Author Topic: IVIG and Sjogren's??  (Read 7513 times)

susu

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IVIG and Sjogren's??
« on: August 18, 2010, 05:11:06 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
 

susu

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Re: IVIG and Sjogren's??
« Reply #1 on: August 18, 2010, 05:18:10 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.

inga

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Re: IVIG and Sjogren's??
« Reply #2 on: August 18, 2010, 07:09:42 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.

susu

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Re: IVIG and Sjogren's??
« Reply #3 on: August 18, 2010, 08:21:59 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?

anita

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Re: IVIG and Sjogren's??
« Reply #4 on: August 18, 2010, 08:38:52 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.


50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

inga

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Re: IVIG and Sjogren's??
« Reply #5 on: August 18, 2010, 09:09:02 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.

susu

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Re: IVIG and Sjogren's??
« Reply #6 on: August 18, 2010, 09:54:54 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?

susu

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Re: IVIG and Sjogren's??
« Reply #7 on: August 18, 2010, 09:58:44 PM »
Thanks for info on the other tests.   Will research that.   I have had some neuro testing. 
I'll come back with that info.   

irish

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Re: IVIG and Sjogren's??
« Reply #8 on: August 19, 2010, 01:49:46 AM »
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

gurs

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Re: IVIG and Sjogren's??
« Reply #9 on: August 19, 2010, 06:52:10 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
50 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

anita

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Re: IVIG and Sjogren's??
« Reply #10 on: August 19, 2010, 07:00:57 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



50 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (PID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Nitro, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Oxycontin, Zofran

LizPetillo

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Re: IVIG and Sjogren's??
« Reply #11 on: August 19, 2010, 07:06:02 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. 

navydad

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Re: IVIG and Sjogren's??
« Reply #12 on: August 19, 2010, 09:56:39 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,,,

gurs

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Re: IVIG and Sjogren's??
« Reply #13 on: August 19, 2010, 12:46:01 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
50 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 #14 on: August 19, 2010, 01:59:52 PM »
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.