Author Topic: IVIG and Sjogren's??  (Read 17754 times)

denisezesh

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Re: IVIG and Sjogren's??
« Reply #30 on: August 23, 2010, 08:46:35 AM »
Hi...I,ve had ivig for 4 years...for hypogammagobulin anemia...no side  affects   ...I take previcid ,tylenol & benadryl liquid (works faster& dont get restless legs) 1/2 hour before appointment....You have to drink alot & eat something...then go to sleep....Dont snore with mouth open like  I do...Your thirsty from the benadryl....I say thank God for it ..This is my first year with no sinus infections....Denisezesh

susu

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Re: IVIG and Sjogren's??
« Reply #31 on: August 23, 2010, 04:27:08 PM »
Tks.    Trying to find out the IGA amount in Carimune NF.    It is either listed as trace or 720 mcg/ml.    Big difference.     Whether or not this has played into my increased dryness - don't know.   
Gursie - thanks for your kind reply.    You def. noted increase in dryness attributed to IVIG?   You had mentioned another drug - R something - taken at same time causing dryness?
How to better ask - you pinpointed your increased dryness to IVIG?    What brand?
How many infusions?    Noted after first infusion - like me?
Your mentioning possible allergy to it and "resolution" (pre IVIG dryness level) in two months gives me hope.   Thanks for that.    My doctor is saying no way IVIG caused anything I am describing - dryness and increased hypersensitivy - of all things - to toilet paper.
I generally do better in the summer with the humidity. (but trouble with the heat).
Cold, dry, windy winter days are the worst for drynesss and burning - and is how I feel now during a heat wave.    This is all so unfair - to all of us.    No one can imagine the pain of dryness.     

gurs

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Re: IVIG and Sjogren's??
« Reply #32 on: August 24, 2010, 05:01:59 AM »
SUSU...

Ive had 3 IVIG infusions..all Gammagard Liquid.....always get super dried out..after a few hours into it, just miserable...eyes super red..no fluid in my body at all.
The first time I had the saline drip for 3 hours after, which Im guessing, helped some. The added dryness went away If I remember a week or two later.
About 6 months later, went to a different infusion center where they rushed it some and I was feeling super dry and very ill. They didnt have the order for the extra saline
after and it was a weekend and they couldnt get hold of the doc. I went home and was very sick...every mucous membrane in my body was burnt out-extra extra dry for about 2 weeks...got throught it though thank god.

Last septemeber i had another infusion and noticed that 1 hour into it, my head started plugging up and my hearing was impaired a bit..was feeling super ill through the entire
infusion, but i was used to that sick feeling..anyways I had the saline after that one. One the way home, felt super-duper ill. Headache was killer..still couldnt hear very well.
I was still super dried out as usual. My headache got so bad, ended up in emergency a week later to get tested for mennigintis and had a CAT scan/lumber to rule it out. I was ok thank god. I still couldnt get out of bed. I called my doc and he said I prob had an allergic type reaction to one of the donor plasma's and he gave me some Medrol to take..about
8 mgs a day. Things simmered down after two months, but I still have these nasty headaches ever since.

I got Rituxan in May, and did ok. I get extremely burned out and dry with this as well, I do all the saline, slow run time, etc. I think all the sol-medrol and benedryl just make it much worse. I did ok with this infusion, until a month later, where now, Im dried out so bad. My eyes are burning pain all the time, mouth on fire..cant seem to get any relief. Doc said I might be flaring big time, or this is some side effect of Rituxan now, but I never had it before with Rituxan?

Hang in there....if you noticed a big change in your dryness right after the IVIG...then it was the IVIG right? hello??? your body will adjust in time and filter that stuff out...2 months Im guessing. Its prob some form of allergy. Can you take any Medrol? that seems to calm things down, but can also add to the dryness if you take too much.
They also need to run all those infusions super slow. I always go like 9 hours on all of them...nurse said I do double-triple time then most, but less side effects.


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 #33 on: August 30, 2010, 04:12:35 PM »
Three weeks later still dry/er.   
Last week asked nurse where she had found info specifically linking IVIG to dry m.membranes.
I guess she never really had read such a thing - as her subsequent response was inflammation in general - taken off product insert.     
Gursie -  you are the only person that I have found that had increased dryness after IVIG.
Did you report this to your doctor/FDA?

irish

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Re: IVIG and Sjogren's??
« Reply #34 on: August 30, 2010, 10:14:26 PM »
I am going on 4 years of IVIG therapy and I will add that I do get dry during the infusion and it is more in my nose and sinuses. I think that mine is related to being cooped up in a room with little ventilation. I always get a little headache and take a tylenol half way through.

I am amazed gurs, that you had that headache a week later. Did your doc and the nurses ever explain to you what to watch for and when to call their attention to issues??? My first infusion they sent prednisone with me when I left and told me that if I started to get a headache in the back of my head to take the prednisone and call the doc. I made it through the night without a headache and went back the next day for another 6 hours with no problem.

My doc has a huge practice and many people who get infusions. His practice consists of people who fall through the cracks with their medical issues so he sees a lot of autoimmune/immune problems and really sick patients. I have never talked with anyone who experienced dryness.

If people start to have some side effects they will give more steroids, etc and other drugs and get them through if they are able. If things are getting too serious they just stop the infusion.

Sus, Have you every asked your doc about the info on the IGA products. My understanding was that many of the products don't contain things that will give these people problems. Do you feel that you had a product that contained the wrong mix of products???

Have you had your thyroid checked? I just read the other day that sometimes when the thyroid is goofed up one can have really dry eyes. I had not heard that before either. Irish

gurs

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Re: IVIG and Sjogren's??
« Reply #35 on: August 31, 2010, 04:19:59 AM »
Ive always been super dry...my rheumy said I have an extreme case of Sjogrens, maybe because Ive had it since I was a child?, or another good issue that Irish brings up
is the hormone thing....ever since my hyster 4 years ago, im super dried out..even with a little estrogen, its not cutting it. My hair is all falling out and my thyroid is a bit low, so
this can be a contributing factor......I think my mucous membranes are just burned out dry and full of candida, which add to the dryness.

Susu..your symptoms should go away in time. Maybe it triggered some type of flare maybe? when im flaring, i get so dried out. More than the norm I should say.
No one knows the answers on why some of us have some different reactions to different medications ...the docs are puzzled too.. You know your body the best, and
if you got super dry after the IVIG, then you def did have some type of reaction.  No, i didnt report the increased dryness, since I seem to have it
with all my different infusions. (IVIG & Rituxan) I think its the medication, the pre-meds, (sol-medrol) and benerdryl...those alone are just drying.


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 #36 on: September 01, 2010, 03:00:16 PM »
Gurs I must have forgotten that you used premeds before your IVIG.
Benadryl?    I know it is drying.    Just in case I get desperate enough to use B - what is average time for that added dryness to wear off?   

inga

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Re: IVIG and Sjogren's??
« Reply #37 on: September 01, 2010, 03:26:23 PM »
In my opinion, low estrogen has contributed to this issue for me.

But, I have none of the issues that you are experiencing with the IVIG.  I have been pretty fortunate.  I only premed with tylenol cuz I can't take benadryl.

irish

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Re: IVIG and Sjogren's??
« Reply #38 on: September 01, 2010, 10:01:48 PM »
inga, May I ask why you can't take the benedryl????

I havae to have my benedryl in 100 cc of saline slow drip. The first IVIG I had I was given my meds all IV flush and in about 5 minutes I called the nurses name( she was across the room) and said very loudly "I'm stoned" and promptly fell into a deep sleep for 2 hours. I guess I scared her to death cause no one else had ever done that before.

All the people there getting IVIG were being good samaratins and helping her keep a watch on me. It turned out to be pretty funny. No more IV flush benedryl for me though. I have never lived that down. Lots of patients sill tease me. IRish ;D

gurs

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Re: IVIG and Sjogren's??
« Reply #39 on: September 02, 2010, 04:26:56 AM »
I know my low estrogen is a big factor for me. I take a low dose of bio-estrogen, but it doesnt seem to help much with my dryness, and when i try to increase it,
I get sicker..dont think the hormones and autoimmune mix well.  Hormones do have such an influence..on the dryness especially. I used to be able to tolerate
med's ok, then I had my hysterectomy-menopause, and now im allergic to everything....its crazy.

SUSU....my bad reaction to IVIG took around 2 months to settle down a bit. Benedryl is sooooooo drying. Motrin is drying me out big time. As soon
as I take 1/2 tab (100mg), my entire head and mucous membranes just plug right up with dryness? im not sure why? maybe its an allergy or
something. Im sure your drinking lots of water..and watch any meds that can cause dryness. Are you still taking the antibiotic? to me, those
dry me out horrible..Im flaring a bit this morning and im so much drier (if possible..ha ha). No one understands the dryness we are talking about either.
I tell them to go out into the desert for a week with no water, and then after that, tell me how you feel..because this is how I feel all the time...even with water, etc.

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

inga

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Re: IVIG and Sjogren's??
« Reply #40 on: September 02, 2010, 06:28:40 AM »
I get a horrible movement disorder. I have restless leg, but this is bodywide and a LOT of meds trigger it...benadryl, all SSRIs including those with a serotonergic action such as Tramadol and Zofran, all anticholinergics (except atropine), all antidopaminergics, such as Reglan, Haldol, Abilify like drugs.  So that doesn't leave much in the medication arsenal, except benzo's which I don't like, and opiates, and the antiseizure meds, and the meds that don't have the other affects. :-\

susu

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Re: IVIG and Sjogren's??
« Reply #41 on: September 02, 2010, 04:25:38 PM »
Tks all.   Gurs - don't quite understand.   You have always taken Benadryl with your IVIG?
If yes, perhaps that was your cause of increased dryness and otherwise had nothing to do with IVIG?     I have a decision to make - hence my pointed questions.    Doctors office called yesterday and suggested I try IVIG but another brand.   I am scared to even consider it.
I am waiting to see if their office/infusion lab can come up with any explanation to what happened to me.     Also waiting to see if/when these symptoms resolve.    Then will make decision.   I feel I need IVIG but not not at the risk of my eyes.   mouth etc.
Again, I did not premed with anything except Tylenol.     Was it the brand Carimune with high IGA and sugar that could have caused this with me?       

inga

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Re: IVIG and Sjogren's??
« Reply #42 on: September 02, 2010, 04:27:48 PM »
I am on Gammagard 10%....it comes in a 5%.

susu

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Re: IVIG and Sjogren's??
« Reply #43 on: September 02, 2010, 05:13:26 PM »
Tks Inga.   I think the infusion lab is having a hard time getting GG.   I had thought I was to get GG-SD.    Lab has Gammunex.    Has higher IGA but lower sugar.   ???!!!
Don't know when/if they can get GG.    Begs the question.   Why is GG so hard to get?
(I have read).    Is less made or is it in the most demand?    If demand, then why?
Is everyone wanting the lowest IGA possible regardless of their own levels of IGA?
If yes, I still don't understand.    One would think that if one were low on IGG and IGA - then - great - use brand with IGA and replace both.    But it does not work that way because firstly IGA cannot be replaced - the receiving person's body cannot process/use it?    If one has "borderline" IGA and does not (yet????) make anti-A antibodies - why still the seemingly higher demand for low IGA IVIG?   

irish

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Re: IVIG and Sjogren's??
« Reply #44 on: September 02, 2010, 09:27:49 PM »
susu,The reason the IVIG products are in great demand is because there are so many people who need them. Not only do they treat the people with immune disorders or autoimmune disorders on a routine basis (some every 2 weeks, 3 weeks, 4 weeks) but there are other uses.

For pregnant women with bleeding problems infusions of platelets are needed prior to delivery. All the different globulin products are needed for many different reasons and it has caused a shortage in the supply. Each bottle (estimate/generally) of product takes 2000 to 10,000 donors of plasma. They use all these donors to make up the batch of IVIG. This gives people exposure to lots of "stuff) in the globulin that will help treat the health issues.

If you have ever seen pictures of the factories that make the product it is mind boggling. They are super high tech with security beyond belief and infection control every step of the way. Very high tech and the bottom line is the companies depend on the public for the donated plasma. In a town close to us there is a plasma center where one can donate plasma and packed cells and get paid for it. When you talk to people please remind them to donate when they are able as they will save someones live or help them have a better life.

There are quite a few different products out there and they have learned over the years that when the products contained sugar there was a higher incidence of kidney failure. Now the products are pretty much all sugar free. The IgA is also monitored in the products. It is a very complicated business and takes a lot of dickering by the staff of infusion centers to get the products. The infusion centers have to keep checking all the time with the suppliers as they trade products, buy from a center who has too many of one product, etc. Lots of action behind the scenes as the last thing on earth they want to do is have to throw away a bottle of product because it didn't get used before its expiration date. It is a precious commodity. Hope this info helps a little. Irish ;D

I am wondering if the docs have told you that you need to drink a lot the day or 2  before your infusion, during the infusion and for a couple of days after. I am also curious as to how many of you receive saline IV after the IVIG. Generally, I get the 50-100cc saline flush and that is it. I will have edema in my legs the couple of days after my infusion and will have gained about 3-4 pounds. The reason for this is because of the extra fluids that I drink plus the IVIG has a high protein content and that causes the body to hold onto the fluids. If any of you have received Gammagard just watch the bottle as it drips. It actually makes bubbles in the bottle and looks like egg whites that are being beaten. This is because the gamma globulin is high in protein like egg white is. When I was on the Gammagard I always felt like I had to drink plenty as that thick stuff going into my blood stream needed to be thinned down-also felt like my blood was full of egg white omelets.

Also, if you drink more than usual you have a better chance of avoiding the post infusion headache. This headache is caused by the product which has a higher protein and sodium content than that found in the spinal fluid. The body tries to make the fluid less concentrated by pulling water from the spinal fluid.( osmosis) You end up with low spinal fluid levels and essentially end up with a headache like one would have after a spinal tap.

Drink more fluid--but don't overdo. Be sensible and the IVIG goes better.
« Last Edit: September 02, 2010, 10:02:18 PM by irish »