IV Ig treatment?

[addicted2harleys]

I have searched the internet about this treatment and now I am coming to all of you for advise and opinions regarding IV Ig treatment.

I have read ren's opinion on this (Thank you!!) and am looking to see what others think.

My neuro wants to put me in the hospital to do this procedure.  I will say that my body has been hijacked by an alien for 2 months now.  I NEED SOME RELIEF.

Neuro said either the IV Ig or high dose SoluMedrol as maintenance.  I don't want to take high doses of steroids for any length of time...it seems like too big a risk.

So, that leaves the IV Ig.  

Anyone?

Thanks,
Addi

[addicted2harleys]

Thank you, Jessica.  I really appreciate hearing from someone who has taken it.  I go to my PCP on Wednesday and plan to talk to him about it then.  

Nice to meet you, too...I don't think I have talked to you yet.

I will probably message you come about Wednesday....

Thanks again,
Addi

[Khiba]

Hi Addi,
I guess I am about the only one here who is currently taking IVIG treatments regularly for MS. My neuro explained it this way. Start with 4 days a week each month for a few months then 3 days a week for another couple then cut down to 2 days twice a month for a few and then (where I am now) 2 days a week a month. Gradually we will try to cut it down to once every 3 months depending on how I do.

She says it reboots the over active immune system and calms things down. I have found it to be pretty easy to tolerate. About a day recovery for each day of the treatment. So for the 2 days I take it, I am down and resting for the next two. Side effect are a slight flu like feeling, without the temp, and fatigue. Suddenly it stops and my energy comes bouncing back nicely. I can tell when its time for the next round as I kind of hit the wall on energy.

I was put on IVIG because I failed Copaxone with allergic reaction and my neuro recommended I not take the interferons since I had breast cancer recently.

I take treatments at an infusion center about 10 miles away and have made some good friends there. Its more of a social event than a chemo experience. LOL

IVIG is given for CIDP, Myasthenia Gravis, Guillian Barre and other autoimmune disorders.

The procedure is I get stuck with needle, get some premeds like Toredol for pain, Zofran for nausea, and Ativan if I am in particularly acute state of agitation. Most folks also get Benedryl to prevent any allergic reaction. I am sensitive to benedryl so I take Atarax when i get home, but never have had any allergic reaction so sometimes I forget the Atarax (hydroxyzine) I usually keep the needle thingy in for both days. They just wrap it up in colorful coban, a self adhesive bandage and off I go.

A lot of people have a port that take it regularly. I probably will need one sooner or later if I continue it regularly.

It is terribly expensive, no doubt about that. My insurance pays well though.

There are several brands of IVIG so if one is too harsh, you can try another brand.

Message me if you have any questions.
Cheers,
Jessica

[addicted2harleys]

Okay I re-read the health page on steroids.  I also went back on the internet and looked there, too.

I know the Solu-Medrol worked for me a year ago when I had a flare/episode.  With this current 2 month flare/whatever, I have been given it twice, but the first time was just a teaser.

Maybe I just need a "real" dose of Solu-Medrol this time?

I go to my PCP on Wednesday  I will discuss with him all that I have learned.  ;0)

Thanks everyone!
Addi

[lmeiser45]

I had my first dose of Solumedrol 2 months after I started on Copaxone.  I had a relapse and couldn't stop tremoring.  The Solumedrol gave me a huge feeling of relief, not to mention I felt like I was on the go, go, go.  I highly recommend not driving.  I was told it was safe to drive, but after reading some other comments out there on the web, I should have listened to them.  I continued to drive... and on my way to the hospital for the 3rd dose, I got into a car accident.  I thought I could go... and had enough time to turn left, and I was side-swiped.  My car was totaled and both cars had to be towed.  Some said I was a little edgy with the steroids, but I didn't notice it. I'm glad I went on the Steroids, I felt 100% better after the 1st dose.  
Good luck to you!
Leah

[Quixotic1]

The risks of short pulses of steroids periodically are far less than tthose of continuous treatment.

Please read the Health Page called "Steroids - Friend and Foe"

If someone was on monthly doses of steroids it would be prudent, though probably not necessary, to consider them partially steroid-dependent and wear a Medic Alert tag to this effect.  The health page describes what that means.

DEXA Scan - bone density scan

baseline - a test done at the beginning of a treatment or procedure, so that if there are questions later you have a result to compare things to.

Q

[addicted2harleys]

What is a baseline DEXA scan?

Also, I was under the impression that the risks were not only osteoporosis, but kidney trouble and a few other things??

Addikins

[Quixotic1]

It's true that there have been concerns in the medical community about the practice (once a month to augment the effect of the DMDs).  But, my Neuro #8 (who was totally brilliant albeit a real cold fish) shared some good info with me that some studies have shown that, in the long run, it was not dangerous - especially with regard to causing osteoporosis.  

All people who face use of steroids, though, should get a baseline DEXA scan - women AND men.  That is important.

Quix

[addicted2harleys]

I don't know exactly.  I remember he said high doses on a regular basis??  

I am perfectly fine with getting periodic high doses SoluMedrol, as I was under the understanding that it was safe.  But, when he mentioned regular basis and high doses, I kinda cringed.  He also said he does not like doing it...I think he said the long term side effects may outweigh the benefit??

Addi

[addicted2harleys]

Thanks, Shell!  I consistently use the search feature on this site.  I typed in IV Ig.  I guess the space made all the difference in the world because I came up with nothing.

Reading that thread gave me some hope, as did reading from the link provided too.  

I feel a little better about going through with the IV Ig treatment.  Space or no space.  lol  The only difference is that my neuro said I will be admitted in the hospital for it....5 days??

I will let you know what happens with it.  

Addi

[Quixotic1]

What does your neuro mean by "maintenance"?  Are you talking about the common practice of giving someone a day a month of either med?  this has been shown to be safe according to a researcher here at Oregon Health Science University who studied it, but has not yet published.

Q

[Quixotic1]

IVIg is not as commonly used in MS, but there is some data that it is useful.

It is hellishly expensive.  Also some insurance will not approve it because less expensive meds are available.

Pulses of Solumedrol are not shown to cause osteoporosis.  There is a huge difference in getting periodic 3 - 7 days courses of high dose meds and in using them continuously.  So, other than the immediate side effects, they offer very little danger.

Quix

[sllowe]

Hi there,

Check out this discussion - though it's from 08, you may find the 1st hand experience a good read.

http://www.medhelp.org/posts/Multiple-Sclerosis/IVIg-Information-for-Interested-MS-Patients/show/439246

To find old posts, don't forget our search feature. To find the above I used "IVIG" because I knew it's come up before. (you can use lower case too)

Let me know how you make out.
-Shell