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Barney
Moderator
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Posted: Tue May 5th, 2009 07:06 |
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Hello MarySue,
It is such a treat to know that you are feeling well enough to take in a sitcom and actually enjoy it enough to laugh.
Glad to see you used the added Benicar to improve your IPs.
Your 25D is still pretty high, so beware of some very intense IP's. Be careful.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Marysue
Board Staff
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Posted: Tue May 5th, 2009 17:16 |
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Thanks Barney. I am looking into getting my primary D-level checked again. It's already been 3 months and I'd like to know whether or not it's dropping. I don't want to wait until I'm approaching Phase II and find out they haven't dropped at all.
Somewhere I read about having the test done for $60 or so?
Also, I plan to wait the full 3 weeks before starting Mino and eventually whenever I am ready to start Phase II, I hope to wait until my D levels are at 12 or below (as described in the new phase I/II handouts) so I can manage the IPs better.
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Barney
Moderator
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Posted: Tue May 5th, 2009 23:29 |
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Hi Marysue,
Very smart lady
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Marysue
Board Staff
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Posted: Wed May 20th, 2009 06:13 |
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Wow--time flies! I'm on day 23--made the full 3 weeks on Benicar only....I'm glad I did. Just when I though nothing new was going on (Day 18) I had two days of weird dreams and what felt like more hormonal shifting.
Other symptoms:
I have had a variety of new minor pains show up, mostly muscle pain--including chest muscles and two very brief episodes of some heart pressure (feels like a vague cramp).
My normal 85/60 BP has been mostly steady with occasional drops to 75/55, 65/45 and then back to 80/50 or so. I have stayed well-hydrated and the changes in BP do not correlate with any other symptoms. When I feel light headed or dizzy and check my BP, it's often still at 80/50. Thanks to all the great posts by others with low BP, I'm not worried about it and see it as just another IP.
I'm getting ready for my first dose of mino (25mg). I'll probably take it tomorrow night. Of course I feel just like I did starting the Benicar--nervous, excited, hope I can handle it. Honestly I don't know how everyone deals with taking each new step on the MP. I guess when I'm farther along, I'll be more used to knowing it's time to take the next step and then "just do it."
I still feel "not well" during the 5th hour of Benicar. I got an increase to my prescription to get 150 tablets/month instead of the 120/mo. So I can take it every 5 hours if needed or stock up on some extras if I stay at every 6 hours.
I'm also getting my D levels checked again this week since it's already been 3 1/2 months since they were done. If we go to Quest tomorrow, even completely covered, I'll see how I feel when we get home before I decide on taking the first mino dose. It's been raining for 3 days now and supposed to be cloudy tomorrow too--so a good day to do the trip.
Thanks again,
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Barney
Moderator
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Posted: Wed May 20th, 2009 15:24 |
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Marysue,
I would reconsider the Mino tommorow night and get your 25D results. With cardio involvment it would be wise to go slowly. If it is below 35, you could poceed, but if it is above, you might want to lower it more before starting Mino. We want you to have tolerable IPs.
Glad you are doing so well Marysue and that you are putting on some weight.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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eClaire
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| Location: | Virginia USA |
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Posted: Wed May 20th, 2009 18:19 |
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I am writing to underscore what Barney said about heart involvement. I did not have it on Beni alone but with my first 25mg Mino I had heart arrythmia (sp) at the 47 hour mark (not enough to send me to the emergency room however) and significant heart IP during the first 4 months on Mino. That was with the old guidelines. Also, my 25D was 29, below the guideline and still dealing with the heart IP to the extent that I did was very wearing on me, but it did not scare me because I was so tired of feeling like death that I was ready and willing to check out. Now that I understand the MP and the true promise of life that it holds, I would not risk that if I had other options.
Please consider holding off on the mino for a little while.
Also, you might want to ask your doctor to prescribe Benicar q4h. You don't have to use it like that, but it takes away any worry that you'll run out of meds if it turns out you do.
Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Marysue
Board Staff
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Posted: Wed May 20th, 2009 20:14 |
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Barney and Claire,
Thanks for the input. I have no problem holding off on the mino for now. I understand in the new guidelines that it's OK to do Benicar alone for as long as needed.
I'm confused though about the meaning of the Vit. D numbers and cardiac involvement. What do you mean by having the D levels under 30 and still having heart IP? Shouldn't all IPs increase as D levels drop due to activating the immune system? Also, I understand that it's when the D levels go below 20 that there's much more immune activation which should result in even more IP--especially cardiac involvement that was previously "sub-clinical".
I assume/expect to have some degree of heart IP because of my previously high 1,25-D (70)--even though my cardiac tests were all "normal". .....OOPS!!...I think I get it. Did you mean that your levels were ONLY at 29 compared with mine being at 70??? That makes more sense. Although, I haven't read anything that would tell me to expect severe problems. Even people who already had major heart problems have lived through their heart IP and improved. Even going slow, at some point I'm going to have to live through the IPs. I understand the goal is to help keep them tolerable by being cautious in the approach.
So, given that I probably have some level of cardiac involvement, should I do Benicar alone until my D levels are down to 12 and stay there AND I am having no more heart IP at that combination before starting mino. I just want to wrap my head around this because that could be several months.
Claire, what were your other "significant heart IPs" during the first 4 months on mino? I've talked to 3-4 other MPers who have had chest pain, heart pressure/cramps, and tingling/nerve sensations around the heart during the first year on MP.
Also, I got my prescription in the mail today for a "therapeutic substitution" of 400(!--that's not a misprint) 40mg Benicar tablets. That will substantially increase my stockpile!
Marysue
"...living in the dark, but grateful for the light of HOPE!"
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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eClaire
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Posted: Wed May 20th, 2009 20:57 |
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Hey, I think that what Barney was saying about the 25D (though I'm not familiar with that cut off range that she mentions) is that as the 25D drops the likelihood of increased IP is greater and so if you are having heart IP now, you may have more later and why add abx to the mix, which might only increase it as well. So using her guideline, I told you what mine was and let you know I had no heart IP prior to starting the abx and still had significant heart IP when I started the abx.
Although I did not have arrythmia again (thank goodness) and I did not really develop bothersome bouts of tachycardia until my mod phase 2 combo (though I still had it), my heart felt consistently and very uncomfortably squeezed for a very long time. There were times I could only get relief from the discomfort if I lay on my right side with my arm extended upward, which is weird because supposedly folk with CFS have fill issues and feel better when they lay on their left side. There was heart and chest pain and shortness of breath (lasting for hours while lying flat), and one symptom I called the DeathEater IP. When I had this, I felt like a heavy weight was bearing down on my chest and pushing my life right out of me...like my life's energy was being sucked out of my heart/life via my mouth. Odd, very hard to describe sx, but the sensation reminded me of the Death Eaters in the Harry Potter series. At any rate, the IP was signficantly different from the squeezing that I gave it that name, and that description caused one other MPer to write me who said she had the same IP and hadn't seen anyone else report that one. It was ugly.
These sxs were only tolerable because I thought I had no other choice and did not mind the prospect of dying (I DO NOT ADVISE THAT ANYONE TRY THIS AT HOME, as I really did not care if I lived or died). For the most part they were not transient, lasting for many hours on end with nothing bringing much relief except for eating apples (because of a chemical in apples that can reduce IP in some).
The plan of action you described sounds wise to me.
Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Marysue
Board Staff
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Posted: Thu May 21st, 2009 05:56 |
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Claire, thanks for the description of your symptoms--it's very helpful. I forgot about the left & right side sleeping thing you described in CFS patients. It's been a long time since I read about that so I don't remember what the "filling" is. I too, have felt better sleeping on my left side for about 3 years but have been switching to the right side when I get heart pressure, chest pain, or mid-back pain. Also, I've had mid-back pain between the shoulders for a couple of years that did not resolve with chiropractic adjustments. Since my heart tests have remained normal I didn't pay too much attention to it, but now with my "new MP eyes", I see it as more evidence of probable cardiac involvement with TH1 inflammation.
At what point on the MP did your heart symptoms resolve? Or are you still having heart IPs? I see your tag line indicates you started Ph1 again in January. Where are you now?
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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eClaire
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Posted: Thu May 21st, 2009 06:42 |
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The worst of the heart IP resolved in the first six months except for the tachycardia, which got worse, I think (it's hard to say without looking at my PR). I switched from Mino to another abx that some find easier (I was on it for 6+ months) and for me, all I can say is that it seemed to have no affect on IP at all, and so when I went back to Mino, all of a sudden I had some heart IP again (this past Jan/Feb), but nothing as intense or as long as I did at the beginning (e.g., some pain, pressure, and SOB). So it still shows up here and there, but mostly it is history.
Of course, I think that means I probably still have lots of heart CWD to knock out and I may see a resurgence of some heart IP when I switch to other abx or back to the combos, but I don't think I'll ever see (and I hope I don't ever see) anything like I saw in the first year.
Like you, pre-MP all of my tests showed normal even though for years I had experienced some symptoms that had me thinking heart involvement. (I also had kidney issues and was told that my kidneys were fine too and the MP has shown that not to be true.) Before starting the MP, I believe I had only a few months to a couple of years to live, as I think I was headed for congestive heart failure. My brother died of congestive heart failure at age 53 and the doctors missed it until part of his heart literally died. (Actually, he died, was revived, went through emergency heart surgery, and was expected to recover if his body could handle the process and he stayed in bed and rested until his heart had a chance to recover--all but the dead part--or so they said. He had AIDS and a lung infection raged and took his life within a couple of days of the surgery.)
I'm still using Mino alone and having significant fatigue IP (fatigue was my worst sx pre-MP). Hanging out with what my body can handle (50mg of Mino). I am waiting for my kidney labs to drop to high normal or just above normal, and at that point I am going to ramp the Mino. I discovered that when my kidney labs reached a certain level, the IP I was experiencing was more than I wanted to tolerate (the first year plus using the old guidelines had worn me down and I've readjusted my sense of what is tolerable), and so I am using my monthly kidney labs as my guide for now.
At some point, I imagine those labs will straighten out and I'll have to use IP that I can actually feel to determine when to change my meds. That's how much my IP has decreased over the last 2.5 years...I'm having to rely on labs until I get a sense of when I ought to be ramping. Previously, my kidney labs were higher than normal--about at the range where I've been over the last couple of months--, but the IP associated with that was pretty wild. Now, it is mild in comparison.
Claire
Last edited on Thu May 21st, 2009 06:44 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Toni D
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Posted: Thu May 21st, 2009 14:39 |
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MarySue,
Just wanted to share with you re Quest that you can actually go online and make your appointment with them. In my area they open at 6:30 am and I usually try to be there around 6:00, but the last time I made an appointment for 6:45 am and was out before 7:00 am. I realize it's daybreak by 6:45, but there wasn't any wait and I was back home in no time at all.
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Marysue
Board Staff
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Posted: Fri May 22nd, 2009 05:30 |
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Thanks Toni--I'll see if I can get to Quest early in the day. We didn't make it out yet. It's nice that it's cloudy, but with all the rain, I've been bringing the horses in the barn to dry out--so more work than usual (mucking stalls) and I've had to rest in between keeping up with farm chores.
Claire, that stuff about following your lab results makes sense. I think I've read that before but forgot about it. In addition to the heart sx, I've had flank (kidney?) pain off and on over the past 8 months. I guess I've just got this stuff everywhere!... On the Benicar it's been mild but the last two days it's gone from "noticeable" to "uncomfortable" on both sides. I drink a lot of water, but when I get flank pain, I keep drinking all the water I can handle and it does seem to help.
I don't know how we would tell a difference between whether that is TH1 inflammation or the kidneys dealing with bacterial die-off. I hope it's the latter. Anyway, I don't want to overload my kidneys thinking the pain is tolerable and then find out later that the labwork indicates that my kidneys are really struggling. I need to do more reading about that. 
Everyday I say I'm going to try extra Benicar and I just don't do it because none of my sx have become intolerable yet. I spend that 5th hour thinking about taking it early and before I get to it, the 6-hour alarm is going off! Maybe I need to get rid of the mindset that I need to wait until it's real bad to try extra Benicar. Also, I think I'm concerned that more Benicar means more immune activation. I think I'm trying to balance my need for the anti-inflammatory effect with limiting the immune activation part while my D levels come down. Which brings me to this--
QUESTION FOR ANYONE: Does extra Benicar increase immune activation?
The pharmacy called today and said my insurance approved the prescription for extra Benicar so I know I'll have plenty, regardless.
Marysue
"flooding in Florida...thinking about canoeing by moonlight!"
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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eClaire
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Posted: Fri May 22nd, 2009 15:15 |
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For me more Benicar meant more immune activation (except that it did palliate on an as needed basis for light-related neuro); however, q4h is what protects the organs, and so getting there as one is able (and one needs organ protection for high IP) is good. If I had the MP to do over again, I would have not added abx until my IP was tolerable with Benicar at q4h. I'm 2.5 years in and finally q4h Benicar is tolerable (and I hope now palliative). Whoopee!!! I wish I had done that before now.
At any rate, given your sxs, balancing sounds like a good plan with the idea that you work toward being able to tolerate q4h if you are able.
Claire
Last edited on Fri May 22nd, 2009 15:17 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Marysue
Board Staff
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Posted: Fri May 22nd, 2009 16:41 |
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That makes a lot of sense to me. With all my reading posts, I've been confused about some people saying they felt worse with extra Benicar. I was just thinking of it as palliative only--the more, the merrier.... It would make sense that they feel worse until they can tolerate that level of extra immune activation.
Also, if we keep adding in abx and/or ramping too early, it's possible for someone to never get to where they can tolerate the extra Benicar. So for now, I'll work with the Benicar-only phase and see where it takes me.
Marysue
If anyone has a different perspective, please share.
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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eClaire
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Posted: Fri May 22nd, 2009 17:38 |
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| Marysue, what you theorize is certainly what happened to me. It wasn't until I stuck with one tolerable dose of Mino and then worked at tolerating the extra Benicar that I was able to do it. (I could also have backed down to Benicar alone and done that as well, but I found that just dropping back on my Mino after more than two years on the MP allowed me to do that.) As I said, I had to back down off of my abx and that was after already returning to square one and starting Phase 1 all over again, which, really, is just another abx strategy. I find it important not to get hung up on the titles (e.g., what phase we are in). What's important is doing what is best--to the best we can figure--at the time. Flexibility...the MP demands it. Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Marysue
Board Staff
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Posted: Fri Jun 5th, 2009 06:46 |
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Updated status and questions:
I'm still on Benicar only but I'm taking 5/day instead of only 4--about every 4.75 hours. Eventually I plan to take 6/day (Q4hr) to see if I can tolerate the increased immune activation. I can really tell a difference and I DO feel better taking more. I've had some increase in light sensitivity but not intolerable.
Barney, I know you've mentioned you're taking 7-9 Benicar daily and in stage 5 of recovery. I don't have any problem with taking more Benicar, but since I am in the very beginning of the MP, I have some questions about how "Benicar only" will affect my treatment.
Am I correct in assuming that more Benicar means more immune activation? Once I'm taking it every 4 hours, is any extra Benicar (the 20mg bolus) beyond that just palliative? Or would that increase immune activation too? I want to make sure I get the maximum immune activation AND the maximum organ protection/anti-inflammatory benefit from the Benicar before I ever start on the abx--especially since I'm waiting to get my D-levels again and reduce my cardiac IP anyway.
Even though the new guidelines say the minimum Benicar should be Q6hr, is there any reason for me not to take it Q4hr all the time and sustain that level even when I start the mino? I keep reading posts where people talk about going back to Q6hr as soon as an IP or episode has been worked through and symptoms are tolerable again--making that their "base level" of Benicar, but IMO that is also reducing immune activation and organ protection.
I already understand that it's OK to take more Benicar so I'm not looking for reassurance. I'm really just asking for more input--and possibly Dr. Marshall's perspective on the strategy of increased Benicar in the beginning of the MP for the purpose of immune activation--and sustaining that while taking the abx. Is there any reason to think that it could be too much for me to sustain the extra Benicar at my phase of recovery?
My discussion with Claire (see previous 2-3 posts) was very insightful and makes sense to me, but I want to make sure I'm on the right track.
As for IP, I have had some weird sensations around my heart but no more "cramping" episodes. It happens every third night or so and usually between 3-5 am. Other IP includes muscle pains, left kidney pain, and some parasthesia--all transient/intermittent and not intolerable.
Thanks,
Marysue
P.S. I forgot to mention my weight is up to 123 and stable and I have real solid calf and thigh muscles again--NICE!!
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Cynthia Schnitz
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| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
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Posted: Fri Jun 5th, 2009 17:32 |
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| Isn't it interesting how 3-5 am seems to be a time for things to show up. When I was having problems with Calcium, any time I'd get too much, which was very little, I'd wake up around that time with the sensation of electricity briefly running thru my upper torso. Now I get a very watered down version if I maintain 4 cups of dairy a day, but 3 is OK, and I used to have this problem big time if I maintained just 1 cup of dairy a day (no Ca supplements of course). Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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Marysue
Board Staff
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Posted: Sun Jun 7th, 2009 06:24 |
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Cynthia,
Yes, that's interesting about the 3-5am time. All of my weirdest symptoms have happened during that time.
I'm curious about your reaction to the dairy. I would have thought it was the amount of natural vitamin D that caused a reaction. I know that calcium supplementation can be problematic but are natural food sources of calcium a problem too?--or did you have a specific problem with calcium?
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Marysue
Board Staff
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Posted: Sun Jun 7th, 2009 06:33 |
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Barney,
Another question about the Benicar when you get to my question from yesterday (see previous post June 5th)--
When you mentioned taking 7-9 Benicar/day does that mean 40mg Q4hr + 20mg bolus? Or do you mean 40mg Q3hr or some other combination?
Thanks,
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Marysue
Board Staff
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Posted: Thu Jun 11th, 2009 06:55 |
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Bump!
For Barney, when you get a chance look at my question for you here (posted last Friday).
Sorry you are recovering from helping your friend last weekend. Hope you're feeling better.
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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