Finally started IVIG

[crypt0cu1t]

As most of you know, I have been waiting for months to get IVIG approved and it finally was!

For anyone who doesn't know, my illness seems to be a relapsing- remitting autoimmune/autoinflammatory condition in nature as I have a high ESR, high CRP, high AChR antibodies, high Salivary Protein 1 antibodies and frequently elevated Eosinophils along with high prostaglandins.

I am receiving 2g/kg on a monthly basis for 1 year. I am seriously hoping this works for me as I dont know how much more I can take.

I'll be updating this thread every other day or as much as I am able on how the treatments are going!

Special thanks to @Gingergrrl @Forçe e Honra @Learner1 @Diwi9 @Aerose91 @Nickster and @Sidny for supporting me and being great friends while I'm going through this.

 

[Learner1]

Wow! Great news! Please reach out if you need anything and keep us updated on your progress!

 

[crypt0cu1t]

Wow! Great news! Please reach out if you need anything and keep us updated on your progress!

I definitely will, thank you!

 

[Lisa108]

Congrats! Keeping my fingers crossed!

 

[StarChild56]

I am so happy for you, and I hope and pray that this brings you much improved health

 

[Diwi9]

Congratulations @crypt0cu1t!!!. I'll look forward to your updates and hope access to this treatment kicks the butt of whatever is making you ill.

 

[frozenborderline]

I'm really curious to see how this goes. I'm starting trying to get insurance to approve IVIG myself. I also had high eosinophils and high IgE.

 

[Dakota15]

Definitely keep us updated @crypt0cu1t! Fingers crossed for you!!

 

[ebethc]

I'm really curious to see how this goes. I'm starting trying to get insurance to approve IVIG myself. I also had high eosinophils and high IgE.

what does high eosinophils and high IgE indicate? I'm guessing high IgE = allergies, but not sure...

 

[Mary]

That's great news !! Keep us posted --

 

[crypt0cu1t]

what does high eosinophils and high IgE indicate? I'm guessing high IgE = allergies, but not sure...

Typically high Eosinophils indicate an allergic response to something or a parasitic infection.

 

[crypt0cu1t]

I'm really curious to see how this goes. I'm starting trying to get insurance to approve IVIG myself. I also had high eosinophils and high IgE.

Have you looked into Churg-strauss syndrome? It's hard for me to determine one disease since I have so many symptoms of other diseases and antibodies but that's a possibility for me.

 

[crypt0cu1t]

Quick update:

Started the infusion at 10AM and I'm just now finishing it up. No noticable changes except low grade fever and extreme mental fatigue and no severe side effects at all.

Tomorrow I have my final 60g infusion and I will be done for the month!

Does anyone else notice low grade fevers with their infusion?

 

[Gingergrrl]

This is great news @crypt0cu1t and I am so happy for you about the IVIG! And I love the new avatar pic with your dog. To answer your question...

Tomorrow I have my final 60g infusion and I will be done for the month!

Can you clarify your IVIG dose/cycle? Are you doing 60 grams per day for 2-days in a row for a total of 120 grams per month (or something else)? 60 grams is a huge amount to do in one day but everyone is different in what they can tolerate. My total dose was 82 grams which was split into a 3-day cycle of 27.3 grams per day. I also did a very slow infusion speed.

Does anyone else notice low grade fevers with their infusion?

I tended to get a delayed headache and immune reaction from each IVIG cycle. I usually felt fine at the end of day one but by the end of day 2 or 3, I'd have what I call the "IVIG headache" and often an immune reaction with low-grade fever, chills, muscle pain, neck stiffness and sometimes nausea. Some batches were very mild and others were brutal. The reaction could last 2-3 days but was always temporary.

The only exception was my very first IVIG in July 2016 (which was just one day but was given at much too high of an infusion speed for me). I ended up with severe intracranial pressure for 10 days until I finally went to the ER to see if I had aseptic meningitis. After that, we slowed down the infusion speed and it never happened again in my 2-yrs of IVIG.

 

[crypt0cu1t]

This is great news @crypt0cu1t and I am so happy for you about the IVIG! And I love the new avatar pic with your dog. To answer your question...



Can you clarify your IVIG dose/cycle? Are you doing 60 grams per day for 2-days in a row for a total of 120 grams per month (or something else)? 60 grams is a huge amount to do in one day but everyone is different in what they can tolerate. My total dose was 82 grams which was split into a 3-day cycle of 27.3 grams per day. I also did a very slow infusion speed.



I tended to get a delayed headache and immune reaction from each IVIG cycle. I usually felt fine at the end of day one but by the end of day 2 or 3, I'd have what I call the "IVIG headache" and often an immune reaction with low-grade fever, chills, muscle pain, neck stiffness and sometimes nausea. Some batches were very mild and others were brutal. The reaction could last 2-3 days but was always temporary.

The only exception was my very first IVIG in July 2016 (which was just one day but was given at much too high of an infusion speed for me). I ended up with severe intracranial pressure for 10 days until I finally went to the ER to see if I had aseptic meningitis. After that, we slowed down the infusion speed and it never happened again in my 2-yrs of IVIG.

I'm doing 60 grams a day 3 days in a row, it typically takes about 6 hours for it to finish, but I'm asking her to slow down today because I have a severe headache.

Exactly how long did it take before you noticed slight improvement? I was already in the middle of a flare when starting it so it's hard to tell what's a side effect and what's not.

I'm wondering how long the fever and chills will last after each infusion.

 

[crypt0cu1t]

Update 2:
This is my final 60g infusion for the month, so I wanted to post a quick update.

Strangely I woke up with severe visual snow and a severe headache but l am noticing the neuropathy in my legs startimg to diminish, however, this could be a fluke so I'll wait and see.

Side effects:

• Severe headache
• Slight fever
• Chills
• Flushing

 

[Inara]

I tended to get a delayed headache and immune reaction from each IVIG cycle. I usually felt fine at the end of day one but by the end of day 2 or 3, I'd have what I call the "IVIG headache" and often an immune reaction with low-grade fever, chills, muscle pain, neck stiffness and sometimes nausea. Some batches were very mild and others were brutal. The reaction could last 2-3 days but was always temporary.

I take SCIG, but I also got these symptoms. I was told to take cortisone if I get them, and it always helped. After some months I didn't get the symptoms anymore. Did you take cortisone, too?

 

[Gingergrrl]

I'm doing 60 grams a day 3 days in a row, it typically takes about 6 hours for it to finish, but I'm asking her to slow down today because I have a severe headache.

Wow, so you are doing 180 grams in 3-days! It was rough for me doing 82 grams in 3-days (but it was manageable). I am glad that you have asked them to slow down the infusion speed. My MCAS doctor said that my infusion speed could not be any faster than 8-hours. By the end, we got it down to 7-hours (not counting the 30 min for the pre-meds, inserting the IV and setting up the bag, etc). But the slower speed drastically improved the headache for me (and also decreases the risk of blood clots and aseptic meningitis). The IVIG headache was (almost) always delayed and could sometimes be 24-48 hour delayed.

Are you doing Gamunex or another brand?

Exactly how long did it take before you noticed slight improvement?

I noticed an improvement in my MCAS and allergic reactions almost immediately. The other improvements (to my muscle strength and breathing) were slower to occur and the final improvements that led to remission of everything, including severe POTS, did not happen until many months after Rituximab was added (in my case).

I'm wondering how long the fever and chills will last after each infusion.

It took about 2-3 days in my case and occasionally a little longer.

Side effects:

• Severe headache
• Slight fever
• Chills
• Flushing

This all sounds normal to me (for IVIG).

I take SCIG, but I also got these symptoms. I was told to take cortisone if I get them, and it always helped. After some months I didn't get the symptoms anymore. Did you take cortisone, too?

I take Cortef (hydrocortisone) daily since 2015 and am now in the very slow process of tapering off of it. When I had the most severe reaction to my very first IVIG (which was infused too quickly), I was given IV Decadron in the ER to reduce the intracranial pressure. I then had one more dose of Decadron (in pill form) but had a horrible reaction to it and will never take it again. I do not do well with steroids in general (but I know they are miraculous for other people and have nothing against them, I just do not tolerate them well).

 

[wherearemypillows]

A little late to the party here, but congrats on getting the approval @crypt0cu1t and taking a big step forward on this health journey! Thanks for the updates; I'll be following along and hoping that the treatments work for you.

 

[crypt0cu1t]

A little late to the party here, but congrats on getting the approval @crypt0cu1t and taking a big step forward on this health journey! Thanks for the updates; I'll be following along and hoping that the treatments work for you.

Thanks! I'll be updating when I'm able. Its good to hear from you again!