Anniversary comming up!

It has been a year since my last hospitalizatin, and I am very appreciative of that fact! I am on IV steroid treatments with increasingly longer periods between treatments. I had one this week, and I see my doctor in two weeks for a check up and further treatment plans. I expect that I will either continue to increase the time between treatments, unless the doctor has new information about CIDP treatments. I am very lucky to be seeing a proactive doctor.

Hi Rhonda, congrats on your improvement! I am interested in how the IV steroids work. How long does it take to get one, and how quickly do you notice improvement? Hoe long do you go in between treatments? And do you get the same side effects with the infusions as you get with taking the steroids orally?

My neurologist decided to start me off with plasmapheresis in the hopes of removing the “bad” antibodies from my blood. I’ve had one course of 4 treatments in a row (3 in the hospital), and 1 as an outpatient. Two weeks later I has two more treatments. I’ve been seeing slow improvements in sensation and strength, but the burning pain is still there. I see him again in a month…I may ask him about the IV steroids.

Thanks!

Paula

Glad to hear things are improving

Hi Paula,

My first relapse happend 6 mos after GBS treated by IVG. I was again treated with IVG and released after 5 days. I ended up paralized again 3 weeks later. I had to go to a different town to get plasmapheresis since the IVG was no longer working. I did a course of plasmapheresis plus 3 weeks in rehab. I responded well and was released. I had another relapse 3 weeks later and again did plasmapheresis and rehab.

This time the central line was left in and I was scheduled for 2 weeks 3X then 3 weeks 3X, 4 weeks 3x etc. for outpatient plasmapheresis. I was also put on oral steroids. My hometown neuro and I discussed the treatment protocol after a month. He pointed out that I was being treated 2 ways for CIDP and we did not know which was working the plasmapheresis or the steroids. Since I had to travel to get the plasmapheresis and the tubes had to be cleaned weekly, we looked at steroids as the first option. I was not happy with the side effects of the oral steroids, so we tried IV steroids. We are using the same increasingly long time between treatements. I am now at 8 weeks between treatments and will do this schedule for 6 mohths before reassement.

When we fifrst tried the steroids in place of the plasmapheresis, I asked to keep the central line in until we had proof that the steroids would work. Unfortunately, one of the tubes developed a clot that would not break up. The nurse called to get permission to schedule removal of the line, but communication got screwed up and I did not get surgery scheduled before I developed clots in my arm and chest. The clots required hospitalization at the hospital that inserted the line, so another trip out of town to get the line removed, and the clots broken up.

The IV steroids are given at my local hospital. It takes about 2 hours at the longest. I can read or watch TV while I am on the IV. I have rolly tiny veins, so I have to drink a lot of water the day before and of my appt. They sometimes use warmed blankets to help raise my veins as well. But, there is little pain and the side effects are not as bad as oral steroids.

As with plasmapheresis, I stay away from places where I might be exposed to colds or flus for 48 hours since my immune system is suppressed by the steroids. I tend to have a bit of insomnia, but I combat that with avoiding caffine, getting some fresh air during the day and all the other tips that are out there for insomnia. I can feel exceptionally tired and awkward as I get closer to a treatment time. But that varies from a few days of being tired to a whole week.

Paula, I am on Gabepentin for the burning and Tramadol for the stabbing pain.. Originally it was 4 Gabapentin capsules 3x a day. We moved that to 3 capsules 4X a day to keep a more consistant level of the drug in my system.

I also have more burning, the wool sock feeling, and discomfort from bedclothes or socks on my feet as I get further from my last steroid treatment. My disability is due to the profound exhaustion and the pain in my hands and fingers when I type or use a mouse. I can use my hands about an hour before I have to sit and let the pain pass. It takes about 20 mins for the pain to go away. The pain comes no matter when in my treatment cycle I use my hands.

My doctor has a standing order at our local ER that if I come in at anytime with symptoms of a relapse, I am to get a steroid treatment. This is in case I start to lose use of my legs on a weekend, in the middle of the night, or holiday. So far, I have not needed this failsafe.

I hope you will talk to your doctor about steroid IV therapy for your CIDP. Yes, there are side effects, but so far they have been less drastic than the blood clots from the permanent central line, and less disruptive than having to get the lines flushed and cleaned weekly.

My doctor goes to confrences on a regular basis and the steroid IV treatment was discussed as one of the best long term treatments for CIDP at the confrence he attended last spring. So, he and I feel we are on the right track. Still, if plasmapheresis is working for you, you have local support to maintain your line, and have not had any problems with blood clots, you and your doctor will probably feel you should continue your schedule.

Good luck and let me know how you are doing.

Rhonda

Thanks for taking the time to explain your treatment and progress, Rhonda. I wish continued improvement for you, especially with your pain issues. I’ll keep you posted on my progress…I just finished the last of 4 Plasmapheresis treatments, and I’m noticing small improvements in strength. Hopefully things will move uphill, and I recognize when I hit a plateau…that’s when my neurologist wants to schedule more treatments.

Stay well!

Paula