update one week after ivig
 

Hi everybody, its been one week sends my ivig and i am starting to feel a little more better, Stronger and more energy. My chowing and swallowing are a little better and my legs are a little stronger too. I hoping i keep getting better as i get closer to my next ivig.

Hi AnnieB3, i read your reply.I been taking 20 mg of Pred, only for 1 month and 2 weeks. I talk to my neuro Tuesday, he said to go down by 5mg per week. So on Monday, i started taking 15mg. Interesting note, i am also B12 deficient. I get 1 monthly shoot and take 5000mg sublingual every day i wonder how many MGers are B12 deficient.

I hope everybody is having a goodday today

Francisco

Hi, I guess I'll do an update on my IVIG, too. I just had two out of three days, and, well, I haven't ended up on the floor today, for the first time in a couple of weeks. So I think I'm stronger already. I have a headache in spite of pre-medicating (ibuprofen), hydrating, hydrating and hydrating, and having them run it slow (75 ml/hour = 4 hours). But the headache is relatively mild.

I'm wondering whether it's normal to get so many failed sticks, or if I just have bad veins or bad IV nurses. Tomorrow I'm going to warm up my arms on the way over (with microwaved rice-filled cushions). Also, it's my regular nurse's day off, so I get the talented one right away, instead of having to wait until the less-talented one racks up her "three strikes."

If this course of IVIG helps me as much as the last one did, the plan is that I'm going to get a one-day booster as soon as symptoms start to return, instead of waiting until I'm really weak. I have high hopes for this new plan, since last time my symptoms returned gradually.

For anyone reading this who hasn't had IVIG, I want to repeat that this is my third course. My first course didn't kick in for more than a week and then only lasted for three weeks. But my second course kicked in almost right away and lasted six weeks.

Abby

Glad to hear yalls IVIG is helping!!! It really is amazing how all of this works, and how apparently mysterious it still is to the medical community- makes me realize even more how important all medical research is!!
I got my musk results today- negative.. but nerve/punch skin biopsies show neuropathy, and autonomic testing showed cardiac involvement - so who knows what I have ha! I now have the diagnosis of "inflammatory and toxic neuropathy"
I will be 3 weeks out on my IVIG tomorrow - and the last 2 days made it REALLy obvious to me just how much the IVIG helped! My speech has gotten worse, every muscle shaking again and swallowing odd again.. plus my right eyelid and below eyebrow is droopy! I'm not on any daily meds, but they are going to plan IVIG every 3 weeks, and add steroids or cellcept/etc to it if needbe .. So we'll see!! Is it normal to feel the IVIG "wearing off" like this? My body is wiped out suddenly!
GOod luck to yall!

Yes my IVIG usually last 6-8 weeks. I'm at my limit now. Just had a MINOR infection and it knocked me for a loop. For 2 days I could barely get up 8 steps. My blood sugars went nuts too. My neuro called me tonight so I'm going to talk to him in the morning and see if we can start another Ivig series. I went to my GP and got a round of antibiotics and the infection was gone in 2 days. I may start wearing a mask like Michael Jackson if these minor infections are going to be this bad.
Mike

Abby,

Have the nurse put the bp cuff on and tighten it up instead of using a tourniquet when finding a vein, in addition to warming your arms. Also, DEMAND the good nurse first time out--it is no big deal!

You probably just have crappy veins! I do. After a year, I got a port and things are much better. If you begin doing IVIG routinely, it's really the only way to go. You will need veins for many years, so no point in destroying them now if you can help it!

Glad you feel better.

My nurse is pretty good at hitting on the first try. Yesterday she said good, your hands are warm. I never knew that made a difference but the needle slid in like butter.

Today I will make sure my hands are warm.

Tony

My infusion center applies a heating pad for about 5 minutes before sticking but in my case it doesn't matter. It takes at least 3 attempts. I'm 71 so I guess my veins are shot. OUCH!
Mike

Abby,
Every hospital has an " IV team" - they only do IV,and they are special trained RN nurses with usually a lot of experience. They do it quickly and professionally,they come to your place with their own "special" equipment.
Don't be shy, just tell your nurse, that you have bad veins, and you'd like the "IV team" deal with them.
You don't need to warm up your hands or those " three strikes", let them get trained somewhere else.
Just my 2 cents,been there.

Marina.:)

having difficulty with IV access
 

I too have difficulty with IV access-the last round of 4 days of therapy I had 11 sticks. The hospital I use does not have an IV team so have the regular nurses do it. The veins are getting so fragile and blow so easily. I am trying to get a port done but am having resistance from my neurologist. I just can't do another round or 2 or 3 having numerous sticks, bruises and pain from the tries and infiltates. I will continue to fight to get a port or pic line at least. does anybody have a pic line for infusion?
deb