1. What is IVIG or Intravenous Immune Globulin?
IVIg is a collection of Y shaped antibodies called IgG as shown in the above cartoon.
IVIg is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together. IVIg has proven effective in several immune system disorders, including nearly all autoimmune conditions even CIDP and GBS. The sooner you can treat the patient with IVIg the better the results. There is a window of opportunity usually within the first 18 months during which IVIg administration is ideal. The longer you wait to treat with IVIg the longer it will take for IVIg to work.
After being exposed to toxins and poisonous chemicals including carbon monoxide the body's immune system may mount a attack on the body. This autoimmune attack can be reduced by IVIG.
2. How does IVIG work?
For immune deficiency where the body does not make enough antibodies, IVIG supplies them. For autoimmune disorders like GBS & CIDP, there is a abnormal autoantibody being formed which is inactivated by IVIG.
Patients with autoimmune disorders like CIDP also are deficient in antiidotype antibodies. IVIG has antiidotype antibodies and thus helps improve the patients condition. Antiidotype antibodies are normal antibodies which are produced in the absence of any antigen. They are capable of inactivating many different types of antigens. IVIg has a higher concentration of antiidotype antibodies.
3. How long does it take to a IVIG treatment to have a effect?
After IVIg infusion, patients may see a response in their disease within 24- 48 hours. Some patients will have to wait 3-4 weeks to see an effect after IVIg. In a few no effect may be seen following IVIg infusion. If 4-5 cycles of IVIg do not show any response then try a different approach like plasmapheresis, cytotoxic or immune suppressants. The NIH recommends that if no response is seen with IVIg infusions, then add steroids to the treatment plan.
Everyone is slightly different as it depends on how long has the disease process been going on. The sooner one treats the disease with IVIg the faster the response. No one can predict how a particular patient will respond to IVIg.
4. Why is IVIG so expensive?
IVIg is obtained from plasma, donors are paid then the plasma is sent to a processing centers for mixing, antibody removal, chemical treatment and filtration to remove viruses. This is followed by the products to be freeze dried. All this ends up for IVIG to be priced at $ 48 to $ 68 a gram. A single IVIg infusion costs about $3000 for a child and 10,000 for an adult. For a child the cost of IVIg is low because only a few grams are used. The price of IVIg in India is $25 a gram. In Pakistan IVIg costs 20 a gram. IVIg can be bought from China at 45-10 A Gram.
5. How is IVIG administered?
IVIG is mixed in a bag and a tube runs from it to a vein usually in the arm. The recommended way to infuse IVIg includes a pump. Usually IVIg is given at a rate of 100 cc/ hour to 200 cc/ hour.
The rate is of IVIg is reduced for any problems such as headaches, rash, fatigue, hypertension or hypotension. For an adult's infusion of IVIg is usually given over 5 to 6 hours. Dr Dalakas mentioned in his study that precise control of IVIG infusion is required. Dr Engle at USC recommends a rate of 100cc/hr of a 7.5% solution.
6. What are the common side effects OF IVIG?
Some times patients get a headache after IVIg which is more common in females with a history of Migraines or SLE. Patients may experience fatigue similar to getting a Flu, which is due to antibodies interaction. Some patients get a rash after IVIg and it is recommended they take Benadryl or even steroids to avoid this. Remember their are a lot of antibodies in IVIg and some may result in odd reactions. After IVIg if odd symptoms are seen then use of steroids usually helps. Some people experience changes in blood pressure and others may have a severe headache called aseptic meningitis.
7. How can one reduce the side effects of IVIG?
Remember to drink eight glasses of water a day for hydration before starting the IVIG treatment and continuing this a month after the last IVIg infusion. Also remember to take a baby aspirin to prevent thrombophelebitis after IVIg. Patients need to check with their doctors if they can use aspirin and should not take this if they are on coumadine or have bleeding disorders. Doctors do not recommend that you use this if you have a history of stomach ulcers. Doctors use Premedication to help reduce side effects. Some recommend that one should take Tylenol or other NSAID for prevention of headaches and pains after IVIg. Physicians may use a benadryl capsule for a rash and even to relax during the treatment. Physicians may use low dose prednisone will reduce side effects like headaches.
8. Where is the IVIG treatment given?
IVIg can be given at home, in a doctors clinic or a hospital outpatient unit. Some patients have even taken this at work.
9. What is the frequency of the IVIG treatment given?
Usually a dose of IVIg is 2 grams per kilogram is divided into five doses and 400mg/kg is infused daily for 5 days. (For the first time only) Some patient can tolerate consecutive days of IVIg. It is recommended that young women take this on alternate days.
This is followed by a monthly infusion of IVIG at 400mg/kg.
Dr Dalakas at NIH recommends IVIG at 2g/kg /Month . For use in all autoimmune neurological disorders.
10. What are the differences in brands of IVIG?
Generally the difference is in IVIg is the amount of IgA content and also if the IVIg contains sucrose, glucose or some other sugar. Some IVIg products have Glycine while another one has no preservatives.
Different IVIg products match different patients. In general all the products work about the same.
11. What is a recall OF IVIG?
A recall of IVIg happens when someone reports defects in IVIg, side effects of a particular batch. Then the FDA may issue a warning or a recall of IVIg. This may also depend on contamination of IVIg .
12. Where can I find out about recalls of IVIG?
The FDA in the US maintains a current list of blood-product recalls on its site. This is because its members use so many different types of blood products, and generally store them in quantity. Look under Biologics and then recalls near the middle of page. http://www.fda.gov/cber/recalls.htm
13. Who is a good provider for IVIG?
There are many nationwide providers of IVIG. . Some provide customized service for the patient. They select the correct IVIG for the patient. They manage side effects . Their nurses are well trained. They will also work with you on CO-PAYS and disease management.
Email us for a nationwide IVIG provider.
14. What is the recommended dose of IVIg as compared to age?
Children can tolerate a higher dose of IVIg and the whole 3g/kg dose of IVIg has been given without side effects as a single infusion. Young adults up to 25 years of age can tolerate 1g/kg as a single infusion. Up to age 50 only 400mg /kg is recommended in one day .
When dealing with above 70 year old patients we recommend not to infuse more then 400mg/kg in one week.
15. What is the right IVIG product for me?
Patients need to understand the differences among the IVIg products, and many factors need to be taken into consideration when deciding which IVIG product should be prescribed. Some examples of the factors include:
Patients with congestive heart failure or compromised renal function may fare better if they receive a IVIg product with a low osmolality and low volume;
Patients who are diabetic should receive a IVIg product containing no sugars;
Patients receiving IVIg with sucrose may be at a higher risk for renal failure; (Need adjustment of concentration). Also patients who have Myositis and high myoglobin levels are at higher risk of developing renal failure while on IVIg infusion.
Patients with immunoglobulin A (IgA) deficiencies should only receive products with the lowest amount of IgA or they could have anaphylactic reactions;
Patients with small peripheral vascular access or a tendency toward phlebitis may want to avoid IVIg preparations with a low pH.
16. Who is a good provider for IVIG?
There are many nationwide providers of IVIG. Please contact us for a good one near you.
17. What diseases is IVIG being used for?
Some of the common autoimmune diseases include Alzheimer's, Narcolepsy, Multiple Sclerosis, Heart Disease, Lupus, forms of encephalitis, CIDP, autism, Transverse Myelitis, Brachial neuritis, Fibromyalgia & Chronic Fatigue Syndrome. (studies are available which show IVIg is effective in these conditions). If you need more info then go the the main page of IVIg on the CIDPUSA web site There you will find links to other pages providing all the details of IVIg.
18. What is a alternative to IVIg?
If you cannot get IVIg there are alternatives available, colostrum is a natural product which also contains IgG and antibodies, the best colostrum would be freshly obtained liquid. Weaker forms will be the powder forms.
19. Can infections be transferred from IVIG?
IVIG has been involved in the spread of some cases, then FDA took steps to and IVIg producers followed instructions and No further cases of Infection have been reported since the year 2000.
20. Can a cold vial of IVIg be infused in a patient ?
Yes this is often done but cold IVIg infusion can causes problems, like blocked IVIg filters, more IVIg reactions, it is best to give IVIg at body temperature.
21. What diseases is IVIG approved for use by FDA, (MEANS YOUR INSURANCE CANNOT DENY THIS IVIG TREATMENT)
the US Food and Drug Administration has approved the use of IVIG for the following 6 conditions:
Primary immunodeficiencies IVIg is approved by FDA
Immune-mediated thrombocytopenia IVIg is approved by FDA
Kawasaki disease IVIg is approved by FDA
Hematopoietic stem cell transplantation in patients older than 20 years (Gamimune-N only) IVIg is approved by FDA
Chronic B-cell lymphocytic leukemia IVIg is approved by FDA
Pediatric HIV type 1 infection IVIg is approved by FDA.
Friday, June 24, 2011
I’m finished the drip and I’m feeling really good.
I will be on
a Steroid IV Drip at home for the next three days starting 06/21/2011, this should help with the rejection. I will keep you all posted as to how I’m doing and if not me my sister Virginia. As of today 06/23/2011 I’m finished the drip and I’m feeling really good. Dr. Lee was happy to see the numbers were up in my Spirometer test scores were in good range. He put me back on Cellcept or the name Mycophenolate 500mg twice a day this pill helps to prevent rejection. Also my doctors’ visits are now every three weeks now. Also we will be starting back with IVIG Drip next month, LIVIg is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together. IVIg has proven effective in several immune system disorders, including nearly all autoimmune conditions even CIDP and GBS. The sooner you can treat the patient with IVIg the better the results. There is a window of opportunity usually within the first 18 months during which IVIg administration is ideal. The longer you wait to treat with IVIg the longer it will take for IVIg to work. After being exposed to toxins and poisonous chemicals including carbon monoxide the body's immune system may mount an attack on the body. This autoimmune attack can be reduced by IVIG. Last month I broke out into a an allergy reaction Dr. Lee then put a stop to all the next treatments , so I spoke to Dr.Lee and told him I did take my Benadryl or an aspirin before the treatment until twenty minutes in the drip which I took reasonability for that mistake. So now will continue next month as schedule for the next seven months.Thank you Dr.Lee.
a Steroid IV Drip at home for the next three days starting 06/21/2011, this should help with the rejection. I will keep you all posted as to how I’m doing and if not me my sister Virginia. As of today 06/23/2011 I’m finished the drip and I’m feeling really good. Dr. Lee was happy to see the numbers were up in my Spirometer test scores were in good range. He put me back on Cellcept or the name Mycophenolate 500mg twice a day this pill helps to prevent rejection. Also my doctors’ visits are now every three weeks now. Also we will be starting back with IVIG Drip next month, LIVIg is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together. IVIg has proven effective in several immune system disorders, including nearly all autoimmune conditions even CIDP and GBS. The sooner you can treat the patient with IVIg the better the results. There is a window of opportunity usually within the first 18 months during which IVIg administration is ideal. The longer you wait to treat with IVIg the longer it will take for IVIg to work. After being exposed to toxins and poisonous chemicals including carbon monoxide the body's immune system may mount an attack on the body. This autoimmune attack can be reduced by IVIG. Last month I broke out into a an allergy reaction Dr. Lee then put a stop to all the next treatments , so I spoke to Dr.Lee and told him I did take my Benadryl or an aspirin before the treatment until twenty minutes in the drip which I took reasonability for that mistake. So now will continue next month as schedule for the next seven months.Thank you Dr.Lee.
Monday, June 20, 2011
A Small set back
The two main complications of transplant surgery are organ rejection and infection. So what that means is on a scale from 0 to 4, I’m at a 2 for rejection. Since my body recognizes the new lung as a foreign object, it will normally try to get rid of it or "reject" it. Anti-rejection drugs taken after surgery help prevent a rejection episode, but they also inhibit part of the immune system. Since the body's ability to fight infection is decreased, transplant recipients are more prone to infections. Starting Tuesday, Wednesday & Thursday I will be on Solumedrol 1000mg a Steroid IV Drip at home, this should help with the rejection. I will keep you all posted as to how I’m doing and if not me my sister Virginia.
Saturday, June 18, 2011
Fathers Day!!!
Father's Day is a day of commemoration and celebration of Dad. It’s a day to not only honor your Dad, but all men who have acted as a father figure in your life - whether as Stepfathers, Uncles, Grandfathers, or "Big Brothers." So make sure to call him or send a card or even cook for him after all he is your father or take him out for the day to a movie and yes even fishing. Always remember you have only one father. Enjoy the time you have with your Father after all he is your only Father. And here is to my Dad Happy Fathers Day.
Father's Day is celebrated in the US on Sunday, June 19, 2011. Other Countries celebrate throughout the year.
The Cost
The average cost for a double-lung transplant, in which both of the patient's original lungs are replaced with the donor lungs, is about $650,000. In addition to the initial costs of lung transplant, patients also incur annual costs for follow-up care. In addition to the initial costs of lung transplant surgery, patients also incur annual costs for follow-up care and prescription medications. The immunosuppressive drugs, which are required on an on-going basis to prevent the transplant recipient's body from rejecting the donor lung or lungs, can cost up to $30,000 per year. Lung transplant recipients also incur the cost of follow-up doctor's visits and tests to make sure the transplant is working correctly, and to continue to treat any related or underlying
Medical costs include:
insurance deductibles Medical costs include:
insurance co-pays
pre-transplant evaluation and testing
surgery
fees for the recovery of the organ from the donor
follow-up care and testing
additional hospital stays for complications
fees for surgeons, physicians, radiologist, anesthesiologist and recurrent lab testing
anti-rejection and other drugs, which can easily exceed $2,500 per month
rehabilitation
Non-Medical
Friday, June 10, 2011
It's been Four months since my Lung Transplant.
My Lung Transplant Success Story
Richard Berry, who received a double-lung transplant at Penn Medicine in February 2011, shares his thoughts and experiences about his surgery.
I received a great birthday present this year: a double-lung transplant at the Hospital of the University of Pennsylvania on February 11, 2011.
Every day, I am thankful to the donor’s family for giving me this second chance at life. I’m getting better and stronger each day, but like any long and rough path to recovery, there have been a few bumps in the road.
Since my surgery I have lost 47 pounds. I'm down to about 26 pills a day from the 35 pills per day with which I started. As of today, I’m breathing 97 to 100 percent room air without any supplemental oxygen. I’ve even joined a gym and go a few days a week to keep the weight off and build my muscles back up.
It’s amazing to be able to breathe without feeling exhausted. Before the surgery, I was using almost four liters of oxygen a day and could hardly walk. I had to quit working and I stopped going out. I went to a wedding once and had to leave the reception early because I ran out of oxygen and felt like I couldn't catch my breath. I panicked at the thought of not being able to breathe without the oxygen — it was so much a part of me.
Since my double-lung transplant at Penn, I no longer need the oxygen tanks to breathe. I don’t even have any oxygen machines in my home anymore. When I did my first lung capacity tests after the transplant I almost cried. It took so little effort.
Along with the physical aspects of my illness, I also had to deal with the emotional issues faced by many people who have transplant surgery. I think it was harder to find a friend when I was ill. The minute I told someone I had COPD or that I was having transplant surgery, I never heard from them again. That really hurt me.
Today, I tell everyone how great my experience was at Penn. I spent three months in and out of the Hospital of the University of Pennsylvania, in the intensive care unit and rehabilitation center. I’m so grateful for every opportunity I have been given. Penn’s multidisciplinary approach to transplant means all departments interact with each other, working together as my care team.
I couldn't have done this without my friends and family to support me and my faith to get me through each day. And I can't say enough about my transplant doctors and the team at the Hospital of the University of Pennsylvania who provided excellent care and gave me my life back.
If someone were to ask me if I had to go through this again would I? My reply would be: "You bet your sweet bottom I would!"
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