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Kas
Member
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Posted: Thu Jun 25th, 2009 14:07 |
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This MP can get you in strange ways!!
After months of pretty stable BP ( albeit it my usual low 80/50- 70/40 ) range, my BP did a dive to 60/40's and even reached 57/3, last Friday, and since then I just cannot get it up to anything more decent.
So far, I have tried the following:
1) Stopped abx ( which was 25mg of mino Q72H- had taken a crumb of zith three weeks prior).
2) Added 20 mg of Beni inbetween my 40mg Q6H doses
3) Stayed home, indoors, reduced light with Noirs, rested ( off work now) as much as possible, but will still get just as low readings
4) Food vigilance and drinking tons of water. Even tried a cup of coffee, but BP increase was brief and transient. Salty food has not been able to help either ( salted popcorn, olives and added salt to food)
5) Reduced beni to 40 mg Q8H yesterday - no improvement Wiil try taking 40 mg Q4 H today
All the above have made no difference at all. Today, I plan on trying beni every 4 hrs, but that is the last thing I can do. My doctor is on holiday until July 9, which is probably just as well, as she would freak out with the numbers I have been having. Last count was 61/42 with pulse of 96. Pulse has got up to 110, but ironically, it can go as low as 75 even at these numbers.
I feel my energy is pretty low, but not as low numbers. Oximeter shows oxygen at between 95- 97, so not too bad, I have a mild ' woozy' feeling - not quite brain fog, but not quite clear either. I can feel my heart racing. Have occasional mild chest discomfort, but it does not last. I never fainted and do not feel like I will.
My biggest concern is my kidney function, which definitely is worse with lower BP. I have noticed that when I have a test done at around 85/55, I get a result in the low normal range, but lower than that always comes back abnormal in both creatinine and eGFR levels. Hopefully, this last week has not caused me any permanent kidney damage, as I just cannot get the levels up, no matter what I do. I am getting up to use the washroom between 3- 5 times a night now, which is sleep disruptive and I am tired from that. I am now trying not to drink after 9pm, as perhaps I am still getting rid of all I drink during the day, or kidney function is much reduced.
I am going to repeat my kidney bloodwork around July 7, in time for my doc to see it on her return, but I would like to see things a bit better before I do so.
I do realise I am having some huge IP here, but why is it not improving?
If all else fails, do I cut my beni down to 20 mg doses four times a day? Is that still a viable option in extreme cases?
Many thanks.
Last edited on Thu Jun 25th, 2009 14:11 by Kas
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Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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inuk2600
Member
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Posted: Thu Jun 25th, 2009 16:26 |
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Hi Kas, have you cut out potassium rich food from your diet? That's just a stab in the dark.
I did a wiki search for vasoconstrictors, here's what I found...
Claritin-D or Clarinase are OTCs that contain loratadine and pseudoephedrine, both of which can increase the blood pressure.
If pseudoephedrine is not allowed on the MP then plain Claritin (antihistamine) with loratadine only might be better.
This stuff is probably very bad if you already have a racy heart and I would be reluctant to try it, especially the pseudoephedrine.
DISCLAIMER: I'm not a doctor so everything mentioned above can be regarded as utter tripe.
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CFS symptoms | 25D9(Mar09) | 25D14(Jun09) | Ph1Apr09 | Ph2Aug09 | Ph3Jun10
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Kas
Member
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Posted: Thu Jun 25th, 2009 16:59 |
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Because my potassium was 5.2 when last tested, I have been making a concerted effort to cut down /eliminate very high potassium foods.
I guess I could try some Claritin, but would prefer to hear what the moderators feel.
Thanks for trying to be of help here.
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Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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inuk2600
Member
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Posted: Thu Jun 25th, 2009 17:05 |
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Just as a side note, I found the following line at
http://www.marshallprotocol.com/forum2/10.html
"It is okay to take antihistamines to treat intolerable symptoms."
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CFS symptoms | 25D9(Mar09) | 25D14(Jun09) | Ph1Apr09 | Ph2Aug09 | Ph3Jun10
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Kas
Member
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Posted: Thu Jun 25th, 2009 22:20 |
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Thanks.
I have been taking 40 mg of beni every four hours today ( no abx) and have managed to raise my BP to 78/50 with a pulse of 81. I feel a lot better than at the low, low numbers. Hope this will continue. Will stay on the dosage until I see things have stabilised to my usual low.
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Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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Joyful
Foundation Staff
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Posted: Fri Jun 26th, 2009 00:55 |
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Hi Kas. 
I didn't even stay at a Holiday Inn Express and here I am thinking I might have something worthwhile for you.
Most likely you are right and the low BP is in direct response to higher levels of inflammatory cytokines from higher IP.
Taking the Benicar q4h is really a must if you are going to protect your poor doctor's nerves from negative test results. 
Also, you probably have read it on Gail's thread, but Benicar 20mg sublingual at the same time as the 40mg orally really does help normalize the BP because it lowers the inflammation by a different pathway.
You've made it this far with your current doctor, you may as well put a little effort into getting the best labs you can this time so you both can relax a little. 
By the way, how much Zith did you take anyway?
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Kas
Member
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Posted: Fri Jun 26th, 2009 02:38 |
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I only took 1/64th, as 1/32nd had a real effect on my kidneys, and the lesser amount did too. Perhaps I am not ready for it yet, so back to phase 1 again for me.
Thanks for your response.
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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Kas
Member
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Posted: Fri Jun 26th, 2009 23:08 |
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Day 2 of taking 40 mg of beni every four hours and I do not think I am winning with my low BP or dizziness due to it. It has been a week now since this happened and aI am getting concerned about what it might be doing not only to my brain, my kidneys.
I am having a lot of readings of 68/40, with the highest today being 75/47. I feel pretty awful with my head in a mild spin constantly. I am also experiencing pain from an complex ovarian cyst, which had resolved and is now back.
How many more days can I go on like this? I have to improve before seeing my doctor again, or she will rightfully, be loathe for me to carry on, especially if kidney function is far worse, which I suspect it will be.
Would it be harmful to cut my beni down to 20 mg four times a day and see where it takes me, or would that not give my organs any protection and be useless? I am getting a house guest on July 9 and want to at least feel somewhat better when she is here.
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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paulalbert
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Posted: Mon Jun 29th, 2009 20:13 |
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Kas,
For a time, my blood pressure was as low as yours. Now it's normal.
Have you seen the relevant KB article on hypotension?
http://mpkb.mp-dev.com/doku.php/home:symptoms:hormonal:blood_pressure
Best,
Paul
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Kas
Member
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Posted: Mon Jun 29th, 2009 22:25 |
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Thank you, Paul. I appreciate your response.
I was thinking that perhaps my kidneys at this low pressure, and also my liver, do not eliminate the benicar at the same level as others, so my serum levels of benicar may be too high - hence my elevated potassium levels right now.
So, is there chance that I would need less benicar and still be protected? I was thinking along the lines of 20 mg every 6 hrs. Is there anyone on the MP with kidney and BP issues who has been successful with less benicar? I would be most grateful to hear, as it may be a way for my doc to feel more comfortable. A reading of 56/37 just won't cut it with her, that I know for sure!
Right now, I am back to taking beni Q6H and have had a low of 56/40 and a high of 80/49 ( yahoo!!). With rest, dizziness has been more tolerable, but energy levels are really low. No abx right now until things settle down.
Will let you know what next kidney tests show after next week - it will prove whether BP and kidney function are indeed related.
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Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Jun 29th, 2009 22:56 |
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Kas,
The safest thing is for your Doc to stick to the guidelines. If she can't bring herself to do that, then you need to find another Doc. As the new Phase 1 guidance clearly points out, you are placing stress on your kidneys by reducing the benicar dosage below the level of full palliation.
http://AutoimmunityResearch.org/phase1.pdf
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Kas
Member
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Posted: Mon Jun 29th, 2009 23:06 |
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Thank you so much, Trevor.
I will certainly tell doc what you have said and I will refer her once again to the guidelines. So, the way I understand it, your blood serum levels of benicar cannot get too high even with extremely low pressure and less than optimal kidney function? How do I keep my potassium levels in range if there is so much of it in virtually all fruit and veges?
Right now, I am taking 40 mg beni Q6H. I want to see what the kidney function tests show with the low BP and if there is definitely a correlation there
Just a quick question - if 120 mg of beni is optimal, can it be broken down into 20 mg Q4 H during the day and then one dose of 40mg at night, or is there no point in doing that? I would like to be rid of the light - headedness, and cannot figure out why this is happening when low BP in the past never caused it to be ongoing.
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Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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Deedee
Member
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Posted: Tue Jun 30th, 2009 00:02 |
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You are having ovarian pain as IP and an elevated creatinine (ignore the GEFR, as it is estimated based on your other values.) How "high" is the creatinine?
My experience was that I had a high BUN and lymph node swelling during most worst IP. My biggest IP during that time was FATIGUE AND ANXIETY. I dropped back to mid-Phase one and took it much more slowly moving up. My kidney values returned to normal once the IP was in better control. I can clearly see now that my kidneys were working hard to process the bacterial die-off.
You can search my name to read about my journey. You BP of 57/3 must be a mis-type or the BP reading was wrong.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Kas
Member
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Posted: Tue Jun 30th, 2009 01:24 |
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My ovarian pain stems from a complex cyst, but I would not overrule it playing up due to bacterial die- off. In March, my cyst of many months standing cleared up, and returned a few weeks' back. I seem prone to them, even now in menopause.
Sorry about the typo - BP was 57/37 when I posted.
My BP machine and my doc's cuff have been compared and are pretty much spot on, so I do know it to be as accurate as it can be.
I am doing my best to try and limit light, as that may be the cause of the light headedness, after being hardly light sensitive for months. It seems things do come back to bit you from time to time!
I went for a short stroll this evening- felt much better, so perhaps getting out of the hot house is a good idea. Had a nap this afternoon, which was also helpful in feeling more refreshed and less moggy.
One good thing about fatigue - I sleep well and even fall asleep quickly after my nightly visits to the washroom. I can sit anywhere and nap these days!
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Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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Deedee
Member
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Posted: Tue Jun 30th, 2009 01:31 |
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I have read, but I will stand corrected if this is wrong, that one should not give too much weight to a single BP as it goes up and down throughout the day, but instead take an average of all readings in a day.
My BP seem quite low to start, and I had dizziness, but I soon learned that the dizziness did not correlate to the BP. As I progressed, the dizziness disappeared and I concerned myself less and less with the BP. I never take it now. When I have had it taken it usually is runny somewhere between 100-90/80-60. It was lower at times, when I started out.
____________________
Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Kas
Member
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Posted: Tue Jun 30th, 2009 02:30 |
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Thanks.
I don't think you should ignore the eGFR. Every time mine has been really low, my creatinine clearance test has been abnormal by a fair amount and my kidneys have shown casts, which show they have taken a hit. I am not sure what my current creatinine value is, but will have it tested again next week. I have noticed that the lower my BP, the worse it tends to be - and this is something we have seen over a few testings, so is not just random.
As per the MP guidelines, my doctor keeps a pretty careful eye on my kidneys, and is encouraged to see the values do get better when I feel better. We can almost predict a good/ bad result these days. I look forward to the day when I get a really good kidney result again. My kidney involvement must have been occult, as it did not show for the first year or more on the MP.
I have printed up all the new guidelines for doc to read once again and put into my file. I know she will do so. I do see that as a last resort, beni can be reduced and then vamped up again as soon as symptoms are better controlled. We won't take any action until the kidney tests results are known.
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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Kas
Member
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Posted: Tue Jun 30th, 2009 19:55 |
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My nephrologist friend in NZ wants to know if there have ever been any studies of aldosterone levels with ARBS at MP dosages in anyone with normal or compromised kidneys. If the level is diminished, would it affect the electrolyte levels via the kidneys?. If hyptension is often an indicator ofIP. then can the palliative effects of a lower dose of benicar be more easily tolerated because it produces less severe IP?
My friend is very concerned about damaging my kidneys further with such low BP and now that I have slightly raised potassuim, this is adding to his worry. Is there any data which can put him at ease about my safety here?
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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paulalbert
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Posted: Tue Jun 30th, 2009 19:57 |
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This is the best info I could find:
http://mpkb.mp-dev.com/doku.php/home:protocol:olmesartan:kidney_disease#benefits_of_olmesartan_for_patients_with_kidney_disease
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Kas
Member
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Posted: Tue Jun 30th, 2009 23:47 |
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paulalbert wrote: This is the best info I could find:
http://mpkb.mp-dev.com/doku.php/home:protocol:olmesartan:kidney_disease#benefits_of_olmesartan_for_patients_with_kidney_disease
Thank you. Will pass the document on.
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Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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Kas
Member
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Posted: Wed Jul 1st, 2009 21:49 |
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I had a reply from my friend re the links Paul sent.
Here is what he has to say:
" I understand that ARBS are renoprotective in rats at 5x the regular dose, but 40mg beni Q4H is 12 X the regular 20 mg dose, and 20 mg Q6H is at a minimum 4X the regular dose, however, with kidney and liver clearance problems, it could be even higher. Therefore, wouldn't 20 mg Q6H be a high enough dose for folk with renal insufficiency , who definitely need a higher BP to adequately perfuse the kidneys? When BP drops to dangerously low levels ( Kas reports 57/37), acute kidney damage can easily occur and cause the patient more harm than good in the long run. As a clinician, one cannot blindly follow guidelines and assume the patient will be alright."
My MP doc has left me on 40mg Q6H for now, but she ran kidney and urine tests, for which I await the results by tomorrow. I also printed up all the new guidelines and links for her. She says she will read everything and get back to me as to what to do. Today, I have had Bp ranging from 65/44 to 74/47 with a resting pulse of between 100 and 95 and a fair amount of light headedness, despite being well hydrated and salted. I am off all abx and my last crumb of zith was taken on June 5.
Last edited on Wed Jul 1st, 2009 21:55 by Kas
____________________
Sarcoidosis, dx by splenectomy 2003. Liver, lungs, lymph nodes, kidneys?, stomach.On MP since 2007- now back to phase 1, No abx right now, Beni 40mg Q6h.
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