IVIG anyone?

[gurs]

My doctor has recommended IVIG,  was wondering if anyone had any positive/negative results with it?

thanks!

Gursie

[irish]

gurs, I have been on IVIG for since November 2006. I was on Gammagard 80 grams at first but last October I had a severe allergic reaction which I feel was a blessing in disguise. I was started on a different product in November 2007 and I am now starting to feel better. This product is Gamunex and I get 80 grams every month. It is the best thing that ever happened to me. I know if I hadn't been put on this I would be deteriorating more rapidly.

I am being treated for my Myasthenia gravis but it also helps my low t cells, hashimotos, bullous pemphigoid and hard to tell about the sjogrens. I think the neuro problems with sjogrens and the others(hard to separate the symptoms by disease) but the dryness is another thing. I feel that I am having less mucus. This probably sounds weird to you but I had so much mucus from sinuses and lungs that it was driving me crazy. It is possible that the low t-cells were responsible for some of the mucus membrane issues that I had. I still have the dry eyes, mouth, nose, etc but I am using less Kleenex. It may also be that the weak muscles in my soft palate area are working better. The doc feels that some of my mucus problems are because my myasthenia prevents me fro moving and clearing the mucus out of my nasal passages and lungs.

I am sold on the IVIG. There are some risks, but it seems that the products that have no sugar in them are less apt to cause any kidney issues. With the high dosage that I get I am on a product that has no sugar. I get 4 bottles and it takes me about 6 hours. Good Luck and keep me posted on whats going on. Irish

[denisezesh]

Hi..Irish....I,ve been on IVIG since November 2005...I get 4 bottles,that take 5 hours..I recommend it....I get less severe colds....They are much shorter...Do you take 2 Tylenol & Benadryl 1/2 hour before treatment...Every month....See you denisezesh...

[irish]

denize, I take 100 mgm hydrocortisone IV prior to the first bottle and they do benedryl 25 mgm IV drip in saline at this time also. Between the 2 and 3 bottle I get another 100 mgm hydrocortisone IV.

I don't take the tylenol. I have seldom had a headache. The first product gave me a really severe case of hives and I now have to had more hydrocortisone. So far so good on this product and I think it is doing something now. The first one did a little but I have started to feel much better. Thank goodness for this product.

Do you have low white cells also? I have low t-cells and CD4 cells. They are severely low and for some reason they are working well enough that I haven't died. I still have had a few infections but they are getting less severe and further apart now. irish

[gurs]

Wow, good info from all of you. My sjogrens/Lupus just got way out of control after my Hysterectomy. Im having severe everything...My t-cells are almost non-existant, and my hematologist told me yesterday that I dont have any IGM Immunogobulins. No wonder why I cant get rid of my systemic yeast? He recommened IVIG, but I am leary because now I seem to be having allergic-type reactions to everything. Had a bad reaction to Rituxan last December, but I know my symptoms will only get worse. My neuro issues being the worst.
Irish, thanks for the info on Gamunex. I will bring it up to him. Glad you are doing so much better. Sometimes we need to take the risk I guess.

Gurs

[irish]

gurs, When our immune systems are really out of whack our allergic responses ie with the histamine release goes up dramatically. My doc is awesome with all this stuff. He doesn't get scared of things and seems to understand why the body is doing what it is doing.

The way I understand it is that the IVIG takes a while but it slowly turns the immune system and all its responses around and slows it all down. Meanwhile he medicates as needed to control what the body is doing while this is happening.

One gal that comes to our IVIG infusion clinic sat next to me one day. She itched the whole time. She said that she had myasthenia really bad and had just spent 1 month in the hospital on a ventolator. While she was there she had the plasmaphoresis and IVIG and big time prednisone plus she was on 1000 mgm of benedryl a day just to control the itching she had. Unbelieveable what she has been through. This was her 9th time on a ventolator. I hope I got all this information right as it was so much info on one person I could hardly believe it.

SHe had been started on many new products and always had the severe itching. That day she was sent home with the IV left in place and administered her own IV Benedryl until they came up with another plan.  A couple of months later I asked my nurse about her and she said the gal was started on another product, the itching was gone and she was back to work. Now, many docs would just throw their hands up in the air and give up but my doc just mulls things over in his head and trys things. The bottom line is when our bodies get so out of whack the tried and true medicine doesn't always work and docs have to think outside the box and take some risks. So do the patients. However, my doc talks things over with people and tells them the scoop and lets them make up their own mind.

I would encourage you to go for the IVIG. It works good for many of the neuropathies that can occur. It takes a long time to literally retrain our immune systems and corral all those cells that want to go elsewhere. Another thing my doc does--he only does blood work about once a year. He says we know what you have got and we treat the patient not the blood work. Most doctors would be doing blood work like crazy and spending all your insurance companys and your money. I am so blessed to have been referred to him. I had to go through a lot but it was nothing compared to most of the people who are there. I am just a little drop in the bucket. Also, they told me not to expect a cure. I said if I could be 30-50% better I would be thrilled to death. Go for it and be patient. Good luck. Irish

Also, to avoid those infusion headaches drink plenty of fluids 2 days before, day of and 2 days after the infusion. I have had the flu symptoms by the night of the infusion and usually tylenol and sleep take care of that. Sometimes I am wiped out for a few days after also but I can live with that also.

[denisezesh]

Hello! I have low platelets....After the 2nd bottle I sometimes get backache...I take 2 more Tylenol...I take 2 Benadryl...myself before..I dont like the way the IV Benadryl makes me feel....I get blood work every month before treatment..to check platelets...especially after I,m on Antibotics....So I do think it,s necessary....i have hypogammagobulin anemia....Inherited from my Mom....

[irish]

denize, I should have been more specific about the blood work as I am referring to the ANA, SSa etc. I am sure that he does the other blood work like the platelets etc as that is really important to know on a timely basis.

I get totally stoned on the IV Benedryl and scared the nurse half to death the first IVIG that I had. I can sit there in my recliner and tell her "here it comes" and then I zone out for about 2 hours of sleep. She had never seen anyone do this before. This is why they do mine IV in 100 cc of saline so that I don't get the big rush. irish

[denisezesh]

Irish...I fall asleep also...Time goes by faster.....I get nauseated....