Starting I V I G

[kayjay]

Thinking of you Alex!!!

+1

I know this was a big decision for you. I hope it works for you.

[HopeSprings]

Good luck, Alex! Keeping my fingers crossed for you.

[corina]

Hope you are feeling well Alex!

[Guest Alex]

Thank you everyone for keeping an eye on me.

A brief update - I've hit a bit of a rough patch the day after my infusions were done - headache and nausea (not my favorite combo ). It's probably because they ran the infusion too fast, but the nurses kept telling me everything looked good and I seemed to tolerate the rate well...lesson learned. Now I'll have to convince my dr and my nurses to lower my infusion rate for the following treatments - I hope they'll listen. Everything is much better today but I am a bit tired, so I'll take it easy for the next couple of days and see how things develop.

Alex

[jpjd59]

Alex:

Sorry to hear you have had a rough few days. Hope things improve soon!!!

Pam

[Psalm 23]

Hi Alex,

Thinking about you. So sorry to hear about the post infusion headache and nausea. I'm glad you're feeling better today though. Continue to rest and not push yourself.

Janet

[Guest Alex]

Pam, Janet,

thank you so much.

Today has been decent. No more headache, no more nausea, I'm still a bit tired, but it's "normal" given the circumstances.

From what I read the headache and the nausea are "expected" IVIG side effects, particularly with the first timers and particularly when the nurses do not want to cooperate and slow down the infusion rates. No offense to anyone in the medical profession - fwiw my mom is a retired RN - but just like in any other profession some people are more knowledgeable/understanding than others. So just because the patient in the next bed/chair is OK an infusion rate of 250 mL/h doesn't mean I have the same tolerance level (rant over ) .

I'm hoping the following infusions will be better though.

Alex

[RichGotsPots]

Wow Alex! I just saw this post for the first time. I am so glad you finally got approved. i have been trying to for months. I have autonomic neuropathy and Sjogren's like Lauren Stiles, but I am beginning to think my Sjogren's is secondary to Churg Strauss. Once I get my Rheumy involved I think I will get approved too. The only thing is the protocol is more like Guillane Barre then AAG. They actually might alternate Plasmapheris and IVIG.

Glad you made it threw your first infusions. High dose steroids are great for autoimmune too so that can't hurt.

The only thing I would ask add to your pre load before infusion is IV Saline for extra hydration. If you are on facebook there is IVIG groups. Also Primary Immune org that arizona mentioned has a medical guide for IVIG infusions because that community gets it the most. I know a guy who has been getting it for 30 years every month and never even used a port. He is on one of the forums. It all depends how much /KG you get but most ppl I know take 6-8 hours.

Also for diabtics there is a type without sugar in it. Also if anyone can't take it any more as mentioned above then they can always try out plasmapheris. That is your own blood being taken out and filtered of autoantibodies and then infused back in... Works very similiar to IVIG except it can only be done in the Hospital. Both AAG and CIDP ppl get this or both.

Also I found a research paper that said you need to test for IgG level right before and after. They found that if your IgG levels didnt rise substantially from before levels then it need to be given at higher dose or else its not affective. I dont have the link to the article right now as its 5:15am lol but maybe another day I will post it here.

Prayers it starts working soon. If I get it for Churg Strauss it is 2g/KG and I alternate with Plasma :-x

[Guest Alex]

Thanks Rich,

I hope you manage to work things out with your insurance soon.

I’m getting 1 g/kg, and my first round of infusions were run too fast (3.5 hours or so for 60 g - now you know how much I weigh ). I have since spoken to my neurologist and he agreed to have the rate lowered (with the “risk” of being in the hospital for 8 hours). PLEX is not something I’m looking at (at least not for the time being). My symptoms are not severe enough to warrant any more “aggressive” forms of treatments – I think plasma exchange can be quite rough for someone with dysautonomia (there are others who have had this kind of treatment and I'll let them speak about it if they choose to), but whatever helps, right?

I did have my IgA, IgG and IgM levels tested prior to the infusions (you should have your IgA levels checked as there are special considerations for those who are IgA deficient, I believe I have addressed that aspect in a different post) and I will have some repeat blood work in October after the 3^rd round of infusions. If you get a chance, I’d appreciate if you could provide me/us with a link to the article you’ve mentioned (the one about checking the IgG levels per and post infusions).

When it comes to the steroids, I have my reservations about them – I seemed to have a reaction to the solumedrol, but I won’t rush to conclusions until I speak to my dr and until I’ll have the second round of IVIG.

Keeping my fingers crossed for you.

Alex

PS – thanks for mentioning the FB groups, I’m one of those few people who resist getting a facebook account, LOL - maybe I should reconsider.

[Guest Alex]

I’ve been a part of this community for a year and a half now and I’ve always enjoyed the polite and helpful messages we exchange, but at the same time I believe we need to realize a couple of things: none of us holds the absolute truth; the human body is a very complex mechanism; medicine is both an art and an exact science; there are no diseases, just sick people; and there is always going to be my truth, your truth and THE truth.

I am still young, I’ve lived with this condition for the past 2 years and I have hated it from day one. It has changed my life (and not in a good way) and if a treatment can help me regain some quality of life, then I’d say that a few months can make a huge difference. I wouldn’t want to spend one more day dealing with debilitating tachycardia, or with episodes of excruciating chest pain, feeling like I can't breathe properly, or not being able to spend more than 30 min on my feet due to extreme exhaustion, but I know that no treatment, no supplement, no life style change, no diet will make me better overnight. Everything takes time, but if I can shorten my suffering by implementing a proven, low risk treatment for my condition, then I’ll "risk" and try it - mind you I'm talking a calculated risk here.

I can't speak for other conditions as I am not a medical expert...heck I am no expert whatsoever, but I've learned a thing or two about the so called Autoimmune Autonomic Ganglionopathy (AAG) and the low antibody titer POTS "version" of it. I have posted in the past many articles on this condition, most of which state the following: the sooner the treatment is pursued, the better the odds of the patient, and the first line of treatment (proven by years of research and supported by many case studies/articles) is IVIG.

Also, fwiw I don’t perceive the IVIG as posing major health concerns, just like I don't see it as a miracle treatment for me - at least not yet...it's too soon for me to draw any conclusions. Indeed there are possible side effects, but they are relatively mild and self-limited and most can be alleviated. IVIG has been proven to help people with certain life threatening conditions extend their life, improve their quality of life, and in some cases it has even helped cure some. Perhaps there are alternative treatments, I won’t argue with that, but given my science background I like solid proof and I am yet to find the kind of proof I am looking for.

My dr never suggested IVIG to me (he did mention it casually though). I was the one who pushed and almost begged for it. He never "scared" me into any kind of risky treatment (I would have definitely been scared had he suggested chemotherapy though). In fact a few months back this same dr suggested I see a psychiatrist as some of my problems might be "in my head". I only managed to persuade him to prescribe this treatment for me by presenting him with some sound evidence. In order to get that I had to spend a lot of time researching, reading, looking for answers (a lot of trees have been killed while I printed article after article). It took me a year to get here, but the day my neurologist agreed that I should give IVIG a try was a happy day for me. I actually consider myself lucky to be able to get this as I know there are many others who wish they had my chance.

As far as the bovine colostrum. I won’t deny its qualities. It contains many substances that can be helpful: immunoglobulins, lactoferin, proline-rich-peptides, vitamins and cytokines. It also contains proteins, fats, carbohydrates, minerals, oligosaccharides, growth factors, compounds with antimicrobial properties, as well as high levels of insulin like growth factors (IGF-1 more specifically). The effect of the powerful effect of bovine colostrum on increasing IGF-1 levels is so prominent that the National Collegiate Athletic Association has banned its supplementation for its athletes since this (the IGF-1) is known to increase peak anaerobic power and vertical jump, reduced endurance times, and enhanced ventilatory system and cardiopulmonary processes.

Now, while this may be beneficial for athletes (and not only) the American Institute for Cancer has recently discovered that high levels of IGF-1 may increase the risk for certain types of cancer. The IGF-1 (the most powerful hormone known) which is contained in colostrum (as well as in milk) has an identical chemical structure for cows and humans, and drinking any type of cow's milk noticeably raises the body levels of IGF-1.

Alex

Edited September 7, 2013 by corina

[corina]

Hi everyone,

I'm sorry to let you know that I had to close this topic due to arguing. It took me a lot of time to make edits and get it visible again. I do like to say that I feel pretty sad that this is the second topic that needs closing this week. Let's keep our conversations mature and respectful okay?!

[corina]

I have done more editing within this topic today. Several posts have been removed. Please understand that I cannot pm everyone involved (due to health and lack of time) so if you notice your reply is gone, be aware that it might have been referring to a removed post (if that makes any sense )