Sign in to follow this  
Followers 0
Margaret

IVIg Infusions

31 posts in this topic

Hi Everyone,

 

If I'm not mistaken, there are one or two individuals on this site doing the IV Ig infusions. Gareth has been to the third Immunologist (supposedly the best in the area) and he said he's a prime candidate for the infusion because of his MBL deficiency and the IgG 2/4 deficiencies. Of course, I've been reading online for a week now and not really liking what I read about it. I don't have to make a final decision till the end of November when he goes back to this doctor. I'm not finding any real *pros* for it and read that it takes 3-5,000 blood donors to get a single dose. It seems very controversial..... 'Course we all know how reliable the web is!!!

 

Anyways, would whoever knows about it personally contact me privately or through this site? Has your health really improved? Did you suffer the intense headaches/migraines? I'm wondering if the better route would be just taking antibiotics whenever you need them?

 

Thanks everyone,

 

Margaret

Share this post


Link to post
Share on other sites

Hi Margaret,

 

Janey has been on IVIg for years and it has done wonders for her condition. My husband Gene had several IVIg infusions after his lung transplant last year. I think Janey gets an awful headache from them. Gene had no side effects at all except for some improvement from his constant infections.

 

Gene and I just enjoyed the peaceful afternoons getting the infusions, reading books. We were actually thrilled that the treatments were prescribed (they are about $10,000 each!) and Gene wanted to have even more of them but he turned the corner with just 2 even though he had been initially approved for a series of 6 monthly treatments.

 

You have to keep in mind though that Gene also asked for seconds of radioactive oatmeal before his stomach emptying test!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Margaret, As Shelley mentioned, I have been on IVIg infusions for years - 7.5 years to be exact. I started at every 4 weeks and an now quarterly or every 12 weeks. We've tried stopping it altogether but when we did my symptoms and bloodwork went haywire again. The ONLY side effect I have is a severe headache 24 hours after the infusions end and it last 24 hours. I know it's going to happen so I plan for it and usually just end up staying in bed. I know it sounds weird, but I do love my infusions because they give me such a boast in energy and a huge reduction in symptoms. The infusion process is boring, but now my clinic has WiFi, so I'm not bored anymore. :)

 

I'm sorry that Gareth may have to deal with this. I'm not sure how he will react to the long hours of sitting. It is a blood product, but all of the safety requirements for it give me piece of mind. I hope all of this helps. I'll be more than happy to talk to you more about it. Just send me an email to my sclero.org address.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Janey,

 

How bad are the headaches? Migraine types or just dull, aching head? He wants to start Gareth on weekly infusions. Did you have a port put in initially or did they just put the IV in weekly? How long do they take? Thanks for all your information. It really helps when I have to make a decision for him and I have no clue what he will experience.

 

Take care, Everyone.

 

Margaret

Share this post


Link to post
Share on other sites

Unfortunately, the headache is pretty bad most of the time and I have to take prescription painkillers. However, the last one was handled fine with Tylenol which was unusual but I'll take it!

 

No, I didn't have to have a port put in, however, it was discussed at one point. They hired a nurse who was incapable of finding a vein. The nurse I've had for the past 2 years is awesome. It's usually one poke and that's it. We do try to leave it in all 3 days. If Gareth has to go 5 days in the beginning, I doubt they'll leave it in that long.

 

I've never heard of "weekly" infusions. Is that one day a week? I started off for one week (5 days) a month, but as I said, that was 6.5 years ago. They may have changed the protocol. My infusions are now 3 day consecutive days, about 5 to 6 hours a day. I take my lunch and computer so I can work or watch a movie.

 

Glad to be able to help!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Margaret,

 

Has there been any decision yet as to whether or not Gareth will be starting IVIg treatments?

 

I'm thinking about you both and sending lots of warm hugs your way.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Hi Shelley,

 

No, I haven't made a decision yet and Gareth doesn't see this doctor till the end of November. I am concerned that he wanted another IgA run on Gareth; that has always been High but no one said anything about it. That COULD be an indication of possible kidney problems due to the build up of IgA proteins in the kidneys, per the web, of course.

 

I'll keep you posted.

 

Take care, Everyone.

 

Margaret

Share this post


Link to post
Share on other sites

Hi Everyone,

 

We got the official word today that Gareth is a prime candidate for the IVIg infusions. His MBL deficiency, his inability to produce a response to the pneumo vaccine, and his IVIg 2 and 4 deficiencies. Both doctors recommend the weekly abdominal infusions, at home, with a nurse present. Needless to say, my jaw dropped when he told me the price per year! They will deal with the paperwork and contacting the insurance companies, thank goodness.

 

My mind is confused. I'm scared that he 'sick enough' to justify them and cautiously hopeful that he will indeed be healthier. He's had a horrible year with two sinus surgeries in April and May, his gallbladder out in August, and mastoid surgery of his left ear last month. All were due to persistent, unresolved infections.

 

I will keep my cyber family posted on when they start. I so much appreciate your input!

 

Take care, Everyone.

 

Margaret

Share this post


Link to post
Share on other sites

Margaret, I edited your post but I think I did it all wrong. I changed it to "IVIg" as that is what I'm familiar with, but that's not how you had it, and I'm pretty sure I'm wrong as I've never heard of IVIg being administered with abdominal infusions (just regular arm infusions). But I only realized that after the fact and I don't recall exactly how you had it. We can straighten out this thread after you clarify it; I'm sure you had it right in the first place!

 

Anyway, I'm sorry Gareth needs the infusions but glad that he is getting them because he needs them!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Hi Shelley ,

 

I was correct....I think!!! The 2 choices, as I understood them, was once a month via an IV line - taking 5-6 hrs OR once a week, through the abdomin, taking about 1 hour at a time. The weekly infusions are more steady in dosage as opposed to the once a month infusion where the levels peak very high, and then, dwindle down all month. I really don't know though.....I'm new to this, but I do believe we are talking about the same thing - IV Ig infusions. The doctor also said the weekly dosages cause less severe side affects.....if they are severe, then Gareth won't comply and go through with them.

 

Take care, Everyone.

Margaret

Share this post


Link to post
Share on other sites

Hello Peggy

 

All I can say is that I so hope for better things for you and Gareth for the coming year. I know it's still awhile off but, hey, start early!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Margaret

 

I'm sorry to hear Gareth needs the infusions as well. Indeed, let's hope they finally give your young man some better/healthier upcoming years. I agree Amanda, why not start early.


Sending good wishes your way!

Share this post


Link to post
Share on other sites

Hi Margaret,

 

At any rate, I thank you for posting and keeping us abreast of this and ALL that goes on with Gareth's health issues that arise. The poor guy has had to endure much, yet with your help, he continues the trek.

 

Please take care and we appreciate the updates.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Margaret, please do keep us informed on how Gareth feels while doing the abdominal infusions. I am happy to hear that there are newer methods to help those in need. We all wish the best for your son.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0