IVIG Infusions

[Lazarus]

hi

Hi Gabriells,
I had several different brands over the years. You are right about the speed of the infusion. I seem to have a great tolerance for drugs and so I started out at 200 and kept it there for the 7 bottles that I got. (each bottle is 10g) The whole day took 8 hours if there was no hitch with the pump.

One of my infusion friends was also receiving IVIg for MG. We both spent long days at the center.

If the IVIg is ramped up to speed slowly you might avoid the headache. I was willing to accept the headache to be able to go home before dark!

When I did not get the premeds (we had to learn what I needed and once my nurse forgot them) I experienced violent, sustained shaking. I got so cold there was no way to warm me up and I had big trouble speaking or walking.

Best of luck

[Gabriella7]

I've only been given 40gms each time except for one time when I got 60gms for some reason. They always started me on a slow drip and ramped it up to 200max. Thanks for all the info especially knowing that you had different brands helps me as I was leary of change.

I'm still waiting for that phone call. I think I will go make another request with the nurses line for an answer and piss someone off today.

Gabriella

[Gabriella7]

Calls

Well it worked as it is Friday everyone is getting all the loose ends tied up. The gal that schedules at the infusion center called me back and I am on the schedule for next Tuesday, Wednesday, and Thursday. Then the nurse from the MS Center called me late in the day to tell me they had faxed the orders over yesterday.

My appointment with the new neuro is not until the 31st. I'll make a decision after I meet with him and visit the infusion center that he uses. It is 30 minutes closer to my home. They both use the same brand IVIG.

Gabriella

[Gabriella7]

Finished Today

Just a short report. I finished the day with a headache but it is because my sugars go so high. They kept the level at 110 so we know it's not the cause. I finished in 4 hours. The nurses are really great at this center so that will enter into my decision but I'm going on the 31st to meet the local neurologist as it would be helpful to get a second opinion and see how his office is run. Off to bed......talk when I feel better.

Gabriella:angel:

[Lazarus]

Good luck

It's good that things went smoothly. Keep us posted about the second opinion you get.

I'm having trouble with nasty side effects from ampyra but hope to straighten things out because with ampyra I am walking again. I bought a pedometer which goes in my pocket and I have been walking between one and two miles a day for the last 8 days! I ;ove my pedometer!

[Gabriella7]

Update

Well, If anything can go wrong it will. I finished 3 days of IVIG infusions on Thursday. Friday I was weak so I just rested most of the day. Friday night I got vertigo while in the bed, then the hard stomach cramps started. Next, I had diarrhea and after 3 trips to the toilet I was on the toilet and began to feel faint. I didn't want to pass out in the bathroom with all the hard surfaces so I managed to get out into my carpeted hallway before I passed out.

That was about 1:30am and I didn't know anything until my husband came out of the bedroom at 6:30am. He couldn't lift me up so I stayed down for another period of time while still having diarrhea and in and out of conciousness. Finally, I felt I could get up with his help and get to the toilet again. The rest of the day I just drank a lot of water and Diabetic Boost to try and treat what I thought was a "bug". I kept drinking water and Boost on Sunday but it was coming out about as fast as it was going in.

Monday morning I called my primary care doctor who told me to go to the ER. My husband drove me down and we waited 3 hours to get a bed in the ER. In the meantime, I was getting blood drawn, Brain Scan, EKG, Chest, Abdomen X-Rays, etc. After getting a bed they started an IV line for fluids and I got 1000 in the ER before being admitted to the hospital for another 1000. I was severely dehydrated. I missed the appointment with the new neuro. They did a culture and found I have an UTI. Tomorrow I'll followup with my primary care doctor to see which antibiotic he wants to prescribe.

The internal medicine specialist could not tell me if the IVIG Privigen was the cause or if I picked up a bug in the infusion center. She said the only way to tell is to get the IVIG infusion again in 3 weeks to see if it happens again.

The only thing I learned from this experience is to always be prepared to go to the ER at a moment's notice.

Gabriella:angel:

[Gary]

What does your PCP say about the Privigen? Reason I ask is I brought it up to my doc a couple years back and he said no way it was too hard on the kidneys and besides I am a Type II diabetic and use Insulin and am known to have my BP shoot through the roof (MS caused) he had talked to the neuro about it and the risks out weighed the benefits. My PCP said it could help but I would have to have the neuro do it as he wouldnt.

Just asking. :)

[Virginia]

Gabriella, that sounds like the night from h--l, to say the least.

I am sorry you missed the appointment with the new Neuro. I know you wanted to hear what he might have to say.

I would sure be dreading the thought of taking the IVIg again without knowing if I was going to have to spend another night like that, but I don't know what
choice there is.

Keep us posted.

Virginia

[Gabriella7]

PCP

Gary, I'm on insulin as well. My PCP is worthless and just refers me back to the specialist for answers. I only go to him for lab work as he is 10 minutes away and the hospital is 45. I am getting the IVIG treatments primarily for myasthenia gravis but you can "google" the topic as there are 9 different brands of IVIG and all have the potential for damaging the kidneys. IVIG treats a long list of illnesses and appears to be a good drug considering the alternatives. It just happens to be the only treatment for the MG that should help. There is also plasmapharesis...... another bucket of worms!

I can't take the oral meds as they are part of what caused the dehydration with several months of diarrhea before my neuro took me off. Privigen does not have any sucrose or sugar so it should be the best one for a diabetic. However, when I was on Gammagard which also has no sugars I never had any problems. Now the local hospitals are using the Privigen as it does not need refrigeration (a cost saving measure) and I can't get the Gammagard. The difference is the Gammagard does not have any stabilizers or preservatives and the Privigen does.

Virginia, you are correct.....It was a night from hell! I have an appointment with my neuro before I get another infusion to talk about it. I do plan on rescheduling the appointment with the new neuro when I can.

Gabriella

[Gabriella7]

Privigen Side Effects

I googled Privigen Side Effects and found all of the severe side effects that happened to me. So now I have to decide if I want to risk going thru another experience from hell or not. My husband is saying to stop the treatments and my oldest son is pushing me to continue. I will know what my doctor will recommend on the 15th when I have an appointment with him.

Since he probably doesn't even know I was in the hospital since I was admitted by an Internal Medicine doc I think I will send him a fax with all the details so he can be researching the subject before my visit. He is not experienced in treating this rare disease MG as I am only his 3rd patient with it. I have not found any specialist in MG in this area.

I am his lab rat......

Gabriella

[Virginia]

Gabriella, what a decision to have to make. I wonder if they would consider keeping you in the hospital until the side effects are over with. Hope your
Doctor will study up and have some good answers for you.

[Gabriella7]

No Followup

This is the first time in my life that I have gone to the ER for treatment for severe side effects from a drug. The nurse in the Internal Medicine office called me on Friday to tell me the culture did grow out E. Coli for the UTI. However, I would need to followup with my local PCP which I did and was told to followup with my urologist. Our medical system is so specialized that one has to have a specialist for each problem. My husband drove me in today for the followup urine culture and sensitivity test to see if the 3 days of antibiotics has cleared the infection.

I also had contacted my neurologist office on Monday since I did not see him in the hospital. A nurse called me back with 20 questions yesterday and really ticked me off. I was trying to determine who was going to followup what happened to me and it soon became apparent it was not going to be the neuro according to her. I plan on writing up everything that happened to me as it is clear to me it was the Privigen and faxing him before my appointment on the 15th so he can research and find the information that I found and hopefully know that I have got to have Gammagard and not Privigen. I will aso be reporting it to the FDA.

I am so tired of researching everything and getting the run around about getting the brand of IVIG that I need...... Why should the patient have to track down the medicine? This is the same nurse(?) that was going to order the wrong type of IVIG (Gammagard with sugar)until I called it to her attention that I am diabetic and could not take the brand.

Gabriella

[Virginia]

Tough time for you Gabriella. Seems to be no let up. I do understand about feeling that you have to go behind people in the medical profession and check
everything and catch what should have been caught in the first place. I have had to do that in a number of instances, and it does not sit well with me.

If I had to deal with something like IVIG I would be lost, but like many other things I guess I would just have to learn. I know it is not something you wanted
to have to learn about but unfortunately it is necessary for self protection.

Virginia

[stillstANNding]

Gabriella,

I am sorry that the "cure" is making you so sick. Also that the system to help you has so many roadblocks. I don't know how anyone manages when they are so fatigued to begin with.

Wishing you a better day and some headway on these problems.
ANN

[Gabriella7]

More Mess Ups

Just wanted to run this by everyone. I called on Wednesday to get a refill of Hydrocodone 5/500 as my neuro had put "no refills" on my last bottle. I have taken a pain med for the past 25 years for the pain of degenerative disc, spinal stenosis, and MS. As always I have to leave my message on the nurses line for a call back within 24 hours.

Yesterday, I spoke with another person to explain that I only had 2 tablets left and really needed the refill. She asked me what I was taking the medication for? She didn't know it is a medication for pain? Where do they get these people? I explained that I had been on this pain med for 10 years since I have been going to the MS Center and needed the refill as I am in daily pain. (Thinking of Dr. House going thru withdrawal) Of couse, I don't take them by the handfuls as he does and only take what is prescribed.

This morning another nurse called to tell me the drug store probably faxed it into the other office so it was automatically denied. Then she asked me if that is what they did! I said "How do I know what they did". (Duh!) She told me to call the drug store myself and get it straightened out as it is a controlled substance. It makes me wonder if.... they think I am out selling my hydrocodone to addicts. I did and was told it was faxed into the correct office. It did get straightened out and I had my meds by 12 noon. At least my weekend will be better.

The last nurse I talked to mentioned she did not have a prescription for me since she got the one for Gammagard IVIG. I asked her why I was now getting Privigen and she said they don't make Gammagard anymore! Thank God we have the internet now to do the research and find the answers as we can't trust our health care system with our health.

On Monday, I will start the search for Gammagard and begin by calling the company that still makes it. I am fed up with being told whatever is convenient for them even if it is a big fat lie!

Gabriella