IVIG

I wrote about the K vitamins a few weeks ago. Sandi I think suggested that it probably wasn't the right way to go. Today I went to my hematologist, and my platelets were 2000. That is the lowest that I have ever had. I feel fine, and I am insisting that he send my blood work out to a lab. In the mean time, if it comes back the same way he wants to do 3 days of IVIG. I had never been treated with anything before except steroids when first diagnosed many years ago. I always have taken the wait and watch approach. Tonight I read about Papaya Leaf Extract. That seems like a much less invasive way to go for me, but I might not have a choice. Could someone tell me a little about how the IVIG feels when being administered, and the results they might have had. I really appreciate any info that someone could give. I think I live in complete denial, because I have other auto immune diseases as well that I try to just live with. Thanks so much, I am a little scared. Jane

Jane - did you ask the doctor about Vitamin K? I'd go by what he says.

Why IVIG? Just curious.

Yes. I asked him about the Vitamin K, and he felt that it probably wouldn't help, but he felt that my body would eliminate any extra K I didn't need. I am just taking K2 at night with my calcium, magnesium and D3. I think he chose IVIG, because he knows I won't take Retuxan, and it would get me out of immediate trouble. I know it is only a temporary fix, and am hoping that when they rerun my blood work, that it all won't be necessary. I read the info on Papaya Leaf Extract, and that sounded like a good thing to try as I have digestive issues as well. I was recently diagnosed with Crohns, confined to my illeum.I also have Gastro Paresis. I have had Firbromyalgia for many years now as well, but most of the time I feel pretty good. Can you give me an opinion or info about the IVIG experience?

Hi there,

I have had 2 ivig infusions. The 1st one my counts were 1500 and I was bleeding out so they gave me two days of it. I was fine after day one, but day two by the end of the infusion I had a horrible headache which got worse, the next day I ended up back in emerg, vomiting etc..

I had another infusion 2 weeks ago and it was great. only 1 day, 70ml's they gave it to me really slow, I guess thats the key to no headache I was told. I was home by noon. A bit of a headache through the afternoon and evening which Tylenol controlled and I was fine the next day and went to work.

I would do it again for sure, but only one day for me

Hope this helps

Bev

Thanks so much Bev. I missed a call from my doctor's office and the message said to repeat a CBC tomorrow. Maybe it was a mistake! Either way I appreciate your input, so I know what to expect.

In the past I have had IVIG and had good time periods of between a year to two years upto five years on two accounts of IVIG since 1994.

My current consultant doesn't like to give it because he says the text book tells him that it only last a month. Hmm. My body hasn't read the text book then:P Or may be it has more recently because I was given it again in July and it hardly lasted a week that time but that has been the only time it hadn't lasted longer than a year +.

So in answer to your question what does it feel like?
It is given intraveneously and at first I used to have it overnight for whatever reason. It be started around 8 or 9 pm and as I would have five bottles a night it go through most of the night. Making it very difficult for me to sleep. Not because of the actual drug but am a light sleeper in hospitals and any nurse etc who walk past I be awake instantly.

Its a clear fluid - one nurse years ago called it champaign bubbles because the bubbles go up in the bottle and yes the name has stuck with me.

They will flush the viens first with either a salin (salt solution) mix injecting it into the canilla (intravenous drip) or they attach a bag. Then they start the IVIG and each time they are to code in the mathmatics which seems very complicated especially when they not done it before.

Last time I had IVIG in July I experienced mild chills and reported them. That evening by 9 pm I was wizzed down to xray to ensure it was IVIG reaction. They also done a blood culture. The mild chill did not keep me awake. In fact the ride down to xray seem to sort it out in an odd way for whatever reason.

I wont lie to you because in the past I have had varying issues from temp just going up that little point to anemia issues. I do not know if the anemia was due to IVIG or to that my platelets dropped very low. I was lathergic and whenever went to the loo I bled. On the last day I received a full blood transfusion and everything was okay after that.

Most of the time you possibly wont feel much. Just the awkwardness of being attached to a drip machine and going to the loo etc with it especailly if the needle is er in the wrong hand. But you will get by. I have an electronic one which beeps every now and then inferiating other patients especially over night. Thankfully this time my first treatment was evening I went in and the rest was day time which is when I prefer to have it as allows me to sleep over night that bit better.

I think you will find the whole drip stand thing more awkward than the effects of the treatment. But we all vary and I wouldn't want to promise you anything.

When are you due to have it? Oh, It seems to make me want to go to the loo or is that psychological because am tied to a drip stand thing?

Just take each minute as it happens and try not to worry too much. If anything happens they are with you right away and wont leave you to deal with it yourself. Take something enjoyable to read - lighthearted.

Thanks so much for your response, and all the details I could possibly want. I just came back from my third CBC. The first one came back at 2000, and I didn't believe it. The second one was 11,000, and then they decided to do a third which I still haven't gotten the result from but it has only been an hour. I have been very laid back about my condition for so many years. I do Hospice volunteer work, which is basically leading people to the end of their life with dignity, so that keeps things in perspective for me. I know ITP can be dangerous for many reasons, but I try not to think about it. This last blood test will determine if I need the IVIG or not. Your information has made it much easier for me to accept the treatment if I have to.
Thanks again, Jane:unsure:

Good luck with the count, Jane. I don't quite get why the doctor would suggest a rescue treatment that might not last long when you've already gone days with low counts (as far as you know).

Let us know!

Thanks Sandi! It is now the morning after, and I still haven't heard. I would think if the count was dramatically low still, I would have gotten a call already. I am keeping my fingers crossed! I'll will keep you posted..