Autoimmune Suppressants - Medrol Pack

[issie]

Well, some of you have been following my days of taking this immune suppressing - steroid medicine. The first few days, were not good for me at all. I got headaches and felt naseau and dizziness and just generally - pretty ucky. But, starting around the 4th day, I started hurting less and being able to stand up longer without dizziness and swings in my blood pressure. Today, the 6th day was my last day to taper off them. I have been sleeping sounder and my blood pressure is lower and staying more steady - not the wild swings. I can definitly stand longer and don't hurt as bad. I think it took the inflammation in my body away. I don't seem to be having as much edema or pooling either. I will see how it goes - without taking any thing, and see if the benefits continue.

I went from thinking I'd never do this again, there had to be another way to do it. To feeling better. Yayyyyyy!!!!!

There has to be an autoimmune component, in my case. At the very least an inflammation component.

Issie

[skiberthoud]

Glad to hear that you're feeling better! Curious to see how long the effects last - hoping good and long for you. Inflammation - the silent killer. I hope you/they are able to find out the autoimmine component soon. Keep us updated!

[ramakentesh]

yeah i was surprised by your initial results. But less surprised by the end result if you get me.

[HopeSprings]

That's great, Issie! Hope you get some good long term effects from this. Remind me - what prompted you (or the Dr.) to try steroids?

[POTSMama]

Glad to hear it, Issie! As you may recall, I tried a Medrol taper pack a week ago - - I only took it for 2 days and was reacting badly (MCAD symptoms like facial numbness, BP fluctuations, and hyperadrenergic POTS symptoms like tachycardia, and just didn't feel well overall) so my doctor told me to stop taking it. But I do know I have inflammation issues too, so maybe I'll try again one day, but need to get a little stable first. Keep us posted how it goes over time, but so happy to hear you're feeling better!

[issie]

Yes, I had similar issues to start with. But, my husband and others encouraged me to stick with it because since the initial dose is so high - you really need to do the taper. I was quite the whinny butt through the whole thing (thanks, to those who supported me with my whinning - you know who you are) - but, in the 4th day - I was glad I had stuck it out. I definitely feel that it has helped.

Issie

[ramakentesh]

Some guys from Vandy did a talk on prostglandilin (sp?) playing a role in POTS in 2009.

[issie]

Yes, I think I need to focus on keeping inflammation down. I think that may be a key factor here. With what you're speaking of Rama - do you know of any good things to keep this in check? I know asprin and fish oils - tumeric and ginger - vit C. Some use NSAIDS - but it's not the most recommended thing.

POTSmoma, I forgot to tell you - I had what seemed to be MCAD issues with the medicine too. My face was blood red and swollen and stung and I was having hot flashes. I also thought it had triggered an allergic reaction. But, I managed to make it through it. I didn't however, have numbness in my face. I did have the swings in my bp to start with and tachy, but it settled out as I went into the taper. We will see what happens since I've finished the medicine and see if the improvement I feel last.

Issie