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AmyEliz
Member in Phase 3
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Posted: Thu May 18th, 2006 00:24 |
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I stopped all medication (cold turkey) 6 weeks prior to starting; Enbrel, Sulfasalazine and Azathioprine.
I started my Benicar 4/28 and continued for two weeks before starting Mino every 6h. I experienced AM nausea, major dizziness, sun flare and minimal muscle cramping in my feet and hands with just the Benicar. Overall, I felt good with no RA symptoms. After stopping Enbel, my MVP worsened and after starting the Benicar, my MVP (chest pains) decreased. My first 25mg of Mino was 5/12 and my last 5/16 (three doses). I have since experienced joint/muscle soreness (mild), runny noise, ear ringing, sore throat, headaches, ice cold feet & hands and this past Saturday I blacked-out for a couple seconds after standing next to a very sunny door. I am trying my best to avoid the sunlight, including my 35-minute drive, to and from work into the sun each way. I cover up with gloves, hat and a long shirt (difficult to do in the sunny state of Florida- I look like a nut). I feel the best at night! I am finding the sun makes me ill. My Noir do not seem to be strong enough these days. Am I not feeling many affects at 25mg because of the small amount of light I am getting? My first strong pain resembling RA was 5/16, in my right shoulder, which was the worst prior to the Enbrel. My hands and feet are stiff and sore but nothing compared to last year March. I am planning to increase my Mino tomorrow to 50mg. A happy note to all this, I lost 10 pounds since I started the Benicar.
I have a scheduled out-patient surgery for June 29th.
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Aussie Barb
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Posted: Thu May 18th, 2006 00:47 |
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AmyEliz
Welcome to Mino Forum and thank you for posting. Posting an Index of your schedule and dosing at the top of your post is helpful to Staff for replying and for other Members for reading and understanding .. thank you..
You are taking mino Q48H now.. and say "I have since experienced joint/muscle soreness (mild), runny noise, ear ringing, sore throat, headaches, ice cold feet & hands and this past Saturday I blacked-out for a couple seconds after standing next to a very sunny door" << To increase your chances of success with the MP, you should avoid unnecessary exposure to daylight. ie. where it is at all possible...
Please be mindful that sunlight exposure increases the level of 1,25-D and might raise it high enough to cause a flare in cardiac inflammation and cardiac symptoms. Diligent avoidance of sunlight is particularly important for the Th1 patient with cardiac symptoms to avoid a sudden cardiac event.
What is a cardiac Herx? When should I be concerned?
re blacking out, dizziness: Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself. and do check with your Dr if necessary..
Why am I dizzy and/or fainting?
Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated .... << to help keep symptoms minimal..
Some find it necessary to wear layers of glasses.. using clipons and hookins on their regular NoIRs.
we recommend to stay on mino 25mg for at least 2 weeks, leaving time for assessing your herx carefully before increasing to mino 50mg..
re 25D test 33: Dr Marshall advises that "anything over about 15ng/ml will reduce herx, above 25, the abx will have very little effect. At least that is what I am seeing right now. The 25-D seems to be the most critical factor as to whether the immune system is able to start working." Rx is checking your diet for D and if using any supplements that may contain D. (may be listed or unlisted)
You won't start killing the bacteria in earnest until your 25D drops. So be careful that herx may creep up on you, as your fat storage of 25-D is gradually depleted.
and see the self assesser herx checker FAQ. Why isn't the Marshall Protocol working? what am I doing wrong? .
When you can, please fill further required details into your signature line < see this link for details to include Thank You ..
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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Aussie Barb
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Posted: Thu May 18th, 2006 00:54 |
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Amy
re your edit on outpatient surgery.
see FAQs for Information that you may wish to print for your Drs files:
I need to have surgery. What should I know about anesthesia and the Marshall Protocol?
Why do I need to ask for a local anesthetic without epinephrine? Your Dentist and your Surgeon need to know
I need to take a different antibiotic for awhile. What should I do?
PAIN CONTROL
scroll to see Belinda's tips re appointments in FAQ What precautions do I need to take when I am going out or when travelling away?
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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jrfoutin
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Posted: Thu May 18th, 2006 21:39 |
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AmyEliz,
I was quite light sensitive even indoors in the cave for several months. I still have a difficult time during drives though so I bought some "hook in" NoIRs at indoor strength to wear sandwiched between my prescription glasses and the darkest NoIRs while driving. I see just fine and no eye pain or sun flare backlash.
I also like a black-out eye mask for sleeping to give my eyes a total break at night. LED alarms, cell phone rechargers and other little lights at night were enough to wake me sometimes.
The good news is that I'm less light sensitive now. I still have a fairly dark cave and I don't like going out in the light, but I can manage it with double NoIRs and night eye mask.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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AmyEliz
Member in Phase 3
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Posted: Fri May 19th, 2006 00:18 |
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Thank you for the suggestions. It may be my only option coming up in the next couple of weeks. I guess the light issue is going to get worse.
Does anyone know of an easy apply and take off (off in a couple years) film for windows? Foil isn't working, my husband like to open the windows when I am not at home.
AmyEliz
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Aussie Barb
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Posted: Fri May 19th, 2006 00:30 |
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Amy
see AVOIDING SUNLIGHT and BRIGHT LIGHTS and scroll down to 3rd post that has a lot of suggestions to choose from..
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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AmyEliz
Member in Phase 3
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Posted: Sat May 20th, 2006 01:39 |
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Still not much happening on 25mg mino. A few aches in the hip joint area, right elbow, right wrist and electrical shock/spasms in different areas of the body concerning the muscles. Still on 25mg mino. I took a Naproxen last night (500mg) for inflammation; my feet are swollen when getting out of bed but nothing even close to last year March. Nothing has been close to last year March. I really want to start the 50mg Mino tomorrow.
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Aussie Barb
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Posted: Sat May 20th, 2006 04:50 |
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Amy
If you feel you are ready to increase, do so.. just be aware that as the 25D decreases the herx can kickin at any time and you will be prepared..
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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AmyEliz
Member in Phase 3
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Posted: Sun May 21st, 2006 00:42 |
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I increased to 50mg mino today. We will see what happens.
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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AmyEliz
Member in Phase 3
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Posted: Tue May 23rd, 2006 18:20 |
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I took my second dose of 50mg MINO this morning (every other day). I had some mild joint pain but it does not last longer than a few minutes to maybe an hour. I am exhausted! I will stay on the 50mg for another 2-3 weeks to get the understanding of herx and physical cycles. I found so far that the day of MINO, I have less pain/soreness and the following day more joint flare-ups.
Other symptoms include, pounding in my ears (most frequent), tired feeling eyes, constipation, lack of appetite, cold feet and hands and an occasional headache.
Where do I find the information for the correct way of posting my dosage, frequencies, etc?
Last edited on Tue May 23rd, 2006 18:25 by AmyEliz
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Aussie Barb
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Posted: Tue May 23rd, 2006 21:07 |
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Thanks Amy
re Index: Each time you post, to assist Staff and others reading, please list your MP meds :noting eg:
doses / schedules / change in dose or schedule / length of time at this
dose or schedule and any other pertinent information regarding your MP meds.
You may like to look how some are doing it in their progress reports.. thank you...
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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AmyEliz
Member in Phase 3
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Posted: Wed May 24th, 2006 18:23 |
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Index: dose #_ of Mino 50mg Q48H, mino due day. Benicar ....
Thank you Barb
I have been experiencing some mild Herx's, not too bad and I'm now taking 50mg q48h of Mino. The Herx's are short term joint pain, some involving a sharp jabbing pain that happens once or twice and then goes away. I did have a heart herx yesterday. Very different from my usual chest pains. More like a tightness and a miss of a beat and then gone. It didn't even hurt like my usual chest pains (the pain was less). I was very tired yesterday and stayed home from work. Pounding in my ears have been consistent. My muscles stopped aching a few days ago and the joint pain took it's place. AM nausea stopped last week but started up this morning.
I'll be taking my q48h - 50mg Mino this evening.
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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AmyEliz
Member in Phase 3
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Posted: Wed May 31st, 2006 05:27 |
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75mg Mino Q48H, Benicar every 6 hours
Increased my Mino to 75mg 5/28. Felt some differences. Joint pain started but nothing that lasted more than 3-5 minutes and at times an hour or two. Joint pains move quickly throughout the body, in places I have never had issues before starting MP. Stabbing eye pain, swollen feet and hands, fatigue, moodiness, ache muscles are a few symptoms. 5/30 felt flu symptoms.
Am I killing the bugs? I seem to be experiencing much less than many others are. I have read the “Is MP working for me?” and other sites. I have been following the rules and it does not seem to be hitting me as hard. Granted, I was diagnosed with RA 1 year ago and was on Enbrel for almost a year before MP, perhaps it has something to play in the amount of pain I have experienced. My herx have been very mild (except brain fog and light sensitivity) and after 6 weeks of MP and 12 weeks of meds free, I am pleased to say I am still without unbearable pain I had felt before. I am wondering how many MP members had started the protocol within a year of the first symptoms and had the same results.
Last edited on Wed May 31st, 2006 05:31 by AmyEliz
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Aussie Barb
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Posted: Wed May 31st, 2006 08:51 |
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Amy
The effectiveness of the antibiotic against the bacteria that are driving your Th1 inflammation means that you will get a Herxheimer reaction. For those who have had to bear harder disease symptoms, it can be more difficult to define the herx/symptoms. and also as mentioned above, the 25D level is expected to suppress the herxheimer to some degree until it drops.
see What is tolerable Herxing?
Herxing/no herxing/slowed herx
HERX .... What is it?
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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carol
Moderator
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Posted: Fri Jun 2nd, 2006 04:42 |
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Amy:
It sure sounds like to me that you are herxing. I recall that when I started I had a lot of transient and unusual symtoms. Don't worry! It's happening  .
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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AmyEliz
Member in Phase 3
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Posted: Fri Jun 2nd, 2006 05:10 |
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Benicar Q6H; 75 mg Mino QOD
Last night I had abdominal cramping, R & L joint shoulder pain, R & L outside of hand muscle pain, R & L of leg just below knee, inner area pain, feeling of a bad bruise on both sides of my leg and fatigue.
Tonight a different issue, I had my first strong heart herx. A constant wrenching pain lasting more than an hour, so much different from my usual chest pains lasting a minute or so. My usual pain feels like a needle in my heart; strong, painful and in a precise area. This time it felt like a wrench holding the heart in place but definitely not my usual pain, usually that lasts minutes. No breathing problems or increase of pain when taking deep breaths. I was light headed. I took my Mino at 7:00P and this started @ 8:15P. It is now 11:00P and have not had another herx. Notable fact, I had daily heart pains for many years but for the last 2 – 3 weeks, I have not had any chest pains. I like that!
Nothing I can’t handle! 
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Aussie Barb
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Posted: Fri Jun 2nd, 2006 05:15 |
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Amy
Increasing the Benicar to Q4H should help the pain and make it easier on you..
see the FAQ What is a cardiac Herx? When should I be concerned?
Any time that your symptoms are going past tolerable: Check the precautions and the options one at a time to assess: do not hesitate to use any of the adjustments suitable to you. Tools to check: << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
If you are concerned do not hesitate to contact your Dr.
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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AmyEliz
Member in Phase 3
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Posted: Fri Jun 2nd, 2006 05:16 |
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Hi Carol,
I was wondering if things were working for me. Glad to know it is. Everything seems to be so different and WIERD!
Like the saying goes, "I going for the ride".
No one has yet to respond on the length of time in comparison to the starting of MP (see earlier post). I think it is a good study to look into.
Amy
Thanks Again!
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RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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AmyEliz
Member in Phase 3
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Posted: Fri Jun 2nd, 2006 05:23 |
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Thank you Barb,
I am so use to chest pains and WHAT might be a concerning one. This one was just different from my usual. I was concerned but not scared. I have read everything I could find in this site about heart herx and I take it very seriously. I will definitely remember the Benicar in times of this, probably should have taken it at that time. Should I start taking the Benicar every 4h now that this happen?
Thank you
AmyEliz
____________________
RA(3-05) MVP(1981) Age 43. 3/06/06> 1-25D=36 25D=33 08/06/06> 1-25D=35 25D=33 10/12/07> 25D=24.Avoid light & D, NoIRs| Started Beni 4/06. Started Phase two 7-06. Non-PM meds: Loratab #10, 500mg Naprxen,800mg Skelaxin, 10mg Flexeral, 2mg Valu
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Aussie Barb
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Posted: Fri Jun 2nd, 2006 05:29 |
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Amy
Anytime when your symptoms rise and begin to feel uncomfortable, you can see if increasing the benicar dosing is a help..
check out the intolerable Herx FAQ and the tools to check so you are aware of some adjustments you might make if it becomes necessary...
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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