SFN not a good enough diagnosis to get IVIG ?

[MikeO]

On 6/22/2022 at 7:12 PM, RecipeForDisaster said:

Thanks guys! I’m cautiously optimistic. I found a favorable sounding study about this. It’ll be 55gm each day for 2 consecutive days. They’re doing the first dose at my house!

Thanks for your analogy again. I did go into PT today and she knew what i was talking about when my leg feels like it is buzzing. She is sure it is a nerve for now.

I do have to ask how is you IVIG treatment going? 

[RecipeForDisaster]

9 hours ago, MikeO said:

Thanks for your analogy again. I did go into PT today and she knew what i was talking about when my leg feels like it is buzzing. She is sure it is a nerve for now.

I do have to ask how is you IVIG treatment going? 

I start in a week! What a slow process! 

 

People usually look at me blankly when I say it’s a buzzing feeling. Or vibrating. I’m told it could help in a few days, a week, a year, or never! Yay! 

[MikeO]

3 hours ago, RecipeForDisaster said:

I start in a week! What a slow process!

I know the feeling. I am like a kid pacing around waiting for his toy to come in the mail after sending in the cereal box top and quarter.

Lets us know how it goes. Have my fingers crossed for you!

[RecipeForDisaster]

10 hours ago, MikeO said:

I know the feeling. I am like a kid pacing around waiting for his toy to come in the mail after sending in the cereal box top and quarter.

Lets us know how it goes. Have my fingers crossed for you!

Yeah, it’s been so many years, and I keep getting worse, with little other option. Thanks, I will keep you guys posted!

[MikeO]

19 hours ago, RecipeForDisaster said:

Yeah, it’s been so many years, and I keep getting worse, with little other option. Thanks, I will keep you guys posted!

I do have my eye on your progress with the IVIG hoping for the best. My PT today ruled out a pinched nerve causing the pain in my leg. we did talk about a neurologist getting involved not what i wanted to hear. MRI is next.

[RecipeForDisaster]

On 7/8/2022 at 4:20 PM, MikeO said:

I do have my eye on your progress with the IVIG hoping for the best. My PT today ruled out a pinched nerve causing the pain in my leg. we did talk about a neurologist getting involved not what i wanted to hear. MRI is next.

Ugh! Then I can foresee EMGs and/or skin biopsies. Good luck!

[RecipeForDisaster]

Update: I got my first two doses. It was odd. I immediately got lip numbness, heat and burning in my throat, a twitchy feeling in my throat when taking a faster breath, pressure in my lower front teeth, allodynia(a feeling of knives in my feet, for an hour, from dripping a little room temp water on them!), and a drop in BP. I took Benadryl and Tylenol first, and got a total of 5L IV fluids over two days! Both days were the same, including the 20 point BP drop. I got fever and chills later, and my IV site was itching and burning at the end of the infusion both days. Most of this went away once I was back on plain fluids again. Then I woke at 3am with a bad headache, neck and back pain. It hurts to move my eyes or anything, and the pain moves around my head depending on position. I’ll tell the doctor all of this on Monday… it’s already over 6 hours just for the IVIG, and that’s 2 days in a row, so I don’t want to stop or slow it. I would be okay with more premeds or a change in brand. 
 

I had 2 different nurses, and both were kind of blasé. The second one really was inattentive. I had no hives or rash, but they never listened to my lungs. I think it’s all worth it, as long as it helps and is safe - I can deal with a lot of discomfort. I am half fascinated and puzzled.

[Pistol]

@RecipeForDisaster that sounds horrible! I hope these side effects are only temporary and that the IVIG will help you! Hugs, hang in there!

[RecipeForDisaster]

47 minutes ago, Pistol said:

@RecipeForDisaster that sounds horrible! I hope these side effects are only temporary and that the IVIG will help you! Hugs, hang in there!

I’m telling myself it’s definitely worth it and I am going to get better. I believe in placebo if nothing else! I’ll give it a year to make sure it does help. It wasn’t THAT bad, although this morning has been rough, I just don’t want anything to get worse. I even kept working all day yesterday.

[MikeO]

@RecipeForDisasterI was wondering about some of the initial side effects (pretty much suspected you would have some) but sounds like you have pushed thru them. Good Job!

Glad to hear your positive attitude and have not thrown in the towel right off the bat. I really hope the IVIG treatments work.  

[MTRJ75]

Hopefully, the response from the nurses was because this is a common reaction they're used to seeing. 

I get what you mean about willingness to go through any temporary h*** if it meant long term relief. I'd probably make the same decision you are. 

[RecipeForDisaster]

7 hours ago, MikeO said:

@RecipeForDisasterI was wondering about some of the initial side effects (pretty much suspected you would have some) but sounds like you have pushed thru them. Good Job!

Glad to hear your positive attitude and have not thrown in the towel right off the bat. I really hope the IVIG treatments work.  

When something is difficult, I dig in my heels. This may be my last chance at getting better, too. This may be aseptic meningitis, which apparently is not too dangerous. I’ll give it a year if I don’t get worse (that timeframe is what the ordering doctor set).

[RecipeForDisaster]

4 hours ago, MTRJ75 said:

Hopefully, the response from the nurses was because this is a common reaction they're used to seeing. 

I get what you mean about willingness to go through any temporary h*** if it meant long term relief. I'd probably make the same decision you are. 

I think it’s common, but it’s not benign… and allergies tend to get worse with each exposure. They didn’t even listen to my lungs or look for rashes, so they did not really know if it was okay. I felt that my airway was involved, even though I managed to keep air moving! So far it’s 3 really lousy days every 6 weeks, although I’m not over the headache/fever/chills yet. That’s definitely worth it as long as it’s safe!

[MikeO]

@RecipeForDisasterjust checking in to see how things are going.

[RecipeForDisaster]

Back to my regular, thanks for asking! The neurologist said I had aseptic meningitis AND infusion reactions both days, so they added IV steroids before each dose. I’m told I won’t see improvements for 6 months, but I’ll keep getting aseptic meningitis,ugh!

 

[MikeO]

15 hours ago, RecipeForDisaster said:

The neurologist said I had aseptic meningitis AND infusion reactions both days, so they added IV steroids before each dose.

I am so sorry to hear this. Glad you are back on track and doing well. I was hoping you would be able to skate thru this with few issues. Stick with it!

[RecipeForDisaster]

9 minutes ago, MikeO said:

I am so sorry to hear this. Glad you are back on track and doing well. I was hoping you would be able to skate thru this with few issues. Stick with it!

"Skating through" is always my hope, but my body doesn’t usually allow that. I did so well with the iron infusions, though, that I stupidly figured I might manage this easily, too. There are other options, like changing the brand and doing smaller doses more often, so all is not lost yet even if the steroids don’t do it. I’m going to give it the full year. Thanks! But my "regular" is basically garbage, haha.

[MTRJ75]

Why is it so hard to find a win? This specific scenario was the main reason my neurologist said he was against IVIG. I hope you find a positive way through it. 

[RecipeForDisaster]

10 hours ago, MTRJ75 said:

Why is it so hard to find a win? This specific scenario was the main reason my neurologist said he was against IVIG. I hope you find a positive way through it. 

I was so ready for a lot of doctors to say "don’t bother, it’s not safe/worth it”. But, they are all rooting for me and encouraging me to keep going - it seems it’s really my last hope. I told them I can tolerate discomfort if it’s going to help, as long as it’s OK. I just don’t want the infusion reactions to get worse, and the steroids should help with that. Heck, maybe they’ll have the side effect of helping my BP, appetite, and stuff.

 

A year or so ago, I told my friends and a few doctors that I’d never do IVIG, it was too scary/risky for questionable benefit. Here I am, having gotten worse and failed in so many ways since then… yes, I’m all in now. The same thing happened with getting a port for hydration and stuff - almost all doctors were against it, and now they all ask why I don’t have one(or get one ASAP)… except a couple of hematologists who say I’d better not since I can’t be anticoagulated long term.

[MTRJ75]

There are many medications and treatments I initially refused. That list has greatly dwindled over the last five to seven years. 

[RecipeForDisaster]

56 minutes ago, MTRJ75 said:

There are many medications and treatments I initially refused. That list has greatly dwindled over the last five to seven years. 

I totally agree! I have even softened to taking corticosteroids if someone wanted to try them now. I’m definitely autoimmune and have such low BP, appetite, etc - it might be worth it. I said I wouldn’t try 1/2 the meds I’m using now!

[MikeO]

4 minutes ago, RecipeForDisaster said:

I totally agree! I have even softened to taking corticosteroids if someone wanted to try them now. I’m definitely autoimmune and have such low BP, appetite, etc - it might be worth it. I said I wouldn’t try 1/2 the meds I’m using now!

I totally get the meds last year i was only on two + Vitamin D supplement this year i am on seven + the vitamin D would have never figured i would end up here but they are needed. I often wondered if i have a autoimmune issue or some nerve damage especially in my left leg but like usual once you think you have your finger on it stuff changes.

Magicly my hip/butt cheek pain subsided today and my GI/Heart pains kicked in Haha. I do have tools to work with this and will be on the forefront of my upcoming Cardio visit.

Knowing my luck i broke a chunk of plaque from my iliac and now my butt is getting more blood and got stuck somewhere else. as always more to the story coming.   

[RecipeForDisaster]

4 hours ago, MikeO said:

I totally get the meds last year i was only on two + Vitamin D supplement this year i am on seven + the vitamin D would have never figured i would end up here but they are needed. I often wondered if i have a autoimmune issue or some nerve damage especially in my left leg but like usual once you think you have your finger on it stuff changes.

Magicly my hip/butt cheek pain subsided today and my GI/Heart pains kicked in Haha. I do have tools to work with this and will be on the forefront of my upcoming Cardio visit.

Knowing my luck i broke a chunk of plaque from my iliac and now my butt is getting more blood and got stuck somewhere else. as always more to the story coming.   

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. 

[Pistol]

@RecipeForDisaster - you mention you are on steroids with your IVIG - I don't know if you only take one dose before the infusions or are on them for a few days, but in my case I must always ween off them slowly or I get a terrible flare. Even if I am only on them for a few days. 

You mention that some hematologists don't want you to have a port because you cannot be anticoagulated long term - why would you have to? I have a port and am not on anticoagulants. Or do you have problems with clotting? 

I so hope the best for you, and that this will finally bring some relief for you!

 

[RecipeForDisaster]

12 minutes ago, Pistol said:

@RecipeForDisaster - you mention you are on steroids with your IVIG - I don't know if you only take one dose before the infusions or are on them for a few days, but in my case I must always ween off them slowly or I get a terrible flare. Even if I am only on them for a few days. 

You mention that some hematologists don't want you to have a port because you cannot be anticoagulated long term - why would you have to? I have a port and am not on anticoagulants. Or do you have problems with clotting? 

I so hope the best for you, and that this will finally bring some relief for you!

 

I’ve never gotten the steroids before - it’s a big dose before each of the 2 days of IVIG. I hope it goes okay, but if I don’t have an infusion reaction, I’m going to ask for a dose reduction on the steroids. I'm sure it’ll be hard coming off the steroids!

 

I have several clotting disorders and a quadruple average clot risk. My dad had 2  strokes in his 40s from them. At first I was told I could never have permanent access, but now some are saying "go ahead, you’ll just have to take anticoagulants long term"… yeah, not with how many falls and injuries I have!

 

Thanks for your support - you guys have been such a help.