headaches post IVIG

[liverbird]

I've had my 6th IVIG session on Friday and I still continue to get bad headaches that can last full days afterwards. I have checked with my doctor on this. My allergist recommended continuing with antihistamines days after because she believes it's an immunological reaction. This has helped minimally. I'll ask her about it again. But in the meantime if anyone has experienced bad headaches for days after their IVIG sessions and has suggestions I'd be happy to hear them.

[s162216]

I do if I infuse too fast, if I keep it at/under 180 ml/hr then 9 times out of 10 I don't get any headaches after, but if I go over then I get bad headaches exactly like you describe that last for days. Most mild reactions like headaches tend to be more common in my (and with others that I know) experience when the rate is a bit high, as a lot of them usually disappear or become less severe when the rate is lowered. In fact if any reactions like headaches, shivering etc start to occur/after during an infusion the first thing that immunology staff tend to do is lower the infusion rate to see if the problem reduces.

Hope this helps,

Sam

[liverbird]

the max my nurse sets the drip to after gradually moving up is only 120

[mali42]

Hi

When I started ivig I used to get bad headaches starting 2 days after my infusion and they lasted for about 3 days easing as the days went on, they did get better the more my body got used to the infusions and now i can't remember the last time I had one.

Malcolm

[s162216]

Everybody's different, it may be that your tolerance to it is beneath that. Perhaps you could ask them to try a lower top rate, and see if that makes any difference?

The only reason that I know I can't go above 180 is simply because when I started about 3.5 years ago I had it every week for the first 3 weeks (and then every 3 weeks after), and every time they increased the rate they gave it at. When they took it up to the next rate on about the 3rd week I got a literally massive headache that lasted for about 3 days, and when I mentioned it to them they took it back down to the previous rate the next time and no headache resulted. I've stuck at that every since, and on the couple of occasions where I tried going above 180 the same headaches have resulted.

If that doesn't help then switching the product to a different preparation might help; I know a few people who had to try a couple of different ones before they found the one that suited them the best and didn't give them any reactions (once again, everybody's different - theres no real way to predict it).

Sam

[aryani]

I agree, everyone is different. For me, lowering the infusion rate is one factor. Another one, is eating and drinking. I have to drink much more than on an average day. My information leaflet stipulates 'keep well hydrated' (or something similar). You could try that as well.
I hope you find a solution.
Aryani

[liverbird]

Thanks for the feedback. Lowering the rate might be a difficult trade-off because then it would take about 8 hours to infuse. And switching the product is not really an option since I believe I'm on the product with the lowest IgA. I'll talk to the infusion nurse and my allergist further.

[s162216]

What product are you on? A lot of the other CVID patients that I know (myself included) are IgA deficient and express anti-IgA antibodies, but I don't know anyone who has actually had a problem with using standard IVIG products (most of them are very similarly low in IgA content anyway these days unlike years ago where there used to be a big difference, mainly because the purification, filtration etc techniques have improved massively). I use Privigen personally because its one of the few not stabilised in a sugar based solvent, which would cause problems with my type 1 diabetes

The opinion of the immunology staff I've had has pretty much been that its more a 'theoretical' risk of reaction, mostly because in patients that happen to experience reactions, no one can actually prove that it was the anti-IgA antibodies for definite that caused the reaction, and its more being cautious. Discuss it with your doctor as you might be fine on another product (serious reactions are extremely rare).

Sam

[liverbird]

This is what I use:
www.gammagard.com/healthcare-professionals/gammagard/gammagard-sd-iga.html

I did have a bad reaction on my first infusion, which is why I now am pre-medicated with Prednisone and Antihistamines. But like you said, we don't know for sure why I had the reaction.

[mimi1]

I am CVID now since 2008. I did experience migraine post infusion 48 hours out every week with Hizentra for 2 years
without fail. My dose is 15 grams of product IVIG percutaneous infusion/weekly. I have used the same infusion rate
since 2008.

My Immunologist changed my product to Gammagard 10% 15 grams/weekly IVIG percutaneous, the migraine is gone. I have been
on Gammagard for 1 1/2 years now.

Last month a representative called me from the Pharmaceutical Company who makes
Hizentra. They are following up on this event, I looked migraine up once on the product insert for Hizentra I dont believe it was listed or it was rare. I can not remember.

Hope this helps. Each individual is different.

[Stuey]

New forum user here, but diagnosed CVID in 2007.

I currently infuse every three weeks and am on Privigen 50g (high dose). Occasionally I will get headaches that generally last a few hours but generally for me it's more a feeling of general tiredness/aches etc.

The only way I have found to lessen this is to reduce the infuse rate. As I have been on the product for some time now my rate is significantly higher, currently my infusion starts at 164 ml/hr and goes up to 656 ml/hr. It seems to be a constant juggling between managing the length of infusion vs the side effects I am prepared to tolerate!

[psalm139]

Hi, just very curious. I am still not getting IVIG, not ready yet. However, I notice most of you seem to be on infusion, versus IM injection. What is the reason(s) for that? One of the things keeping me from starting is the time it takes to infuse, and the symptoms I see people have afterwards. Thanks for your responses! Veronica

[s162216]

Apr 27, 2014 19:40:01 GMT psalm139 said:

Hi, just very curious. I am still not getting IVIG, not ready yet. However, I notice most of you seem to be on infusion, versus IM injection. What is the reason(s) for that? One of the things keeping me from starting is the time it takes to infuse, and the symptoms I see people have afterwards. Thanks for your responses! Veronica

I think what your referring to is 'subcutaneous' immunoglobulin as nearly nobody does IM immunoglobulin injections anymore. Until about 30 years ago having it IM was the only way you could get IgG into the body, but the injections were massive, and according to patients I know who had them years ago, extremely painful and frequently caused reactions. One guy I knew told me that every week he had it his legs would swell up and near double in size for several hours. Anyway, in the early 80's intravenous IgG preparations started to become available, and as - compared to IMIG - it gives much more reliable plasma IgG levels and is associated with less reactions, most people switched over within a few years (where I used to have it in Nottingham the specialist immunology nurse who had been there for years told me they had switched everyone over to IVIG by about 1990). If you want to find out more about experiences with IMIG then ask john as I know he used to have it that way years ago.

IVIG only takes a couple of hours or so for most people, and you only have to have it every 2-3 weeks so its not too long really if you think about it. Serious reactions are very very rare, and most minor ones like headaches can be reduced or removed by simple measures like lowering the infusion rate or taking paracetamol. You just need to see how it affects you personally, and adjust for that as everyone responds differently.

About 15 - 20 years ago subcutaneous IgG preparations started to become available as well - with this you usually infuse every week into the subcutaneous fat for a couple of hours, but their associated with much more constant IgG levels so this benefits some patients and a lot of people do it themselves at home. Another method is to do it by 'rapid push' where you inject a small amount manually everyday, and in some countries like Canada their starting to promote this heavily as it avoids the need for a pump. They did apparently try it a few years ago in the UK, but it was disliked quite a lot by the patients who tried it as they didn't like having to do the fairly large injections everyday.

Discuss this with your immunology doctor or nurse, as once you get started on IgG its really not as bad a you think no matter how you do it. We'll all help you through it don't worry!

Sam

[psalm139]

thanks, again, Sam. I did mean subcutaneous, not IM, thank you. I have such a busy, high stress job, 40- 45 hours per week on average, and just do not know how I would ever get it all done. Also, live in a small town, and during the day is the only time the infusions could be accomplished. Then to have to return to work with headaches, or flu like symptoms just does not seem possible with what I am expected to get done in day. I don't understand how all of you are able to cope, I much admire you all...

[s162216]

Apr 27, 2014 20:08:49 GMT psalm139 said:

thanks, again, Sam. I did mean subcutaneous, not IM, thank you. I have such a busy, high stress job, 40- 45 hours per week on average, and just do not know how I would ever get it all done. Also, live in a small town, and during the day is the only time the infusions could be accomplished. Then to have to return to work with headaches, or flu like symptoms just does not seem possible with what I am expected to get done in day. I don't understand how all of you are able to cope, I much admire you all...

As long as I stay within what I know works for me then generally things go fine without any headaches etc. It is a pain for me having to travel for over an hour and a half to get to the nearest hospital that has any immunology department every 3 weeks for IVIG (I don't drive), but the benefits do outweigh the downsides.

You could try subcutaneous immunoglobulin infusion, which most do at home weekly so you could do it when it suits you, and subcutaneous is generally associated with even less reactions than IVIG anyway. You can only try it, and trust me you'll soon see the benefits after a few months. The only reason I don't do subcutaneous is that I'm naturally of very low body fat, and I have to use what I have for my SC insulin pump - besides I like only having to bother about it every 3 weeks!

Go for it if you can!

Sam

[psalm139]

Thanks, Sam, I will consider this.

[liverbird]

Hi, I've only had IV infusions so far. I've had 7 up till now. My allergist suggested starting with this and then maybe we can consider SubQ. I get it once a month and I'm in for 3-4 hours. I think I'd prefer to continue to do this once a month than spend an hour on SubQ once a week. I just found out my infusion center is open on Saturdays too. So that could be something to check if you can't go during the week because of work.

[dt]

Feb 27, 2014 19:48:36 GMT liverbird said:

I've had my 6th IVIG session on Friday and I still continue to get bad headaches that can last full days afterwards. I have checked with my doctor on this. My allergist recommended continuing with antihistamines days after because she believes it's an immunological reaction. This has helped minimally. I'll ask her about it again. But in the meantime if anyone has experienced bad headaches for days after their IVIG sessions and has suggestions I'd be happy to hear them.

After my fifth session in May I got a migraine that was unrelenting for two weeks. ER visits, drugs, nothing seemed to stop them. Another IVIG friend suggests the following after many years of infusions. This is just what he finds works so I am going with that for tomorrow's infusion.
1 bag saline 1000cc prior and post IVIG infusion
10mg prednisone/25mg benadryl evening prior
20mg prednisone morning of infusion, along with 25mg benadryl IV 30mins prior to infusion
600 mg ibuprofen 3 times day of infusion every 8 hours
Continue ibuprofen following day
He found this prevents headaches and mitigates fatigue

I also use zyrtec every evening because of allergies but you could substitute that the evening before too.

He did agree that it is an allergic reaction.

I am not a doc just a friend with a lot of experience advice so I will try this.

[liverbird]

So the past 11 sessions, never failed to get a headache lasting at least a full day 2 days after my IVIG. This past time, I simply drank a lot of water the following days after my IVIG. Much more water than I typically drink. And no headache this time! Hope this is the solution and I'll be drinking lots of water next month after my infusion to see if it really is the answer.

[marie]

Drink lots of water before the infusion too!
Best regards, Marie