I’m a 41 year old female. I’ve had a port for three years now. After the initial seven months of IVIG and Rituxin, my veins gave up. The port has been the absolute best! Mine is on the left side of my chest and I believe it’s called a port-a-cath. I was on very high dose immunosuppressants (CellCept) when it was placed, so it was a slow healing process. But, now it’s just a little button on my chest.

Infusions used to be miserable. I had “great veins” but with repeated infusions, they started to blow. I would look down and my arm would be the size of Popeye’s. If you have to get infusions forever, like most of us, you’ll be happy with a port.

I know this is an old post, but I have pain and have lost teeth as well. Cranial nerve involvement as well. It inflames the nerves of the root of the tooth and then they die. Doing better now with treatment. Also, very limited supply of saliva, so I use Biotene products. Botox in my cranial nerves and jaw has helped tremendously.

Cymbalta for three years. There is a transition phase at first – mine was about two weeks. Then, I️ was fine. I’ve always had sleep problems, so my main concern was dizziness and dry mouth. Those went away. My dose is 60 (2 pills a day). Tried switching once and won’t do that again. It also helps manage depression. Hang in there!

SandraP, like you-was having the same issue with my arms/veins and was 37 when started treatment. Had a port placed about six months into treatment. I’m highly immunosuppressed due to autoimmune encephalopathy and was worried about the risks as well. After two months, my scar turned bright red and purple. Turned out one of the sutures didn’t dissolve properly. Let’s just say it let itself out so to speak…and so did some antibiotics then was fine. Not a single issue in nearly two years.

My dad and uncles all have ports for cancer treatment of various kinds so I️ felt very comfortable with it. I’ve flushed and cared for my dad’s for years.

The other form of IVIG seems more invasive and I️ would have to do it more often to get any benefit. I’m going to be on it forever, so I️ love my port. Hope this helps.

Saline before every treatment of gammagard and then a little after. Let me tell you, if they don’t flush that line properly between saline and IVIG, it will wreak hell on your body for weeks. At least that is my personal experience. Some infusion nurses aren’t aware of this. Feel free to educate them as you advocate for your own health and safety.

I am new to this forum, but have been involved in others. Diagnosed in 2015. Mayo Clinic saved my life. My treatment involves a combination of IVIG, Rituxin, CellCept, physical therapy, muscle relaxers, nerve block injections ((Botox) in my neck, back, cranial nerves, jaw, and shoulders. I’ve come very far in two years, but continue to relapse.

After two years and more than 60+ IVIG infusions, insurance has put their foot down. It’s been eleven weeks, but received a round of Rituxin (thank goodness for their amazing patient assistance) and that helped some.

To answer a few questions on this forum:
1. Stress will cause a relapse no matter how hard you try to prevent it. Your body may decline as you have experienced or you may have a whole new array of horror. Sorry. Keep your neuro informed to account for this factor.

2. IVIG has many brands. After several successful months with one, major reaction and was switched. Gammagard has been kind to me. We keep a consistent protocol – 2 Benedryl, 3 Tylenol, a bag of IV fluids, then IVIG slowly for me, then another bag of fluids. Ensure the lines are flushed because IVIG isn’t compatible with some IV fluids (serious rash lasts weeks when they screw up). As you get infusions pay attention to your body, when you feel uncomfortable- usually they are pushing it too fast and need to slow down.

3. Recovery. My first few months of IVIG were both heaven and hell. My body was healing and coming alive, but the nerve pain was torture. It passes.

4. Relapse. Truly hate that word. But, it’s inevitable for me. Following a low inflammation diet, maintaining activity, following my daily med regiment and still they come. Many of you aren’t like this, but it isn’t fun. Be grateful.

5. Support. This is crucial. We have an invisible disease and people just don’t understand. Be your own advocate especially with your healthcare providers. Each time you relapse or go without treatment it is possible you will lose parts of your functioning that you may never get back. Fight for yourself and a future you can look forward to living.