BryanF
Your Replies
-
January 9, 2018 at 12:52 pm
GH, my feet really concern me. Hopefully there is still some healing left to be done.
The last couple of weeks certainly have me down. While I’ve seemed to have topped out at 88%, I’ve recently dipped to 75% of my pre-CIDP self for the last 3 weeks.
As a result, I’m more tired in general. I’m having a bit of trouble with stairs and steps. My finer grip is off, and I’m dropping things. Also, I have a lot of random muscle pain in various areas, much like I did at my worst.
What has me down, is that 88%, there are so many things I can do. At 75% there are so many things that suddenly become difficult to do.
As I write this, I’m taking my IVIg infusion. I’m hoping I get a nice boost and reverse the current trend. I took the week off, so I’m getting plenty of rest.
December 15, 2017 at 8:17 pmCIDPTurtle. Started to read your blog and have it booked marked. Hope all the best for your daughter. Saw the picture of her getting the infusion at home, with her kitty at her side. I bet that was really comforting for her!
I had my infusion on Tuesday and for the first time in a long time, it hit me like a ton of bricks. Tired, sore, cranky, my feet went numb and my left hand went numb as well. Left work early on Wednesday and slept for 12 hours straight. Felt much better on Thursday.
As for the cause of my CIDP, I can’t prove it, but in July of 2016 I had a bunch of booster shots and my symptoms started that August. In my humble opinion, it definitely is the immune system reacting to immunizations.
December 12, 2017 at 4:35 pmIt really depends at what stage you start from. At my worst, I could barely walk and was collapsing.
Five days of IVIg this January got me walking by the 6th day and I improved over the next month.
I topped out at 80% of my former self. From late February through March I started to decline and needed a cane to get around.
I got another 5 days of IVIg in early April and it barely made a difference. (I think they administered it way too fast).
I changed doctors and got another 5 day round in May. It was administered at a much slower rate. During the next few weeks I felt my core strength return. I felt like I returned to 85% of my former self.
Since then I get biweekly tteatments of IVIg.
At best, progress is incremental. I’d say I’m 87% of my former self. It’s progress, but so frustratingly slow.
Then, there are the ups and downs. CIDP recovery for me is two steps forward and one back.
At the end of the day I’m exhausted and stress brings back numbness in my hands and in my legs.
So hang in there and come to grips that recovery is a long curvy road with speed bumps and a frustratingly low speed limit.
November 29, 2017 at 9:00 pmIt’s been a year since I was diagnosed with CIDP. With a new doctor starting in May, I’ve been on bi-weekly treatments of IVIg.
Most people get a quick boost from IVIg. So it will allow you more mobility, rather quickly.
I’d say a year later, I’m 80% of my former self. I work 48 hours a week, cut the grass and am able to play golf again ( not as well, but I’m playing!).
That said, I’m exhausted at the end of the work day and my lower legs still feel a bit weak and my feet just hurt all the time. So things may not turn out perfect, but recovery can take years.
The point being is that once you begin treatment things will likely improve quickly and in the long run you can resume most of your activities.
Good luck. Keep us informed.
November 9, 2017 at 10:30 pmHave you seen any improvement? With CIDP, I think many of our fellow sufferers can agree that you experience ups and downs.
I’ve made good progress since May, but for instance, this last week I feel like I’ve had a mini relapse. My balance is off just a bit, my feet hurt, and my calves have that numb feeling. The week before I felt great.
I always say, depending on the very second you ask me, I will give you a different answer as to how I feel 😆
But, looking at things in the long run, I’m incrementally on an upward path. The problem is, to get their, it is literally, two steps forward, one step back.
I don’t know if that helps, but feel free to ask more questions.
November 4, 2017 at 2:25 pmAcceptance,
Not sure if I responded to you or someone else in another thread, but the results of IVIg can take up to a week or more to feel. Sometimes it is a cumulative effect of several treatments and sometimes a single treatment will give you a great big boost.
My two cents is to settle down for the long haul and allow the IVIg to do its job.
November 3, 2017 at 9:47 pmIVIg is an odd medicine for me. In the scheme of things, it has helped me immensely.
But individual treatments vary. Some have given huge boosts. Some minor and maybe 2 did nothing st all.
Sometimes it takes a week for it to kick in and other treatments begin to help me the next day.
October 31, 2017 at 3:39 pmHi dsfritz
I wish you the best of luck.
I started treatments last December. After changing doctors in late April, I’ve been on IVIg infusions on a monthly basis since May
I’ve made steady progress, progressing from walking with a cane to being able to play golf again.
But, recovery isn’t even. You jump forward, then encounter setbacks.
I still have some minor numbness in my hands, and stress seems to make it worse.
Also, my feet hurt and after 8 hours of work they Hirt more.
While I’ve regained much of my strength, I still find myself fatigued at the end of the workday and at the end of the work week.
In general progress is incremental. You might not see it on a day to day basis, but compared to where I was in April, I’ve become a functional resin again.
As far as the IVIg goes, I take Benadryl and Tylenol before treatment and have no ill side effects except that I’m wiped out for a day.
Best of luck. Feel free to ask questions.
October 23, 2017 at 7:11 pmPaulg,
While I’m still under treatment, fatigue is still an issue. I work six days a week and I’m on feet all day long. By the end of the day, my feet are killing me. Gabepentin keeps the pain away while at work, but by quitting time, I limp out to my car.
After work, I’m pretty much done for the day, unless friends drag me out. On my off day, when I’m not getting IVIg every other week, I sleep late and lounge around. I need to rest to help make it through the week.
October 20, 2017 at 5:42 pmBC,
The only side effects I have from IVIg is that I’m worn out the next day.
I had breathing problems when I first got CIDP. Hopefully the IVIg will help you. If it does, you will see improvements over the next couple weeks. Good luck.
October 4, 2017 at 8:02 pmGood luck Acceptance76. Let us know how things progress.
I also started with Prednisone, 60mg a day, but it never seemed to help and I ended up with IVIg as my main treatment. Right now I’m on 20 mg a day and hoping my next visit will see the dosage reduced even more.
October 2, 2017 at 6:16 pmCer100,
That should have read every other week. I get 1000ml/100g per treatment right now. So that’s 2000ml per month….
Bryan
October 1, 2017 at 7:18 pmHi Jcheart,
How long have you had your symptoms?
As a follow up to this post….
By March, I felt like I was regressing, but my Neurologist didn’t want to respond. So I went to get a second opinion. He was rather upset that my original doctor didn’t continue the IVIg. He said it was obvious that the prednisone wasn’t arresting the CIDP.
In other words, he said my neurologist allowed me to relapse and cause more nerve damage.
So I went with the new neurologist and now get IVIg treatments every week.
I’ve regained a lot of energy, returned to work, and even played 9 holes a week for the last month.
But, I still have some tingling/numbness in my hands (especially when stressed) and my feet burn and from the balls of my feet forward, it still feels numb and a stiff. Additionally, at the end of the day, I am exhausted.
I still have a ways to go to say reach 92% of my previous CIDP abilities.
My suggestion is to see if you can get into the neurologist sooner.
Good luck and if you have any questions, feel free to ask.
Bryan
September 28, 2017 at 6:07 pmcer100, it is just personal experience. When the IVIg has been “rushed” I experience little to no benefit. When the IVIg is slow administered, I feel the effects within in a week.
September 27, 2017 at 12:45 pmThe effectiveness.
