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Martha
Health Professional
| Joined: | Mon Aug 23rd, 2004 |
| Location: | Utah USA |
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Posted: Thu Oct 14th, 2004 18:29 |
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Well, I upped my minocin to approx. 75mg yesterday...up till now I haven't really noticed anything-just feeling disease symptoms as usual.
This morning though my throat hurts a bit and my nose is running some clear fluid-not like a full on cold but almost like allergy feeling. I feel tired (what else is new???) My face feels tighter too.
I don't know if this is a so called "herx" or just the disease getting worse. So hard to know and have faith...I work in the medical field (or should say did) and with this disease I've become very cynical. I have learned to function in having another "trick" up my sleeve if one of many things don't work or wont work. I guess that's how I continue to have hope & deal with a very serious and most of the time deadly disease. I've got a cough goin' on too-not the yucky tight cough I get from the disease but just a mostly dry cough....I'm so sick of being sick... I know you all can relate and I know that there is always someone worse off than me-look at Chris Reeves-what a way to live he had the past 10 years-NOT!!!!
Anyway, I'm pluggin' along with my benicar about q6 and my minocin at 75mg now every other day. So far-I feel no difference-just the disease.
Dr. Marshall or Meg: Can the Benicar being used as an anti-TNF drug lower your immune system so that you catch more colds, "sickness" like the mainstream drugs do ie: Remicade,etc. I remember reading Sue with RA who had breast cancer in the past said her cancer numbers went up with the benicar and she d/c'd using benicar for fear of a cancer relapse. I know that you said that the Benicar works differently upstream or downstream in it's anti TNF effect but ultimately how does that make is safer with respect to the big CA or just opening us up to colds, flu and not really a "herx"?
Thanks, Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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carol
Moderator
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Posted: Fri Oct 15th, 2004 03:01 |
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Martha:
Could it be that your cough, sore throat and runny nose are really herx symptoms?
I know for me, I was pretty amazed to find that burning/stinging of the throat, eyes, ears and vagina is a recurrent herx symptom for me. I know it is a herx by the way it comes and goes. I have RA and I certainly never would have thought of this as a likely herx symptom, but there you have it.
And I know I have read about sarc folks getting a persistent cough that is a herx symptom. It sure makes sense to me that there could be a similar symptom with scleroderma.
Here's something else. I glanced at some of your previous posts and noticed that you reported that you had severe vertigo when you took high dose minocin previously. I know there is a school of thought that says the vertigo is not a side effect of the drug, but rather an indication that cell dwelling pathogens are being killed off in the inner ear (in other words, a herx). Maybe you have already "beaten back" some of the bacteria that are susceptible to minocin and will not see a big, obvious herx until you move on with the protocol. (This is of course sheer speculation on my part.)
Sorry, I cannot provide specific links to any of this info, but I believe I am remembering it correctly.
I'm not trying to talk you into anything here, but I know it can be a challenge to sort out what our body's are doing sometimes.
Hang in there,
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests: 25-D=32; 1,25-D=65...10/07 entered Phase 5...Xodol daily, Valium and Tramadol occasionally, all for pain...last 25-D=7 (10/09)...Benicar only, no abx
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Fri Oct 15th, 2004 05:38 |
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Dear Martha  thanks for posting..
Your sx do sound to be herx... your disease should be getting better by the fact that you are feeling worse... as strange as that sounds..
perhaps you could take an extra day between mino doses? to have a day to feel a bit better.. cos it will make you feel better all thru.. physically mentally emotionally to face up you may wish to consider taking more days off to see how you feel.. you may be surprised what a difference it makes..
& the MP is something that has more benefit for us in taking it slowly!!
your 1,25D is high so you will be feeling it.. so take care of yourself Martha
Best, Barb ....Last edited on Fri Oct 15th, 2004 05:46 by Aussie 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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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Fri Oct 15th, 2004 05:48 |
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In answer to your Q for Dr Marshall... who is busy getting ready for the Lyme presentation this weekend..
Here is a link to a discussion on TNF-alpha click >> HERE
and here is a link to a section in the paper describing the different actions
http://clinmed.netprints.org/cgi/content/full/2003010001
..trevor..Last edited on Fri Oct 15th, 2004 05:50 by Aussie 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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Martha
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| Joined: | Mon Aug 23rd, 2004 |
| Location: | Utah USA |
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Posted: Fri Oct 15th, 2004 15:14 |
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Hi Girls,
Thanks for your responses. Yes, I do wonder whether symptoms are "herxs", but it doesn't matter for me if I take multiple days off, take the minocin everyday whatever-I really don't have "good" days...my face is getting tighter as I can see it starting to look like a marionette-creases at the corners of my mouth down.
In the beginning, the benicar REALLY made me feel better-gave me energy, subsided my symptoms, etc. And it still does make life a little easier, but not as dramatic as in the beginning. Nothing makes rhyme or reason when it comes to me. I know that my disease is affected by hormones as the day or two before my period, my symptoms improve. I do know that when I'd take fish oil in the past, it certainly did not help me feel any better maybe worse. Those are givens...other than that, I just always feel bad.
I'm not throwing in the towel yet-don't have too many choices...I'm anxious to get back up to at least 100mg minocin every other day. I was just hoping for more dramatic improvement in alternating the minocin every other day and taking the benicar or at least a sign that this protocol is working for me---yesterday I was thinking my runny nose and thickish sore throat might be herxes, but today it just feels like a plain old head cold. I haven't had one of those in years (since before taking my minocin 3 years ago). That's why I was wondering if the Benicar acting as an anti TNF lowers your immune system to where you pick up more bugs.
I've also noticed from the Road Back board that men improve much faster and more completely than do women. There are 2 men that regularly post there who have scleroderma. Both of them are greatly improved or in remission on the Harvard Protocol with Minocin. There aren't any woman with scleroderma that are doing that great. Most are like me or worse. Dr. Marshall obviously is a male and he has achieved or close to remission with his sarc...
Thanks for the encouragement and enjoy the weekend
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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Reenie
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| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Sun Oct 17th, 2004 22:29 |
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Martha says, "I'm anxious to get back up to at least 100mg minocin every other day."
I'd strongly encourage you NOT to rush this. IMO, from what you're describing, and from reading your D values, you may have ramped mino too quickly. 
Martha, I would try to find a way to have a good day, or at least a part of a good day again, so you can sort out what's happening. IMO, I would try to feel like you did when you started Benicar, for at least one day, before proceeding on your mino dosing. Then, drop back to your prior dose of mino and work your way up from there again.
One of the ways to do this would be to stop mino dosing until you begin to feel better. If these are herx sx, you will eventually tell, if it's directly related to mino. If you've turned on your immune system, you may continue to herx w/o adding more, so then you could try adding Quercetin, q6h. This helps alleviate many of the herx sx, for some. The third way, would be to increase Benicar dosing, with Drs approval, of course.
Although I'm not able to explain the science, IMO, I would doubt being on Benicar and mino, you'd be more likely to catch any more bugs, than if you weren't on the MP.
Remember, Benicar helps to increase the effectiveness of both your own immune system AND the abx to be able to kill bugs... something you may or may not have been doing before w/higher doses of the same abx. Last edited on Sun Oct 17th, 2004 22:30 by Reenie
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Martha
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| Joined: | Mon Aug 23rd, 2004 |
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Posted: Mon Oct 18th, 2004 15:03 |
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Hi Reenie,
Thanks for your thoughts & ideas-they make good MP sense. I'm not ruling out herx by any means and I'm certainly not throwing in the towel. I just get depressed and need to vent periodically You know before I began the minocin this time and after being on the Benicar for a couple of weeks, the Benicar seemed to not be quite as effective for me as it did the first 10 days or so. It's strange but my husband says I always get a placebo effect with just about anything I try...I disagree but whatever....
And I'm not going to ramp up to 100 mg anytime real soon. It's just real hard to know if this is just the disease progressing or herx. Dr. Brown said that sclerodermas weren't like other rheumatic conditions and he didn't think they herxed like most other rheumatic illnesses do. The Harvard Rheumie who is a maverick with AP and scleroderma also doesn't go along with herxing in scleroderma. He also treats RA with minocin so I'm sure he sees the herxing with them so I don't think he totally negates the whole herx phenomena.
I do have some quercitin but just haven't used any yet because I haven't had any symptoms that I haven't dealt with before and surely nothing any worse than I've dealt with before-the benicar definitely is calling me at about 6-7 hours. I don't want to impede the antibiotic in anyway. I've always been that way, even with the Harvard protocol with minocin-no matter what I always took my doses of minocin on schedule, even when I had terrible vertigo. Dr. Brown was big on decreasing inflammation to potentiate the antibiotic-I believe he suggested antihistamine-like benadryl or even had his patients continue prednisone until some of their inflammation subsided. I've used benedryl before and it helps some-but just temporarily. Like I said nothing is happening to me in the way of symtoms that I haven't had all along.
It does seem as though I've become dependent on the Benicar...I feel my symptoms are more intense than before minocin at around the 6-8 hour post benicar dose. I don't think I could even think about not having it now.
Hopefully, this week will be somewhat better...
Healthy blessings!!
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Sat Oct 23rd, 2004 00:15 |
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Martha how are things? I'm thinking of you
re "It does seem as though I've become dependent on the Benicar...I feel my symptoms are more intense than before minocin at around the 6-8 hour post benicar dose. I don't think I could even think about not having it now."<<<
that is what it feels like to be setting up the inflammation blockade Benicar is our wonderful protector.. I am so thankful for it myself.
wishing you well, & a havagoodweekend, 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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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Wed Oct 27th, 2004 23:00 |
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Martha,
You may have seen but I am just letting you know that there is a new, updated version of *How to Start the MP* with much more information.
You may wish to read the updated instructions, and it is a good idea to print and provide a copy for your MP Dr.
from http://www.sarcinfo.com/phase1.pdf ....
There are other new documents as well.
Letting all MPers know to please keep an eye out for all new information posted on the MP site as you keep in touch with us in your Progress Reports, so that we may help you to do MP with the utmost efficacy...
Thank You Martha, best wishes, 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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