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Margaret

IVIg Infusions

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Hi Margaret,

 

I do hope that the infusions go well for Gareth and that they do improve things for him. :emoticons-group-hug:

 

Best wishes to both of you,


Jo Frowde

ISN Assistant Webmaster

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International Scleroderma Network (ISN)

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Margaret,

Like Shelley I had never heard of IVIg in the abdomen, so I did a little research. Apparently, it's called Subcutaneous immunoglobulin (SubQ) and it's administered as you said once a week in the abdomen. Apparently the immunoglobulin (injected solution) is the same as that used for IVIg, but administered differently. The information I found did mention that the side effects were milder and that the patient doesn't get the swings that can occur with IVIg. I usually know it's time for my infusion because the week before, I'm pretty exhausted. I'm going to have to ask about this on my next infusion. It looks interesting.

 

This definitely looks like the best method for Garath. The hour once a week will be much easier than the 6 hours, 3 to 5 consecutive days every few weeks. Please let us know how Garath handles it and if it works for him. I'm sorry that his condition is such that it requires this treatment at all; however, speaking from experience - it sure has improved my quality of life!!!!

 

Yes, it's expensive! Thank goodness for insurance!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

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(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Everyone,

 

Gareth will be starting the IvG infusions on January 16. I was so surprised when they called the week before holiday and said they would be out December 19th......less than two weeks after the doctor ordered them!!! I expected some long, drawn out fight with the insurance companies!!! We had to wait, though, since we went on vacation the week of December 25 for the whole week.

 

The first dosage, GammaGuard is through an IV, for 2-3 hours. The following weeks, it's sub Q, with Hizentra, and should take 60 minutes. A nurse will come to the house and deal with it.....thankfully.

 

I will keep all of you posted on how it works out. He's been having so many abdominal issues, lately, and has an upper barium scheduled for January 18. All he can tell me is that his belly hurts....not as bad as the gallbladder pain of last summer, though.

 

Take care and best wishes to everyone this coming year of 2012.

Margaret

Mom to Gareth, 23 years old, DS/ASD

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Hi Margaret,

 

Thanks for updating us regarding Gareth's IvG infusions. At least he hasn't had to wait too long for them to commence and I do hope that they will improve things and make him feel better.

 

I shall be thinking of you both on 16th January.

 

:emoticons-group-hug:

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Margaret,

I hope all goes well with the infusions and that they help Gareth. Give him a great big hug from all of us on the forum.

 

 

:emoticon-hug: :emoticon-hug: :emoticon-hug: Hi Gareth! :emoticon-hug: :emoticon-hug: :emoticon-hug:

 

miocean


ISN Artist

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Hello Margaret

 

Here's to Gareth and his IvG treatment that will go really, really, well!! :happy-dance: :high-five:

Gareth :you-rock: !!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hey Ladies ,

 

I want you to know that you all brought a BIG smile to Gareth's face today when I showed him the smiley faces and dancing beavers!!! Thanks for the support and kind words.....I wouldn't know what I'd do without all your support.

 

Take care, Everyone.

Margaret

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Hi Everyone,

 

Well, Gareth had the first infusion yesterday and no severe side affects or headache. It took about 2 1/2 hrs and the only *issue* that came up was his blood pressure dropping occassionally to @ 78/48. The nurse would *back off* a bit on the fluid speed and everything would return to normal. I guess this happened 2 times. On Monday, he will start the subQ infusions with 3 needles and a pump. She assurred me that this is something Gareth & I can learn to do weekly. My understanding is that it is like an insulin pump? I will keep you posted.

 

Take care, Everyone.

Margaret

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Margaret,

I am glad all is going well so far. Doesn't sound like much fun for Gareth, though.

 

When I was on dialysis my pressures would drop that low and they would back off drawing off the fluid, bringing it up. It makes you feel very light headed and sometimes I would pass out. I was in a reclining chair and they would put my chair way back. I was told never to put my head between my legs, that it is better to put the head back. There have been times when my husband's pressure has dropped and we have put his head back and it works.

 

One of the times my catheter became infected I had to give myself twice daily infusions. I could do it through my catheter and didn't have to use needles but the first time I did it the solution ended up on the floor instead of inside me! Fortunately, a nurse was on call and came right over. I am sure you will be able to learn and that there will be help when you need it.

 

miocean


ISN Artist

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Hi Margaret,

 

I'm pleased to hear that Gareth's first infusion went quite well, despite the drop in his blood pressure. When I did a first aid course, I remember they told me the same as Miocean's advice, i e. to put the head back, not forward, as I'd imagined.

 

I do hope he will get on equally well with the subQ infusions on Monday and I shall be thinking of you both.

 

Here's a couple of :emoticon-hug: :emoticon-hug: for him, as you said he likes them!!

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Margaret,

I'm glad to read that Gareth's first IV infusion went as well as it did, save the drop in BP. It's too bad when it has to take so long, yet each person is different on how their body accepts the speed of such things, be it dialysis, infusions or the like.

 

appreciate your keeping us posted! Hope he continues to do well with his infusions.

 

 

Good tip about head back rather than between knees, miocean! Thanks!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Margaret,

 

I'm delighted to hear that Gareth's first IVIg infusion went well. The subcutaneous infusions with a pump sure sound interesting.

 

I don't know about you, but sometimes I'm pretty amazed by what they expect us to do at home, with no medical background at all to draw upon. I had to give Gene all sorts of shots at home, after his lung transplant. They gave me about five minutes of instruction (tops) in how to give shots in the arm, in the stomach, etc. I'd have to think they get more than that in medical school? But no, they cut me loose with my victim/husband, entrusted me with a lifetime supply of syringes and drugs I couldn 't even pronounce let alone tell apart, and I merrily proceeded to give our dining room tablecloth so much heparin that it will never suffer from a blood clot, as long as it lives.

 

I sure hope you pick up on things faster than I do and that your victim/son isn't as dismayed by your learning curve as my victim/husband was.

 

: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.

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Hi Everyone,

 

Well, today Dad and Mom learned how to do subQ Ig infusions. :emoticons-clap: The nurse walked us through the prepping and put in the first needle. Dad did the second one with no problem. Me.......well......I just looked at that needle (1/2" long) and said "I can't do this." :unsure: They are very fine needles, go straight in all the way, and Gareth said they didn't hurt going in......but.....I just couldn't stick him. Not today, anyways.....maybe next week !!! It took about 1 1/2 hrs for the 50 cc's of fluid to go in the 3 needles and there was no major drop in BP this time. As of this evening, he's had no headache or other side affects.

 

Janey......the nurse told me today that many insurance companies won't pay for weekly infusions because they are *more expensive*. I find that hard to believe since the individual is expected to do them on their own (after a 4 wk learning session) and in their home environment. I suppose the monthly IV's are done in a clinic or hospital setting with a nurse....right? :emoticon-dont-know:

 

Also......Gareth saw his old Rheumatologist, from 2 years ago, on Thurs. He made a fine entrance.....when they called him to go back to the examining room, he stood up, walked two feet, and promptly crashed down. :excl: His BP dropped too fast and they came rushing with the wheelchair. doctor said he does not have Raynauld's if it is his hands and feet turning completely white, then red. That is from the vaso vaso constriction and OH. So.....I get to take that off his list of medical issues. :VeryHappy: She said R's is red, white, and blue....you need all three colors in the fingers and/or toes.

 

You guys are great....thanks for being here!!! :thank-you:

 

Take care, Everyone.

Margaret

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Hi Margaret,

 

Thanks for letting us know about Gareth's subQ Ig infusion.

 

It must be difficult inserting the needle into someone else; I've had to inject myself and I've injected the horses and dogs on various occasions, but I've never actually injected another human!! It must be much worse putting a needle in another person than in yourself, although I have no fear of needles or injections (just as well with the number of blood tests I've had....the human dartboard!! ;))

 

Poor Gareth; I hope he's recovered from his crashing faint now. I'm so pleased to hear that he didn't seem to suffer any side effects from the infusion and I do hope that it is as successful next time and that they do help him a lot.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Everyone,

 

I did it....I stuck my kid!!! :lol: Gareth never even flinched -- he just looked at me like I was nuts!!! :rolleyes: Like last week, it took 1 1/2 hrs and he did just fine. The nurse will come next week, and then, we're on our own. He saw the Immunologist today, too, and he said it will take almost 6 weeks for the body to build up immunity. He will have blood work done at that time to see if his levels of IgG have risen. I'll keep you all posted.

 

:thank-you-2:

Margaret

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