Your Replies

  • November 11, 2018 at 1:33 pm

    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.

    November 11, 2018 at 1:19 pm

    I’ve battled CIDP for several years now. My initial decline was rather rapid – occurring over several weeks. After multiple failed attempts of treatment (steroids shut down my liver, nerve blocks made my hair fall out and tissue die around the injection site, methotrexate made me miserable), Mayo Clinic saved my life. I started IVIG (Caramune-spelling?) and Rituxin as an experimental trial and it saved my life. A subsequent reaction to my IVIG moved me to another one (Gammagard) and it was great! Continued IVIG weekly, Rituxin every four months, added Cellcept daily, physical therapy, and Botox in my neck, back, shoulders, and jaw (so I can eat, otherwise my mouth won’t open).
    Last January I started titration to wean off of everything. I was losing my insurance and feeling so good, I took a risk. It went well for a few months and then it came back with a vengeance. Getting back on all the meds and treatment now, unfortunately. But, grateful to have a clear reminder that although I hate constantly being in treatment, I completely hate my physical existence otherwise.

    A few notes. My port is the best decision I ever made. It doesn’t bother me, never notice it anymore, my arms and veins are happier. Most of us are in this for the long term. The treatment requires infusions of medicine (IVIG) that is hard on your veins. As well as the Rituxin. Do your body a favor. (P.S. 40 yo single mom of two and I’m proud of my port. I wear swimsuits, tanks, scrappy dresses. I don’t care what others think. My body, my health, my priority.)

    IVIG: everyone responds to different infusion rates. Find yours and be vocal each and every time. Ensure they flush the line because it reacts with saline (I get fluids before and after infusions). Some nasty effects occur if they don’t flush the line.

    Listen to your body. Speak up and be persistent. You have to live with it and so ensure you do the best for your body each and every single day.

    November 8, 2017 at 3:12 pm

    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.

    November 8, 2017 at 8:08 am

    Cranial nerve involvement as well. Botox injections saved me. You might look into it.

    November 8, 2017 at 7:55 am

    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!

    November 8, 2017 at 7:49 am

    My infusion team told me that my IVIG (maybe the brand – I’ve done Carimune and Gammagard) is hard on the veins because of the viscosity.

    I’ve lost all sensation in my arms so it wasn’t the needles that bothered me. My vein would ‘blow’ as they called it during infusion and would swell up like Popeye’s arms. One of the many reasons I️ opted for a port.

    November 8, 2017 at 7:42 am

    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.

    November 8, 2017 at 12:35 am

    My neuro said the dose (sub-cue)wasn’t high enough for my needs. Maybe that is the challenge others are having.

    November 8, 2017 at 12:32 am

    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.

    November 8, 2017 at 12:26 am

    Port owner – right here! Love it. Decided to proactively have it placed after being told IVIG would be continuous for at least three years (if not forever).

    No regrets. Never bothers me. I’m a 38 year old female and it’s generally not visible in gym clothes or swimwear. Giving it a thumbs up!

    November 7, 2017 at 11:50 pm

    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.