Got better getting worse

General General CIDP Discussion
1

I just wanted to give a update on how I am doing so let’s do good news first

1 After I got over the 3 weeks of side effects from the IVIG I had what I call a normal week on week 4. For one great week I felt normal I even got the reflexes back in my legs.

2 I got my appointment with UT but it’s in August that would have been a big problem but I found a really good Nuero and he is treating me. He redid all the test and did a LP my protein count was 65 he told me it should have been in the 20 for someone my age. After all the test he is sure it’s CIDP and has started treating me.

Now the bad new

1 The new doctor did not want to do IVIG again since one I had such a bad reaction to it and 2nd it cost so much. I am on Prednisone again 40 mg and some other drug can’t remember the name but they give it to people that get organ transplants. So far it has not made me better I am get worse but its slow and this time around it seems to be more sensory than motor nerves. I start the full does this week so maybe it will kick in soon.

2 I have gained so much weight sine they put me on prednisone. I was all ready over weight and prednisone does not help. Is anyone here taking some other oral drugs beside prednisone?

I feel better know IVIG helps so far its the only thing that has been able to stop this. ANy way just wanted to give a update and see if any one can help me out on the drug front.

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I'm so happy for the good news, just kep positive and look at the great moments of being able to see results. I wil pray that you are able to get back on ivig. I know that is frustrating but i'm believing everything will turn out good for you.

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Hello Jast, I started out with 40mg of prednisone per day, and after a month or so, and 50 pounds or so, I was given IVIg. After about the 3rd treatment, I started getting some sensation back in my feet. After about my 8th treatment, I had to stop taking the IVIg infusions, as it was making my Pulmonary Fibrosis worse.

I was continued on 40mg prednisone until after my 2nd EMG/NCS tests. Then the docs discovered that the prednisone was giving me "Muscle Myopathy" (weakening of the muscles), so they wanted me to take a non-steroidal medication called IMURAN. After about week 2, I started getting flu like symptoms. By about day 4 with no improvement, I ended up in the ER. I was very dehydrated and admitted to the ICU for a couple of days and then a regular bed for 2 more days. Then they transferred me to a nursing home/Rehab center for 5 weeks.

So now I am on lower doses of prednisone, 20mg one day, 7.5mg the next. My 2 neurologists and my pulmonologist began talking about putting me on CellCept (probably the new med you are on). After another Pulmonary Function Test, my pulmonologist said he didn't feel the CellCept would help my Lung issues, so if the other docs wanted me on it, they would have to do it for the CIDP, and not the lung issues.

So that got me another trip to the Lahey Clinic and another EMG/NCS test. Based on that test, they want me to stay with my current prednisone schedule. The test results were sort of "good news/bad news". They showed that my immune system was "not actively attacking" my nerves, BUT they also showed that I am NOT improving at all, either.

The lack of sensations in my feet and legs keeps me "off balance" all the time, so I need a "walker" full time. At least it helps carry my oxygen bottle. :-)

I have been getting more symptoms over the last 2 weeks, toes cramping, a "pressure feeling" in my hands and legs where it was just numbness and tingling before. It's like having my legs bound too tightly, with an Ace bandage. I am only feeling that on the outside of my calfs, and the bottom of my feet. The little fingers and outer edge of my palms (on both hands) feel like I have bandaids on them, too tight as well. I mentioned it to my neurologist at the Lahey Clinic, but he didn't seem to concerned about the new symptoms.

One good thing that has recently came about is that once they lowered my prednisone, I lost about 25 of the 50 pounds that I put on, because of the prednisone.

Good Luck & God Bless,

Henry