IVIG TRANSFUSIONS

[grammy2many]

My MS Specialist/Neuro has been recommending IVIG transfusions saying that he has several patients have had improvement. If this is a new term for you, it involves transfusing "scrubbed-cleaned platelets" to replace my own, with the idea of turning down the autoimmune response.

Has anybody had this treatment or know anything good or bad about it?

[Marco]

My MS Specialist/Neuro has been recommending IVIG transfusions saying that he has several patients have had improvement. If this is a new term for you, it involves transfusing "scrubbed-cleaned platelets" to replace my own, with the idea of turning down the autoimmune response.

Has anybody had this treatment or know anything good or bad about it?

IVIg = IV for Intravenous (delivery mechanism) + Ig for Immunoglobulins

IVIg is used to treat patients with compromised immune systems and do not create enough antibodies. Patients with insufficient antibodies are more prone to getting infections others would be able to fight off.

Immunoglobulins are created by white blood cells when your immune system is activated.
- something triggers your immune system
- white blood cells are activated to fight the trigger (antigen)
- white blood cells secrete a particular protein (immunoglobulin)

Immunoglobulins are extracted from 1000s of blood donors condensed and then given via IV. Exactly how IVIg works is subject to debate, but the increase in antibody production seems to normalize your immune system.

Multiple Sclerosis
IVIg testing on Multiple Sclerosis(MS) patients has not been extensive. The effectiveness of IVIg for both RRMS and PPMS/SPMS patients is debated. IVIg is not FDA approved for the treatment of MS so is limited to "off-label" uses.
IVIg treatment for MS should be limited to very specific cases where other traditional treatments have failed. Due to the high expensive (approximately $120,000 annually in the US), insurance companies are unlikely to approve IVIg except under very specific situations.


I have done IVIG as have a number of members of MSWorld. Most people do rather well on IVIG. When I would go to the infusion center there were HAPPY people hooked up to IVs getting their "superman juice." Some people have a hard time dealing with side effects and those need to be handled on an individual basis.

I wish I tolerated it better myself, but I struggle with a lot of medicines. Even with significant side effects, I will be restarting IVIG therapy later this month.

To reduce common side effects your infusion center may try:

- a lower first dose to see how you respond
- hydrate, hydrate, hydrate
- the infusion rate can be slowed down
- most centers will give you a drug regimen to follow (benadryl, nsaid or something)
- given additional IV fluids and/or steroids during your run


Please keep in mind that starting IVIG is starting a PROCESS. It may take several weeks or several months before any benefits are realized. You will need to spend hours and hours in an infusion center. You may feel like a train hit you for a day or two or 10 afterwards. It may be expensive for you .... etc, etc.

So why even consider it???

Because IVIG is one of the FEW treatments we have that can actually help us feel better. More energy, improved cognitive ability, fewer MS symptoms. I felt like years younger and could do things I had not done in quite a while.

Talk to your neurologist, talk to other patients. Read up about IVIG. It isn't a treatment to be taken lightly, but how many times do you walk into a room and find HAPPY patients because they are getting their treatment.

[Ga dancer]

We are all different, and it seems particularly true in MS where we are more different in function and ability than alike. However, IVIG is liquid gold and gave me my life back. At the time, I was so very sick and didn't care about side effects, I just wanted to feel better. It did a lot more than that for me.

I had non-stop sinus infections along with every MS symptom - I quickly deteriorated to a wheelchair. The infections never seemed to clear, only abated with oral and IV antibiotics and steroids. I was given the IVIG for the infections but initially helped my MS symptoms more than infections.

I had an infusion once a month for 18 months, climbed out of the wheelchair and returned to the dance floor with my husband. I also do water aerobics 3 X a week and even Zumba classes on occasion.

A gentleman in our Sunday School class with Myasthenia Gravis who was sent home on hospice, could not lift his head or swallow. They gave him IVIG before throwing in the towel completely and he has been playing 18 holes of golf every day (except Sat. & Sun. because he wants those who have to work to have the course). Every day - 18 holes!

May God bless and keep you safe.

[grammy2many]

IVIG

I'm so sorry I haven't thanked you for your responses to my inquiry. Your responses did seem really optimistic so I'll be looking forward to my January appt to see if insurance approved or not. Were either of you able to get insurance to pay?

[Ga dancer]

My treatment was covered 100% by Medicare plus my supplemental policy. It is a blood product so it should be covered, but very expensive ($30,000 per infusion).

I had a monthly infusion for approximately 18 months, and I am still dancing! They had to stop because my liver enzymes became elevated. No infusions since mid 2011 and still doing well. I am no longer on any DMD, they only screwed up my immune system and put me in a wheelchair in just 5 years.

I give God the glory, and I wish I could honor Him in the manner that is pleasing. May you all be blessed in the coming year.