started IVIG this week

[Gingergrrl]

They maxed out at 120 (cc's per hour? Some other unit??). Started at 30 and worked up. Each 40 g bottle took about 5 hours.

120 ml/hr is actually a very fast infusion speed. It's not that it can't be tolerated in the moment b/c it can but the faster the speed, the greater the chance of side effects like aseptic meningitis, blood clots, third spacing of fluid, etc.

My infusion speed for the entire IVIG is 40 ml/hr and we never go faster than that and it takes me approx 7 hrs for each bag of 27.3 grams which are split over three days (making 82 grams total). Although as of now we have officially lowered my dose to 55 grams so it will only be a 2-day cycle vs. 3-day moving forward.

When I do Rituximab, my maximum speed is faster (80 ml/hr) because there is more fluid and I need to complete the infusion within the 10-hour nursing shift. We start it at 10, then move up to 25, then 50, and then 80 (with Ritux). But this works out okay for me since it is a much thinner fluid than IVIG which is very thick.

 

[Peyt]

I take naproxen and Quicksilver Colorado Hemp oil (CBD) for headache pain, and CBD oil for nausea..

Hi Learner1,
Regarding Quicksilver Colorado Hemp Oil for headache, is this something one applies to the neck area or is it something to be ingested?
Also, is this brand "Quicksilver" suppose to be better than others? I looked it up and it seems to be pretty pricy. Thanks
Peyt

 

[Peyt]

Thanks. I think the main SFN symptoms have been:
- Numbness and tingling in feet, legs
- Sensitive skin (went through a period where even clothes were painful; better but still a problem now)
- Stopped sweating. I think this is related to SFN.
- Intense pain in legs, which is probably more related to the inflammatory myopathy than the SFN but who knows.

Your symptoms are very similar to mine,
Except I also have tachycardia and headaches which I don't see in your list.
I was diagnosed with SFN while getting a tilt table test to see if I have a form of Tachycardia called POTS. Part of the test included a QSweat test and showed I have SFN.
But I think since our focus was my Tachycardia all the doctor did was gave me some beta blockers which I have stopped due to side effects.

Through some of my own research on the internet I tried several supplements and found out that 2 products help me tremendously. One is called Nutritional Yeast (which has great amounts of Thiamine that helps with Neuropathy) and the 2nd one is a powder called Extreme Immunity which has Albumin and IgG Immunoglobulin in it. I can totally see how IVIG would be helpful.

How are you doing now? Are you scheduled to get another IVIG soon?

 

[Learner1]

Hi Learner1,
Regarding Quicksilver Colorado Hemp Oil for headache, is this something one applies to the neck area or is it something to be ingested?

Its a liquid that you can spray into your mouth.

Also, is this brand "Quicksilver" suppose to be better than others? I looked it up and it seems to be pretty pricy. Thanks
Peyt

I was quite familiar with medical marijuana from my cancer support group, where several patients were able to legally buy various products with it and use it here in Washington state.

Quite homestly, I was leery of it, especially when I found it was hard to get consistency in it, and when recreational marijuana became legal here, the medical marijuana patients were complaining that they were having trouble accessing the strains they has become used to. It was like the Wild West.

At that time, I didn't see a need for it and I wasn't crazy about what I was hearing, especially with chemicals being used in growing it. And as I have MCAS, I'm careful about everything I put into my body.

However, I was dealing with severe headaches and nausea from the IVIG and my doctor suggested I try it. I was familiar with Quicksilver's detox products, and felt comfortable with their high standards - tgstvtge product would be what they advertised and it would be clean of harmful chemicals.

So, I tried it and it's been effective. And I don't use a lot - one bottle lasts 2-3 months, so cost per use is low.

 

[viggster]

Well, things were going a little too well. Medicare is now denying the IVIG. They told the infusion center my diagnoses do not qualify for treatment. I think the doctor wrote small-fiber neuropathy and myositis (not otherwise specified). So I guess we have to appeal. I don't have any experience with Medicare and appeals. If anyone has any tips, please send them my way. Thank you.

 

[Learner1]

The infusion center should help you appeal. They have people used to doing that. In the meantime, there's a lot of info on Medicare and IVIG if you Google it. You might also contact IDF, the Immunodeficiency Foundation. They have a hotline for people having insurance difficulties.

 

[Gingergrrl]

Well, things were going a little too well. Medicare is now denying the IVIG. They told the infusion center my diagnoses do not qualify for treatment. I think the doctor wrote small-fiber neuropathy and myositis (not otherwise specified). So I guess we have to appeal. I don't have any experience with Medicare and appeals. If anyone has any tips, please send them my way. Thank you.

Do you have a secondary insurance or only Medicare? Also, are you trying to get low dose IVIG for immune deficiency or high dose for autoimmunity? My understanding (which could be wrong) is that Medicare will not cover IVIG for autoimmunity. Can you speak to a Medicare counselor? Most cities have an agency that will do a phone counseling appt re: your rights, benefits, appeals, etc. I do not think that all of their info is always correct, but it might be a good starting point. Good luck w/this!

 

[viggster]

Well I managed to obtain 40g of immunoglobulin and have it in my fridge. I guess I'll try to administer to myself subcutaneously. Anyone have any idea how to get ahold of the necessary pump?

 

[RYO]

Well I managed to obtain 40g of immunoglobulin and have it in my fridge. I guess I'll try to administer to myself subcutaneously. Anyone have any idea how to get ahold of the necessary pump?

Infusion company will often supply the pump. You will need large syringe, tubing and subq needle. I suspect you will need two sites for SQ administration.

You may have tough time getting medicare to pay for infusion company (ie Advanced Home Care) to either set up SQ infusion at doctors office or home setting.

Did you find that the IV IVIG helped your fatigue, muscle weakness or pain?

 

[Gingergrrl]

Well I managed to obtain 40g of immunoglobulin and have it in my fridge. I guess I'll try to administer to myself subcutaneously. Anyone have any idea how to get ahold of the necessary pump?

Are you doing this without a nurse present? I have never done SubQ (only IVIG) but would not feel safe doing it outside of an infusion center with nurses present. I know your insurance has denied it so you don't have a choice (and I'm not saying not to do it) but just want to be sure you are prepared and will be safe if you have an allergic or unexpected reaction.

 

[viggster]

Infusion company will often supply the pump. You will need large syringe, tubing and subq needle. I suspect you will need two sites for SQ administration.

You may have tough time getting medicare to pay for infusion company (ie Advanced Home Care) to either set up SQ infusion at doctors office or home setting.

Did you find that the IV IVIG helped your fatigue, muscle weakness or pain?

I got one-and-a-half doses before Medicare cut me off. After 4-5 days of adverse effects, I did notice some improvements in weakness and fatigue and brain fog. I would expect the benefits to be cumulative over many months if I can figure out how to continue treatment.

A friend donated the 40g of immunoglobulin, so I have to figure out how to get it inside me safely.

 

[viggster]

Are you doing this without a nurse present? I have never done SubQ (only IVIG) but would not feel safe doing it outside of an infusion center with nurses present. I know your insurance has denied it so you don't have a choice (and I'm not saying not to do it) but just want to be sure you are prepared and will be safe if you have an allergic or unexpected reaction.

Yeah, I don't know how to proceed. I just lucked into 40g of the stuff and don't know what to do with it.

 

[RYO]

It may not be worthwhile to try to make arrangements for one time SC IVIG infusion.

I am also guessing that your physician originally prescribed IVIG at higher doses for myositis and neuropathy indications.

Are you in the process of appealing Medicare's decision?

 

[Rossy191276]

Any luck with sorting out more IVIG treatments @viggster ?