Yet, my 3rd autoimmune diagnosis...

Hi all,

Know I havent been here for awhile...dont know if it is right to pop in when i only have a question these days. But, always been a great place to learn lots for me.  So, just diagnosed with something I really dont understand fully yet.  The question is about the treatment strongly suggested for me.  I guess I have a severly low number...here is what it is called, if anyone knows anything about it.

http://en.wikipedia.org/wiki/Common_variable_immunodeficiency

So, the med is IVIG, an infusion once a month.  Sounds very simiiar to tysabri..

Somewhere along the line, I think this used to be used as an MS therapy med?  Does anyone know this queston? I have tried to find this info...but want a more "personal" version.

Any thoughts?  Thanks.
Michelle

[SarahL2491]

I heard someone talking about it lately but wasn't really paying attention, the IVIG just popping up!

Here is a US site that is pretty good.

kabafusion.com/IVIG-uses.html

I am sure someone will pop in here with some help. if no one pops in after a while, bump your page up to the top of the list again.  This time of year its pretty busy at home and I notice not as many posting replies happen.

You've had your time of it, 3 ?  wow.  Wishing you the very best.  

[Doll555]

I have tried ivig for my ms. It was within the last couple years.
I had a mild reaction to it, just a bad headache. My neuro decided there were better choices for me.
It was the most expensive treatment I had. The bill was $42000! My co-payment was $1200. That was too much money for me to pay monthly.
I am happy to be on tysabri now.
Sorry to hear about the additional diagnosis.

[summerluvr]

have you had frequent infections? You immune system responds to infections (virus, bacterias etc) by producinng antibodies that go out and attack these.  these antibiodies are in the protein / plasma part of your blood. If you are immune deficient you do not make enough antibodies, thus your body can not fight infections. the antiobodies are in a few groups, IGG, IGA, IGM, IGD. IGE  (IGG at the most common). So it sounds like you are deficient in the IGG which is called Hypogammaglobulinemia.  

THe treatment of IVIG means you will be recieve Intra venous Immunoglobulin.  This is like a blood transfusion, accept it is plasma not red blood cells.  


The reason I know this is my cancer (Multiple Myeloma) is a cancer of the plasma cells. In my case the clonal cell was an IGG antibodies, so insted of being low, mine was sky high. but the problem with MM is that the clonal cell is not a functioning antibody so it ends up crowding out all the other good ones so it impairs the immune system and you end up deficient. IVIG treatments are also used in MM.

[michelleric]

Thanks all.  Summer, nice to see you again.  I hope things are going ok for you these days.  You are EXACTLY correct.  I have exactly what you said, and yes, i have and do suffer from very frequent infections...always have.  Mostly respitory, although i have a hard time fighting most things.

My pulmonologist referred me to an allergist/immunologist.  He worked me up for lots.  He things my "asthma" issues will fade once we get my numbers in the normal range. I will hopefully, fingers crossed, be ablt to get ride of my asthma meds.

He also feels I will have more energy among other things when the number is more normal.

I called my neuro this morning, and asked about IVIG.  She called me back about an hour later (love my neuro), who is very happy about me on this med.  Apparently she does use this for some MS patients, but not a 1st choice, due to the cost.  So,nreally killing 2 birds with one stone, so to speak.

I am glad I kept this appointment with the immunologist.  I really thought it would be a rather pointless visit.

Neuro said, IVIG, might be a great choice for me, and I wouldnt have to go on the BG12 she has been waiting for to come out.  Right now, I am not on any DMD. So, all good.  Had too many respitory, voice infections from the tysabri.

Funny how things work out sometimes,

Michelle

[summerluvr]

I hope the IVIG turns out to be good against your MS, that would be a blessing in a wierd  way, since you can't take the other DMD drugs, at least you will be taking something!  

I'm doing pretty good I think.  I live with some degree of immun deficiency myself, but not enough to go on IVIG yet.  My immune system was wiped out from my stem cell transplant but it is back to about 75%.  I had a round of ear infections in October (I get alot of) and just got over bronchitis in November.  

My next follow up is in January.  I get aches and pains but I never know if it is old damage from the MM or if I should worry it is new stuff.  (MM causes bone damage)

I get some ups and downs on my blood work, enough to know the Myeloma is there, but then things will quiet down so I haven't had to go back on treatment.  That's the weird thing with MM you know it is always there since they can't cure it, but you hope to keep in under control

I heard someone describe it like a game of kick the can, you hope to kick it way out in front but sometimes you catch up to it and need to kick it again

[Guitar_grrrl]

Michelle, good to see you!  I'm not on the boards nearly enough, but it's always comforting to see familiar folks.

Good luck with the IVIg infusions.  As well as dealing with your immune issues (I'm so sorry!), it may give MS a run for it's money, too.  I know Marc, the "Wheelchair Kamikaze" is using it too, with some (limited) good results.

Hugs,
Lisa

[Lulu54]

IVIG therapy is a regular at the  infusion clinic at OSU - lots of people in chairs getting it while I am doing my Tysabri.  I don't interact with them though because I am always busy talking with Huff (remember him?). We time our infusions for the same dates and catch up on each other's news.  

I have read good things about IVIG therapy - hate to hear you are facing another problem, though.

hugs,
Laura

[BOK2Bjan]

Hi - I have had many IVIG infusions - logged many hours and days in beds and recliners.  I have MS and many other autoimmune diseases and also had abnormally low IGG ( 2 of the subtypes) so had to get them.  We were hoping it would help with my type 1 diabetes as well as the ms and systemic sclerosis.  I have to say that my diabetes did get less fractious.  I can't take any of the DMARDS so I always hope I can do something to slow things down.

One of the hospitals I used to go to stopped allowing me to get the IVIG treatments there due to cost.  It is so expensive.  My levels did go up to normal after several treatments though.

Wish you well, Jan

[Sailorsong]

I've don't think I've seen you around in a coons age!

Sorry that you are up to 3 autoimmune problems but glad that at least the medication helps more than one thing.

I'm in the same boat as you (Rheumatoid Arthritis, Sjogren's Syndrome, & MS) and like you I just found out that some of my medications are helping more than one thing.  The medications I take for MS are also helping to keep the arthritis under control.

Dennis

[michelleric]

Thx all...@ summer...I hope you get good news in january. You have certainly been through so much.  Thinking of you xo

(((GG))), thank you for having me look up the wheelchair kamikaze!  What a fantastic site.  So much to check out.  Hope everything is going well with you!

lu, they are getting IVIG for MS? So strange i didnt know this before.  I dont know any one it. Is it because the cost is so high?  By the way, you recovering ok?  I hope o

Jan, r u no longer on IVIG? Sounds like u have lots going on...sorry

Hey Dennis! So nice to "see" you!  I havent been around in awhile.  U doing ok? Hows your vision these days?

Thanks everyone!

[twopack]

Hey Michelle!  Glad to see you but hate the reason.  It's fine to come with questions but we would sure like to see you other times as well :)

This sure goes a long way toward explaining lots you've been through.  No wonder you didn't do well on steroids and ended up with infection after infection when taking them!  Similar with Tysabri I guess.  I remember you did so well initially but just got so vulnerable after the first few months.

IVIG and Tysabri almost seem like opposites.  Tysabri works against an overactive immune system right?  IVIG pumps you up with antibodies.  Yet I know some PwMS are treated with IVIG.  I'll have to expand and clarify my understanding concerning that.  

Are you sure about this being an autoimmune disease?  I realize it's a problem with the immune system.  I'm just not putting it into the attacking yourself category for some reason.  Maybe because it deals with a deficiency of antibodies rather than the overactive or misdirected activity of things like MS, lupus, arthritis, etc.

Is there any discussion of checking into the possibility this condition is lurking in any of your boys?  I know kids are exposed to all manner of things at school but it seems I remember at least one of them was always being treated for (or passing along) strep.

Seems to be a lot I'm unsure of tonight.  Guess my cognitive switch got thrown to the down position and it's time to call it quits for the night.  Glad you got a more definitive answer for something this time around.  I sure hope the IVIG can get you on a feel good track for a long, long stretch!

[michelleric]

My friend (((mary))),
Miss you...
So, interesting.  I need to re read your post.  Very little sleep and coffee has yet to be introduced.

How does IVIG help both MS and this immune issue?  You probably right, my nurse.  Doc was speaking...and all i heatd was.  Blah, blah blah!  No, really, i probably caught and understood about 1/2 of it. Needed a translater, such as yourself.

Are you interested in coming to a visit w me?  He is on Stow.

Need to check all this out.  It does explain my life full of infections.  He did sau some sort of genetics was invloved.  He said, immune, autoimmune...so glad you brought this up.

Need to do some research on google, or ask im to please explain to me again in language i can understand.  Normally i follow along with all the doc talk.  This just caught me off guard and i had trouble keeping up and asking the right questions

Coffee done, gotta go get a cup ;)

Thx,
Michelle.

[PastorDan]

Hey, neighbors.  Just poured 2nd cup here.  Way too much science in this thread for my muddled old gray & white matter to process without chemical assistance!

Michelle, take care, friend.  Rest of yas, too!

[BOK2Bjan]

Hi - I'm not on IVIG right now - my doc wants me to be on it, but it takes an entire day hooked up to an IV - 6 hours, and it does get old.  Plus since I''m on Medicaid - they are getting more and more testy!

And, yes, I do have a lot going on.  But I don't just have 3 autoimmune dx.  I have Sjogrens, IC (Interstitial Cystitis), Systemic Sclerosis, MS, Type 1 Diabetes, and am thought to have RA as well.  My thyroid is low, my parathyroid is high, my D is low, my hemoglobin is low (I have to get transfusions periodically) and I have heart, lung, and GI conditions that threaten to take me down daily.  It's a struggle, but one I'm not ready to give up on.

IVIG may seem counter intuitive in a way due to most people thinking of these diseases being due to overactive immune systems.  I don't think that way.  I believe they are due to immune systems that are "screwed up" and are attacking our own tissues (very important tissues!!).  But, to just treat it by reducing the power of the immune system is something I've never wanted to do.  I was on chemo (methotrexate) for a while, but when my hair fell out and my liver had to be checked twice a month - I just went off - cold turkey.  I didn't even tell my doctor until my next visit.  HE knows I don't want to treat my diseases that way.  Problem is - there's just not much I can do.  My body seems to baffle all the doctors.

I'm not supposed to be alive according to most who know my history.  And I've been close to death many times, each time damaging my lungs and heart more and more.  But, I keep breathing (with help), which makes me happy.

I wish you all the best, and I will try to stay in touch.  I enjoy the friendships so much.

[twopack]

I still prefer Dr. Quix over Dr. Goggle so I plugged some choice words into the forum specific search box this morning.  Here are some tidbits for review concerning IVIG (aka IVIg, IGIV, and IV gamma globulin).

Quixotic1 offered a few general comments about IVIG (June 2008)
http://www.medhelp.org/posts/Multiple-Sclerosis/IVIG-in-Treating-MS/show/535883

She also mentioned (somewhere) that IVIG is a standard treatment used to treat CIDP - Chronic Inflammatory Demyelinating Polyneuropathy (an immune-mediated disease that is the peripheral nervous system equivalent of MS).  Unfortunately, I read that before I realized I should be saving URL links.  I can't seem to find it again now that I'm specifically looking for it :(

Forum member funmonkeytoes gave an extensive sharing of her personal experience using IVIG in an attempt to force unrelenting MS progression into remission (February 2008).  http://www.medhelp.org/posts/Multiple-Sclerosis/IVIg-Information-for-Interested-MS-Patients/show/439246

Unfortunately she hasn't posted here since September of 2008.  I took a look at her profile page.  What a wonderful and courageous woman!!  I'm so sorry we didn't get a chance to know each other back then :( and hope she has found a good place now.

This last link goes off MedHelp so you'll have to copy and paste the URL to view it.  It looks to be a good general reference for the use of IVIG in MS treatment but keep in mind that it bears a 2006 copyright (at the bottom).
http://www.msadvances.com/faq.php3

This is the same link that funmonkeytoes included in her thread.  Even if it hasn't been updated (and IVIG is less likely to be recommended to treat MS these days) the info might be helpful for reviewing immuno-science and preparing for the infusion experience.

Uggh, wish I could still read fast and keyboard faster.  This would be soooo much easier.  But you know we still talk good and listen great.  Sure I'll be your back up to the next doctor visit!  Who wouldn't jump at a chance to go and NOT be the patient?  lol  I should be able to find my way to Stow.  It’s a date dear.  Send me the 411.

[rendean]

Hello my dear friend!!! Yes, I survived the last MS relapse , at least it's working it's way out,  Happy Hannukah to you and your family as well!

My neuros considered IVIG for me  I did the research several years ago and the only drawback the docs kept mentioning was the chance of blood clots and having to take Coumandin if this happened. Well, you already do so no problem there.

Since the Tysabri doesn't seem to be working (or maybe it is and I would be in worse shape,ugh) I heard a med student mention IVIG in Januanry but don't have any idea what the instructor's thoughts were since I was in ICU's drug warehouse and on so much I was half asleep most of the time,sorry.

I see my neuro later  this month since I was just released from the last 7 day ICu fun fair and much too weak to stand much, When I go , I was going to ask about this drug again. Any answers I will share.

I do know in my infusion center, there are many who use IVIG and seem to be doing well.

As for the kids, I would have them tested. My son was thought to have this defieceicy but of course he didn't fit neatly into a round hole since his body was a square peg. He did have some defieceincies but not enough to start the IVIG.

I wish you the best! It sure would be nice if this put an end to your LONG winter illnesses!

I will write more if I can find the old sites I used to refer to but my strength and energy are still back up to par so it may be a while.

((Hugs)),
Ren

[michelleric]

Thanks for the links mary. I will check them out. I miss Dr. Q.  Hope she is doing ok. Been gone quite a long time....would love to see her pop in sometime soon.

Jan, thx u for sharing your story.  I appreciate it.  You sure fight the good fight!  I wish good things for you.

(((PD))))... Long time, no see!  So happy to see your name.  How have things been going for you?  Hows Nancy?  I will go try to read some posts from you to catch up....

Dear Ren...you have been through and are continuing to go through so much.  I think the problem is we have not done ANY raindances in wat too long.   Once i get up from the couch i will start...;). We seem to start, end, start similiar meds.  Let me know what your neuro says about IVIG.  Continue to feel better, please?!

To all my pals..thx for being here once again  for me...xo

[BOK2Bjan]

One thing I will say for the IVIg - I never had any side effects - other than my vein being abused pretty bad.  Once, the nurse didn't put enough pressure on it after removing the IVand I didn't realize it until having walked down a very long halway and into an elevator.  I looked down and blood had been pouring down my arm into my purse, then down onto the floor in puddles - all the way down the hallway and now onto the floor of the elevator.  The poor guy who was in the elevator - what a sight that must have been.  I just stammered and said - uh - guess I better go back for some more help.  I felt like I'd given a pint!  And what a mess.  That vein was open and ready to stay open for life :)  My right brachial vein is so pronounced - it looks pretty gross,  It's really scarred too, making starting IVs hard.  Anyway - otherwise - no biggy  Jan