Infusion IVIG

[nuthatch]

The needle mishap sounds scary! Years ago, my son went to donate blood at a blood drive at his workplace. After the nurse got him all hooked up, she went to tend to another donor. My son started feeling weird and summoned the nurse just as his vision narrowed. She saw he was about to loose consciousness and very quickly pulled the needle out. She had apparently pierced the vein and gone right out the other side, effectively blocking blood flow, which is why he was loosing consciousness. Unfortunately, that experience turned him off to donating blood.

I know that you had a problem with scaroidosis a few years back. Does the IVIG affect it?

[Sunshine]

Good memory! I don't know if it impacts sarcoidosis. IVIG has anti inflammatory properties, sarcoidosis involves inflammation, so maybe? Mayos opinion was that the sarcoidosis was caused by the Avonex, which left me hopeful it would not come back again.

[SalpalSally]

DD is on Abagio and doing well so far!

[Virginia]

Howie, where have you been? These oral drugs have been around for awhile now.

Agate, you are right the injections given in the stomach are the ones that hurt me the least also. There are no oral drugs that I can take. Partly because I have been on interferons for so long and anyway I have aged out of the time they will give some of the newer drugs.

[nuthatch]

I hope that the IVIG is good for the sarcoidosis as well as your MS and the other problem you suffer from. It's not fair, just too much on your plate!
I remember you posting about the possible sarcoidosis/Avonex connection years ago. I also had injected some of the recalled Avonex at that time, but had no obvious problems as a result. I had never heard of sarcoidosis before that time.

Just recently, I reconnected with an old high school friend. He told me his 33 year old daughter had to have a heart transplant due to sarcoidosis, so I've been reading up on it. Seems it's yet another one of those immune reactions that not much is known about. Sometimes it seems like medical science really doesn't know all that much really!

Wishing you well, BBS.
Joan

[Frog42]

Sometimes it seems like medical science really doesn't know all that much really!

But they act as though they do so we'll be sure to act as though we trust them.

[Lazarus]

Oh no Laz! You've been my hero, finding treatments that work for you and living a full life. ... I hope things start to improve for you.

Thanks for the feedback. I know some take the whole treatment sub cutaneously. They do it in the privacy of their homes they stick needles in their own stomach, ew!

INstill am impressed with my medical situation.......remember, I spent the whole season farming and going to market...assuming more and more of John's part as the summer went on. Then with his total collapse I have been handling all aspects of the greenhouses, running back and forth when John was in hospital and gathering information and making decisions about what to advise him....
So, it is amazing that I functioned so well! I attribute this to the rituxan. When you have tough times, don't you think the IVig helps stabilize things preventing a total collapse?

[Virginia]

Linda, you really do so much and so well. I am so glad to hear it.

BBS, this is just a minor bump in the road for you - at least I hope it doesn't happen again.

[Sunshine]

The main help I can see from IVIG is vast improvement in fatigue and I can feel the floor under the feet better. And, it has improved my chronic cough about 75%

[Lazarus]

The main help I can see from IVIG is vast improvement in fatigue and I can feel the floor under the feet better. And, it has improved my chronic cough about 75%

Yup! THe fatigue thing is the biggest benefit I got but also my legs were stronger. You know, the infusion wears off so there is a feeling of loss toward the time right before you get the next infusion. Sort of like needing to fill the gas tank.

But neither the rituxan or the IVIg cure anything. The MS is still there and active. Still, our meds allow us to be physically active and get as strong as possible. And that helps a lot every which way.

[Virginia]

Just to help with the fatigue would be a major factor in coping and dealing. Linda and BBS, you two are doing great.

[Sunshine]

......Me too :)

[Sunshine]

Had ninth infusion today, uneventful.

Last time the needle bent out of the vein so it infused into arm tissue and made it swollen. Not a medical problem, but uncomfortable. Learned lesson to check it, if arm aches during the infusion.

[Virginia]

BBS, glad all went well this time. Hope you get a real lift out of this one.

[Sunshine]

Fatigue is still gone. Legs are no better.