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ldbarnes
12-15-2008, 08:51 PM
I have been on IVIG therapy for 5 years and I have had great results from it and was wondering if anyone else has been using this for SLE. If so have you seen a boost in your energy and relief from lupus pain? I have relief some months. As I tell my family some times it "takes" and sometimes it does not. At first I was hesitant for many reasons the main being the cost but it has definitely given me a large part of my life back.
:lol:

iseedeadmonkeys
12-16-2008, 03:21 AM
Hi and welcome to the forum,

can you tell us abit about it please, im very interested!

x

Danica01
12-16-2008, 06:59 AM
I am also very interested and woul like to hear a bit more about it :D Thanks for joining us and posting :!:

ldbarnes
12-16-2008, 07:32 AM
Immunoglobulins are proteins manufactured in the body that the immune system uses to produce antibodies and various factors, which are used to communicate with immune system cells and modify the immune reaction. The benefit for Lupus suffers comes from reducing activity in overactive immune systems. IVIG therapy has been approved by the FDA in the treatment of SLE and various other systemic autoimmune rheumatological conditions.

It contains the pooled IgG immunoglobulins (antibodies) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. Thus, making it VERY expensive.

I have been on the treatment for a lil over 5 years. At first, I received a treatment every 4 weeks and now I am at every 21 days. The treatment takes about 6 - 8 hours and I do it as out patient cause home health care adds to much additional expense.

Also, I take around 200 mg of Benedryl during the treatment to help with any allergic reactions which I have only had one early on (rashes & welts).

Usually, I have very little reaction other than the next day I will feel like I have a mild case of the flu so a little bed rest (ha ha like I would not be needing it without) and I start feeling the advantages on day 2 - 3.

I truly can feel the positive changes in the treatment. If I have waited a few days beyond my schedule treatment date then my family can even see my pain, weakness, butterfly and all the other yucky side affects of Lupus showing itself.

I still continue with Prednisone 15 mg (hey I lived at 60 - 30 for 7 years) Plaquenil 600 mg, Lyrica 150 mg. Also, pain medication but only as needed which is very limited and of course various meds for asthma. Oh and can not forget various treatments for Osteoporosis (12 broke ribs last year :?

Hope this gave you some info and any additional question please ask. I am so thankful to have found this forum it gives me a peace when I am having one of those long long nights. :)

Danica01
12-16-2008, 07:45 AM
I am so thankful you found this forum too :D That information was great! It actually has me wanting to ask my doctor about it and see if it may actually help me out! If you do not mind me asking, how much does a treatment cost and does insurance cover it? That is always my concern. I am out of work and money is tight but we always make sure my health comes first :wink: Do you just check into to out patient and sit there? Do they make it so you are comfy? I do have another question for you. Did you always have asthma? I just developed a severe case over the last 2 years and the doctors tell me that is one place I am being affected by my Lupus. I was wondering if that is the same with you or if you have had it for a lot onger :wink: Ok, no more questions and again, thank you so much for that information :angel:

iseedeadmonkeys
12-16-2008, 09:00 AM
Hello :D

Thankyou very much for telling us about it, im also going to ask my consultant about it, i wonder if things may be a little diff over here in the uk and weather we can get it on NHS! i will aske though x