IVIG

[navydad]

drove to Pittsburgh yesterday,, and got my IVIG treatment,, took a little over 4 hours,, on the way home I was trying to pull out from a stop sign,, pushing teh gas pedal and car would not move,, took me a minute to realize that my foot wasent pushing on teh gas pedal at all,, it just felt like it was,, as teh evening went no,, I jsut felt sicker and sicker,, never had this reaction before andhad to cancel todays infusion,, it was to far to drive and stikll feeling sick,, I also had to go to the hospital this moring for bloodwork and xarays of my abdomen,,, from this stool thing,, I dontknow whats goingon,, my head hurts constantly,, and i am so tired of this numbnes and lip burning,, I knowits a neuropahty,, but I;m tired of it,, bowel movements have really slowed down,, and I guess I just have to wait for the gastro to see the labs and xrays,,

[rnathans]

Is there any way to get the IVIG closer to home? That is way too far to drive yourself in your condition. I go just 1 1/2 hrs to see my neuro ( and always have someone drive me) but I get my treatments locally. Do you live in PA and if so where? I have a wonderful neuro in Hershey.

[inga]

I go an hour each way and I have some one drive me.  I agree with you.  Your reaction to IVIG can differ with each infusion and you should have some one take you.

[Dolly Dimples]

 Hi Navy Dad, It worries me that you drive yourself to these hospital visits!
      In your condition, I think someone should take you.

     Im sorry you diden't make it today for Infusion, maybe you are giving your body too much to cope with at a time.
      Don't you have Ambulance to take people to these hospital appointments .

  If we in the UK are too ill to travel or drive, then we can book an Ambulance there and back.
             It seems you lot travel miles and hours to see your Docs..

      I'll never complain about  our National Health Service here..

  I hope you get all your results soon, and that at last they can get you seen to.
                                                                                                Take care  Dolly.             

[anita]

You might want to inquire with your insurance company about home infusions.  I received IVIG for 11 years and the insurance companies used during that time (both Aetna and BC/BS) actually preferred infusions be done at home since the cost was less (considerably).  I'm serious.  I actually had to get additional approval every 3 months to have the infusion in the doctors office (so doctor could observe, adjust dose, etc) because it was over $2000/dose more than the same infusion at home with a qualified home IV therapy nurse.  My infusion would take 6-8 hours because my body could not tolerate more than a rate of 60ml per hour.  At home, I could rest or sleep during the infusion and only had to worry about getting a ride every 3 three months.  It can't hurt to ask.  You can also ask your doctor's office for assistance with this...they know all the ins/outs of getting authorization with insurance.   If the insurance co. says no, then by all means get someone to take you...not only for your sake but also others on the road.

Good luck.  Hope it works out for you.

Anita

[irish]

navydad, Did they teach you about the side effects of the IVIG??? I would hope that they had told you to tell them when you get a headache in the back of your head during or after the IVIG. I am assuming that you are getting premedicated with benedryl, cortisone--both IV plus many palces will have you take tylenol also.

The main thing that helps with these IVIG headaches is to make sure you are hydrated and to drink plenty of water during the infusion. When a person doesn't drink enough the side effects seem to show up.

Also, are you getting anywhere with the stomach issues. Has anyone done a flat plate of your abdomen just for the heck of it? This is a plain old x-ray of the abdomen so they can see if your stool is blocked up or if you are full of gas or if there is a slight leakage of the colon that can cause air in the abdomen. People with diverticulum can have them leak and have issues.

Also, I don't know how much flax seed you ate but I would think that if one has a slow moving colon and isn't drinking enough there could be a constipating effect from the flax. Say, are you taking any pain medications that could be slowing your colon down? Also, the antidepressant drugs are notorious for causing constipation. Helps to take stool softeners and milk of magnesia I think. Plus stay close to the bathroom til you get cleaned out. Has anyone ever tried doing things that would empty your colon? Sometimes after this is done things start to work better. Maybe you need to talk to your GI doctor about enemas? Just a thought. Irish

[navydad]

they give me nothing before starting, just stuff it in me and crank it up,, and yes I had a flat panel xray done yesterday,,

[anita]

Navydad,

Irish made some good points.  I cant believe you're not pre-medicating with solu-medrol, benydril, etc.   This is not a medicine to mess around with.  The way you describe the level of care you get (from all your doctors), I don't know if I would partake in a treatment of this magnitude.    Changing brands, rate, etc can all have serious side-effects.  Reactions can happen at any time regards of how long you've been getting infusions.  Heck, I got a very severe case of aseptic meningitis from IVIG after 11 years of use and can never have it again now.  Do not underestimate this drug and it's potential side effects.  Sounds like you will have to be proactive (an understatement) in regards to your care, doctors, and getting to/from your appointments.    Doesn't sound like you've ever been pleased with your local doctors.  Maybe it's time you head to a bigger facility with more expertise.  Hopkins is within a few hours of you, isn't it?  You've mentioned your family's support, so I'm sure they would help you get to better care. 

Let's hope they get back to you quickly with the results of the GI xrays/scans and blood work...and some answers.

Anita

[navydad]

We had hoped that the Doctors in Pittsburgh would have provided some answers,, but they havent,, sems like every dayt I just fall al ittle farther,, my stomach is a mess,, the neuropathy just seems to get worse,, last night it felt like a gun shot went off in my left ear,, woke me up,, I have been having problems with my sinuses for so long and it just feels like the left side of my mouth and face is rotting out,, there always numb,, and taste rotten,,

[gurs]

Navydad,

Think I warned you about this...I had the SAME reaction to the IVIG..though, 4 hours is quite fast and they didnt pre-med you? we have to be our own advocates and be prepared
before you have this stuff done? They dont care...seriously....? I ended up bedridden for 2 months after mine ,and a few hosptial visits including spinal tap to rule out meningitis...NIGHTMARE..I was even prepared..very low dose, ran slow, medrol infusion, tylenol and 3 hour saline run afterwards. Seems our bodies are the same..including the stomach issues..but, Im guessing the stomach issues are stemming from your neuro issues. I have the same thing. I have to use a colema enema board to go to the bathroom, or i wouldnt be able to go at all. I cant take laxatives, they make me sicker.
I would have course have a colonoscopy, upper GI and other tests to rule out any blockages, but Im still guessing its the gastroparesis stemming from the neuro issues
your having. Make sure your not taking loads of extra fiber either, will make it worse..its not constipation...gastroparesis is another ballgame! Ask the doc if you
can try some reglan or something? I had bad side effects from the reglan, so I cant use it. Feel so bad for you!! hope your feeling better

[navydad]

I;m not sure what in the world goes on in hte infusion centers I have had to go to,, oh there ready for a adverse effect,, but all they seem to do is monitor your temp and blood pressure during the whole infusion,, I had one bad reaction at another place and they were quick to stop teh infusion,, and med me,,

  Last year in a attempt to slow the neuropathy,, they had me do 3000mg of steroids over the course of three days,, I drove myself to all three infusions,, by the third day Ihad no clue who I was,, where I was and how to get home,,, and they knew I had drove myself,, I had this happen after a spinal tap,, they knew I was alone and they let me go after laying on my back for two hours,, I just dont know about the way medicine is practiced here in western Pa,, its surreal

[gurs]

I think this happens everywhere....I had reactions at two different hospitals. I just know, the slower the infusion the better, almost double the time as a standard patient.
Saline is a must for us sjogrens people. I know Rituxan, they can run it with the drug, where as IVIG, they had to wait until it was over to run the saline.
I still felt ill on both around 1 hour into them...my neuropathy actually felt worse..then, a few days later when the medrol wore off, I was very ill. I had to stay
on some Medrol tabs, and havent been able to get off of it still. Prob is our bodies just cant handle all this stuff it seems. I just know to read the doctors orders first and
make sure they have/do everything. The pre-meds especially. Wish you had some more support from home. Everyone treats this like its nothing because we dont
have Cancer or something. Really bothers me too. My mom has friends going through chemo right now that feel better ,and has more of a life than I do? go figure?
This disease is horrible!!!!

[anita]

Navydad,

Since you have doctors that are willing to order these very expensive and powerful meds (IVIG, Rituxin, and IV solu-medrol over 3 days), then ask them to state you are homebound.  If your insurance pays for these meds, then they would have no problem paying for home health (because it's cheaper).  Not only will this solve your driving problem to these treatments, but you will also receive one on one care from a nurse in your home.  With the severity of your reactions, you would benefit from in home care.   Sounds like you could use a break and this is one way to get it. 

[Epson]

Do you folks that have IVIG therapy feel that this treatment works well enough for all the trouble and expense.

[jstroble]

Hi Navy Dad

I am so sorry that you are having all these problems.  I wish I had a suggestion to help you but I don't.  Just know that you are in my thoughts and I hope things take a turn for the better soon.  You have had enough for a lifetime. 

Warm and healing thoughts are being sent your way. 

Joyce