It is two weeks past from my first injection and I do not feel any changes at all. I am not sure if the second injection would help at all?
Did anyone got any help from the second injection if the first one did not help?
Thanks

You have to give it time...months. IVIG is NOT an instant fix-all. If it was, then insurances would be more willing to give people one infusion to see if it works...but they don't, because it can take months to notice any change.

Hi All...
I just finished this week with my initial load of 150g of Gamunex IVIG over 5 days...30g a day. All went well...tolerated pretty good...bad headache on the 4th along with muscle pain...and mild headache on the 5th...also I have had some nausea after eating...but that is about it.

I felt real good after day one and two...seemed like the PN was real mild...but that was prob coincidence since the pain came back near the end of the treatment. And Like EB said (and my doc too) that it will take 3 to 4 months till we see any efficacy...hope it works and knocks some pain down...talked to one of the nurses and said they just had an individual in the infusion unit that said it helped her PN alot...but don't know the diagnosis or circumstances.

jake: EB is right you need to get a dose that is for your specific issue and you need to give it time...also did you get Gamunex...the nurse at my center said that is the best stuff on the market...but I can't back that up with any studies...so I am taking her word.

I see my doc in a few weeks...I guess my WBC before the IVIG was real low...and she wants it retested...anyone else have any WBC count issues with PN...is there a link there?

Anyway keep the fight...sven

Keep the good fight going...

Just wanted to comment on the WBC issue. Mine is low too, whereas it wasn't before my illness. There's a link between low WBC and autoimmunity. This might be useful: Wbc. I've been hovering between 3.5 and 4.5, and 4 is the lowest end of normal. I may still have a bone marrow biopsy done, if it stays low. Hope that's somewhat useful. And I hope the best for you with the new treatment!

HI Sven,
Mine was Flamagaba, the issue is mine was diagnosed by Immunologiest for immune deficiency. The insurance I do not think would approve more than 40 gram per month for this purpose. You said you do not show any auto immune issue, how did insurance agreed with this dosage please? May I ask the name of your doctor please.
Thanks

Just thought I'd post my a few of my blood test results that I had prior to IVIG...also I had a low Imuniglobulin A...

White Blood Cell Count 2.8 10*9/L 4.0 - 11.1 10*9/L
Red Blood Cell Count 4.87 10*12/L 4.76 - 6.09 10*12/L
Hemoglobin 14.6 g/dL 14.3 - 18.1 g/dL
Hematocrit 44.3 % 39.2 - 50.2 %
Mean Corpuscular Volume 91.0 fL 80.0 - 100.0 fL
Mean Corpuscular Hemoglobin 30.0 pg 27.5 - 35.1 pg
Mean Corpuscular Hemoglobin Concentration 33.0 g/dL 32.0 - 36.0 g/dL
Platelet Count 181 10*9/L 150 - 400 10*9/L
Mean Platelet Volume 10.3 fL 9.6 - 12.8 fL

Thx for the link David...good info.

I notice a lot of these values are borderline...and WBC pretty low...I get retested on Wednesday. Should I ask for anything else that may help in figuring what is going on? If anyone has any comment I would appreciate it.

Jake: My doc is Ralph Round in Denver...great guy...and I asked why they approved IVIG after it was denied the first time...he said he had no idea...go figure...when I get more info I will post.

Sven

Neutrophils Absolute 1.3 10*9/L 1.8 - 6.6 10*9/L

that is low too...

Hi Sven,

Well, I would certainly see a hematologist, if you already haven't. That's what I did. At least your WBC and neutrophil count are low, lower than mine were. At it's lowest my numbers were something like 3.4 and 1.9 respectively. I'd also keep an eye on it and repeat tests. One low test may mean nothing, but two or three indicates a pattern. I had several done over many months and it was getting worse. Now they seem to hover around 3.5-4.5 and 2 respectively. Hope that's useful.

Speaking of the steroid infusion...in hind sight I think if I had a high dose M prednisone in the first few weeks of the onset...I would be doing better and maybe more of us would be leading more pain free lives...but the first neuro I visited just said...its just stress and it will go away instead of taking immediate action. It just seems like they are afraid to act...why? There was no deep concern or urgency...it should be "OH S%&T!...these symptoms he is explaining to me can cause CHRONIC pain...I better get him on some type of inflammatory control protocol." This is what should happen when people show up at Neuro offices complaining of these symptoms. I am sorry...I am venting a bit.

Sven[/QUOTE]

Hi Sven, if it makes you feel any better- I was started on prednisone and developed Cushings Syndrome as a side affect from the prednisone. It was horrific and taken over 2 years to semi-recover from it. I was wishing they had tried a strong pain Med treatment first! Although prednisone was thee only thing tried that helped the excruciating foot pain it made such a mess of me in other ways I that I still struggle with. I'm very interested to know if the IVIG helps so please do keep us posted. And if anyone reading this comes across any medical journal articles discussing IVIG as a treatment please post link for me as I would like to print for my Drs. Thanks. I hope we all find pain relief but more importantly root causes to disease modify if possible!

Hi Still Hoping...thx for the info...yes...I guess I wolud have liked at least a short course of steroids...it would have been at least something. I would have taken the risk.

About IVIG...I think it has helped...I feel better but I'd say I'm not 100 percent. I have another course this week...same dose...150 Gamunex...but over 2 days.

Now if I feel even better after this I will feel more confident about speaking of its help...you prob know this already but there is a study going on in the Netherlands with IVIG for SFN.

I'll keep everyone posted.

Cheers to better health and quality of life.

Sven