Looking for someone who has tried IVIG

[lisa1014]

My allergist who is also an immunologist is suggesting I try IVIG. He says people with MS are using it and it is helping. My questions is how does it work, what does it feel like, and are people really using it for MS?

I guess I am just a bit skeptical I am not sure about putting other peoples body fluid in me and also I already take so many meds do I really want to add one more thing.

Any input is appreciated.

[MSer102]

IVIG helps SOME people with MS. It didn't do a thing for me! Um, is your allergist the best doctor to be talking to you about MS? What does your neuro say? Shouldn't your allergist be talking to your neuro about suggesting MS treatments?

[lisa1014]

I would never do it without talking to my neuro first. I have an appt the first week of April with him. My allergist is also an immunologist so IVIG is something he specializes in that is why he suggested it, he is doing it for others with MS. Also he had me go for blood work because he believes is will help with my never ending sinus infections.

[polopuppy]

I use IVIG but I am in limbo. I had a MS diagnosis for about a year and was treated with Copaxone. My MS diagnosis was then revoked while my neuros tried to figure out what I actually had.

I still have no idea what I have or don't have but I was having too many relapses of "something" so we decided to use the IVIG. It was a big decision and it took me a year of careful research before I agreed to take it.

First and foremost, it is a blood product and each dose contains the immune cells of hundreds to thousands of donors. The IVIG is screened and scrubbed but there is still a chance of contracting a blood borne illness.

The IVIG is expensive and many insurance companies will fight like crazy to not pay for it. It is given by IV, at an infusion center or by a home health nurse which adds to the cost. Blood work needs to be monitored on a monthly basis as the IVIG can affect the liver, the kidneys and the blood counts.

My initial dosing was once a day for 5 days and now I get it once a month. This is different for different patients though. My infusions take 6-12 hours to infuse due to bad reactions. There can be many side effects and I have had them all.

Other illnesses or diagnoses can increase your risk factors for serious side effects such as stroke, blood clots and even heart attack from the IVIG.

There is a great on-line community called IG Living that has many resources for those getting IVIG for different diseases. They have a site on Facebook too which is I.G. Living. There was a recent discussion about side effects that patients regularly experience, to give you a better idea what you could expect. Many of these patients are treated for immune deficiency issues.

The IVIG has definitely helped me but then, I don't know what it is I have. I do have a demyelinating disease, with brain and brain stem lesions but it is not called MS, at this time. I was having relapses every 3-6 months prior to the IVIG and I just went 21 months until my most recent one in December.

I am thankful for the opportunity to have the IVIG and the 21 months of stability. It is important that you do your research, consult with all of your physicians and make sure they are all on board before you make a decision. All the best.

[Marco]

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.

[MSLazarus]

I used IVIg for 8 wonderful years

1. I received 70g every other week. For. 8 years I had 7 hour infusions every other Monday.

2. I would shuffle into the infusion and be skipping by the time I left.

3. As long as I had Benadryl and some steroid per meds I had no reaction. I think there was a slight headache but the benefit I got was magnificent.

4. IVIg is a natural product in that they take blood from a thousand donors and spin it around and around taking out what they infuse. What you get is a clear liquid. At the time I could have fed you more details about how it works but...

5.After 8 years it stopped working for me and I moved on to Novantrone and now rituxan.

6.The amount I took is larger than most people get. It was very expensive (about $70,000.00 a month) but the price varied a bit based on supply.

7. While I was using this medicine I was able to keep farming in a limited capacity but I still farmed. I did not, however, continue teaching. I could tell when the next infusion was due because the benefits wore off. Still, it was just wonderful for my MS.
Linda

[shalimar]

IVig

I was part of the clinical trial done at Mayo Clinic about 15 years ago and they were trying to find something that would give a ms person some strength. It was double blinded and we didn't find out til it was over who got the real thing. I knew after a few weeks that I was getting the real stuff because I felt so good, but months after the trial was over I got a letter from Mayo saying they were discontinuing the trial as it didn't show any benefit. I was really disappointed as I felt it helped.

[golfore]

IVIG Tomorrow

I start 5days of IVIG infusions tomorrow throu Friday. My exerbation started early December. It has been relentless.

I was fully mobile and have now very limited use of everything . My arms, legs, my fingers are unusable.

The Neuro has been puzzled as my MRI's fail to show any new activity. He had EMG tests done and based on those results along with the strange symptoms has me scheduled for IVIG.

I can't find much negative info and am optimistic about getting some help.

I have had a slow steady progression with the same/equal problems in both legs, feet, hands, arms. Never anything sudden, just an almost steady drip,drip,drip,,, of progression.

Hope I didn't ramble. I will give update.

[Marco]

Random thoughts:

Hydrate, hydrate, hydrate before during and after.

Ask about pre/post medicating.

Don't plan on doing much the day of and the day after. Give your body a chance to recover.

The first hour the machine should calibrate flow rate, but sometimes they want to hasten the flow rate. Don't let them rush the flow.

If they offer me fluids to begin with I accept them, same with steroids they may want to infuse.

Make a note of the brand of IVIG they are using. If you have bad reactions you can switch brands. If they give you a choice ask for something preservative free to being with.

Consider taking a heating pad in case your arm starts "freezing" during the infusion.

Wear comfortable clothing and take a blanket or layers of clothing that you can remove/don to stay comfortable.

Ensure you will have food provided or take something with you. Where I go they provide food, DVDs + players, WiFi, snacks, drinks, etc.

It's very important that your expectations are set properly for your IVIG therapy. Too often people quit for the wrong reasons. Ask the staff what to expect afterwards and under what conditions you should see medical assistance. Also ask when you should expect to see results.


I wish you well ...

[JerryD]

Marco,
You told us a lot. You didn't say if you were currently taking IVIG. And, more importantly, do you feel that IVIG works for you.
I know a girl who has been getting IVIG for several years. She swears by IVIG treatments. I asked my neurologist about it and he said that he doesn't use it because he sees too many problems with those that do use it. He did not elaborate on those 'problems'. I wonder... Good luck

[golfore]

2 infusions down,,,,, 3 to go.

I haven't been able to do any backflips,,,,,, YET!!

We'll see.

[golfore]

I have completed my 5 infusions of IVIG. I am not feeling much different. (no backflips)

I have read everything I can find about it. I will wait patiently? for something, anything to change.

Effects can happen within days to weeks. I also have spinal stenosis and see a neuro surgeon a week from Wednesday.

[hunterd]

I agree wholeheartedly with everyone that said to hydrate. I had IVIG infusions for a year and half. The biggest benefit I noticed was a substantial increase in energy. My insurance would no longer cover the infusions, and they were cost prohibitive.

[polopuppy]

Dear Golfore,

I was hoping you were going to have a great response to the IVIG. I noticed immediate improvement and so did the medical staff at the infusion center. I could hardly walk when I started my first infusion and by the end of the day, my gait was slightly better. It continued to get better over the 5 days.

Some of my improvements have been much slower and more subtle. My swallowing, double vision and bladder control have gotten better. As each IVIG dose begins to wear off, my symptoms do ramp up.

I will keep my fingers crossed that you begin to see some changes with the IVIG. When are you scheduled for your next dose? Good luck.

[golfore]

Ty for your post, puppie.

I don't know when I might have another IV.

Except for a little energy improvement, I can't say I have felt much change
I am 61, in good shape. How old are you? Did you have 5 day IV?

I am still optimistic. I believe the Dr. I going to put me on a monthly IV. I have read that improvement can be seen months after the treatments.

I will have to wait and see.

Ty for your post!