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Sjogrens Topics => Living With Sjogren's => Topic started by: susu on August 18, 2010, 03:11:06 PM

Title: IVIG and Sjogren's??
Post by: susu on August 18, 2010, 03:11:06 PM
Have not been here in some time - had to re-register.

I don't know if I have Sjogren's.    I do have very dry eyes, mouth etc.
Very sensitive to light/glare.      I can cry emotional tears - believe me - many of them.
I don't produce enough oil from the Meibomium (sp?) glands.
I use tears, oils and Restasis.   Lower ducts closed.
Have had the dryness issues and several other serious disabling issues for 4 years.
Sjogren's antibody tests normal.    ANA, RF, Sedrate normal.     High white blood cell count.
No lip biopsy.   No swollen parotid glands.    Three rheumies say they don't think I have Sjogren's.      Lyme and Bartonella tests come back fairly positive.    I understand LD/Bart can cause eye issues.    Recently Dx'd with hypogammaglobulinemia/CVID.   Had first IVIG last week.    Within days noted my eyes/mouth/nose much more dry and painful/burning than before.    Out of things to worry about with IVIG I did not expect this.    Its' real bad.
Called doctor's office.   Was told my increased dryness nothing to do with IVIG.
I would not expect IVIG to cause dryness, (like Benadryl which I did not take)which is what I tried to explain to the assistant - that I wonder/fear if the IVIG revved up my immune system to cause further attack on itself/me.     A
 
Title: Re: IVIG and Sjogren's??
Post by: susu on August 18, 2010, 03:18:10 PM
Sorry - my first post must have been too long and was cut off.   
Asst said that doctor said no - that the IVIG did not do anything to cause more dryness.
I trust this doctor, but it makes no sense that I am so much worse and only difference is the infusion ten days ago.     Anyone experience anything like this?   After IVIG?    Could this possibly resolve over time - me back to dryness I had pre infusion?   Thanks.   This is awful.   Any thoughts appreciated.
Title: Re: IVIG and Sjogren's??
Post by: inga on August 18, 2010, 05:09:42 PM
I am on IVIG.

I have neuropathy.  I had LYME caught in the acute stage with hx of tick bite and EM rash.  I am + for Lyme and Erlichiosis, but it the infection in my case is very old, over 15 years.  I don't feel I was effectively treated back then.....won't help now.

I do not have dryness from IVIG.....but I do from neuropathy.....It is debatable if I have Sjogren's since my ENA is negative for SSA and SSB.  It is thought my neuropathy is inflammatory or autoimmune, but post infectious has not been negated...in other words, they say...."Lyme is a complex thing, we dont know what it does'....sooo...  IVIG is not given for Sjogren's alone, but is given for neuropathy in some cases that have not responded to other treatment, or in aggressive cases of neuropathy such as I have.  If you can stick with it, it would be good.....try hard...It is hard to get, and it takes a while to help....and the help is not the kind that knocks you over the head.

I have a high ANA....negative ENA.  Your ANA while you are on IVIG is positive.  The only way you know if your ANA is positive is to have it done before you start IVIG or 4 months after.  It has a half life of 21 days.  Mine is positive off IVIG.

I don't know if you have been tested for small fiber neuropathy via a skin biopsy for nerve fiber density, but that is an option to find out if the Sicca is from autonomic neuropathy aka, dysautonomia.  The Sicca that Lyme patients may be experiencing could be from neuropathy.
Title: Re: IVIG and Sjogren's??
Post by: susu on August 18, 2010, 06:21:59 PM
Thanks Inga.   My ANA normal pre IVIG.   I was started on IVIG once it was discovered I was subnormal IGG total and some subclasses and subnormal one IGA subclass.
I know my dryness issues much worse since the one infusion.    But why could that be?
Again, my theory is that it ramped up my immune system.  If I have Sjogren's - which is immune system attacking glands - I would think the IVIG put fuel on the fire.    Or maybe I have the whole IVIG thing misunderstood.   Doctor appears to insist that IVIG could not cause increased dryness.   She stopped the orders for further IVIG treatment.    I had a weird reaction day after infusion.    Went to blow my nose with toilet paper as I always do/same brand and I had a reaction like I had just touched/inhaled something very toxic.    That had never happened before.    I don't know if I have Sjogren's or LD.    Neither or both.   I had thought that my dryness reaction might offer a clue.    I am in agony and don't know what to do.      I do have neuropathy  of some kind.     Or not.    I don't know what I have for sure and at end of my rope because of pain and many other issues.   Treatment for Sjogren's contraindicated for LD treatment - ie steroids.    I did IVIG with no premeds ie no Pred and no Benadryl.      Oh have read that folks with Sjogren's usually have low WBCC and high Imm G.
I am the opposite.     I will have to research the "D" disease you mentioned.   Is another illness that can cause serious dryness issues?
Title: Re: IVIG and Sjogren's??
Post by: anita on August 18, 2010, 06:38:52 PM
I was told by my neuro/rhuemy doctor that Lyme titer can commonly show false positive with autoimmune disease.  Did you have the tell-tale bulls-eye rash? 

Sounds as if there could be several possibilities.  Hopefully they can narrow it down soon.


Title: Re: IVIG and Sjogren's??
Post by: inga on August 18, 2010, 07:09:02 PM
I would wonder about the positive Lyme without the signs of Lyme,  I had the bite and EM, and was treated for the Lyme thus aborting the immune response to the organism....

Lyme testing is really inaccurate.

I wonder if you can get the skin biopsy to find out if you have neuropathy?  Lyme, Sjogren's or not...Once you have had IVIG, you could conceivably show up Lyme + from the IVIG, if I am correct....you could probably show up + for just about anything.  It should go back to normal after 4 months off IVIG, but it depends on the person...I have heard it can last a long time.

I only premed with Tylenol.  I have had many infusions, and burning has not been an issue.....

I do not have swollen parotid glands either....hmmm.

The IVIG would not ramp UP your system to be damaging....it is an immune modulator....that said, you never know how one wil react.  Most infusions I don't feel any different than before.....I had several bad reactions a few times, but, nothing hugely serious....but no burning.  I had the headache, vomiting, and one episode of chest pain....with a PRICKLY mouth sensation typical of an allergy.

I wonder if you premed, if this would happen?  I guess only you can decide if this is therapeutic or is intolerable.
Title: Re: IVIG and Sjogren's??
Post by: susu on August 18, 2010, 07:54:54 PM
All I know is that after the IVIG I am really dry.   In agony.     And scared.
I do not recall LD rash.    Was tested twice by Igenex.    Adding all the bands I was positive on 18,28,41,58,66 and IND 34 and 39.   Considered negative. 
First Bart test <=.  Second Bart test =.    Don't remember the figures but my doctor noted the  missing "<" from second test which means something changed after taking antibiotics.   ie Bart not really negative.    I have spent most of my life in the woods/wilds on deer trails - walking my dogs, on foot clearing trails and riding my horse.
Now I am housebound.   Real sick.   For four years and counting no diagnosis - no treatment and I am losing my  mind.    The CVID Dx was promising in that there is the IVIG which I had hoped would help with pain and fatigue and Sjogren's and/or LD/Bart.
The subsequent significant increase in dryness unexpected.     There has to be a reason for that.   Bad enough that I was doubtful I wanted to continue with it - would each treatment result in the same?    Doctor rescinded the orders for IVIG anyway today after my asking questions about this to her asst which she would relay to doctor - then the asst would reply to me.   None of this makes sense.   The little research I have so far been able to do in regards to Dysautonomia sounds interesting and symptoms
 familiar.    Dry mucous membranes?   Wonder about photophobia?   Fever?  Hypersensitive to everything?
Title: Re: IVIG and Sjogren's??
Post by: susu on August 18, 2010, 07:58:44 PM
Thanks for info on the other tests.   Will research that.   I have had some neuro testing. 
I'll come back with that info.   
Title: Re: IVIG and Sjogren's??
Post by: irish on August 18, 2010, 11:49:46 PM
I have been on IVIG for 3 years and have taken 3 different products. I have sjogrens by positive blood work and positive lip biopsy. Also have hypogammaglobulinemia with severely low t-cells and myasthenia gravis. Plus bullous pemphigoid (skin autoimmune disease and asthma.)

I have to say that I find it very hard to believe that you are having increased dryness from the IVIG. This treatment calms down the immune system which in turns decreases the symptoms of the autoimmune disease. Now, I have to add that my IVIG is ordered for my myasthenia gravis and my low t-cells and in spite of being on a really strong IVIG I still have symptoms with my sjogrens. I have not read any literature where the IVIG is ordered for a sjogrens patient for dryness. The IVIG is used often for some of the other problems of sjogrens like the neuropathy.

Be aware that in this hot summer the air is so hot and in spite of the humidity a persons eyes can get dry. The air conditioner raises havoc with the eye and nose dryness as does riding in the car with the air on.

The other thing is you have the CVID and the only way to treat and control this disease is to continue the IVIG. CVID can be very serious and ruin a persons life style not to mention the possibility of getting a fatal infection without it.

Also, I am confused as to why a person would refuse to take the steroid IV and the benedryl prior to the IVIG. These are given to prevent any side effects. Also, they are a good thing to have taken because if you have a side effect you are already premedicated. This gives the docs time to get more steroid and benedryl on board. Sometimes people have some side effects and with medication and slowing down the IVIG the problem goes away never to occur again.

The medical community has been doing these treaments for 20 years ro more and have gotten quite good at it. The important thing is to relax. 

At  my infusion center we sit and talk with each other and pass the time. The nurses also visit with us when they have time. They also provide small bags of chips, pop, candy dish and coffee or tea. It helps to have something to nible on when we are sitting around for so long. Many times people will bring in donuts, cookies for the rest of us. Irish ;D
Title: Re: IVIG and Sjogren's??
Post by: gurs on August 19, 2010, 04:52:10 AM
SUSU.....

Yes, your not nuts!!! I also had increased dryness after my IVIG treatments...even after a 3 hour saline drip after the initial IVIG infusion. I was afraid
of the pre-med dryness from the benedryl and medrol, so my doc ordered the saline after...3 long hours....i was still very dry. I did get better in time though.
I had some allergic type reaction and sufferd from severe headache-bodyaches for 2 months after. I really need to get another infusion, just saw my rheumy
yesterday and she said my T-cells have dropped even lower and my IGG and getting lower as well. Thinking another brand, but scared to risk it?

I went through the Lyme's stuff too....a good lab showed I had it, but when I went to 4 other doctors, they said people with autoimmune can show
false positives..so i dropped it for now.

Inga...I did alot of studying of Lyme's and alot of people get better with antibiotic IV's...even with longstanding-chronic Lyme's?
I would give it a try?? why not? I would try the antibiotics, but my systemic yeast is just out of control.

Gursie
Title: Re: IVIG and Sjogren's??
Post by: anita on August 19, 2010, 05:00:57 AM
You are obviously sensitive to the IVIG, regardless of others (myself included) that did not have this type of reaction.  I all know that each of us reactive differently to some medications.   Your body just doesn't like it.  That's too bad because IVIG can offer some relief of many symptoms.

The Lyme without the tick or a rash (not something that could be missed/forgotten) may be a false positive.  The tick usually needs to stay attached 24-48 for transmission (so usually people see the tick by then) and IVIG can cause the false +, but so can just autoimmune disease itself without IVIG.

I think the CVID is playing a bigger role in this.  Logically, compromised immune systems lead to unusual allergy responses (since allergen response is an immune response).  This may be why the reaction was so severe...since not only is the immune system deficient, but confused from in AI disease.

Best of luck,
Anita



Title: Re: IVIG and Sjogren's??
Post by: LizPetillo on August 19, 2010, 05:06:02 AM
I'm thinking you are having a reaction to the IVIG ... somethng in it ... like when I had my kidneystone they gave me a pain killer and I went COMPLETELY dry.  It was awful.  My body didn't like it.  Perhaps the same with you. 
Title: Re: IVIG and Sjogren's??
Post by: navydad on August 19, 2010, 07:56:39 AM
I sent a message to my neuro the other day asking to be put back on IVIG,,,, but since Mayo suggested no more immunosuppresents or IVIG,, I highly doubt I;ll be getting it,, I was so ck last night i was in bed at 6pm,,, todays not much better,, legs re really wobbling,, cant stay awake,,, I wish I knew what was wrong,, I dont run any fevers,, but my skin just burns,,, I had prayed it wouldnt get my hands,, but its obvious it has and my hands are god for nothing,,,
Title: Re: IVIG and Sjogren's??
Post by: gurs on August 19, 2010, 10:46:01 AM
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
Title: Re: IVIG and Sjogren's??
Post by: inga on August 19, 2010, 11:59:52 AM
Most infectious disease doctors will disregard blood work from Igenex....they specialize in Lyme.  They do different testing than the usual stuff.

I am negative on Lyme now, but, that happens when the infection is caught during the EM and treated....my titer was rising, but not to abnormal yet, and they went ahead and treated me, not waiting for the titer to get to abnormal.  They told me I would forever be negative on Lyme tests.  On Igenex, I am positive, because they do the IgM test, which is the earlier response to infection...prior to IgG which comes later.  Igenex has been controversial for a long time....I am not sure what to think of the situation.  They may be persecuted since they find Lyme....on the other hand, maybe they find it too often?  I dunno.  They are a CLIA certified lab, for what that is worth.  They did find me positive, and I did have Lyme, when standard testing is negative on me, and I have it in my chart that I had acute Lyme, diagnosed by a physician....so, I in my case....they did right by me.

So, we KNOW I had Lyme.  The entire clinic was called in to look at my EM rash.  I know I had a tick bite, and I live in an endemic area for Lyme....

When I started my second round of IVIG after being off for 2 years....OMG, during the loading phase...I puked, I had migraines...I ended up in the ER.  I thought I would die.....I can't take benadryl due to severe movement disorder.  Once for my puking they gave me Zofran and OMG....I ticked for a day...it was awful.  So, I don't premed except for Tylenol.

Now, since that loading is over, I have not had issues except for once.

IVIG is HARD to get.  It is very expensive.  If you have these issues, it may be best to try to stick it out for a while if you can....but, it is your decision.  IVIG is not usually given for Sjogren's.  They must be concerned about your immune status, and/or your neuropathy.

I am on IVIG for neuropathy.
Title: Re: IVIG and Sjogren's??
Post by: navydad 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,
Title: Re: IVIG and Sjogren's??
Post by: susu 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?
Title: Re: IVIG and Sjogren's??
Post by: irish on August 19, 2010, 04:04:25 PM
The IVIG lasts abouat 3-4 weeks. Irish ;D
Title: Re: IVIG and Sjogren's??
Post by: susu 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.?

Title: Re: IVIG and Sjogren's??
Post by: susu 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.
Title: Re: IVIG and Sjogren's??
Post by: irish 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
Title: Re: IVIG and Sjogren's??
Post by: gurs 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
Title: Re: IVIG and Sjogren's??
Post by: navydad 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
Title: Re: IVIG and Sjogren's??
Post by: inga 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.
Title: Re: IVIG and Sjogren's??
Post by: navydad on August 21, 2010, 07:32:36 PM
I had dryness before IVIG also,,, but still neg bloodwork
Title: Re: IVIG and Sjogren's??
Post by: irish 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
Title: Re: IVIG and Sjogren's??
Post by: LizPetillo 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. 
Title: Re: IVIG and Sjogren's??
Post by: gurs 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
Title: Re: IVIG and Sjogren's??
Post by: susu 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?
Title: Re: IVIG and Sjogren's??
Post by: gurs 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...
Title: Re: IVIG and Sjogren's??
Post by: denisezesh 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
Title: Re: IVIG and Sjogren's??
Post by: susu 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.     
Title: Re: IVIG and Sjogren's??
Post by: gurs 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

Title: Re: IVIG and Sjogren's??
Post by: susu 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?
Title: Re: IVIG and Sjogren's??
Post by: irish 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
Title: Re: IVIG and Sjogren's??
Post by: gurs 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
Title: Re: IVIG and Sjogren's??
Post by: susu 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?   
Title: Re: IVIG and Sjogren's??
Post by: inga 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.
Title: Re: IVIG and Sjogren's??
Post by: irish 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
Title: Re: IVIG and Sjogren's??
Post by: gurs 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
Title: Re: IVIG and Sjogren's??
Post by: inga 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. :-\
Title: Re: IVIG and Sjogren's??
Post by: susu 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?       
Title: Re: IVIG and Sjogren's??
Post by: inga on September 02, 2010, 04:27:48 PM
I am on Gammagard 10%....it comes in a 5%.
Title: Re: IVIG and Sjogren's??
Post by: susu 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?   
Title: Re: IVIG and Sjogren's??
Post by: irish 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.
Title: Re: IVIG and Sjogren's??
Post by: bark on November 15, 2010, 05:51:17 PM
After having Sjogren's diagnosed for 6 yrs, I developed hypogammaglobuilinemia and low IgG- thus CVID.  I started on the IVIG- gammaguard  in march 2010 and had worse reactions with each infusion: fevers, headaches, then also developed higher fevers and nausea with infusions, and red streaks on my arm for days.  I stopped the monthly IV infusions and switched to weekly subQ infusions, I am now taking hizentra.  It works great.  I was really afraid of it at first.  A visiting nurse teaches you and you eventually do it on your own.  I have not had any abnormal reactions with the sub Q.  Some do not even premedicate with benedryl, I do premedicate with 25mg orally, but it is nothing like the dryness I had with IV benedryl premedicating with the IVIgG.  Hope this helps.
Title: Re: IVIG and Sjogren's??
Post by: Linda196 on November 16, 2010, 03:54:17 AM
Hello Bark, welcome to Sjogren's World. Thanks for sharing your experience with SubQ IG. It seems we had a question about it a while ago, maybe if you use the search feature at the upper left, you can find the thread and the members who were curious about it.

Please feel free to browse the topics, and when you are comfortable with us, maybe you can start a topic about yourself as an introduction.
Title: Re: IVIG and Sjogren's??
Post by: gurs on November 16, 2010, 04:07:17 AM
Bark,

Glad you wrote in. I had a few gammagard IVIG infusions, and like you, had worse reactions everytime I got them. Did you have the powder or Liquid?
I was supposed to have one last weekend because my doc said that the powder would be better for me, but I chickend out and Im glad I did.
Going to research this more...

gursie
Title: Re: IVIG and Sjogren's??
Post by: inga on November 16, 2010, 05:27:46 AM
I think the IVIG solution must be a personal fit.  I use Gammagard 10% and do fine....maybe ask to try other kinds.   I would not mind trying the 'new' one that is out.

Streaks on your arms is pretty odd.....makes me wonder if they caused an infection when doing the IV.

I had one fairly mild 'allergic' reaction, which was kind of scarey.  I had a few headaches which landed me in the ER (full blown migraine like things.)  Other than that, so far so good....

It is not an easy decision.

I did not have any miraculous type cure.  I can feel areas that at one time were far more numb, but the response to IVIG can take a long, long time and be less than impressive in neuropathy.  In MG, it is usually very quick, but in PN it takes a long time from what I read.

Sometimes progress is not getting worse.
Title: Re: IVIG and Sjogren's??
Post by: irish on November 16, 2010, 01:38:35 PM
I just wanted to mention something that I learned in the past couple of months. One day I didn't take my zoloft in the morning prior to my IVIG and IV benedryl. I did not fall asleep that day. Makes me wonder if some of you with the bad dryness issues are on a med that might be a bad mix with the benedryl. Might need to do a lot of research to figure that one out. I just lucked onto this and know not to take it anymore. IRish