CIDP - the FLU - and PN????
 

I know several of you have CIPD - but others may be able to help too - help? I didnt get a flu shot this year (usually did until IVIG - and helped immensely) - this year my IVIG was stopped mid-year by in insurance company and I was going to try to get a shot - but instead got the FLU big time - sick a week today - high fever for over 5 days - now in chest and head, less then zero energy, etc.... an infection like this triggered my PN in the first place... and I'm getting scared - I cant take any extra supplements cause I'm still on only Ensure diet so I'm losing weight and getting down couple Ensure and some broth a day - but gut cant handle any more..... I have some stomach tests coming up that hopefully by next week will be able to go to and tolerate - and looks like I'll be able to start up IVIG end up January - but have to get thru this first.... could this type of infection trigger an acute reaction in someone already with CIDP? (GBS?)

Any thoughts????:confused:

A good question!
 

It is confusing as some sources are encouraging flu shots now [but not live vaccines] for those on Immune Therapies. Quite a change as it's always been a no-no up until now.
I've not found much in print on it tho, just references to it on other boards. SOO I called my pharmacist and asked. She's going to look into it and get back to me. She has access to those good resources us mortals can't get to. I'll let you all know as soon as I do! - j

Even with the flu, a fever should not last over 3 days. If it is in your chest, you need to see the doc. No matter what chronic disease you have, flu and pneumonia pose serious risks.

I am still in shock your IVIG was stopped.

This is typical stupid medicine.

'They' want to save money and it will cost 'them' a lot more to get you well.

I think a chest x-ray is in order to make sure you do not have pneumonia, a frequent sequela to flu.....you need, at least, an extended visit to the doc...

And if you can not get transportation, I would assume it is getting to the point of being an emergency....you know where I stand on this, kmeb.....

Can your doc order a home health nurse to come see you??? Stat? He/She can assess your lungs and your condition and make sure you get the care you need.

This is just a general advisory....for those for whom a flu shot is recommended....go get it....same with a pneumovax....they did not make an issue over flu vax this year and I do not know why.

Also, carry around those alcohol gel bottles, keep one in the car, pockets etc...can u imagine what lurks on the handles of a shopping cart!

Smear your steering wheel and dash knobs and handles. If you are in a cold climate, you can keep those little gloves on as much as possible....

A really good HEPA filter, this is a good one, will capture viruses...they capture all bacteria, but they also capture airborne viruses. I run one in the winter and I have not been sick with infection since 2002. Good ones run roughly $100 for roughly 1200 sq. feet of coverage, and check the square footage they cover. This is not some fancy ion thing...this is just a HEPA air cleaner...they are fairly big, about 18" in diameter, and kinda loud. They come with a prefilter and a HEPA filter...the actual HEPA refill is pricey, but worth it. For those with dry eyes...keep it out of your bedroom or far from where you spend time, as it blows.

Keep hands away from mouth, nose and eyes.

When you wash your hands at public restrooms, use the paper towel to turn off the water and then to open the door to get out....if there is no waste basket near the door, find the nearest one and deposit the paper towel there...if they use hand blowers, tuck your hand in your jacket or shirt sleeve and handle the door that way. If you have the option of pushing a door, do it with your back or fore arm.

They are recommending folks buy head lettuce instead of leaf lettuce and head lettuce, you can rip off the outer leaves and inner leaves are less likely to have e-coli.

Small steps, but they help hugely.

BTW, I am not a clean freak...I live with 3 dogs and 2 cats, a snotty nosed, constantly coughing DD kid (that I love) and I am not a fastidious housekeeper. In the summer I dig in dirt ( a mud puppy)....I live where manure is travelling by in a honey wagon every 15 minutes, and it is airborne in the dirt that gets kicked up in the wind.

I just think folks can prevent catching some stuff....if you are immunocompromised wear a good mask....that is life if you are vulnerable. N-95 masks are the best...can be bought on line.

Oh, and the easiest place to catch something is the doctor's office, clinic, hospital, airport, airplane, or a school.

kmeb---I have a hunch some one brought this to you, as I don't think you have been out much....when you are in outside contact---wash hands and keep them away from your face.....you are so vulnerable right now!! Delivery people are all over the place, exposed to everything and they can carry everything. If your air system is shared with other apartment...yes, it comes thru the vents!! A HEPA in you apartment will help that.

Call that doc and tell them exactly how sick you are!!!!

The other issue is...is this infectious or is something else going on...call the doc and be loud and clear....ask to talk to the nurse...and see if homecare can be started, as you are homebound and in need of skilled care.

Wonderful post, Cyclops
 

Kmeb,
I agree with Cyclops. Get to your doctor as soon as possible if you are still running a temp after this length of time.

I was advised to get the flu shot even tho I'm on Methotrexate and Humira. I was told to just not let them use a live virus.

Billye

I just posted
 

and it dissapeared - anyone see it?

Thanks for encouragement - spoke to doc yesterday - my chest isnt too congested - and he said expect long recovery due to my already compromised state - however, if makes any worse movement into chest 911 it... which I"ll do... and, have tests on Monday so will make the ride take me to urgent care if not feeling any better by then....(I lost an immediate and healthy family member to pnuemonia from the flu in a few days and know how fast it can kill)----- promise to be diligent.....

I do try to be very careful when I go out - which is only to docs - even just getting my mail wash my hands when I get back to apartment - lots of sick kids in the building.... I really think this hit me so hard was no flu shot, and again, no IVIG...

Its looking like I can start IVIG end of January if all goes as planned - I'll hi-jack my own thread - but under Plan D - while a company cannot change its formulary mid-year it CAN change its contracts with pharmacies - so the company I was with dropped all the home care agencies and told me to give myself IVIG - uh huh.... really underhanded practices going on that those who arent dealing directly with Medicare will never have to deal with and consider yourselves very lucky!!!!!!!!! GGGRRRR

Anyway, hanging - hope all are well....

While I'm not on Medicare YET????
 

I have noticed that particular 'qualifying phrases' are being 'inserted' hither and yon about formulary issues in each year's plan change updates. While my insurance is pretty good, I always SHIVVER when I read such phrasing. Once we sign a contract we shouldn't have to fear that old OH MY! We've changed our minds kind of mentality...at our expense.
Granted, costs, availability of resources and a slew of other issues we probably don't want to know about come into play... But, Gee folks...You hang us up like wet laundry out to dry during a blizzard? I better stop, might get all political or something... Sigh! - j

PS: Kmeb, how are you doing today?

Dahlek
 

Well, I'll tape my mouth shut (or in this case curl my fingers NOT to get political).... I'm still fighting - very very weak and just looking at some blood test results I had done just before I got sick - a few things really out of wack - so gonna look around the net and see the heck could be going on - then will be prepared when see doc.....:confused:

Medications for Flu
 

Sounds like you need to get thee to the doctor, but...some info anyway:

There are antivirals that should be taken even after the flu begins for people who are vulnerable to problems, and for anyone who wants to get back to work earlier. It's recommended they be taken early in the course

The oldest around is Symmetrel, and old-time med for parkinson's tried and true, which decreases the length of the flu episode.

This is what the CDC recommends:

* Influenza antiviral medications should be started as soon as possible after symptom onset. These medications have not been shown to be effective if administered more than 48 hours after onset.

* Oseltamivir is approved for treatment of people 1 year of age and older. Tamiflu
* Zanamivir is approved for treatment of people 7 years of age and older. Relenza

* The recommended duration of treatment with oseltamivir or zanamivir is 5 days.

http://www.cdc.gov/flu/professionals...als/agents.htm

kmeb:

Did you say someone told you to give yourself the ivig??

Is this true?? I am struck dumb. And nothing strikes me dumb, believe me.

mel

Stuff
 

LJ - thanks for info on the flu meds - my doc had put me on tami-flu - but was 5 days into fever already - yesterday was first day I felt like a had any energy again after 10 days of being sick (had a CT scan yesterday on my guts, some very estoteric bood work I've never heard of - anti-b's for my guts - plus had basic blood done by chance just before I got sick and then again yesterday - havent seen final results of course but the first round of blood showed very high cortisol, low thyroid, creat off, monocytes - not sure what all this will show but see the doc couple days after Christmas to get his take)...... In any case - just seeing the cortisol, thyroid numbers from what I've learned on this site could explain much about the extra exuastion I've been feeling lately - we'll see.... :confused:

And Melody - yes - I was told to give myself IVIG - unless you get to a very high level of pharm people at a drug plan - they think its a pill or shot you just pick up at the pharmacy.....!

should run the tests again..
 

infections throw all the numbers off. High cortisol is stress reaction to fever,
low thyroid occurs when trauma or serious illness, elevated monocytes may mean mononucleosis-- you should get a mono spot test for this.

Mono drags on for a long time. There is fever, sore throat, and fatigue.
Do you have swollen lymph glands in the neck?

If it is mono there is no treatment except support. You might try Cold Eze lozenges, they have zinc and really help with sore throat etc. They sort of affect taste buds for a day or two however, but I get good results with them for viruses.

I hope this passes quickly for you! Take care!

Mrs D
 

Hi - the tests that I've seen so far were done week before I got sick! But had been feeling very more tired then normal for about a month - so maybe theres something already going on I didnt know about......

Thanks for good wishes:)

Mono is confusing...
 

When I was young, I had a severe case of it. For two weeks I had a 104 fever that spiked and crashed and was very sick. I went back to college (it was Xmas) and they did a mono test and I was very positive. Then the sore throat came, after the fever stopped, and they put me off saying it was common and viral.
Well, it was STAPH and I finally made them culture it. Seems that the virus weakens you and you get opportunistic infections any time during the course.

My son's mono 4 yrs ago was much milder. He did not have the fever, but after about 2 weeks of feeling terrible, his throat swelled up. It was May and he had
just come home for the summer, so I sent him to my doctor. She thought mono right away, and did a mono spot...but his throat was a mess. No strep or staph in it but she gave him Amoxicillin and that knocked it out. He was really tired for the whole summer and part of the fall, however.

Mono is very debilitating.

And any severe infection will throw off the blood work for a while.
If you have EBV/mono, your liver functions may go crazy. My son's were terrible for over 6mos, and he had to cancel plans for the wisdom tooth extraction he was planning. Doctor wouldn't let him do it.

IVIG & Vaccines?
 

My pharmacist got me the answer from the IVIG pharmacist at the manufacturer of my brand.
Inactive vaccines are OK, and don't pose a threat to IVIG effectiveness or reactions. Live vaccines are a no-no tho. Soo measles, mumps and rubella are not to be taken without a 6 month wait after the last IG infusion.
Does this answer the question? I sure hope so... tho for you Kmeb, it's almost moot at this point, isn't it?
Hope you are feeling better - j