that same Z + M cycle again, taking 50mg mino q48h, before ramping up to 100mg of mino. Last edited on Tue Dec 28th, 2004 22:16 by Reenie
|
Chris
Moderator
|
Posted: Wed Dec 29th, 2004 04:59 |
|
Meg,
I did not stop the mino. I'm trying to follow the protocol exactly.
On Dec 24, I took '100mino/48h+2ndAbx', at the dose specified for the first step in the phase2.pdf. I took 100mino again on the 26th and 28th.
To be clearer about the herx starting on the 27th, it was 2 hours of pins&eedles (quite uncomfortable, not close to self-flagellation (see previous note)), spent under a quilt or two. Since then, it has come & gone, but is mostly an irritation.
The herx on dec 27 wasn't pleasant. I wouldn't care for it to hit if I'd been driving, but it wasn't as bad as the two hours of shakes on the first 50mino-only step. I will let you know how tomorrow goes.
The sarcoid started for me in 1983 with a fever of unknown origin that peaked at 105, and kept peaking above 104 for a week, and 102 for a month. Every day had hours of shakes while the fever went up and hours of cold sweats when it went down. I didn't see a full day under 99 for 6 months. I lost 40 pounds. This cycle hit again in 91, when the diagnosis finally showed up. The third hospitalization was due to granulomas in muscle tissue, the pain got too great to walk before they put me in the hospital for a biopsy.
Both my wife and I find the idea of recycling these symptoms daunting. But we have been here before.
Dec 3 was way too familiar, but it only lasted two hours at the peak, and no fever and no cold sweats. My reading here suggest I should expect worse in the next day or two.
I am taking this seriously. I am not a medical person, so maybe I'm not being as accurate as I should be for your use. For that I apologize.Last edited on Wed Dec 29th, 2004 12:10 by Chris
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Thu Dec 30th, 2004 22:56 |
|
Chris,
Let me repeat, if your herx is stronger than you can tolerate, lower your mino to 50mg q48h, along with not increasing the amount of the initial Z dose.
Once you feel your sxs become tolerable, you can raise the mino to 100mg before ramping up the Z.
|
Chris
Moderator
|
Posted: Fri Dec 31st, 2004 20:22 |
|
if your herx is stronger than you can tolerate, lower your mino to 50mg q48h,
What should I be willing to tolerate?
I'm willing to tolerate a lot at this point, if it means things are getting better faster. Page 3 of the phase 2 protocol talks about 'troublesome' and 'intolerable' herx, which I was using as the guideline. Since I'm on vacation time at the moment, it doesn't get in the way of anything else.
However, on re-reading the phase 2 protocol, page two says one goal is to 'avoid uncomfortable or dangerous reactions', which sounds like both a much lower mark and a higher mark than 'intolerable' levels, and which is confusing to me. I had thought that as long as the herx troubles were less than the previous sarcoid symptoms, I was on reasonably safe grounds.
Since mental fog is usual with any level of herx I get, and is the most troublesome in that it interferes with work, maybe I'm not thinking of 'troublesome' in the same way as used in the protocol.
Other than the cardiac symptoms noted in the protocol, what should I be looking for to avoid dangerous herx?
---
The 6th-day herx didn't show up until 2AM this morning, on the 7th day. It was uncomfortable, but not as bad as earlier episodes, while it was enough to wake me up, it wasn't intolerable. The time between days 3 and 6 had short periods of discomfort.
____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Fri Dec 31st, 2004 20:44 |
|
Chris,
Besides cardiac Herx, you should be concerned about any Herxheimer reaction that might send you to the emergency room. That has included severe abdominal pain, chest pain, arrhythmias, severe body rash, increased shortness of breath and throat tightening.
Tolerance to non-emergency Herxheimer symptoms will vary with each individual.
Best,
Meg
|
Current time is 10:42 | Page:   1 2 3 4   |
|
|
|
|
