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Okay, Here is the deal with the decision made for my treatment plan...


mngirl
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So...Here it is...and I am still going to look into this even more, but at this point I do think that this makes total sense to me...

Here is a little background about my docs: The issue behind all this is that I have been to the U of MN (and they stated they would do the EXACT same thing as my dr is doing for treatment) and I have also been to the Mayo Clinic (in MN) and I have a Neurologist there (Dr. Fealey). But I have to say that I will not go back to see him again as I felt as though I wasn't allowed to ask the questions I asked. Even though I felt they were VERY valid questions to ask about POTS. Som I am not going back to him (that is why I then headed to the U of MN). MY dr here in town has done a LOT of research on all this and has also consulted with a locol neurologist who is doing research on POTS.

Well, I have upped my prednisone dose this past week from 2.5 mg in the a.m. and 2.5 mg in the p.m. to 10 mg for both doses. My dr thought that if this made my system start to feel better, we were on to something. It did. Overall I started to feel better, although the eating is STILL an issue. I also stopped the Digoxin on Tuesday with hopes that it would bring my pulse up from the 40s up to something normal. For some reason stopping that med made NO difference at all. So, I went from the high 80s/90s down to the 40s and now being off the meds it is staying there. During my infusion yesterday, it kep dropping from about 48/49 down to 42/43. CAn't figure out why, that med should be out of my system by now. I am having some major chest pressure just from my heart TRYING to keep going.

With the fact that I did start to overall feel better, my doc thinks that we may be headed the right direction by increasing the prednisone dosage. The issue here is that the doses that seem to be working are too high to stay on over time. He is having me up it even more - up to 20mg in the a.m. and 10mg in the p.m. - with hopes that this will help with the chest pain/pressure. To get away from these high doses or prednisone he says that there are other medications that are autoimmune suppresants that can replace the prednisone without the same bad effects of the prednisone. Here is how he explained what he believes happened to me, since this all seemed to just start one day in February 2003:

I was pregnant and had my son in August of '02. About 6 months later, it all started on Saturday, February 1st (amazing that I can pin point it to a day, eh?). He described pregnancy as your body developing a tumor, which happens to be a child. Your bodies immune system does supress itself somewhat so it does not attack the fetus. Once you give birth, your system will should correct itself and go back to normal. HOWEVER...my system overshot it self and went too far. Now, my immune system is trying to kill off everything else and overreact...therefore the Addison's and causes the issues related to the POTS. What we need to do is bring the immune system down to a level where it is not trying to do all that stuff. Unforuately my adrenal glands are already shot...To do this we have decided that we would start an immune suppressant such as that they give people with Lupus or severe rheumatoid arthritis. So, not to the extreme as that for the organ transplant patients.

I asked him all the questions I could think of...I asked about the possibilty of getting sick easily. He said that people can live normal lives, they do have to watch out who they come into contact with. He said to defintely avoid someone who is outright sick. If I would start to feel sick or to get a fever, I would have to get into the doc asap at which point they would give me a high dose of prednisone, have me take prednisone for a period of time and also place me on antibiotics.

I asked him if these drugs premanently suppress your system. They do not. It is drug induced. He said that it will take about 3 weeks for my body to supress my system, since my body is really going to fight this. However, should we decide to stop this for whatever reason, once off the meds, my bodies immune system would jump back up to where it is now pretty fast in comparison...roughly a weeks time.

I would have to also take medication to make sure that it does not start thinning by bones...but he said that would only have to be a once a month drug dose.

There are some other side effects to the meds that all meds seem to have...so it will be a closely watched treatment. I am into the doc twice a week at least at this point for my infusions. And he stops in to see me during each treatment, so I have the chance to talk with him. We will be doing blood tests through out to make sure that nothing else is going on or that we are not destroying anything else.

I asked him about the not eating issue and he says that he believes that this is the Gastroparesis that someone was talking about the other day. He believes that this treatment plan should help correct this. And if not, then we have to go to places he doesn't want to...meaning pacemakers, etc. But he thinks this is going to correct itself with this program.

Luckily the dizziness has been under control lately, so that is one less thing to worry about. When I do get dizzy it is defintely from the low pulse and it dropping to the low 40s and it had gotten into the 30s. But for the past week, it hasn't been too bad.

So...we are going to try the increased prednisone dosage, and if this makes things even better over the weekend, then on Monday we are going to start the other medication. If this were not a reversible treatment, I wouldn't do it. I have been research online and have found what he states about the meds is true and that this is done more than anyone thinks.

Now we have to figure out what the deal with the low heart rate is and why it is staying so low after stopping that other medication. My heartrate is either too high or too low. Finding the middle ground seems impossible.

Well, that is the deal...do you think that this makes sense (it does to me)...or do you think that I am totalling missing something here?

~Lisa in MN

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Wow! Long but informative post and thanks for the breaks in spaces.

Well, I must say, I had NO idea one could GO on immune suppressing drugs and then wean off fo them.

If indeed that is the case, and your upcoming treatment would not HAVE to be permanent, then I guess I might understand your trying it.

I am still trying to figure out if your past docs were the second opinion many recommended (sorry my brain is really tough at comprehending info these days!) :D

But if I remember correctly, weren't you in the hospital for a really long time with horribe bizarre reactions? so having not walked in your moccasins, it's easy for me to say what I would do.

That said, I think your decision to try this--and that you have FAITH in this doctor--is worth trying. I had fears if it didn't work, there was no 'going back' so to speak.

So if you have really researched this and I am guessing you have, as somebody just lurking on theese boards on occassion, I firmly support your plan. I hope it works and works quickly to relieve you of some of the terrible things your body has been through.

Good luck to you and I am sorry if my former response to the immune suppressing meds sounded harsh, but I just saw what it did to my late brotherinLaw after a heart transplant. So we can only go by what we are familiar with.

Best to you and I will look forward to updates from you.

Sophia

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Guest Belinda

Hi..Like Isaid in past posts about being on high doses of Prednisone..be careful and listen to your body

I truly believe and was told that Prednisone is an awful drug I did much research on it also..not all the side effects were stated.

I was on it and of course we all aren't the same..but even weeks after being off of it my immune system was comprimised within two weeks I caught a cold and for anyone else it would have been fine but it was like death to me.like my system shut down and I couldn't walk.

Although I felt much better on the Prednisone than I had in a long time..So I hope it works for you just remember in increased times of stress or if you start to get sick call your doc. and get it increased or be put back on it, I made the mistake of not doing this and ended up in the hospital.

They thought I too had Addison's although it turned out just to be severe adrenal exhaustion and I was put onb supplements and such.

I hope that your decision helps you to feel your best, and it is very wise to have researched it, not all patients do this.

Hope you feel better in the upcoming days...Belinda

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It sounds like a very thorough research your Dr. has done and if you feel comfortable on giving it a shot, then I say go for it. We know that if you stop the program that your pots will come right back, but at least you know you can stop it.

I was on prednisone 2x for some bad allergies. For the short time I was on it, I felt really well.

Does it not take time for the digoxin to leave your system totally. I thought that had a very long half life etc. but I could be wrong. Maybe in a few days things will change.

Good luck:)

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Hi Lisa.. just wanted to say good luck to you.. i really hope that this helps you!! I pray that it helps...

In Novemebr I was on a dose of prendisone... for a nasty reaction to medication.. and boy it made me feel quite good.. I was only on it for 4-5 days.. but I surely noticed the difference in how I felt.. hope this has good results for you..

let us know how its going for you when you feel up to it K??

Hugs

LInda

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I hope this treatment plan works for you. It would be great not to have to suffer so much.

The baby and immune system stuff really made alot of sense. I got sick 5mon. after having my 3rd and I can pin point the day also so I think your imput on this was right on target.

Keep us updated. I've never been on prednisone so I have no imput their. Also let us know if it helps with the eating. I have gastroparesis and am interested if it helps in that area also.

I have my fingers crossed for you.

Dayna

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I've been on prednisone a few times and it does make me feel better short term.

people with Addison's do take a form of prednisone, and it typically makes them feel normal, but it was my impression that with addison's you are on it for life.

It does sound like you have researched this well, and just need to go with your gut. Every one of us is afraid of anything new I think, but you don't know till you try something whether it's going to help or not. My brain says that, my hand just doesn't want to reach for that bottle and see..LOL.

As far as the dig, it should leave your system, but you might ask for a dig level to be drawn and they can tell if it is. It took me two weeks to get over a teensy dose of coreg, so who knows. Best of luck...morgan

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Lisa,

What is the other drug? Is it Plaquenil? If so, the effects of it are very mild, for the most part -- I was on it for a while. I still say prednisone is a short-term solution. I just think it may fix one thing but does serious harm to your bone mass, your tissues, your blood vessels and your mind (causes mood swings and such). Please be careful and sure this is the only option for you.

Take care,

Amy

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