I've been getting IVIG since last November and started having 2 treatments every 4 weeks after the 5-day loading dose. When I told my neurologist at my follow up appointment in February that I didn't feel I was feeling much different, she changed my dosing to 2 treatments every 3 weeks. Now I just saw her this past week and told her I still do not feel much different and she has ordered prednisone, 50mg daily, for me to take everyday and to continue the IVIG every 3 weeks. I've read that the treatment for CIDP is either prednisone OR IVIG, not both. Has anyone else had experience with this type of medication regimen? I am not thrilled over the possible side effects of the combination of medications.
Thanks so much for any information you can provide!
Hi. I did both for 3 years. There weren't any complications from doing both. I did methylprednisolone with ivig because it's infused and avoids stomach issues. It was once a week and as we stretched out the ivig treatment, the prednisone was stretched too. Toward the end of 3 years it was once every 3 weeks. You just have to weigh the benefits and side effects and decide as you go. If you stay on it for a while and you decide it's not worth the side effects, you may have to wean slowly for your own cortisol to return.
Thanks for responding. It's good to hear you had no complications. I'm worried because I already get methylprednisolone 80mg IV before and after each IVIG infusion. My concern is that my neurologist wants me to take 60mg of prednisone everyday orally as well as continue the IV prednisone with the IVIG treatments every three weeks. I'm just nervous because of all of the side effects of steroids...I thought by being on IVIG I would avoid the daily prednisone, since IVIG is considered the "first line" treatment.
mabes said:
Hi. I did both for 3 years. There weren't any complications from doing both. I did methylprednisolone with ivig because it's infused and avoids stomach issues. It was once a week and as we stretched out the ivig treatment, the prednisone was stretched too. Toward the end of 3 years it was once every 3 weeks. You just have to weigh the benefits and side effects and decide as you go. If you stay on it for a while and you decide it's not worth the side effects, you may have to wean slowly for your own cortisol to return.
I had 10 treatments of IVIG,they did nothing to help.Then I went on 80 mg of prednisone a day.After a week or so I went into complete remission.I am now on 5 mg a day and soon to cut that down to 21/2 a day.Prednisone for me was the wonder drug.I am back to living a complete normal life.I have this brand spanking new walker that just sits in the corner now.I`am very blessed.Give it some time Cookie hopefully you will have the same results as me.Good luck
I wouldn't be surprised by the amount your doctor is suggesting. My dosage was 1000 and tapered to 350 per dose. I don't know if anyone has both mixed oral and infusion doses but I am sure your doctor knows. I only did infusions. I did feel a difference immediately following the infusion and it would last days even at my worst. So, if your at 80 or 160 per infusion it may not be enough. I don't know what the magic number doctors go by. If there isn't a positive response quickly than that can also be considered in deciding to continue with the daily dose. The first line of treatment was not enough for me so we had to add the prednisone which is the 2nd line. I know your concerns and you are right to feel that way. But as John points out it may be enough to jolt a response in the right direction. I would expect you to feel improvement very quickly and then you'd know one way or another what works and what doesn't. If it does work then you'd switch to a different immune suppressant over time because prednisone is not a long term solution.
Thanks to both of you. You've alleviated much of my stress over this.
Mabes, you have said exactly what the doctor said, that she wants to see if taking the prednisone shows a positive response quickly, if not, then she will not have me continue with it. I'm staying on the IVIG because I'm really not sure that it's NOT helping--I do feel better, but then that might be the overall effects of the IVIG on my body.
John, I'm also concerned about the long-term effects of being on the prednisone, but if it works as well for me as it did for you, I guess being able to walk well and do the things I need to do in life again without so much difficulty is worth the side effects...
So glad I posted. Getting set up for my second IVIG treatment this week now.
My son was diagnosed with CIDP 15 years ago. He has been on Prednisone and IVIG for most of that time. It is the thing that works best for him. He also takes cellcept. Prednisone does have many bad side effects especially in children. My son began prednisone when he was 10 years old. He is now 25 and takes 35mg every other day and 2.5 mg on the alternate days. Adding IVIG is what has helped him be able to decrease the prednisone and he is still in the process of decreasing it even more. Without the prednisone my son actually go so bad that he was paralyzed twice, each time for almost a year. We had no choice it is what kept him walking and moving. He is now stable and has been for the last 8 years or so. He is able to walk long distances with AFo braces and can do most anything except run and jump and still has difficulty with stairs. He has even been able to snowboard the last three winters. Praise God! You have to do what works for you and just try to take the least amount of prednisone that you can and still feel improvement. Hope this helps.
Hi Cookie, yes. I've been on IVIG and prednisone since 2010. My dosage has been up and down. My neurologist tried to taper the dose and then stop which I did. Wow, big mistake. Around Thanksgiving 2013 I was off prednisone and by Christmas I could barely walk with help. I was in so much pain. Lots of inflammation lots of pain. I was unable to do anything. Getting out of bed was painful. Now, I'm back on prednisone 10mg daily, ivig 8wks for now, and imuran 200mg daily. I also take neurotin 600mg prn and tramadol 50mg prn.
So your IVIG doses are 8 weeks apart? Do you feel they work OK that way? I've never taken Imuran--in fact, my neurologist has never suggested it at all. Also, since I started the prednisone, I've developed a funny rash on my arms and calves. It appears as red, raised spots in clumps. The whole area is kind of itchy too. I've been putting Aveeno Oatmeal lotion on it with some relief. It seems like every treatment has some down side to it!
Cookie
Missy said:
Hi Cookie, yes. I've been on IVIG and prednisone since 2010. My dosage has been up and down. My neurologist tried to taper the dose and then stop which I did. Wow, big mistake. Around Thanksgiving 2013 I was off prednisone and by Christmas I could barely walk with help. I was in so much pain. Lots of inflammation lots of pain. I was unable to do anything. Getting out of bed was painful. Now, I'm back on prednisone 10mg daily, ivig 8wks for now, and imuran 200mg daily. I also take neurotin 600mg prn and tramadol 50mg prn.
In my experience , prednisone is the closest thing to a “cure” for cidp.
Everything else serves primarily as a booster to the steroids. This hopefully allows one to take less and less of the steroids, thereby minimizing their potential side effects.
As my neuro says with a smile,
“Steroids are your friend”.
I have not been able to taper lower than 5mg/day without I’ll effect, so holding steady at 20mg.
So Jeff, you haven't had any ill effects from the steroids at all? That's wonderful for you especially if it's working. I didn't feel it was working any better than the IVIG and it made me feel very strange when I started up the 50mg dose. The rash came out as I started weaning down off of the prednisone. I didn't feel any worse when I stopped it completely, but I still have the rash. It also sounds like you have a great relationship with your neurologist. I have never had that--its SO important with this diagnosis to be able to work closely with the doctor when you start up a med. It took her over a week to get back to me about my concerns and another week to order the lower dose pills so I could wean down. I really need to find another neurologist!
Jeff said:
In my experience , prednisone is the closest thing to a "cure" for cidp. Everything else serves primarily as a booster to the steroids. This hopefully allows one to take less and less of the steroids, thereby minimizing their potential side effects. As my neuro says with a smile, "Steroids are your friend". I have not been able to taper lower than 5mg/day without I'll effect, so holding steady at 20mg.
Well, Cookie, I mean that each time I’ve tapered down on the roids, I’ve experienced ill effects, symptoms of cidp seemed to flare up.
As far as side effects of the prednisone, yep. I’ve got them. A couple of extra inches around the waist (which I’m trying to fight with exercise), I broke a bone in my foot last summer when I dropped a trailer hitch on it. Take Fosamax once a week to counter the calcium robbing effect and keep my bones calcified. And, of course, the infamous steroid irritability. I tend to be a little more blunt and less likely to be diplomatic. My wife might describe it differently. (">)
As soon as my neuro relocates to his new hospital July 1st
Oops.
After July 1st,I want my neuro to set me up with another round of plasma pheresis. I received 7 of them after my initial diagnosis in summer of '12, but none after that. Since then it has been only cellcept and prednisone. I think it’s time to flush out the bad antibodies. I’m experiencing cramping in my hands , feet and groin, lots of tingling , extreme fatigue and pain at night.
But not the weakness and wasting I had when it first struck in 2012.
Not complaining, mind you. I feel so blessed every time I look at my wheelchair which I no longer need. I just need to be in tune with my body and push the docs to make adjustments.
Over the last 4 years I've had over 60 nights in the hospital for IVIG infusions. They have to be done slowly because I've had spinal meningitis twice from them and my BP also drops very low. I really don't think I received much benefit from the IVIG at all. About 20% of us don't..
Simultaneously, I was on 65 mg of prednisone and first Cellcept, then switched out for Imuran. They tried to wean me off the steroids and Imuran, but last summer I started getting weaker, so back up to the 65 mg with the Imuran. I've refused the IVIG and the neurologist is now in agreement. So we've tried to wean the steroids again these last 6 months, and I was finally down to 15/0 on alternate days and Imuran 1,000 mg per day. Well the disease is breaking through and I'm getting weaker. My arms and hands are more involved now than ever, and the bad twitch is back on my face. It's a little frightening, even for a long-term patient like me.
Last month they upped the steroids to 60 for a week, now 40, next few days 20, etc. The long-term effects of prednisone are obviously a big concern, but I may not have an option. Also, I'll mention that in an earlier relapse, the neurologists determined I may have had weakness actually caused by the steroids - steroid myopathy - and I got significantly better as I weaned off them that time. Such a mystery this disease and it's treatment.