BryanF
Your Replies
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July 2, 2017 at 8:23 pm
If the prednisone is working, I’d stick with it. I’ve been on it since December, starting at 80mg a day.
For a month, it wrecked havoc on my sleep and there is the weight gain, but overall it was tolerable.
Unfortunately, Prednisone did little to help my CIDP, but apparently in others it works great. The one good thing about steroids is that they are cheap. IVIg is crazy expensive. Thank God I have great health insurance or I would be in the poor house or not getting treatment at all.
My new doctor started me on monthly infusions of IVIg and is tapering down the steroid. The IVIg has put me on the right track as my symptoms are slowly getting better.
You might want to watch this presentation on the symptoms and treatments for CIDP. https://www.youtube.com/watch?v=5cLbFKc3Vkk&feature=share
July 1, 2017 at 7:26 pmHi Jeff. Same here, I like to compare notes to see how I stand in terms of treatment and progression of the disease.
What I’ve read is that your nerves heal up to 3 years out. So that at that point, you will know where you stand in terms of permanent damage.
The weakness in my calves, the continued numbness in my forearms and fingers, and the numbness and pain in my feet are my issue areas.
During my 1st recovery from January through February, the numbness in my hands had completely healed.
But, since my relapse in mid March, they haven’t healed.
On the other hand, during this recovery, I definitely feel stronger from the waist up and as a whole, I have more energy and stamina.
I get 2 days of IVIg treatments next week. Curious to see what effects it has. It usually takes me 10 days out for it to kick in.
As for Lyrica, my insurance won’t cover it. I can’t complain as I’ve reached the point this year where my co-pay is $0.00 on my IVIg treatments since I’ve maxed out on my out of pocket expenses.
Thank God for my job and insurance.
The most annoying thing about CIDP is the day to variance. Good days, bad days. The pain often is never the same. Some days you wonder if you are relapsing and the very next might well be the best you’ve felt in ages.
Good luck Jeff and keep updating your condition.
June 26, 2017 at 8:25 pmThanks JK
June 16, 2017 at 6:43 pmThose can be symptoms of CIDP bcproblems.
Get to a neurologist asap. As Jim says, the sooner you receive treatment, the less damage will occur.
June 13, 2017 at 5:23 pmBenadryl and Tylenol taken before IVIg can help mitigate headaches.
I’ve found if the IVIg is infused too fast, it makes me tired/fatigued for a couple days after the treatment. We tried a slower rate and I felt great afterwards.
Not sure that what you received is enough to do the job. I’d try the full dosage at a slower rate before you give up on IVIg.
June 9, 2017 at 7:33 pmA lumbar puncture is the usually they way CIDP is confirmed. Tell tale signs of CIDP, are the glove and sock syndrome. Where you have numbness/pain/loss of motor control from your knees and elbows down.
To me, your symptoms seem like CIDP and I’d see a neurologist who has dealt with the disease ASAP and get it confirmed and treatments restarted. Best of luck.
June 6, 2017 at 3:26 pmLet me phrase that question better. For those in a monthly/5-6 regimen of IVIg, what progress did you make and how long did it take.
May 25, 2017 at 7:41 pmtry twitter with the #cidp hashtag.
That way you can filter out the crazies while hopefully meeting fellow suffers.
May 25, 2017 at 4:16 pmI still feel like hell nearly 36 hours after that one pill. My entire system feels like I’m recovering from a vodka hangover. Good thing it was only a $1.82 to fill the prescription. When the cure is worse than the ailment, it isn’t worth it.
I searched the forum and some say the effects go away after 3 weeks, while others said it always made them sleepy.
I can’t go for 3 weeks like a zombie. Some meds give you a buzz in a good way, the Cymbalta definitely gives me a bad, dopey feeling that, at least yesterday, depressed my reflexes, made me horribly tired to the point I left work early, and it darkened my mood.
I’ve never had good luck with “pain killers”. Dulling your senses rather than dulling your pain has never seemed like a reasonable path.
May 20, 2017 at 7:08 pmWeek two update. I’ve seen a tremendous increase in my core strength. At work I can pick up boxes and handle the workload almost like I could pre-CIDP. Overall I feel like I have more vitality. In fact, this Thursday, I played in my golf league. First time I played since September. I don’t have the strength or coordination to hit a 1 wood yet. So I hit a 5 wood off the tee, about a 150 yards. That’s 50 yards shorter than usual, but the bottom line is that I was able to play. That is a big step forward.
Ultimately, still, if I over do it, the numbness in my arms, feet, and hands does come back and I have to rest up a few days for it to decrease.
In general, while my strength has returned, I still have that numbness/tingling/pain from my elbows to my fingers and from my knees to my toes. My calf muscles still feel weak as well. And, my feet still begin to hurt after being on them for a few hours.
I guessing that with the relapse in mid-March, my myelin and nerves were damaged again and it will be a long healing process.
Hopefully with the next IVIg infusion in June, I’ll maintain my strength and the nerve/myelin damage will begin to heal.
I’m not complaining in anyway, shape or form. Not having that run down feeling and having the strength to lift items at work is a great start.
Where I’m upset is with my previous doctor for allowing me to relapse(by not continuing the IVIg regimen), in essence forcing my to once again go through the process of having pain/numbness in my fingers, which I had pretty much gotten rid of by the end of February.
I do see my new neurologist this Tuesday. It will be interesting to hear his take on my progress.
May 18, 2017 at 10:16 pmCIDP has affected my “going”. When I have to go, I have to go and make a b-line to the restroom. I would imagine it is harder on a 90 year old. It has gotten better over time and I’d guess he will see improvement over time.
Good luck.
May 15, 2017 at 11:54 pmI don’t know about his age, but IVIg can do wonders. 3 weeks ago I was using a cane. After my IVIg treatment in early May I’m walking normally and I feel much stronger. Good luck
May 10, 2017 at 9:52 pmHopefully you see some results from the May 8th infusion. Some folks take 10 to 14 days to start to see results.
Good luck.
May 10, 2017 at 8:21 pmWhen did you start your IVIg treatments? In January or just recently?
May 7, 2017 at 7:42 pmI was bored while getting my IVIg infusions last week. So I read the literature that came with the bottle and hirsutism was a listed side effect.
I’m bald, so of course I can’t see any difference topside, but in god’s little joke on me, I’ve got hair every place else : )
I just noticed that my calves have completely lost all their hair. I think that started after my previous IVIg treatment in April.
Of course with all the medicines you listed, it could be any of the above.
