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Lenna

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Everything posted by Lenna

  1. I don't know, Abby. We suspected that Danny was vasoconstricted because vasoconstricting drugs like Midodrine, Mestinon and Adderall made him much more symptomatic. Then he participated in an Nitric Oxide research study, which showed that he was deficient. The logical conclusion to that is that he is vasoconstricted.
  2. Rama, My son who is taking Losartan has been reading this thread and has a question for you: Where did you read that Losartan boosts Aldosterone responses in people with POTS who have elevated Angiotenin II ? He'd like to read that study. Thanks.
  3. I agree...it does not help with tachycardia. Also, I just want to stress that this medication is helpful only for people who are vasoconstricted. The majority of people with POTS are vasodilated, I believe, and Losartan should not be taken by anyone who is vasodilated. I guarantee that it would make you worse!
  4. Jangle, Danny experimented with a dose a little bit at the beginning. He tried splitting it between morning and night, for example. But the best response has been from 25mg. in the morning, along with .5 mg. Florinef.
  5. The good news is that my son has been on Losartan for over a year now, and the benefits have not waned.
  6. My son takes both. He was feeling somewhat better when he started Losartan 25 mg., but his bp became too erratically low. The combination of Losartan and .5 Florinef works great for him. He's still symptomatic, but not nearly as much as he used to be.
  7. When my son was very sick with POTS and my husband was very sick with an unrelated illness, I found that singing along to the radio could completely (albeit temporarily) lift my depression. Singing can be very powerful! Because I am a pretty horrible singer, however, my family wasn't particulary supportive of my form of therapy. So through my town's adult community education program, I started a singing group for non-singers. No judgements or lessons - just a fun place for people to sing in a group without worrying about how we sound. We sing along to youtube videos of oldies - mostly songs from the 60s and 70s. The group has really taken off, and even got fantastic coverage by the Boston Globe newspaper! I've created a website and posted some of the songs with their lyrics. Check it out and sing along! www.all-sing.com Jangle- Walking on Sunshine would be perfect for my group!
  8. UPDATE: Split FDA Panel Favors Droxidopa for Hypotension By John Gever, Senior Editor, MedPage Today Published: February 23, 2012 An FDA advisory committee voted narrowly in favor of droxidopa (Northera) for neurogenic orthostatic hypotension in patients with certain neurological disorders. By a 7-4 vote, with one abstention and one member not voting, the agency's Cardiovascular and Renal Drugs Advisory Committee recommended on Thursday that the drug be approved.
  9. I know that some institutions are doing clinical trials of droxidopa for POTS. Beth Israel in Boston in one of them. Here is an "interesting" article about the drug. I've copied the entire article here because I don't think the link will give you the full text if you're not a subscribed member. http://www.medpageto...mail.com&mu_id= FDA Skeptical of Hypotension Drug By John Gever, Senior Editor, MedPage Today Published: February 22, 2012 An FDA staff review of droxidopa (Northera) for treating neurogenic orthostatic hypotension in patients with certain neurological diseases has recommended against its approval, according to documents released Tuesday. The review, released in advance of a Thursday meeting of the agency's Cardiovascular and Renal Drugs Advisory Committee, cited lack of evidence that droxidopa is effective for longer than four weeks and "worrisome safety signals" seen in clinical trials. The latter included deaths, strokes, heart attacks, hypertensive crises, and underlying disease progression that occurred during the open-label phases of the trials. Droxidopa is being developed by Chelsea Therapeutics for treating symptomatic, neurogenic orthostatic hypotension in patients with primary autonomic failure -- which can be associated with Parkinson's disease and multiple system atrophy -- dopamine beta-hydroxylase deficiency, and nondiabetic autonomic neuropathy. Currently, the only drug specifically approved for this indication is midodrine, and the FDA may soon pull it from the market because it has never been shown to be effective in rigorous trials. Eight other drugs are used off-label, according to the FDA review, including indomethacin, desmopressin, and octeotide. Most have multiple contraindications and all have significant side effects, the review noted. Droxidopa is a prodrug for norepinephrine, converted both peripherally and centrally as it crosses the blood-brain barrier. It therefore acts as a vasoconstrictor which, at least in theory, should help patients retain adequate blood pressure when they stand up from sitting or supine positions. Chelsea's marketing application is based on three safety-and-efficacy trials and two that examined only safety. A total of 535 patients were treated in the company's clinical program, with only 341 receiving the drug for more than six weeks, the FDA reviewers noted. Moreover, only 83 ever received the maximum dose of 600 mg three times a day. As a result, the FDA staff review said, "the safety database of this development program was not robust." It also asserted that the available safety data were "not so clean." According to the review, "during the longer term open-label experience with droxidopa, there were several deaths, SAEs [serious adverse events], discontinuations for AEs, and events of hypertensive crisis, strokes, and myocardial infarction." Reviewers continued, "Of utmost concern are reports of neuroleptic malignant syndrome from Japan that aren't clearly explained. During a 10-year reporting period, there were nine cases of neuroleptic malignant syndrome while patients were taking droxidopa." Although some of those cases could have arisen from other drugs patients were taking, there were several that "appeared to have no likely etiology" other than droxidopa exposure, the staff review indicated. In addition, the reviewers questioned the study's efficacy even in the short-term trial data. One of the two randomized trials failed to meet its primary endpoint, which was a statistically significant improvement in scores on the first item in the Orthostatic Hypotension Symptom Analysis scale. But the review also noted points in the drug's favor. The other main study, also a randomized trial, documented improvements in hypotension symptoms of 0.9 and 1.3 points on two scales in which baseline scores were in the range of five to six, and which lasted at least one week. The same trial also showed that droxidopa increased standing systolic pressure for at least a week. And, the trial that failed in its primary endpoint did show a significant benefit on a secondary efficacy endpoint, scores on the Orthostatic Hypotension Questionnaire. The advisory committee will be asked to discuss the drug's efficacy and safety record in the trial data, and will vote on whether it should be approved. The FDA is not required to follow advisory committee recommendations, but it usually does.
  10. I don't know about the ACT, but my son was able to get accommodations for the SATs. He had 50% extended time with no more than 4 hours of testing per day, and his testing had to begin no earlier than 11:00 or noon - I don't remember exactly. There was no problem getting it approved with a doctor's letter. I hope you get what you need.
  11. All good. And no hard feelings towards Dr. Stewart - his research has given Dan his life back to some extent. I just wanted to point out that seeing Dr. Stewart isn't as easy as deciding to make the 1500 mile trip!
  12. No, not really. What we really wanted was Stewart's advice about Losartan. We eventually went ahead and started Dan on Losartan anyway, kind of blindly but it seems to have worked out.
  13. I BEGGED Dr. Stewart to see my son. He said that he will only see patients that live within 2 hrs of his clinic. We live 3 hours and 8 minutes away, according to google maps. He said that's too far, unless Dan wanted to be part of one of his clinical studies. I asked him to just see Dan once, as a consult. The answer was no. I asked him to just have a phone conversation with me. NO. To be fair, he did respond very succinctly to an email. Personally, I think he was open to seeing Danny for a consult until he found out who Dan's Boston doctor is. Then he shut us down.
  14. My son has little or no haptoglobin. I believe that this could be one of the causal factors of his POTS, because a haptoglobin deficiency can lead to a nitric oxide deficiency, but I'm having trouble finding a doctor to investigate this angle. I will not give up on this one, however! He also has high albumin.
  15. Issie, you asked but I don't think I ever answered. Sorry. His renin/aldosterone levels were normal. (it's been a while since they were tested.) His salt levels and potassium levels are tested every few months and they are consistently normal. Losartan and Florinef might balance each other out with the Postassium.
  16. Danny was not able to tolerate any vasoconstrictors - midodrine, mestinon, adderall - nor beta blockers. No relief until we hit on Losartan. Dan is hypovolemic but has high albumin. It seems like most Potsies have low albumin, but I don't know how much that matters. He used to be cold a lot but that has improved along with the rest of his symptoms. I don't think has pooling. Basically, he deals with fatigue, poor sleep quality, dizziness, headaches, nausea, brain fog, but has seen some improvement in everything except sleep quality. I think that the real clue to Dan is the fact that he has low or no haptoglobin. Haptoglobin is a positive acute phase protein that binds free hemoglobin and removes it from the circulation to prevent kidney injury and iron loss following hemolysis. We can't figure out why Dan is deficient in haptoglobin, because he is not anemic, does not have hereditary spherocytosis, does not have sickle call anemia (we're caucasian). In light of all the things he DOESN'T HAVE, the hemotologists we've consulted have dismissed this anomaly as unimportant. But I believe they're wrong. There's growing research out there that "naked hemoglobin", that is, hemoglobin without haptoglobin, is toxic and IS A NITRIC OXIDE SCAVENGER. We are searching for a doctor (anywhere in the country) who has an understanding of this and is willing to evaluate Danny. We may have caught the attention of a doctor at the U. of Pittsburgh, but like everything else in the crazy world of POTS, getting an appointment is a long slow process.
  17. Well, what about ARBs like Losartan? My son has been on it for a year with no side effects (that we're aware of). He certainly sees benefit from it!
  18. My husband came across this article today. I thought it might be worth sharing. http://www.uticaod.com/news/x386662107/-Miracle-horse-allows-woman-to-give-back
  19. Beth Israel Deaconess Medical Center in Boston
  20. I don't think that there is a blood test. My son was in a 3-day clinical study of the role of NO in POTS. He was given a medication through an IV called L-NMMA which temporarily inhibits nitric oxide; and while he getting that he was put through some tests like a TTT to see how his body reacted as compared to his earlier TTT without L-NMMA. The results led his doctors to conclude that he has a deficiency of NO (much to their surprise).
  21. I'll eat my hat and anyone else's if NO isn't implicated in low flow POTS. Since starting on Losartan to increase NO, my son's POTS symptoms have decreased to the point where he is finally functioning again after four long years!
  22. I don't know for sure if my son has high angiotensin II or not...he was never tested. However, he was tested for nitric oxide levels (as part of a clinical study) and we know that his NO levels were deficient (which would lead me to conclude that his angiotensin is high). He was put on Losartan - an angiotensin II receptor blocker - and he went from being profoundly disabled to mildly disabled over the past 9 months. Which again, leads me to conclude that his angiotensin II was high. However, he has never had blood pressure issues. Not sitting, not standing. With the Losartan, his blood pressure started getting a little low, so he is now taking Florinef to compensate for that and it seems to have evened out his BP for the most part.
  23. Don't apologize for ranting, Julie!! It's totally justified!
  24. Well, I think it's because it's actually not FDA approved...
  25. Oh, one more thing. Insurance won't cover it.
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