Starting to Feel Poorly Again-your experience….
August 13, 2017 at 10:22 pm
A question for long term sufferers of CIDP. Since I started monthly IVIg treatments in May, I started to drastically improve until late July.
Towards the end of the month I started feel a little numbness in my legs and a bit in my hands. I figured the Aug 1st/2nd round of IVIg would turn things around, but instead, I have more numbness and stiffness in my calves and feet and more numbness in my fingers and a bit in my lower arms. Additionally, I’ve just been wiped out at the end of the day as well.
I know CIDP has its ups and downs, but this feels like a drastic downturn, as it is a bit more difficult to walk.
In your long term recovery, did you have a few u-turns? Luckily I see my neurologist this Thursday. I took tomorrow off from work to rest up, in part, hoping I’ve just overdone it of late.
Thanks in advance….
August 14, 2017 at 12:02 am
U turns? Feels more like a 360 degree spin out on ice in the middle of a snow storm. LOL
Saw improvements on day 3 of IVIG load dose which was around Feb last year. Infusions every 4 weeks until July/Aug (iirc) of that year and it wasn’t lasting as well by end of wk3/start of wk 4. Bumped dose and did OK until Jan/Feb and saw a major relapse in just 3-4 days at end of cycle. More prednisone (yuk) and switched to 2 week cycle. Did OK until June roughly and issues again so now it’s another upped dose of IVIG every 2 weeks.
Not as good as I was the first 6 months, better than I was 6 months ago, stable the last couple of months. Im not going to be running any races or playing a round of golf anytime soon.
Best of luck to you.
August 14, 2017 at 10:45 am
Thanks Cer100. I took off work today and feel a bit better. But I’m still worried about decline. I wish recovery was linear, but obviously it isn’t.
August 14, 2017 at 4:57 pm
speaking of being wiped out and overdoing it, the main forum has intesting thread on gbs/cidp fatigue
August 17, 2017 at 10:46 am
Just saw my neurologist this morning. He said that treating CIDP is as much an art form as it is a science. With my ups and downs, he wants to try an IVIg treatment one day, every other week versus the current back to back days, each month.
He said the more even distribution of IVIg has helped some other of his patients avoid the ups and downs and helped to progress to the next level of healing.
Worth a shot….
August 17, 2017 at 8:36 pm
Every 2 weeks did “level” me out more when I was having severe drop off on last week of a 4 week cycle. Unfortunately, it hasnt seemed to get me back to that next level, yet.
August 18, 2017 at 12:42 pm
One of my doctors said to me, ‘you need more IVIG, more often. Proved to be accurate. I was on infusion once per week for a time. However, my MADSAM, Lewis-Sumner type was still slowly progressive.
August 21, 2017 at 11:00 pm
Hey Bryan, just checking in on ya. I too feel like I have taken a step backwards as the new sensation of weakness in the legs has been pretty consistent. My after infusion cycles are never the same. I might feel better right after or I might feel worse. I do think the IVIG treatments are keeping me stable but have accepted that this could be my foreseeable future. Luckily my insurance is paying for me to get an infusion every 2 weeks for another year. Do you have much inflammation? That seems to be my biggest issue, but luckily it comes and goes rather quickly which is very weird. The nerve activity feeling in my ankles an calves is kept to a minimum with taking Lyrica and I have no side effects from it. Want to avoid those steroids at all costs if I can. Have you tried anything like turmeric for the inflammation? I am thinking of trying it. Also wondering if a foot stimulator like Revitive would help with soreness in feet and calf muscles. I still do as much exercise as I can to keep things moving but have not opted for PPT yet. I tried the local pool but maybe the chlorine was bothering my skin and seemed to wake up the nerves after some water exercising so that was not a solution. I hate to complain as I know others have it much worse and I seem to have adjusted to life with cidl but I still have days when I just want it to be gone. If I overdo with too much activity, I might give into a Tramadol (which definitely works 🙂 outdent want to dog down that road either. I might take one every 2-3 weeks if necessary. Let’s hope we both start to improve somewhat. Take care, Jeff
August 26, 2017 at 11:03 pm
Very weird cycle for me. It took almost 2 weeks for the IVIg to kick in. Around the 16th of this month, I started to feel energized again and I’ve remained on the uptick since then.
I don’t get inflamation, just weakness in my calves/ankles and nerve pain in my feet.
My doctor upped my gabepentin to 1500mg a day and it now actually takes the edge off the nerve pain in my feet.
I’ll agree with you on over doing it. At this stage in my recovery, there is only so much I can physically do and when I cross that line, I pay for it for a few days until I can rest for a bit.
I saw your other thread. I’ve never really had anything over the counter that takes inflammation out. Sorry, I can’t recommend anything on that topic.
Sorry it took so long to respond.
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