SFN not a good enough diagnosis to get IVIG ?

[MikeO]

12 hours ago, RecipeForDisaster said:

My PCP's office has a list that totals 47 meds for me! I think there are duplicates and stuff, but OMG, that’s horrifying. I know it’s over 30. I know can’t do without most - actually, I forgot my morning meds the other day, because we lost power, I couldn’t see, and didn’t have coffee or my normal routine, and man, did I do poorly without them. 
 

Congrats on getting better butt blood flow, ha! I hope you get it figured out. 

Boy you are on a lot of meds. I thought i was bad. I can relate to missing meds i usually get side tracked in the morning then i can't remember if i took them or not (bit of a dilemma) so i skip them. I will feel it by the afternoon.

Funny that clotting comes up. with my last procedure my INR was right at the bottom of normal which surprised me (i would have guessed the opposite) sure that is why i am on Plavix for a longer period than what is normal for a procedure like mine. My PT out of the blue brought up my clottiness and brought up genetics as a culprit. Not sure how the PT knew this (probably from some secret dr notes i can't see).

My butt says Thank You Haha. 

[RecipeForDisaster]

I am pretty young, but I have a lot wrong with me. I almost never miss a med, but it was a perfect storm that day. I didn’t notice until I asked myself why I was having so many PVCs and why my HR was so fast just walking - those two things were fairly well controlled on acebutolol. 

 

Sometimes I do fantasize about having a port, but then I come back to reality. I just don’t think I’d do well. I’m allergic to aspirin, NSAIDs, etc. so I would have to go right to the bigger gun anticoagulants. There are lots of genetic causes to clotting… we have 3 in my family, but I only got 2.

[MikeO]

I have at times thought about having a port put in but like you reality kicks in. Like what would i put down this thing anyways.

I did look at getting IV infusions but in the course trying various hydration strategies i have found what works for me (just takes an effort to keep up) I also demonstrated (at least to my self it is affective) last two hospital stays i hardly touched the IV bag prior i would have sucked a bag down in no time. Even the nurse in Madison noted this as well.   

[RecipeForDisaster]

4 hours ago, MikeO said:

I have at times thought about having a port put in but like you reality kicks in. Like what would i put down this thing anyways.

I did look at getting IV infusions but in the course trying various hydration strategies i have found what works for me (just takes an effort to keep up) I also demonstrated (at least to my self it is affective) last two hospital stays i hardly touched the IV bag prior i would have sucked a bag down in no time. Even the nurse in Madison noted this as well.   

IV fluids are what help me more than anything else, and I’d be prescribed daily fluids if I had a port. Plus the blood draws, iron infusions, and IVIG… drinking just doesn’t help me much, even though it’s salted hydration solution. My body isn’t right. 

[Pistol]

10 hours ago, RecipeForDisaster said:

IV fluids are what help me more than anything else, and I’d be prescribed daily fluids if I had a port. Plus the blood draws, iron infusions, and IVIG… drinking just doesn’t help me much, even though it’s salted hydration solution. My body isn’t right

@RecipeForDisaster - there are other ways to administer daily IV's. There are peripheral IV lines that can stay in place for 30 days. Then there are mid lines that go up a little higher in the vein but not up to the heart, like a port or PICC line do. These IV accesses are much less risky but allow you to infuse at home. Have you discussed these with you docs? They have less of a clotting or infection risk. 

My sister also just had a port inserted for POTS. The type of dysautonomia that runs in my family is a genetic flaw and none of us respond to increased fluids - they get peed right out, whereas IV fluids stay in the system. In our case the benefits of IV fluids in increasing the quality of our lives are much greater than the risks. 

I had severe COVID followed by sepsis last fall, and somehow in that process I developed blood clots. I was on blood thinners for a few months but was able to go off them since my condition normalized. I tolerated them well. I used to pass out a lot and take seizures ( before IV fluids ) and back then I would not have been allowed to take them due to the risk of hitting my head in a fall and causing brain bleeding ( @MikeO that is what I am worried about with you and blood thinners, since you fall so often ). 

The decision to get a port is very individual and you should be sure that you are doing the right thing. In my case I will never go back - IVs have given me my life back! But blood clots and infections can be life threatening, so it is a very individual choice. Hopefully you will improve on the IVIG so you do not need IVs any longer! Here's me keeping my thumbs crossed!

[supertired]

@RecipeForDisaster IVIG can be rough at first for some people, me included... The first go-round can be the worst... If it doesn't get better and easier each round, make sure you talk to your doc about adjusting the days/dosages/rate... That worked for me eventually to get it tolerable, but it took a really long time to figure out exactly how to parse out the dosages and rates... I'd suggest seeing how the second round goes, and go from there...

Also, the pre-med steroid dose should really be rather tiny - just enough to keep you from experiencing an allergic reaction to the IVIG... really shouldn't be a big deal for most people. And also, the IVIG injection/insertion site should definitely not have been burning or itching... if that happens again, do please alert your nurses - I would suspect they know what an infiltration looks like - it would have been obvious I think if you'd had that, but you might have been having a reaction to the dressing they used... some may be more likely to contribute to that than others. FWIW.

[RecipeForDisaster]

On 8/2/2022 at 6:44 AM, Pistol said:

@RecipeForDisaster - there are other ways to administer daily IV's. There are peripheral IV lines that can stay in place for 30 days. Then there are mid lines that go up a little higher in the vein but not up to the heart, like a port or PICC line do. These IV accesses are much less risky but allow you to infuse at home. Have you discussed these with you docs? They have less of a clotting or infection risk. 

My sister also just had a port inserted for POTS. The type of dysautonomia that runs in my family is a genetic flaw and none of us respond to increased fluids - they get peed right out, whereas IV fluids stay in the system. In our case the benefits of IV fluids in increasing the quality of our lives are much greater than the risks. 

I had severe COVID followed by sepsis last fall, and somehow in that process I developed blood clots. I was on blood thinners for a few months but was able to go off them since my condition normalized. I tolerated them well. I used to pass out a lot and take seizures ( before IV fluids ) and back then I would not have been allowed to take them due to the risk of hitting my head in a fall and causing brain bleeding ( @MikeO that is what I am worried about with you and blood thinners, since you fall so often ). 

The decision to get a port is very individual and you should be sure that you are doing the right thing. In my case I will never go back - IVs have given me my life back! But blood clots and infections can be life threatening, so it is a very individual choice. Hopefully you will improve on the IVIG so you do not need IVs any longer! Here's me keeping my thumbs crossed!

Yeah, I can’t have anything but short peripheral IVs, which we can keep for a couple of days if we use heparin. Midlines or PICCs are still too risky for me.
 

I know we have this sort of thing in our family, too. Most of us don’t get thirsty or benefit much from drinking fluids. I have a novel mutation, but nothing known found on genomic sequencing.

 

It's such a hard balance - try to save my veins by not doing fluids often(and avoid dragging a pole around) or do better. If IVIG helps me, I will be overjoyed. I’m thinking positive, even if it’s a placebo effect that helps. 

[RecipeForDisaster]

18 hours ago, supertired said:

@RecipeForDisaster IVIG can be rough at first for some people, me included... The first go-round can be the worst... If it doesn't get better and easier each round, make sure you talk to your doc about adjusting the days/dosages/rate... That worked for me eventually to get it tolerable, but it took a really long time to figure out exactly how to parse out the dosages and rates... I'd suggest seeing how the second round goes, and go from there...

Also, the pre-med steroid dose should really be rather tiny - just enough to keep you from experiencing an allergic reaction to the IVIG... really shouldn't be a big deal for most people. And also, the IVIG injection/insertion site should definitely not have been burning or itching... if that happens again, do please alert your nurses - I would suspect they know what an infiltration looks like - it would have been obvious I think if you'd had that, but you might have been having a reaction to the dressing they used... some may be more likely to contribute to that than others. FWIW.

I figured… another neurologist suggested we change the brand AND change the dosing from every 6 weeks to weekly. I can’t do the latter since I won’t have enough veins… but I think the ordering neurologist isn’t interested in these suggestions from the peanut gallery. I’d love to switch brands. The rate is already slow enough to make it take 6+ hours.

I would have liked to see the methylprednisolone dose more like 40-80mg. 

My IVs were definitely patent, no infiltration. We ran another liter of fluid after IVIG without a problem. I think it’s allergy - I’ve never had that itching and burning before. I told the nurses. One was concerned, the other was blasé. I actually have no dressing on my IV sites, because there are none I can tolerate! I have only silicone tape and gauze/gauze net.

 

Thanks for your help! I hope I don’t have to split the dosing up, just to save my veins…