I felt this way after my 3rd week of IVIG and informed my neurologist who was handling my IVIG. He didn't respond to me at all, so I told him that I wash't taking the next set which was due a month later and all I heard from him was to schedule my next appt, which I didn't. I felt that he was only interested in the money and not me. A few months later his office staff called to tell me it was time to schedule my appt and I again told her that I wasn't scheduling and I never heard both and it has been a year. I stopped seeing him and he never followed up to see what what going on with me, so I must not have been too important a patient to him. I now have another neurologist who was considering IVIG, but since my CPK has been low for the last few months, she isn't doing anything. These doctors seem to be as lost as we are with this illnees and I don't know what to expect as my hands are numb and pretty much useless and I am unable to walk, I am in a wheelchair and there are so many other changes with my body, my eyes/vision, hearings, etc. It seems as if every muscle in my body has been affected in some way.

I hope that this helps you in some way. I don't proofread anything anymore as it it s too difficult for me so I hope that this is readable.

Hi Brenda. Sounds as if you have found a good doctor at last. A good doctor treats the patient not the CK levels. Autumm

Hi Butter up. Sorry you are having a rough time. I understand it takes at least a month to feel the benefit from the IVIG. Hope you feel better soon. Autumm

I haven't done IVIG but there are times I don't necessarily feel nauseated but I do have a tough time with an appetite sometimes with my Methotrexate. As you mentioned, you need to eat anyway to keep up nutrition so make sure you plan healthy food that you can tolerate. I recommend you skip the chips. :-) I eat rice, watermelon, jello, cottage cheese, cheese, and saltines as my go to. Make sure you get some good protein in there.

Hi Buttercup, I have not experienced IVIG. It does sound like your experiences are much like many of the reports from other IVIG patients. It is great to hear that you felt better on Sunday. I guess the main thing is will this make a good difference in feeling better over time and with blood work result improvements.

I am praying for you to see improvements.

I always drink low sugar vegetable juices from my juice machine when I feel bad. My stomach is able to easily absorb the juices and I will not feel bloated. I agree with Lexis about the protein. Sardines are small and good protein too. Stay hydrated too.

Keep us posted.

buttercup, Hi I'm new to this Website just discovered yesterday. I have
inflammatory myopathy, ployomysisit since March 2013 and started
treatment March 2013. My treatment was IVIG and in May 2013 I started predisone.
Now it's August 2014 and I'm still doing IVIG and predisone.
Between the two treatments the predisone caused the most damaged to my body. But I know you are more interested in IVIG
Treatments. Honestly IVIG side effects are very mild. If I do get sick it only last for a few days, and it's either a headacke or upset stomach. The only time I'm tired is when the IVIG is being pumped into my veins. The nurses did have to change my speed (pump)
to go slower because I was getting dizzy and I feel asleep sitting in my chair during treatment. Once they slowed the pump down now I'm fine during the treatment. Another side effect I notice was alots of new hair growth on the arms, face, legs.
When I first started my IVIG March 2013 I was using 20% of my body, now 1 year and 8 months later I have 50% of my body back.
I still have a long way to go but I improved but still have many problems with my body and bad weight gain from the predisone.
Unless things changes I will be continuing IVIG until the end of the year.
Take care

Meow,

Update on my experience with IVIG.

My starting CPK was 585. One week after getting 5 bags, I got another CPK. This one was 445. My Rheumy wasn't happy; He was hoping for 120.

Appetite came back a day after I wrote my initial question. But it was weird not being hungry for a few days.

Prednisone is back up to 10mg every morning. MTX is still 6 (15mg) with Saturday dinner.

One week ago (8/12), I was sitting in my desk chair, and when I got up, I couldn't stand up straight. It happened around 8am, so I had time to call my Rheumy and he told me to try and come to the office. He only had his lunch break open, so he told me to come at 12noon. I did, and he gave me 2 shots of Depo-Medro (?). Injected steroids that take 7 days to heal.

Plus I got generic Flexeril and 7 Oxycodone/Tylenol tabs. I must split these in half, as can only stomach very low doses of codone.

Today (8/19) I am just about able to stand up normal. I still have dull pain in my right hip. Also got a diagnosis of Sciatica. Swell, huh.

I have a standing appt. with my Rheumy for Nov. Will probably see him sometime in late Sept or early Oct, as I usually have changes every 60 days..

Whenever I see him again, I'll have to get a CPK two days before, and if it is still over 120, we're gonna talk about getting either more IVIG or Rituxan.

What lovely things to look forward to....Oh Well.

Thanks for all your advice & encouragement.
Purr,
BK.

Hi Everyone...
WELL AFTER BEING DIAGNOSED with DM 3 years ago and being treated with (3) 5 days treatments for 0nce a month over ,3 months...I have to say it saved me! But it is now almost 3 years later and I'm in full relapse. Ended up on ER with 2 days of IGIV treatment because my current rhuemo completely dropped the ball. after my treatments 3 years ago I slowly was weaned of methotraxate and prednisone and felt amazing. This relapse has scared the hell put of me (ended up with inflammation around heart....OK now). So I just had my treatments on Sat/Sun (Aug 23/24) and got out of hospital Tues..here is my question...I do not remember how long after my very FIRST days of treatment the first time it took for me to start feeling the effects. I understand everyone responds differently but I would love your input...Im leaving for a trip to Bali in 13 days and am so afraid I won't be able to go :(.....

Meow...new update,

Rheumy wants to try more Rituxan. But first, we have to deal with my new back junk.

I have a Disc Bulge L2-3, a Disc Herniation L4-5, and a Hemangioma L4. Swell!

I see my Rheumy about the back next week. Not sure what's gonna happen, if anything.

Purr,
BK

Best wishes to you, Buttercup. I will pray for you. Keep us posted on your progress.