About to start Ivig - but still unsure...

[tiredlight]

My Doc said that Ivig would be an option for me because I have persistent neuralgia and a weak immune system.

So I have the Ivig (subcutaneous) already in my fridge.

But...

I am so sensitive to meds. I got worse from so many meds. And now I am unsure if I should dare Ivig. Dont want to get worse.

What reactions did you have when using it?

 

[Ema]

If you have low levels of immunoglobulins, I think it is really important to replace them for any chance at getting an immune system to function and keep chronic infections at bay.

If you have a lot of infections, it is likely that you might feel a little flu-ey after your infusion. I generally get a local reaction in my belly on the day that I do the infusion which is red and swollen and itchy. You can pretreat with Benedryl but its never been bad enough for me to do that. Then the second day I got a migraine for the first 5 infusions but that has not happened for the last two. Some muscle aches and pains are also typical.

I honestly take the side effects as a positive sign that things are working in my system. The nurse says that they will continue to get easier and I eventually won't notice much at all as I get healthier. I'm really excited to have the opportunity to try this treatment.

Do you know the dose you have been prescribed to start? I think it is good to start low and work up personally.

Has the nurse come to show you how to do your infusion yet?

Ema

 

[dsdmom]

I did ivig for 2 years through my neurologist based on stmptoms of dyasutonomia and autonomic neuropathy. I did the iv kind not the sub q kind. It helped with neuropathy and probably with overall symptoms but then I felt like it wasn't doing much. The first time was 5 days in a row then once a month after that. I got used to the side effects which would keep me in bed for 2 days post infusion and always included a headache. However if you are doing sub q I believe the side effects should be much less as it is designed to keep you more at a steady state throughout the month.

 

[ukxmrv]

Hi Tiredlight,

I did infusions of IVIG. You say that you have some to take subcutaneously instead. Then I am wondering of you are seeing one of the old UK doctors who still uses this method (IMIG)? Dr Richardson was treating ME patients for a long time with this method and there are still a few older UK docs who use it.

When I was talking to docs about IMIG vs IVIG one of the advantages of the former was that it was a much smaller dose. I didn't have any bad reactions to any of my infusions ( which was a higher dose I am assuming).

My doctor did get me to take a Benadryl before each one which made me sleepy as usual. Some people do report allergic reactions like hives and some do get sore throats and glands after.

With the lower dose IMIG I am assuming less side effects as a smaller dose. Maybe you could ask your doctor if you should take a Benadryl or something with the injection?

 

[tiredlight]

Ema, I think my immunoglobulins are in the lower range, but still okay. I dont have much usual flu-like infections but probably a chronic one. So Im prepared for a local reaction and headache.

My normal dose will be 10 ml I think, but I am supposed to start with a lower dose. What is yours? I will start my first dose at my doctor's office. I dont know if I can do the next ones myself.

Great to read it helped for your neuropathy, dsdmom. Thats also my big problem.

Ukxmrv, no, I am not seeing one of the old UK doctors. Im not in the UK. Will talk about Benadryl, but again there is the danger that I do not tolerate most meds. So even sub Q Ivig is a risk for me, but I have to try something because cant stand this pain anymore.

 

[Ema]

I do 10 g now which is 50 mL of Hizentra.

Hizentra doesn't need to be refrigerated. Not sure what brand you have though but I would not think infusing it cold would be a good idea. I would definitely check with the doctor or pharmacist.

The infusions are easy to do. There seem like there are a lot of parts when you get the big box from the pharmacy but really there is just a pump, rate tubing, and a syringe to hold the medicine in the pump.

They should also include an epi pen just in case though my nurse says she has never known anyone to need it. Better safe than sorry.

Ema