New Diagnosed-IVIG question
December 15, 2019 at 8:36 am
I am a newly diagnosed with CIDP and have received IVIG loading dose 8 weeks after first onset of symptoms. (Symptoms include tingling and numbness largely in feet however also in calves and hands. (some loss of muscle strength).
My Doctor seems quite confident that the IVIG will help and said that the progression should stop almost immediately and that I should start to see some sign of reversal within the next week or two. She said possible even immediately which I though sounded optimistic.
I am 5 days post treatment and nothing really has changed and the numbness in the feet seem a bit worse. I have two questions:
1-While I realize everyone responds differently curious what most peoples experience is with how quickly the IVIG stopped progression and started any reversal of symptoms?
2-I had no headache during infusion however 3 days after had a bad what I now assume to be Migraine and much nausea for one night. Keeping migraine at bay with light pain meds. I assume this is normal to have headaches and potential nausea for up to a couple weeks after infusion?
December 15, 2019 at 9:06 am
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 🍀
December 15, 2019 at 9:19 am
Thanks Ron and great feedback. Interestingly enough I am told I am bordering anemic and I also have Thyroid issues. I also hear you on pushing for answers. My first neurologist said I think you might have GBS and said, come back in a few weeks or month and we can see how you feel. I found another Neurologist who diagnosed me immediately.
I appreciate the input..
December 15, 2019 at 12:32 pm
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.
December 15, 2019 at 2:47 pm
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.
December 15, 2019 at 4:14 pm
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.
December 15, 2019 at 7:42 pm
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.
December 16, 2019 at 7:59 am
Good feedback for me as I was also unaware of the wide use of Prednisone and Cellcept. I am also only on the Gamunex IVIG at this point although am meeting with my Doctor in two weeks to discuss next steps.I am using gabapentin as well although not sure it is helping at all for nerve pain.
I like facts and as you said want to educate myself but there seem to be so many variables it is a challenge at this point. My numbness in my toes and feet is getting worse by the day and the lightening storm in my legs at night makes sleep very difficult.
I actually am supposed to get on a plane on Thursday to the Caribbean for a first ever long planned Christmas vacation with my kids and am seriously wondering if I can do it now. Doctors say to go and rest up but at this rate not sure how bad it might get in the next 10 days. (Sorry just venting now…)
Will speak to Doctor today and hopefully get something else to help with symptoms but not sure if that is realistic thinking at this point.
December 16, 2019 at 8:50 am
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.
December 16, 2019 at 10:50 am
Thanks Rob, great to hear Gamunex provided relief for you Ron. This is encouraging.
I asked my doctor about diving and was told no way, given pressure changes is too risky. Also getting my compression stockings for the plane to be safe. Am hoping I can get around ok walking is my biggest concern at this point.
December 20, 2019 at 5:59 pm
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.
December 27, 2019 at 8:19 am
Given all the input from my original post, I am curious as to how many people are actually on Prednisone or some other steroid in addition to the IVIG? I spoke recently to my Neurologist and she said “we don’t want to be using Prednisone to treat CIDP” which seems to contradict much of what I am hearing from others?
My current concern is also that after almost 4 weeks since my Gamunex loading does, I am continuing to deteriorate in terms of numbness and pain in feet and walking is getting difficult. Ha anyone else had this experience and if so what were the next steps you took?
December 27, 2019 at 1:19 pm
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.
December 27, 2019 at 2:56 pm
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.
December 28, 2019 at 8:15 am
Great feedback all to my queries so thank you for that.
I have now spoken to a second Neurologist yesterday who agreed that going to Prednisone with some type of immunosuppressant etc. was the next option. He said that in his experience, about 60% of patients will see a benefit form getting the IVIG on its own and those that do not, often benefit by receiving another high does of IVIG (like another loading does). His comment was that these are the less invasive options and that if that did not work,they then move onto the other options of steroids and immunosuppressants. They want to get me in starting within the next week to receive the next 5 day dose of Gamunex. (2mg/kg or in my case about 155 mg over 5 days.)
I am also on 600mg of Gabapentine now and was advised to increase this to 900mg/ day.
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