Procrit For Hyperadrenal Pots

[Lizzegrl]

I Saw Beverly and Dr. Grubb at the University of Toledo clinic on monday, and have started a new cardiac drug to temporarily calm down my arrthmias, then they are trying to schedule another cardiac ablation with my EP guy here in Michingan.

One of the issues we discussed was my fatigue. Bev thinks when my arrythmias are finally under control, along wiht the BP and HR, I might start to feel better. If however that doens't pan out, She suggested that we might try Procrit. Has anyone taken this? Any ideas how it works on a hyperadrenal posts patient? She thinks it would help my energy level.

I also discussed with her my concerns about possible MCAD that could be flaring up my asthma, and she basically said, it is a decent idea, but not what is going on with you. I happen to have the hyperadrenal POTS in which the MCAD isn't really an issue, and that I was unlucky enough to get stuck wiht two bad chronic diseases that have treatments that irritate each other. Luck of the draw. Simple as that.

[ramakentesh]

Next time you see Dr Grubb or Beverly it might be a good chance to ask them how it would help.

The word hyperadrenergic is often bandied around a lot with POTS for any patients that exhibit an overly excessive sympathetic response to blood pooling. Most dont actaully have the true hyperadrenergic form and this form of POTS is actually still quite contentious in terms of it even existing at all.

The theory behind true hyperadreneric POTS is that patients have a faulty norepinephrine transporter so that when they stand and their bodies shoot of noradrenaline to constrict veins and arteries, it does not get taken back out of the synpatic cleft and results in an excessive vasoconstrictive state. I believe that Dr Drugg believes that around 10% of POTS patients have this condition.

However it is unclear why this form of POTS results in blood pooling, since it should result in excessive constriction rather than pooling - but pooling has been noted in ALL forms of POTS althought it seems to relate more to blood flow abnormalities than actual pooling.

It is also unclear whether the reduced expression of NET found in some POTS patients is a cause or result of POTS - as an example, if there is partial alpha receptor denervation this may result in lower NE levels from alpha receptors but normal release from beta receptors - the remaining alpha may become overactive to compensate for the reduction. Reduced NE levels might effect NET expression without any noticable reduction in plasma NE levels or even an increase as beta tries to compensate for alpha.

Procrit would increase blood volume and vasoconstriction so it would help any patient that exhibits reduced blood flow to the brain or blood pooling. In theory it would be less helpful in true hyperadrenergic POTS because it is believed that either hypocapnia or NE result in excessive vasoconstriction of the carotid arteries leading to dizziness in these patients rather than pooling which is (again) contentious.

Other mechanisms could explain the excessive sympo excitation in POTS; elevated angiotensin II levels in Low Flow POTS, or just a reflex activiation to counter other underlying problems.

In short it would help most POTS patients but if the theory behind true hyperadrenergic POTS is correct it would in theory be less helpful in this form than in others - medication would need to counter the excessive effects of norepinephrine - through clonidine, methyldopa or labatelol (sp?)

[firewatcher]

Procrit is a man-made form of a protein that helps your body produce red blood cells. Many women, especially POTS patients are anemic or have low blood volume, which would effectively produce the same result. Procrit increases red cell volume>>>total blood volume>>>better O2 absorption>>>more energy (that's the theory at least.)

[Lizzegrl]

All good thoughts, thank you! I really don't have a big problem with pooling at all, so my guess is that the Procrit would be more of an aid in RBC production in my case. I have anemia and goofy blood counts most of the time and have had Gamma Globulin in the past to help.

[ramakentesh]

now that makes sense - anemia.

[Maxine]

Having your catacholomines tested would be a good way to find out if you have actual "hyper adrengic" POTS.

I was diagnosed with this in error, and asked to have m catacholomines tested. I vasodialate a lot, but I do get a compensatory response of vasoconstriction which gives me "hyperadrengic" type symptoms. It turns out that I do not have hyperadrengic POTS. MY POTS is secondary to EDS and upper spine and brain stem compression.

Making sure the diagnosis of "hyperadrengic" POTS is correct is important because the treatment for that is different.

I think they need to get more in depth with the underlying causes of POTS.

Ramakentesh------your very articulate in the way you posted your response. Today I feel like my brain isn't working very well. This information is very interesting, but I have to admit it can make my brain hurt trying to understand some of this. It depends on the day----LOL.

Maxine :0)

[Lizzegrl]

The hyperadrenal POTS was confirmed with catacholamine levels. They wouldn't make a definitive diagnosis until they had those results. Apparently, even while on meds that tend to lower your levels, mine were still sky high.

[ramakentesh]

Sorry for the confusion. basically some doctors now do not believe that there is a type of POTS that is purely hyperadrenergic - in that it is caused by faulty reuptake of norepinephrine.

They believe that the level of hyperadrenergic response to standing varies from patient to patient but is always a reflex response to blood pooling or blood flow abnormalities from a variety of different causes. Dr Stewart in particular seems to have found that there is pooling in all POTS patients - and I spoke to another doctor by email who said that the most hyperadrenergic patient he had was a leg pooler (who by theory would definately not have hyperadrenergic POTS)

Time will tell on this as the jury is still out.

[juliegee]

My understanding is that hyperadrenergic POTS IS the type associated with MCAD. Lizzie, if you are in MI, Dr. Cem Akins is at U 0f M and can help you figure out if you have MCAD. I have heard that he is planning to move to Boston to work at Brigham and Women's to work with my masto doctor, Marianna Castells. If you want to figure this out "locally" do it quickly before he moves.

Julie

[juliegee]

Lizzie,

I forgot to ask, have you had IVIG? You mention that you've had immunogobulins administered. Was it helpful? Did you have a reaction to it. I also have impaired immunogobulins- very low iGg, specifically. My allergist has mentioned IVIG treatment for me too. Just wondered about your experience.

Julie

[ramakentesh]

The hyperadrenergic PRESENTATION is connected with MCAD - two studies found that patients that exhibited a hyperadrenergic presentation also had comorbid MCAD or something along those lines.

But the study made the assumption that the form of POTS called hyperadrenergic was a given in that it has been proven that faulty norepinephrine reuptake is a causal factor in POTS. This has never been proven. In animal studies where NET knock-out phenotypes were created, they had some of the symptoms of POTS, but not blood pooling and they had superly elevated blood pressure not just a small increase.

As I was saying above - there is more recent evidence that suggests that there ISNT a form of POTS that is primarily hyperadrenergic - some patients just respond that way to blood pooling and blood flow abnormalities while others dont.

As another example - a recent study implicated calictonin gene related peptide as a possible cause of elevated nitric oxide in the stomach region resulting in blood pooling there. CGRP has been shown to be connected to migraines and also stimulates the degranulisation of mast cells. So high mast cell readings could also be a result of this process.

My point is that you cant really make any assumptions about POTS because everytime I do another study comes along that proves the opposite.

[lthomas521]

I did Epogen, which is another brand of recombinant erythropoietin. Red cell mass went up, but plasma volume went down even further. I had the complete blood count of an Olympic sprinter, but I could barely stand up!

Helpful hint: I was working at the time, so I persuaded our company nurse to give me my shots. It's really unpleasant to have to give yourself intramuscular shots when your hands shake badly.

[Lizzegrl]

Julie,

I had gamma globulin IVs several years ago, but it was given by a hemotologist/internist who was much more willing to do it than any other doctor I've seen recently. I had no reactions at all and I have to tell you, I felt so much better when I was getting it. It made a world of difference. It was to the point that she just looked at my blood counts and said "this is crazy, of course your body won't heal or recover from anything, it doesn't have what it needs to do it". I have very low IGGs too. If your allergist is willing, I would totally go for it. It wasn't a big deal for me at all except in the result!

I stabilized and then had to leave her because of insurance and her retirement. I have basically ignored the issue since then because so much else seemed to have priority and docs have gotten very cautious when it comes to such "biological" treatments. I am currently fighting with my insurance company to get them to pay for Xolaire for my asthma which is classified as a biological so they are extremely reluctant, with half a dozen protocols, reviews, appeals, etc. My pulmonologist wants it, all my other docs do as well, but the ins. company has been stalling for months.

The procrit probably wouldn't happen for months regardless, because my heart isn't stable enough for a big change. When and if they decide to do either a pacer or another ablation, I will be stable enough to think about further MCAD questions. Now, if my insurance company still refuses the Xolaire for the asthma, it might be worth trying to get into U of M to see what they say. Getting one thing stable at a time is my goal and if I can't get them to treat it as my doctors want from that direction, I might have to go at it another way. Good thoughts to discuss with the pulmonologist next week.

Shots wouldn't be a problem for me. I'm an old ER worker. ;0) Funny thing is my mom was a nurse and they wouldn't even let her give her own shots of Epogen when she was taking it. I wonder if it is just in this area that they are getting really picky? Everybody is afraid of someone having a reaction I guess. They used to allow Xolaire to be self-administered, then they changed that, and got really strict on who, when and how frequently it is given, according to my pulmonologist. Liability is the watchword of the moment.

[ramakentesh]

I had gamma globulin IVs several years ago, but it was given by a hemotologist/internist who was much more willing to do it than any other doctor I've seen recently. I had no reactions at all and I have to tell you, I felt so much better when I was getting it. It made a world of difference

was this for POTS or something else?

[Lizzegrl]

Something else! My immune system is generally whacked out and doesn't really work well. This was before the POTS diagnosis.

[ramakentesh]

Did it help your POTS symptoms?

[Lizzegrl]

At the time, the symptoms of what I now know is POTS were pretty stable, so I can't say whether it helped or not. I was on a beta blocker and was pretty freshly post ablation so my heart was feeling pretty good. The rest of the symptoms were also in good shape at the time or could have been from the immune system issues so there is no way of really knowing.