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JJ_BPK
04-01-2013, 11:31
I have held off posting this as I didn't have much in the way of real data to ask any questions.

Background: My wife started falling in early December, By January she was using a walker, By February she could not walk.

She has not been sick nor suffered any accident that could have injured her spine. She is not over weight, no heart, cholesterol, or sugar problems.

We have been to several doctors, many test, and still no idea what is causing the problem.

At one point the theory was West Nile Disease, but that proved false. The local health department test her blood and think she may have had some sort of low level WND at some time in the past, but no active pathogen were found.

We do know it's NOT ALS, MS, NPH, and not blood borne. She had breast cancer 8 yrs ago and all the tags show negative relapse or recurrence.

In early March they did a lumbar puncture and noted the protein level above 800 and red blood cell count above 30. She received a series of drip infusions for 5 days, not unlike chemo, based on the early readings of the lumbar puncture.

Today they THINK the cause is CIDP.

After reading the web, it seams CIDP is rare and not a lot of good prognosis.

Does anyone have any insights, pointers, or experience??

Thanks in advance..

Eagle5US
04-01-2013, 14:57
Sorry to hear your bride is ailing buddy.

Will keep positive thoughts headed the direction of your family. This is far outside my scope.:(

Joe

JJ_BPK
04-01-2013, 16:05
I do recall that the cytotoxic immunosuppressants used during bouts were a butt kicker, but seemed to lessen the damage.

ivig

Thanks Guys..

I don't know what the 1st IVIG series consisted of, but they did give her tylenol & benadryl 2 hrs before the drip.

cytotoxic immunosuppressants: will do some homework.

As her doc(s) show up at all hours, I have yet to talk to the current set at the rehab-hospital. I ask that she get a printed assessment of how they determined it was CIDP and what their plan for treatment is..

They did tell her this afternoon, that she has make good improvements and are guessing 80% restoration, at this point..


The big salvation is Jean has a very very good altitude, always smiling..

I'm the worry wart...

Again thank you..

Sdiver
04-01-2013, 16:23
They did tell her this afternoon, that she has make good improvements and are guessing 80% restoration, at this point..

That is GREAT news !!!!! :lifter


The big salvation is Jean has a very very good altitude, always smiling..

Of course she does .... she's the wife of a QP. :D

Thoughts and prayers continue to come inbound to you and your bride.

..... and maybe a box of Benadryl or a bottle of Scotch to you, to help calm your nerves. ;)

PedOncoDoc
04-01-2013, 16:34
I don't know what the 1st IVIG series consisted of, but they did give her tylenol & benadryl 2 hrs before the drip.

Did you mean 1st IV medication series or first IVIG series? Regardless, you probably are saying the same thing: The most common treatment for CIDP includes IVIG infusions - IVIG is IntraVenous ImmunoGlobulin, also known as pooled antibodies. We use this treatment in a few autoimmune/immune-mediated conditions with fairly good success. Most papers site good responses to up-front therapies - theyse are typically IVIG, systemic steroids, and/or plasmapharesis. There are other therapies that are being investigated and have had some initial success that she may benfit from if not responding well to standard treatments.

Quick heads up for you - IVIG can cause a reactions in some people, hence the tylenol and benadryl pre-medication. It can also cause bad headache (sterile meningitis) in some people, so if she's having headache call up the docs - this will typically get better in a few days, but she would likely benefit from some good pain meds while its quieting down.

Praying for a good and sustained response.

HTH,
POD

JJ_BPK
04-01-2013, 17:41
Did you mean 1st IV medication series or first IVIG series? Regardless, you probably are saying the same thing: The most common treatment for CIDP includes IVIG infusions - IVIG is IntraVenous ImmunoGlobulin, also known as pooled antibodies. We use this treatment in a few autoimmune/immune-mediated conditions with fairly good success. Most papers site good responses to up-front therapies - theyse are typically IVIG, systemic steroids, and/or plasmapharesis. There are other therapies that are being investigated and have had some initial success that she may benfit from if not responding well to standard treatments.

Quick heads up for you - IVIG can cause a reactions in some people, hence the tylenol and benadryl pre-medication. It can also cause bad headache (sterile meningitis) in some people, so if she's having headache call up the docs - this will typically get better in a few days, but she would likely benefit from some good pain meds while its quieting down.

Praying for a good and sustained response.

HTH,
POD

This is probably the IVIG she had. I ask if it was like chemo and was told it was similar. I was not there for the treatment, but I did sit thru all her 4 hr bi-weekly chemo(s) when she had breast cancer. They let me do the post chemo shots, at home, as it was a daily 60 trip.

An RN did sit with she for the 1st 3hr? IVIG session. I assume they were watching for reactions. Fortunately there were none and no post treatment headaches, again I was not there. .. :lifter

Today the doc told her the next step IF NEEDED is some sort of blood therapy? They take blood out, infuse it??, then put it back?? Sounds like it may be plasmapharesis ??

PedOncoDoc
04-02-2013, 05:12
This is probably the IVIG she had. I ask if it was like chemo and was told it was similar. I was not there for the treatment, but I did sit thru all her 4 hr bi-weekly chemo(s) when she had breast cancer. They let me do the post chemo shots, at home, as it was a daily 60 trip.

An RN did sit with she for the 1st 3hr? IVIG session. I assume they were watching for reactions. Fortunately there were none and no post treatment headaches, again I was not there. .. :lifter

Today the doc told her the next step IF NEEDED is some sort of blood therapy? They take blood out, infuse it??, then put it back?? Sounds like it may be plasmapharesis ??

IVIG is different from chemo in that it does not kill cells. She should not lose her hair or have significant drops in her blood counts. She also shouldn't need any shots after IVIG therapy (I assume you're referring to Neupogen, Neulasta and/or epogen).

I concur - sounds like the next planned treatment is plasmapharesis/plasma exchange based upon the doc's statements.

Rocky36
04-02-2013, 12:02
I have been cleared to post, earlier than usual, because I have some information you do need to know.

Let me introduce myself. I am not military, tho' my father was WW1 infantry and my brother was WW2, Korea, VietNam AF. I learned of your wife's situation because I subscribe to a Google notification of posts regarding Guillane-Barre/Chronic Inflammatory Demyelinating Polyneuropathy.

Yes, plasmaphoresis would be a step. If there is improvement prior to that, perhaps they might suggest a period of time on a maintenance dose of gabapentin [the generic of Neurontin].

What I must get across to you and your wife ... it is not horrific coincidence that she had to deal with breast CA and now has to deal with CIDP.

"Been there; done that". Apparently my immune system went into overdrive fighting the tiniest of beginnings of breast CA. The CA was found and surgeries performed. [Yes, as Christina Applegate, the actress posted, I will have the perkiest breasts at the bridge table in the nursing home.] Some time later I began to lose feeling in my feet except for needles sticking into toes. Then came the electrical zaps from fingers to shoulders. My neuro sent me to her neuro "guru" in Houston and after testing, yes I have CIDP.

At the moment I am off all medication. Four years later I am stable, tho' not cured. I have residuals, but not unmanageable ... I do hike, for instance. Yes, there can be, and usually are, relapses, but in my case more fatigue and feet than anything else.

So there is definitely hope. And do understand that a very good immune system fought that nasty breast CA as long as it could. She should be very proud of her outstanding immune system!

Sorry I went on so long,
Rocky


This is probably the IVIG she had. I ask if it was like chemo and was told it was similar. I was not there for the treatment, but I did sit thru all her 4 hr bi-weekly chemo(s) when she had breast cancer. They let me do the post chemo shots, at home, as it was a daily 60 trip.

Today the doc told her the next step IF NEEDED is some sort of blood therapy? They take blood out, infuse it??, then put it back?? Sounds like it may be plasmapharesis ??

Trapper John
04-02-2013, 13:11
JJ I am truly sorry to hear of your wife's condition and I know how confusing and frightening this for the both of you. She sounds like a true SF wife and my best to her Brother.

The other reason that I am replying here is to say that, as a medical research scientist, I reject the notion that there is such a thing as an "autoimmune disease". There are only diseases of unknown etiology that induce an "autoimmune response". The problem is that we tend to diagnose and (unfortunately) treat diseases as they manifest themselves, i.e. the symptoms of disease. Well, we have to call them something don't we? Unfortunately, this leads to symptomatic treatments.

Recent research is suggesting that these so called "autoimmune diseases", like Lupus for instance, are really the result of chronic infection or other injurious agents that results in dysregulation of the intracellular inflammasome signalling platform. One of the recommendations I made to my niece (suffering from Lupus) was take 4000 IU Vit D daily. Her symptoms subsided almost immediately.

I just returned from a conference on the inflammasome mechanism and disease and one of the case studies involved a related "autoimmune" neurological disorder and the treatment with Vit D. Again profound symptomatic relief.

I would ask the Docs here to opine as to the benefits they think your wife may have from Vit D's anti-inflammatory effects. If they do not see any contraindications, then she probably should try it.

As of yet, there is no cure, but trust me Brother, we are working on this and if there is a breakthrough I will be posting that here and sending you a PM.

Hang in there JJ our thoughts, prayers, and hard work are with you.:lifter

PedOncoDoc
04-02-2013, 13:36
JJ I am truly sorry to hear of your wife's condition and I know how confusing and frightening this for the both of you. She sounds like a true SF wife and my best to her Brother.

The other reason that I am replying here is to say that, as a medical research scientist, I reject the notion that there is such a thing as an "autoimmune disease". There are only diseases of unknown etiology that induce an "autoimmune response". The problem is that we tend to diagnose and (unfortunately) treat diseases as they manifest themselves, i.e. the symptoms of disease. Well, we have to call them something don't we? Unfortunately, this leads to symptomatic treatments.

Recent research is suggesting that these so called "autoimmune diseases", like Lupus for instance, are really the result of chronic infection or other injurious agents that results in dysregulation of the intracellular inflammasome signalling platform. One of the recommendations I made to my niece (suffering from Lupus) was take 4000 IU Vit D daily. Her symptoms subsided almost immediately.

I just returned from a conference on the inflammasome mechanism and disease and one of the case studies involved a related "autoimmune" neurological disorder and the treatment with Vit D. Again profound symptomatic relief.

I would ask the Docs here to opine as to the benefits they think your wife may have from Vit D's anti-inflammatory effects. If they do not see any contraindications, then she probably should try it.

As of yet, there is no cure, but trust me Brother, we are working on this and if there is a breakthrough I will be posting that here and sending you a PM.

Hang in there JJ our thoughts, prayers, and hard work are with you.:lifter

I'll second TJ's suggestion for Vitamin D supplementation. Plenty of medical evidence suggests improvement in immune regulation with appropriate Vitamin D stores and supplementation. We put all of our patients who recieve bone marrow trandsplantation on Vitamin D supplementation due to the medical models of its role in immune regulation and one of my collegaues is preparing a manuscript for publication on the benefits, especially in vitamin D deficient individuals (which includes almost everyone in Michigan in the winter).

The semantics around autoimmune disease can be discussed elsewhere, but I'll have to respectfully disagree with discrediting the term "autoimmune disease", since an autoimmune disease is simply a manifestation of dysregulation that culminates in the immune system attacking healthy tissue, regardless of the trigger.

JJ_BPK
04-02-2013, 15:19
Rocky, et All,,

gabapentin: Jean started that in January, just about as soon as we visited the 1st Neur-Doc.. No perceived help at all. Not sure if they are still prescribing it??

Vitamin D: Jean has been on 5000 IU daily for a couple years.

THANKS... :lifter

Rocky36
04-02-2013, 17:21
gabapentin isn't meant to "cure", but it does alleviate the symptoms.

Vitamin D is wonderful; just please don't overdo it.

Rocky

Rocky, et All,,

gabapentin: Jean started that in January, just about as soon as we visited the 1st Neur-Doc.. No perceived help at all. Not sure if they are still prescribing it??

Vitamin D: Jean has been on 5000 IU daily for a couple years.

THANKS... :lifter

PedOncoDoc
04-03-2013, 05:30
Drop me a line if your wife's not responding as well as expected/hoped. I''ve read up on some of the current medical literature and recent trial publications for CIDP since hearing your news. I would be happy to send a few CIDP treatment articles your way to discuss with your doc.

Treatments seem to parallel those for many immune-mediated complications after BMT, so I've used many of the newer treatment modalities myself.

Rockys is correct - gabapentin is supportive care, not treatment.

JJ_BPK
04-03-2013, 05:51
UPDATE: We have not found the cause for Jean's problem.

After a 6 month cycle of CAT, MRI, PET, XRAY, BONE, & blood tests we have found nothing. We have also consulted with the neurology & oncology Doc's at the Cleavland Clinic in South Florida and the Mayo Clinic in JAX,, NADA.. We tried a series of bi-weekly IVIG sets with zero results.

During this time we had 8 UTI hits that put her in the hospital, three of which were septic(sec). This past last week along with an UTI she had a SVT setback and spent 5 days in CCICU. She is continually tired, sleeping 22-23 hrs a day, but to date has had no pain.

Her condition has deteriorated to the point that as of today she is in at home hospice care. We do not have a time line. Could be weeks, days, or hours.

Thanks for all your prayers..

JJ_BPK
10-12-2013, 09:34
UPDATE: We have not found the cause for Jean's problem. .

I edited, instead of posted, Sorry..

The Reaper
10-12-2013, 11:15
JJ:

Prayers out, hermano.

TR

NurseTim
10-12-2013, 11:26
Prayer inbound, God bless you both and your family.

PSM
10-12-2013, 11:36
You, Jean, and your family are in our thoughts and prayers, Jim!

Pat

Cynic
10-12-2013, 13:25
Prayers of support for both of you. Stay strong!