Author Topic: IVIG and Sjogren's??  (Read 17750 times)

navydad

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Re: IVIG and Sjogren's??
« Reply #15 on: August 19, 2010, 12:09:58 PM »
Yeah, I know allergies cause inflammation, which in turn could be the added dryness.. I know since my immune system is kaput...allergic to everything just about.


Navydad....didnt you have bad reaction to your IVIG? I know sometimes the side effects go away. Im looking into a different brand maybe?
I know the pre-meds are important...the Benedryl and sol-medrol..also, request the saline IV after the IVIG..it will added some added hydration.

Im like you Navydad...now in bed by 8:00.  yipeeeeeee Thank god for my DVR...I would miss all my favorite TV shows!!!

Gursie
No,, I was ok on IVIG,, my reaction was to the pulse steroids they tried,, 3000mg over three days,, that left me mindless for weeks and a reaction to rituxin,, Hives, sweating,, choking, the whole nine yards,, it wasent pleasent,

susu

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Re: IVIG and Sjogren's??
« Reply #16 on: August 19, 2010, 02:23:53 PM »
Tks.   Nurse friend did some research for me.    Somewhere she found reference to dryness eyes, nose, mouth after IVIG in people with low IGA.   The IVIG I was given was for folks with low IGA, but if this what I am reacting to - well I don't know.     My total IGA normal but one IGA subclass subnormal.     If I had had any knowkedge this could happen, would have not done IVIG.     It hit me where I least expected it to and the one area - dryness/burning where I really suffer.   I pray the IVIG effects wear off.    Is that possible?

irish

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Re: IVIG and Sjogren's??
« Reply #17 on: August 19, 2010, 04:04:25 PM »
The IVIG lasts abouat 3-4 weeks. Irish ;D

susu

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Re: IVIG and Sjogren's??
« Reply #18 on: August 19, 2010, 08:35:16 PM »
Researching IGA and possible reactions with IVIG.
I don't understand - something about having low IGA can cause reactions.
Only absent IGA?    Or subnormal total IGA?    Or subnormal IGA subclass?
FWIW here follows my last bloodwork:
IGG total  576   (700-1600)
Sub 1      349   (422-1292)
Sub 3        26   (41-129)

IGA total  91    (70-400)
Sub 1     49.6  (58.2-263.5)

I thought I had understood that due to low IGA I was to receive IVIG with lowest possible IGA content.    I could have completely misunderstood all of this.    I think I was originally to receive GammaGard SD but for some reason was switched to Carimmune.
I think the phaarmacy could not get GGSD.?


susu

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Re: IVIG and Sjogren's??
« Reply #19 on: August 19, 2010, 08:43:34 PM »
continuing.
found this website:
http://emedicine.medscape.com/article/210367-overview

Lists the IVIG brands and contents.

for example:
GGSD                         IGA  1.6 mcg/mL in 5%
Carimmune                 IGA 720/mcg/mL
Gammunex                 IGA 46 mcg/mL

Can anyone make sense of any of this?

I think this is possibly very important to anyone with dryness who is considering IVIG.
Also I think my reaction has been reported to the FDA.
Again. I am in agony with this much increased dryness.   
I just took 50 mg of Doxy for its anti-inflammatory properties.

irish

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Re: IVIG and Sjogren's??
« Reply #20 on: August 19, 2010, 09:25:14 PM »
The problem you mentioned with blowing your nose is a very strange thing. Have you ever investigated the chemicals used in the manufacture of paper products. The smell from the factories is just horrible. Makes one wonder if some chemicals could have been contrained in the paper and been there to irritate you nose and smell center.

I am curious as to what the FDA will have to say about your reaction. I hope that they can figure out what is going on with your. I hope and pray that when the drug is out of your system you will feel better. Just when we think we have heard all the side effects something else pops up.

Has there been any remarks made about the action of the IVIG product on the cholinergic system.This is what causes the dryness or the excess moisture. Have you used the salogen to increase the saliva? It would be good if somehow, someone could put a pharmacological neurologist in touch with your case through the FDA. I would think the FDA could pull some highly specialized pharmacologists out of a hat from some place. Good luck with this and I sure hope they can get this figured out for you.

Also, one of the newer products on the market is called Privigen. I have taken it for about 1 year as have a lot of people at my infusion center. It is supposed to cause less side effects. Also, Has there been any discussion about the rate of metabolism your liver has done with the IVIG. Some people have livers that don't metabolize meds in a normal way and this can cause a lot of problems. This can happen with pretty much any medication and is not something that is typically expected. I guess it has to do with the enzyme in liver that is supposed to bind with the drug having a problem that prevents the metabolism of the drug. This can result in a higher blood level of the medication than is typically seen. Irish

gurs

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Re: IVIG and Sjogren's??
« Reply #21 on: August 21, 2010, 03:25:29 PM »
I have the same issues with IVIG and Rituxan...even tylenol-motrin, steriods, or any med's for that matter. Even with proper hydration and 3 hours of saline after
the IVIG and also runs throughout the Rituxan.
I have no t-cells and just had my IGG subclasses checked.

IGG subclass 1 (376)
                   2 (116)
                   3 (35)
                   4 (6.5)
                   serum total (608)

 
Any type of antibotics dry me out even worse...not sure how they doxy will work for you? might cause more issues? Uhhhhhhh who knows. I seem to be getting dryer by the day.
Its scary....my teeth are falling apart again and Im having some new eye issues to deal with. Wish I could get IVIG again, but not sure if I can risk it. Im going to see
my infectious disease doc this week to see if she has any thoughts. I know when my systemic yeast gets super bad, i seem to get dryer .

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

navydad

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Re: IVIG and Sjogren's??
« Reply #22 on: August 21, 2010, 03:37:51 PM »
I was low on subclass (3) and was started on IVIG,,, this was by immunologist,, then rheummy got in th act and said it might help with neuropathy,, so off we went,, my levels came up,, and kinda stayed threre,, I have to look at the Mayo papers to see what it was in May,, but I still tihnk it did me good for the neuropathy,, but mayo said,, in thre opinion,, no more IVIG,, so no more

inga

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Re: IVIG and Sjogren's??
« Reply #23 on: August 21, 2010, 06:21:12 PM »
I have been on Gammagard for quite a while, but my dryness issues are NOT related to IVIG.  I had severe dryness prior to IVIG, for many years.

Again, my diagnosis is likely different.  I have small fiber neuropathy, a +ANA and negative ENA.

navydad

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Re: IVIG and Sjogren's??
« Reply #24 on: August 21, 2010, 07:32:36 PM »
I had dryness before IVIG also,,, but still neg bloodwork

irish

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Re: IVIG and Sjogren's??
« Reply #25 on: August 21, 2010, 10:00:41 PM »
People who have low IgG subclass 1 and 3 have problems with infections in sinuses, lungs, upper airway, etc. This is considered to be an immune deficiency and usually requires IVIG---Just depends on what else the doc may have up his sleeve. The Rituxin is a drug that can help the autoimmune system in relation to the immune system, but one has to really weigh the pros and cons of taking it. 

Also, neuropathy can also be a problem with some of the low IgG issues. The immune system is so darn complicated that I am of the opinion that an immunologist is probably more qualified in many cases in treating these issues. The infectious disease docs are good, but the immune blood work is really, really complicated and takes a doc who is able to sit and think outside the box in order to arrive at a clinical diagnosis and treatment.

The Rituxin is a good med but it destroys the B cells and this can put a person in a world of trouble. The treatment can cause more trouble than it is worth when people have the immune issues. I would recommend that all people with autoimmune diseases get their immune status assessed as the autoimmune issues can induce the immune disorders.Just my opinion.

In reality the Mayo Clinic is offering the opinion that navydad should not be having IVIG, however, that is their opinion. There are other places who may not agree and truth be told there are other medical centers who might order the IVIG for him. Mayo missed my diagnosis of Sjogrens and Myasthenia gravis and gave me a pretty hard time.

The doctor who orders the IVIG is the one who is able to get the product approved. They have to know what codes, physical issues, etc are documented to enable its approval. The other thing I would like to mention is that we have a right to refuse treatment if we don't feel right about it. My immunologist has at times mentioned one or another treatment as a possible additional option. He never jumps into anything because, often, to do nothing at all is often the safest path to take. I really respect his ability to think about my case and choose to be conservative in his treatment as it is much safer. Irish ;D
« Last Edit: August 22, 2010, 06:35:52 AM by irish »

LizPetillo

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Re: IVIG and Sjogren's??
« Reply #26 on: August 22, 2010, 04:42:51 AM »
 Doctor appears to insist that IVIG could not cause increased dryness.   
Doctors insist on a lot of things that aren't true.
You know your own body better than they do lots of times. 

gurs

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Re: IVIG and Sjogren's??
« Reply #27 on: August 22, 2010, 04:56:06 AM »
What can an immunologist do anyways? IVIG seems to be the only option maybe? I agree with Irish...that is only Mayo's opinion not for Navydad to have it. If you
did ok on it, and feel 1% better, I would try it again. Just because its a top hospital, means nothing,,,,to me anyways.

Im not sure what im going to do now. Im losing more weight, getting sicker by the day. The doc thinks i have some vasculitis, then the rituxan would help. But my
immune system is so bad right now? Doc wants me to go to cleveland clinic, but too sick to travel. I may just give in and get a biopsy done to see if there is any form of
vasculitis. She (doc) i worried about my wound healing at all.

hematologist rec plasmapharesis....not sure I would go there just yet, sounds scary.

Anxious to see if the Infectious disease doc can find anything..prob just more yeasty problems.. uhhhhhh..so tired of this...And yet,
Sjogrens is just dry eyes and mouth right? HA HA..

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

susu

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Re: IVIG and Sjogren's??
« Reply #28 on: August 22, 2010, 03:31:02 PM »
It has been almost two weeks since the infusion and the worsening dryness issues continue.
I don't know where my friend found ref to IVIG - low IGA patient - and dryness.
I have searched online for hours and find nothing this regard.   But I am absolutely positive my dryness and pain/burning is 50 pct worse.   
I have Rx for Doxy from Optho for dry eyes.   Had not taken any this summer. Remembering reading that Doxy has anti-inflammatory properties I was desperate enough to see if it would help.     It hasn't - not that 50 mg would........
I am devastated.   Why could I have had this reaction?   Will it resolve?

gurs

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Re: IVIG and Sjogren's??
« Reply #29 on: August 23, 2010, 03:48:30 AM »
I feel for you....I had to stay in bed for 2 months after my last IVIG because of the headache and added dryness. Doc said it takes about 2 months to filter
out of your system...its like an allergy. He said there are alot of donors involved, and could have picked up allergen from one of them.
I cant take any allergy medications because of the added dryness either, though maybe a  low-dose one might help.

I would def not take any antibiotics unless i had an infection or something..they make my dryness 1000 times worse. Dont take anything unless you have to..even
tylenol or motrin etc...everything to me is just drying.

It will get better in time...maybe try drinking some Penta water? its expensive, but it seems to be more hydrating? maybe your doc can try and IV of saline in you
or something? I dont know??? feel so bad for you. My eyes/mouth have been so extremely bad these last few months...burning pain all the time..uhhhhh.

take care sweetie...
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements