New Diagnosed-IVIG question

Hey Rob,
Make sure you drink a lot of water during & after infusions, this is important. If you don’t, you get headaches.
My infusions made me anemic, I take iron vitamins just before, during infusions.
My doctor never warned me about anemia, had to suffer through the fatigue until I talked to a friend, his wife took iron for thyroid issues, she was anemic. 👍
You will find out more in in here than from the doctors.
Keep your hopes up, I’ve been fighting with CIDP for 2 years and haven’t seen remission. Everyone is different though, if you don’t see improvement in a few months ask the doc for other options. Time is not on your side, do your research. The longer it goes the more damage occurs. There should be a plan B in mind if the infusions don’t work. I’m not trying to sound negative, hope for the best, plan for the worst.
Good luck 🍀

There are good doctors and bad doctors. The more you educate yourself the easier you recognize incompetent doctors. When I informed my general practitioner in the beginning stage of CIDP, all I had was numbness in my toes. He said ”we’ll have to keep an eye on that.” Good example of a bad doctor.

Rob,

My symptoms were similar to yours when I was diagnosed in March/April. I did not do IVIG, instead high dose prednisone for about 10 weeks and then started tapering to zero by mid-October. I also took and currently take an immunosuppressant drug. I’ve been off of the prednisone for 2 months and I can say I feel like I am basically back to my old self except for the fact I’m a bit out of shape but that will correct itself as I start to workout again now. Your nerves will need all of 6 months to heal before you feel perfect again so keep that in mind also. I have yet to really hear about anyone going into remission by only doing IVIG. Prednisone is a huge help even though there are side effects, you have to go into the treatment plan knowing you are going to get off of it and replace it with an immunosuppressant drug. I am a 50-year-old male and was just under 200 lbs before treatment. Now I am 216 pounds but working my way back to under 200. I think I will get there in a few months.

I wish I put the weight on during all this. I went from 210 a year ago to my current 175lbs. That scares me that I lost so much weight.
What is the immunosuppressant are you on, I’m inclined to suggest it to my neurologist. I’m on Gamunex IVIG, not sure what I can mix, my doctor should know if I can combine these meds.

I am on Cellcept. Maybe the move is to get on Prednisone and Cellcept and stop the IVIG. Cellcept takes up to 3 months to get fully functional in your body at which point you taper off of the Prednisone. Again, remember you may get quick relief from numbing and tingling, but the weakness will take longer as I stated it takes up to 6 months for nerves to heal.

My neurologist just increased my Gamunex dosage from 45 grams to 80. I’m hoping the increase does the trick.
Been on Gamunex on & off for 2 years, I can say I’ve seen much relief, maybe the increased dosage will help.
If after a couple months or so I see no improvement I’ll suggest the Cellcept. I’m on Prednisone, that doesn’t seem to do anything.
Rob, We went to the caribbean back in July, had planned to do some scuba diving with my son in Grand Cayman, I barely left the hotel room. Not realizing, I had suffered a pulmonary embolism shortly before leaving for vacation. It’s a good thing I didn’t push it and dive, I probably would have had serious issues.
I’m probably farther along with CIDP, enjoy your vacation, but take it slow. The heat had effected me greatly.

I just had my first loading dose of Privigen last week. So far I’ve noticed little difference except a little sensation in my feet and legs, and a great improvement in digestion. I’ve also suffered minimal side effects, mainly a bit of fever.

I’m still on 30mg of Prednisone daily but also noticed my sugar levels are not quite as bad as they were before the IVIG. Could be just a coincidence. I saw major improvements within a couple days of starting the steroids.

I think I need to give the IVIG a bit of time to work. I have to see the neurologist in early January then start my next infusions a coule days after. I expect some changes by then. If not, it may be time to look at other alternatives.

Look! If you are getting worse then it is going to take that much longer to eventually recover. The Mylen Sheath takes 6 months to repair back and if it gets past the sheath to the axiom then I’m reading that isn’t repairable. Prednisone is the most used treatment over IVIG and Plasma exchange. Keep in mind you’ll need to get on an immunosuppressant drug in conjunction with the prednisone so you can eventually ween off of the prednisone. If she doesn’t want to use prednisone, then it sounds like you need to find a new doc asap.

I think I will try to write out a complete history of what happened to me and how I recovered. I think many will be able to find my story very helpful. I’ll try to post this over the weekend.

Rob,
I started Gamunex in 2017. Did a regimen for 18 months. Same as you’re experiencing, the neuropathy just kept getting worse. When I was diagnosed with Lyme for the umpteenth time, my neurologist suggested taking a break from the infusions. I agreed, not seeing any season not to. After 8 months of Lyme treatments my CIDP got progressively worse. Not just the nerve damage, I got weak, legs, hands & arms.
My neurologist never had a plan B. None of us as patients should have to bring new ideas to the table, but if we wait for these doctors to make plans, you’ll be waiting till hell freezes over.