IVIG or SCIG the good, the bad and the ugly

[p8d]

Hi everyone.  My Dr is willing to prescribe SCIG for my hyper pots/autoimmune issues/cause which is great as I have read many good things about it.  It seems though that everything states quality of life improves, sometimes significantly, or that it’s worth the downsides.  I have read everything I can find on this site but really am curious what exactly are the negatives and positives.  Can you be upright longer, BP/ HR better, especially fatigue, is it better?  Does it help with sympathetic system regulation?  Anybody with hyper pots do this? Do people stop other meds?  What exactly are the downsides?  I know about headaches/asceptic meningitis but anybody get diarrhea which is listed on the drugs side effects pages?  How many days are you non-functional?  This is a big decision and I want as much info as possible.  Thanks in advance.  

[Clb75]

I’m at my ivig infusion right now, so I thought it would be a good time to post. I’ve been on it for 6 years, and have had POTS for 4 years. In my case unfortunately it hasn’t helped my Pots symptoms at all but it has helped the issue it was originally prescribed for. I’m not sure why I’m not responding Pots wise. I’ve heard of other people having success with ivig so it’s always worth a shot if your doc is willing to try it.

Ivig can cause lots of side effects as I’m sure you’ve read. For me, I get the headaches, along with bad light sensitivity. The day of the infusion I have to go to bed as soon as I come home. I have a headache, light sensitivity, increased Pots symptoms, weakness, hot flashes etc. The next day I have a headache and light sensitivity to where I need sunglasses and to keep the blinds down but I’m able to get out of bed. I book my infusions on Fridays so I can take the weekend to recover. If I had somewhere important to be the next day I wouldn’t be able to go. I’ve also found drinking water before, during and after is very important. Ivig is like oil going in your veins and the more hydrated you are the better it goes. 

I’ve never tried Scig but have heard the side effects are less intense. I have also heard though that you can develop hard egg shaped lumps under the skin if too much liquid is infused at one site. It doesn’t absorb right away and can take a few days to go down. I’ve also heard people saying they feel like there is a water balloon under their skin, again because it takes time for it to absorb properly. 

There is a magazine I like called IG living. You can access it online. It’s got a lot of great information about Ivig and all of the disorders it is used for. 

Sorry for the long post, I hope some of this is helpful. Good luck with everything.

[p8d]

Thanks, @Clb75.  I am sorry that it doesn’t help with pots symptoms.  I have decided to try it and am surprised at the lack of responses given the recent research seems to indicate it’s very effective for some.  Fingers crossed that SQ doesn’t cause the headaches etc that you experience.  Take care and thanks so much for replying.

[Clb75]

Please post with an update once you try it. I hope it works out and you see some benefits. 

[Guest ANCY]

I'm sorry it has taken me so long to reply, too much medical drama... 

I have had a 5 day treatment twice and for the first time getting the follow up that my neurologist prescribed. So this time around was 4 days of a mega dose followed by a smaller dose over 2 days every 3 weeks. Been at it for several months now but that has been punctuated by other health crisis. 

The biggest benefit I see is feeling stronger and less fatigued. It also helps my irregular blood pressure be a little more stable which for me translated to a decrease in syncopal episodes probably by 25-50% I expect that in this area especially I would see even more improvment if I were not at the same time dealing with episodes of extreme anemia and sepsis... With the sepsis (this was my 8th time having sepsis) I recovered much much quicker, my family even commented on it. I also don't catch everything going around any more which is a huge change with my immune system. I can't speak much to heart rate effect as I have a pacemaker. In General seems to give my body a boost, seeing some improvements in gastroperesis and ability to sweat. 

For downsides I do get the migraines both days of infusion but we have found a rate that is somewhat tolerable and manage the migraines best I can with medication. It usually takes all of the next day for me to fully recover and then I start feeling better.  On the days of infusion it does elevate my blood pressure, which is normally somewhat low, to around 140s/100s. This does not for me though, goes away the next day or two. I do not get diarrhea but I'm premedicated with benadryl which shuts my gut down for the rest of the day, typically. 

There is a risk of anaphylaxis, which is greater with certain imuno deficiency. The risk of cross contamination is small however it is still a blood product so good to be aware. Also can make your wbc count drop, which happens with me but only when I get a large dose.  Something else only recently brought up to me is in rare cases it can cause hemolysis of your blood. The hemolysis I have is believed to either be caused by my iron deficiency or because I've had 3 blood transfusions, over 8 units of blood, since May, both much more likely culprits.

Again, sorry it took me so long and I wish you all the best!

[p8d]

Thanks so much @ANCY.  It’s very helpful to hear the good and bad.  I take it you are getting IV not SQ?

I am sorry about the sepsis.  Yikes.  It’s heartening that IVIG is helping you recover faster and that you aren’t catching as much that goes around.  

I would love anything that helps with fatigue, strength  and ability to be upright longer.  

I have many concerns about it all but am hopeful that insurance will cover it and the side effects aren’t too horrible.

[Guest ANCY]

Yes, mine is done IV not SQ.  What kind of access will you use if you go IV? We tried doing it with peripheral IVs once, that was enough! It is very thick and hard on the veins and it took 3 ivs to get me through a day's dose. I do have horrible veins to begin with though...  I hope that you do find it helpful and without to many side effects! 

[p8d]

Thanks, @ANCY.  Because I get migraines and I am a chicken and extremely sensitive to many meds we are starting with SQ.