How many follow ups do you have with IVIG fusion

After you start IVIG fusion, how often do you go back to see your neurologist?

I've read that most start at 5 and then the fusions go down depending on how your body reacts. So I was just curious to how often you go back to the doctor? Mine is 3 hours away but I'd be doing the fusions closer to where I live.

My diagnosis is CiDP

At first 5, 3 depending how you are doing.

Neurologist every 6 months. IVIg started at 1 session per day for 5 days then one session every 4 weeks.

I started every three weeks and saw immediate improvement in hand strength, but quickly added Solu Medrol and increased frequency to every two weeks. Nonetheless, my legs and feet continued to deteriorate. I’m 7 months into treatment and my neurologist has decided to continue at this rate for 3 more months and then re-evaluate with EMG etc.

Hello Newone,

Welcome! Once I was stabilized I would have my follow up appointment every 3 months and still do. My neuro and his staff are great about answering the questions I have over the phone in between visits. I have CIDP and have been receiving IVIG for almost 5 years. I receive infusions every 22-24 days.

Best of luck to you-

Marfa

My guy goes every 6 months to requalify for IG. His IVIG is 2 days a month followed by blood work in 10 day following infusion. He is about to start High dose Prednisone for 3 months then Immurane He is not too sure Steroinds is the answer. Thoughts?

I started with 3 days of IVIG, every three weeks. As I improved, I stretched that out to every 4 weeks, then 5, then 6, then 8, then 12. Now I have not had an IVIG since last May, and I am hoping that will be the last. I see my neurologist every 4 months.

Welcome Newone.I also have cidp…i follow up with my neuro. Dr every 3 mos. With bloodwork every 3_6 mos. my doctor is very good about answering my questions by phone call in between.I have been on iVig for a 18 months now…I started imuran about 4 months ago with no serious side effects. I seem to be a little stronger. my doctor plans to wean me off ivig and continue with imuraan if all continues to go well. Best of luck to you!

I am very fortunate in that my neurologists visits me in hospital every time I have IVIG (so every 8 weeks) and we have a full discussion regarding progress, any changes and he gives me a full examination at the same time.

Glen

I started IVIG a year ago and was returning to the neurologists every 3 months. After the 3rd return I went back in 6 months. After that visit he told me I didn't need to see him for another year unless I felt I needed to. 9 months in and so far so good.

Thank you all for replying. My neurologist is 3 hours away so I was wondering if this would be a problem. I will see him on the 4th of february to discuss what is going on and when everything will start. I don't know if I have fell through the cracks or what but for some reason since my last appointment I haven't been able to get in touch with my neurologist except to get medication refills and my pharmacy took care of that. I'd like to print this page out and give it to him so he can see that everyone else doesn't have a problem getting in touch with their neurologist but I have a feeling he knows he is in the wrong or maybe my way of contacting him by text, well his phone quit working? I don't know what happened. But it isn't a good thing for me. But he has always been extremely helpful and helped me with any disability papers since I started seeing him in 2006. I seem to get reviewed every 2 years. Never had problems before getting in touch with him. This is a bad time to lose touch. I have made sure though that he is ok and will be there for my appointment. And I do promise I won't print this page out. Seems like I'd be giving up your privacy even though we all have anonymous screen names, I'd still feel uncomfortable doing so. However I have to feel comfortable being able to get in touch with him while going through this process. How does a good doctor just disappear for 3 months? My last call with him was what hospital did I want to do the spinal tap and the IVIG fusion in. I gave it to him and then nothing ever happened. I was diagnosed by another neurologist that did my nerve conduction test that specialized in auto immune disorders and he took a leave of absents right after doing my test.

To Madonnart, I asked about just having steroid treatment and my neurologist said no and he wasn't going to start that because of the side effects and addictivenes of them. I have a friend that has been on prednisone for years for a different disease and now he can't get off it.

I have been put on prednisone before by a primary doctor for inflammation and it did help but it was temporary. but I can tell you one of the times he put me on a very hight does to start out with and I didn't sleep for 2 days. It was like I was in over drive and did my laundry, cleaned the house, things I never thought I could even do because I also have a cervical spinal cord injury. It wasn't a good thing for me because I was doing things I shouldn't have been doing. I"d be careful with steroids and that is just my opinion. Others who may have taken steroids for CIDP may have other opinions. I wouldn't do it as a long term solutions though.

It was presented as a 3 month run , tapering to 5 mg then the Immuran. He said it is amazing for pain and improved function. TY for your answer.

I have IVIG every 3weeks on gabapentin, being weaned off lyrica and baclofen. In conjunction with my IVIG I’m starting retuxan next week. I tried prednisone and developed insomnia! I would be stressed if I couldn’t get in touch with my neurologist or his nurse, you can always see if you can get a different neuro?

Well if it doesn't go well I will look into a new neuro. I find it hard to find a good one though without knowing anyone to get a reference from. I did try a new one recently recommended by the national gbs/cipd organization and I can tell you it was a waste of my time. He wouldn't answer any questions and I would ask again and he would avoid answering, he wanted to run his own tests which is ok, but why on earth would he not go ahead and run the spinal tap and get that out of the way? One thing I am learning is to take someone with me and into the room of any new appointments. That way I don't feel so crazy if I don't completely understand a doctor. As I think I have said I have a cervical spinal cord injury and also herniated discs above and below where I have the injury and this doctor took my head and stared moving it very quickly up and down then before I could stop him he started to do it sideways and I grabbed his hand and said no that hurts way to much.

If you looked this doctor up you wold think he might be the perfect doctor to go to so now I'm even questioning researching a doctor before you go and see a new one. He also never asked about my daily activities. Just did a few strengthening tests and said my diagnosis was incorrect. Then I heard him in the hallway say he knew what was wrong with me but he didn't know why I had so much pain. So of course I asked him to come in and again asked him about what he said and he still would not tell me anything. He ran a bunch of blood tests and I asked why? And he wouldn't get an answer, but when I looked up the tests I could understand why he would run some of them but why he wouldn't give me an answer is beyond me.

I think with any doctor you have to have an open dialogue as to what he thinks is going on, why he is running the tests, and then call you to tell you the outcome of the tests. I got my test results because I have an app on my phone for the lab that I go to that will send you your test results when you give blood. Then he wanted me to another nerve conduction test but really wouldn't say why except he wanted to do it all in his office. I just started feeling uncomfortable with him so I canceled the nerve conduction test.

I hope my regular neurologist has a great explanation as to what happened and why I haven't been able to get in touch with him because he specifically gave me his cell number to get in touch with him and I didn't ever abuse having that quick access. And the last visit I had with him I told him I felt uncomfortable texting because I knew he was busy and he said I was fine texting him and I rarely did it and not to worry about it.

So if this doesn't work out do I look for a neurologist that specialized in auto immune diseases? Or do I just try to find a good neurologist that I can get in touch with and that will follow through? I should be past the point and having treatment by now since my nerve conduction test was Nov 13 and on the 18th I was told he was setting up the spinal tap test. Also I understand there are times that sometimes the protein may not show up in your spinal fluid but it still doesn't mean you don't have the disease and you need someone who will continue to fight for you with your insurance. If you only knew I went how much I went through this same thing in getting treatment for my neck which in the end there was no treatment because the damage was permanent. I just didn't know that at the time. My spinal cord isn't completely severed but enough damage that I have nerve damage to my neck and I can't sit at a computer for long periods of time or life anything heavy and walk with crutches. But the crutches came because I ended up with neuropathy after the surgery. Now I wonder if that was also the beginning of the CIDP and it just went undiagnosed?

What I would do is look up your hospital websites and look up the neuro dept and look up their doctors and what they specializes in. When you find one who specializes in GBS/cidp and other neuro issues. Then call to see if you can get into see one and ask them if they take your ins.
Start from there.

Thanks Paula and I do apologize that I ramble. It's been a problem of mine. I can't seem to just say blank and be done.

One problem is there are not neurologist where I live. There are a few but you never hear of anyone going to them. Everyone goes to New Orleans or Houston and Houston I can't go to because of my insurance. So it's not easy to just make an appointment to see if I'd like a neurologist. I have been looking at doctors where i first went to see my neurologist and thee is one that specialized in multiple sclerosis and also what ever the specialty is when you are able to do the nerve conduction test so I wondered if she might be a good choice? I couldn't find any there though that said they specialized in auto immune diseases. I got a tip though that at one of the hospitals here there were neurologists that specialized in CIDP so I called and was told they were not taking new patients until April. So I'm wondering if a group of new neurologist are coming in to this area?

I also want a good neurologist that will be there to fight for me with my disability. I have no idea why I seem to get that lotto ticket of being reviewed so much and others never seem to have a problem. I looked back and since I became disabled I have been reviewed every 2 years. Lost one review on Nov of 2011 and it hadn't even been 2 years and I got another review letter. I just filled out and sent it in. But when I lost the one in 2011 I had to hire an attorney again. I am an expert on what to do if this happens. I know people that are on disability that don't need it yet they have no problems nor are reviewed so I can't figure out why this happens to me. So that is of big importance to me also. If I were running or doing things I am not suppose to be able to do then I'd not be in such shock about these review. I'd love to go back to work because I'm tired of being poor!

Anyway I appreciate your input and will try that.

No problem, my first neuro said I didn’t need my meds anymore or scheduled me for an IVIG at all! Came to find out he was only interested in MS and ALS patients. So by accident when I relapsed I went to a different hospital I found my now neuro, she did ALL tests to rule out cancer etc. found out I got GBS/CIDP from the flu shot!
She has an amazing nurse that if my nuero can’t be reached she will do all the leg work and call me back.
Disability I did the form myself and was approved last August. I cannot work or drive and wishe I can still do both!
I hope it works out for you! Keep us posted!

I have IVIG every 4 weeks. I see my Neurologist every 6 months. I was diagnosed with CIDP in December 2012. Hope you get things worked out.

I see mine about once a month. Some infusions go up. I know of some that get them 48x a year.

btw...I get IVIG ever 3 weeks