Informal Survey re: IVIG

[Gingergrrl]

I was able to get to this sooner than I thought and here is the link @Vineyard1 for IVIG vs. SCIG:

http://www.ipopi.org/uploads/Duff IVIg and SCIg 7.pdf

Also @Vineyard1, when you said that your doctor said that 40 grams was the max dose for your weight, I assume he meant for immune deficiency but not if you were doing the higher autoimmune dosing? My docs said that the autoimmune dosing is 4x higher than the immune deficiency dosing but it is doubtful I would ever tolerate it and too risky so I am starting with a lower dose for the first one to see how it goes. Am sorry about your new episode of POTS and hoping you get some improvement soon. Thank you again for all of the info and the healing thoughts.

I also wanted to ask you, @helen1 a few questions after reading your responses... I was curious which brand of IVIG you use (if you know) and also when you said you drink 2-3 extra cups of water on the day of IVIG, how much do you normally drink? I struggle with drinking water but know this is crucial with IVIG and am trying to get a sense with how much total water people are drinking on the day before and the day of. Thanks again.

 

[justy]

But maybe after several months, I could switch to SCIG for maintenance... Do people ever do it that way?

Yes, and in fact this is what I meant - something to think about for the future. I had my first two SCIG injections in the Drs Clinic - this is standard procedure. But theoretically you are at ANA risk every time you switch vials as it has different donors GG's in. I have suffered an atypical ANA at home from one particular vial, but didn't need to Epi (no throat closing, breathing issues or swelling)

 

[Gingergrrl]

Thanks Justy and I am pretty sure they would eventually let me switch to home health vs. going to an infusion center but am not sure if they would ever view the SCIG dose as high enough for autoimmune dosing?

Right now we're trying to switch the brand on the request to Gamunex (which I believe is actually cheaper, besides being better tolerated in MCAS patients, so that part should be okay.)

Been discussing IVIG in my two MCAS groups and a newer group I joined for people with my specific autoantibody and the responses are overwhelmingly positive. I learned that having the steroid as a pre-med not only can protect against anaphylaxis but also against the risk of aseptic meningitis which was good to know.

Hoping to learn its been approved or denied next week so I can either start treatment or start the appeal process.

 

[helen1]

@Gingergrrl Sorry can't quite remember, maybe Gammagard and this month I do know it was Gamunex - for some reason the brand was changed.

I actually drink ginger tea before I go and while I'm there. I don't usually drink much in the morning but do eat veggies.

 

[Gingergrrl]

I wanted to post an update that my insurance approved the Gamunex (IVIG) today but there are a few issues that I have to straighten out since the doctor who ordered it and the local infusion center/doctor who will be administering it are two different places. I need to coordinate this and we are moving to a new apt in five days so I definitely will not start it until after we have moved (doubtful I could coordinate it all sooner than that anyway.)

It was approved for a very high autoimmune dose where you do three days in a row (which I know is too much for me) and I am going to see if I can change it to the original plan which was to do it just one day with each infusion 3-4 weeks apart (which I think I can tolerate.) The insurance states that after three infusions if there is no adverse reaction, they'd want me to switch to home health but I am too high risk b/c of my MCAS and I think we can challenge that part.

They also said after three infusions they'd want me to add an immunosuppressant/modulator or plasmapheresis (which is what I've wanted all along) and am hoping RTX counts in that category. But am trying not to get ahead of myself and first just hoping to reach my local doctor to let him know it's been approved and discuss the pre-meds, infusion rate, frequency, etc, and make sure we are all on the same page.

But am thrilled that my hard work since March (five months) of advocating for this has paid off and am really ready to try this as soon as possible after we move next week.

 

[Groggy Doggy]

I wanted to post an update that my insurance approved the Gamunex (IVIG) today
But am thrilled that my hard work since March (five months) of advocating for this has paid off and am really ready to try this as soon as possible after we move next week.

That's great news!!!

 

[Gingergrrl]

That's great news!!!

Thanks GD! I like your new doggie with the bubbles but miss the old one who was sleeping in her water dish!

 

[Navid]

Congrats and GOOOOOOOOOD Luck. I hope this is the breakthrough for you. We will all be waiting on pins and needles to hear how you do and of course "praying" for the BEST results. Good thing weiner dogs are so darn persistent

Hugs and Hope, Lisa

 

[Gingergrrl]

Congrats and GOOOOOOOOOD Luck. I hope this is the breakthrough for you. We will all be waiting on pins and needles to hear how you do and of coursing "praying" for the BEST results. Good thing weiner dogs are so darn persistent

Hugs and Hope, Lisa

Thank you so much Lisa and no clue yet when I start the IVIG but at least I have approval for three infusions. Will definitely keep you and everyone posted and thank you for your support and kindness.

Literally everything I read from viral infection in the heart, to immune deficiency, to autoantibodies, to neuromuscular weakness etc all point to IVIG as the treatment so I am hopeful it could help regardless if I ever know the true cause.

And dachshunds are definitely persistent which is why mine chose me, we are a good pair LOL.

 

[Gingergrrl]

This is a brief update b/c we just moved yesterday and I plan to post more tomorrow or as soon as I am able. But I finally have good news that my first IVIG will be on 7/20!

We have a really solid plan that I feel very confident about (starting low dose, eight hour infusion speed, solid pre meds for MCAS, tiny amount of saline, etc) at infusion center where all nurses trained for IVIG for MCAS patients and can call my MCAS doc the moment there is a question or problem.

It's Gamunex and if allergic, next time can try another brand. Starting much lower than an autoimmune dose but will slowly titrate up in future infusions depending how I do. My MCAS doc has 30-40 patients on IVIG and not one has had anaphylaxis from it which was very encouraging.

I went to see the infusion center after my appt and was very impressed and comfortable with the facility and the staff I met. Completely different than the horrible experience I had at an infusion center in 2014 (at different hospital).

My husband and my best friend are coming with me to the first infusion for moral support and feel like I am really on the right track.

I guess this wasn't as brief as I planned and very hard for me to type a brief post LOL. In case my ME/CFS Doctor reads this board (am honestly not sure?), thank you so much for fighting so hard for the opportunity to try IVIG and coordinate with my local docs. Am very, very grateful.

 

[Gingergrrl]

Just wanted to post that I am doing my first IVIG (Gamunex) right now and it is going really well. Am doing 24 grams to start which is nowhere near the autoimmune dose but much safer to start slow.

I took Zyrtec, Atarax, Pepcid, and Tylenol as oral pre meds and then 100 mg of IV Solu Cortef plus D5 Dextrose solution. Then we started the Gamunex at 35 ml for first hour and increased to 70 ml for the 2nd hour and now 105 ml for 3rd & 4th hours.

I initially got slight increase in heart rate and phlegm in throat so they had me take a 2nd Atarax and ever since then I've had no problems whatsoever. The infusion center is very nice and my husband and best friend are here with me. If this goes well, my next infusion in three weeks (8/10) will be 36 grams and hope to slowly increase to a true autoimmune dose.

 

[justy]

Just wanted to post that I am doing my first IVIG (Gamunex) right now and it is going really well. Am doing 24 grams to start which is nowhere near the autoimmune dose but much safer to start slow.

I took Zyrtec, Atarax, Pepcid, and Tylenol as oral pre meds and then 100 mg of IV Solu Cortef plus D5 Dextrose solution. Then we started the Gamunex at 35/ml for first hour and increased to 70 ml 2nd hour and now 105 ml for 3rd hour and this is the highest it will go today.

I initially got slight increase in heart rate and pleghm in throat so they had me take 2nd Atarax and ever since then I've had no problems whatsoever. The infusion center is very nice and my husband and best friend are here with me. If this goes well, my next infusion in three weeks will be 36 grams.

Wow that's amazing news! I really hope it helps you.

 

[Gingergrrl]

Thanks @justy and it is over and we are in the car now going to get something to eat. Never had to get the IV Benadryl which was on stand by and no further side effects beyond the very brief tachy and phlegm. Am very happy and relieved!

ETA: I wanted to update that it's been about 7-8 hours since my IVIG infusion ended and have no side effects whatsoever! Talked to one of my doctors and we decided if I tolerate the 36 grams in Aug with no problems, then as we increase further toward the autoimmune dose it will be in divided doses. Now I need to discuss with my local doctor who is supervising this to make sure he agrees and hoping he will.

Am really hoping insurance will authorize beyond the three infusions b/c it will take me a while to safely reach the autoimmune dose and three infusions total will not be enough to know if it is effective.

 

[Gingergrrl]

Questions for those who have had IVIG:

Can it raise your BP or cause edema? My normal BP with Midodrine is in the 90's/60's and without Midodrine is in the 80's/50's and my pulse pressure is often around 18-24.

Today after my first IVIG yesterday my BP is 112/73 and later 108/77. I realize these are not "high" BP's for a normal person but I did not take any Midodrine yesterday or today and I literally never reach this high of a BP! I drank two liters of water in the days leading up to IVIG, and the day of IVIG, which I also never do so this could also be a factor.

I am not too concerned about the BP but wondered if an increase is considered normal? Am not having any tachycardia.

I am concerned though b/c am having some swelling in my fingers to the point that my rings are tight and do not come off. We finally got them off and now my fingers going back to normal size (but have worn these rings for four years and this never happened to me before)!

Am going to check the Gamunex site and assume this is nothing major to be concerned about but was curious of others experiences with IVIG plus drinking more fluids. The total volume I received with the IVIG and 75 cc's of D5 dextrose solution was approx 1/3 of a liter so not a massive amount.

Thanks in advance if anyone has any thoughts.

 

[justy]

@Gingergrrl http://www.healio.com/pediatrics/em...an-underreported-side-effect-of-ivig-infusion

 

[liverock]

@Gingergrrl

IVIG can cause increased water retention, usually initially through the increased lipids and protein in the IVIG.
This is called Hyponatremia and had personal experience of hyonatremia last year(not through IVIG though). It usually wears off after an IVIG in a day or two, if not contact the doctor.

Listed under mild side effects in TABLE 4 of:
http://www.bstquarterly.com/Assets/...Adverse-Effects-of-Immunoglobulin-Therapy.pdf

 

[Gingergrrl]

Thank you so much @justy and @liverock for the links and am printing them out now. We ended up speaking with both of my doctors last night b/c the combination of the raised BP, edema in fingers, a 4-5 lb weight gain on scale in one day, and unbelievable excessive thirst which I've never experienced, etc, was concerning to us.

Both assured me that this was not necessarily "normal" but was safe and luckily my BP has a long way to go before actually being in the high range. My MCAS doc said the IVIG was infused too fast and the nurse did not listen to his order b/c I should have been there until 4:30 pm vs. being finished at 1:30 pm.

He said the infusion speed was most likely the cause of this. He said to "sleep it off" and in 3-5 days my body should re-absorb all of the fluid. He said the additional water and steroid also contributing to this b/c the steroid can cause swelling (but having the steroid decreases the risk of anaphylaxis and aseptic meningitis so is worth it IMO).

My fingers are less swollen today and my BP is lower (but still higher than normal for me) so for now I definitely do not need any Midodrine. Am also now 3 lbs less on scale from the fluid gain which is good.

So my second infusion we will still increase the dose but the infusion speed will be much slower. Sadly I cannot drink electrolyte drinks b/c of my MCAS (allergic to ingredients in Pedialyte, Nuun and Vitalyte) but I can take salt stick tablets, and I can drink coconut water.

Overall, my ability to tolerate the infusion went better than I expected and I never had anaphylaxis or even the headache that they all prepared me for. Next time in preparation, I will drink coconut water vs. only plain water and will insist that the nurse do the slower infusion speed no matter what she says.

We plan to increase from the 24 grams to 36 grams (at next infusion in three weeks) but anything higher than that in the future will be in divided doses. So if I ever reach the autoimmune dose which starts at approx 54 grams for my weight, it would be split over a 2-3 day period and not all in one shot. I have no idea if I will make it that far, and will only do what is deemed safe for me, as much as I would LOVE to attempt a true autoimmune dose.

 

[Gingergrrl]

Overall, my ability to tolerate the infusion went better than I expected and I never had anaphylaxis or even the headache that they all prepared me for.

Am quoting myself b/c I spoke too soon on this and while I did not have any anaphylaxis (Thank you God), I ended up with a delayed headache that was severe and debilitating and has lasted for ten days and just spent the entire night in the ER. It's not 6:30 a.m. and am back home. I wrote about this in the burn out bench thread but wanted to add it over here so more people can see it and hopefully share their experiences with me.

Am curious, has anyone had this headache from IVIG (if you have, you know exactly what I mean!) and if so, how long did it last and how did you finally get rid of it? I am not allowed to continue with IVIG until it is gone- which I totally understand, it is just disappointing. I see my doctor on Weds to discuss further.

It's a real bummer and I am trying to maintain a good attitude about this but it is very challenging to have this constant pain plus to find something that might help me but not be able to continue (but I might, so am not giving up hope yet)!

It seems many on PR have had IVIG so am very curious to hear if others had this headache? They ruled out I do not have aseptic meningitis, which is a relief, but the headache/pressure still sucks .

 

[Gingergrrl]

I am continuing the discussion from the burnout bench re: IVIG :http://forums.phoenixrising.me/index.php?threads/the-burnout-bench.817/page-26#post-749479" in this thread.

Am tagging @Groggy Doggy @justy @Navid who were all discussing it with me (at different points) and hope I am not forgetting anyone! I think it's better to keep it all here in this IVIG thread than on the burn-out bench thread.

 

[justy]

I am continuing the discussion from the burnout bench re: IVIG :http://forums.phoenixrising.me/index.php?threads/the-burnout-bench.817/page-26#post-749479" in this thread.

Am tagging @Groggy Doggy @justy @Navid who were all discussing it with me (at different points) and hope I am not forgetting anyone! I think it's better to keep it all here in this IVIG thread than on the burn-out bench thread.

Yes agreed - the Burnout bench was getting a bit noisy with all the people jostling to discuss the IVIG/SCIG situation. Good call to bring it over here.

BTW how are things with you now? how is the headache?