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Posted

This is my second day on 25 mg of Losartan and today I feel pretty much somewhere between 90-100% recovered from POTS. It's sort of preliminary and this could just be another (hourly) remission but I definitely feel better today than I have at any time before. I'm fairly sure it's the Losartan. Perhaps the Losartan + Exercise - they might be having a synergistic effect.

Anyways just wanted to update.

Posted

Unfortunately the Losartan has a short half life and my doctor wrote the script for once a day. I might have to ask him to split it up because now (about 8 hours after taking it) I'm feeling bad again.

Posted

Glad for you...just saying, I'm on 100mg, started on 40mg; started about 10 years ago, and was on an ACE inhibitor before that for about 2 years, too. I'm tolerating double and a half now after a year of changing my dose, and now I'm on a BB, too, so maybe they would be willing to up your dose, and give it to you twice a day. I would talk with your doctor...but I would also give it time too...it takes a good 4 weeks to really feel the full effect. Be patient :)

Posted

Yes, I got a second wave during the afternoon. The amazing thing I've found is the Losartan seems to prevent stress related POTS. I don't get an escalation in symptoms anymore during times I ordinarily would have.

Still preliminary though.

Posted

That is great Jangle, I am glad to here you are seeing positive initial results.

I have found long acting meds often do not act long enough for me. I take the Inderal LA twice a day instead of once yet still see a decrease in my HR in about 3 hours that climbs back up before my next dose. ( drops in 3 hours and rises back over 20 points both lying and standing )

Therefore, I asked the cardio if I could take Losartan BID, which he saw no point in, but said "fine just cut it in half " which I do.

I went to 75mg total today but still can't say I am better or worse. Of course, I never like rainy days and it rained all day here in CA. I think my blood pressure may a little lower but I don't like that the systolic seems to have come down more than the diastolic, as I prefer that difference to be high, but maybe the diastolic will go down later. Anyways, fixing the metrics does not necessarily fix me. My BP runs high both lying and standing even on 140mg a day of Propranolol so it does not hurt if it lowers it a bit.

Posted

I was doing well except elevated BP on dr Levine's protocol, high salt, florinef and clonidine. I have elevated renin and aldosterone (which is an appropriate response to hypovolemia, but opposite of some POTS pts). Losartan through me into a full blown pots attack within 3 days at a dose of 25 mg daily, which actually makes sense since it is an inhibitor of the renin-angiotensin-aldosterone system which was appropriately revved up in my case since I have significant hypovolemia. I was at Mayo this week and they were not at all surprised it made me worse. It is similar to ace inhibitors which are on the list of drugs to avoid with POTS, but of course there are so many subtypes we all respond differently so I hope it will continue to help you. Just wanted to caution others that this drug is not going to help everyone!

Posted

Actually it does not work at all in the same way as an ace inhibitor. By increasing catabolism of ang II exclusively it enhances nitric oxide bioavailability which has direct effect on sympathetic excess. It is being prescribed for pots with low renin ald where ang II is found high and for some to combat sympath excess.

ace inhibitors on the other hand would worsen hypotension.Its a pity in ways that mayo seems to be where most patients on this forum go to. There is so much more exciting work on pots going on at other facilities.

Some of the statements I read from mayo docs seem to contradict their own research and usually ignoring all developments in the last six years.

Posted

Rama,

Blocking the Ang II type 1 receptor, increases the type 2 receptor effect while decreasing the type 1 receptor effect, resulting in increase No I believe, but have no doubt you already know that.

Schorobi,

Bumped it up to 75mg a day and can't even tell if it is doing anything. I think 100 is the max recommended dose. But I agree caution is a good idea for many, as your own story clearly illustrates.

best,

Posted

Also Rama, my upright norepi is very elevated at 3300 and losartan quickly made me worse.

How does having your noriepi levels elevated - does lorsartan make your levels worse? I didn't have a good response to lorsartan either and my NE levels are high too. So, never knew there was a connection.

Issie

Posted

Losartan stops the bodies response to ang II reception. Ace inhibitors inhibit all ace activity and effect the catabolism of ang 1-7 and indirectly ang II. A patient on Losartan will still have normal Ang 1-7 activity and ace activity.

In POTS at least Losartan actually boosts Renin Ald responses in those with elevated Ang II rather than the opposite. In Ang II mediated POTS there is paradoxical elevations in in ANG II, increased vasoconstriction but reduced renin/ald leads to hypovolumia. Therefore Losartan works to correct ang II catabolism indirectly.

If you have NE levels as high as that I assume you have been diagnosed with NET deficiency? Another confusing area as the proband with the original NET deficiency had characteristics that were unremarkable compared to most POTSies. Still Losartan may help theoretically in NET deficiency by allowing upregulation of neuronal NO and reducing sympathetic drive.

i agree that Losartan wont work for everyone. But why this is may relate more to what we dont know about POTS than what we do or assume.

Posted

Also in NET deficiency hypovolumia could occur for non renin-ald based reasons. The NE transporter is responsible for the uptake of a large amount of peripheral dopamine. the kidney is innerved with dopamine receptors which may also be involved in plasma balancing and salt handling, meaing that if NET is deficient, more peripheral dopamine may result in salt extraction through the kidneys and perhaps compensatory activation of the renin/ald system.

Posted

So, can someone answer me if lorsartan would increase NE levels? Or is it that it is working on the dopamine levels? I'm trying to understand this and my brain isn't computing right now. LOL - been having a bad case of the fogs lately. I hope something I'm trying new is going to help that.

Issie

Posted

Issie there are a lot of paradoxes with the RAAS in POTS patients, for instance the elevated angiotensin ii/low aldosterone paradox, so it's difficult to say exactly how a POTS patient will respond to Losartan, but it is expected that Losartan should decrease aldosterone by decreasing bioavailable angiotensin ii. Whether that actually happens is unknown.

Posted

Wow - souinds like a positive result. There will be up and downs with any medication but over time I think Losartan is supposed to work best.

I was on Losartan/Micardis before my diagnosis of dysautonomia for hypertension. Little to no side effects for me, and to be honest, being so small 105#, and on the highest dose after a major hypertensive episode, even sitting down, (after taking care of my brother-in-law; he had a triple bypass surgery last spring), I was afraid that my B/P would be too low...I thought my doctor would put me on 80 mg. first, but she saw how sick I became, and just told me to watch it...even with 12.5mg hydrochlorothiazide for ankle swelling. It was my first Beta blocker, atenolol, that caused my B/P to plummet 80/40, and HR took a nose dive, 50 standing, even changing the dosing, breaking pills in half, etc. at different times of the day, but now on Bystolic 5mg. at bedtime, I get a little low at night, but my HR is still over 100 sometimes, just standing there, so I needed both. Everyone is different, and I admit, I don't understand it all either, but it is working for me. I do lack energy, but I am still functional; I have to pace myself, too, and listen to my body, so I don't overdue. I go to the gym twice a week, walk my dog short distances everyday, still have days being symptomatic, but I'm so much better!!

Posted

Would you take Losartan OR Florinof. They seem to have a similar outcome from different actions.

Posted

But can you take them together - is it one or the other?

Posted

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.

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