Steroids better for CIDP says Dr. Parry…
AnonymousMay 9, 2007 at 12:30 am
I was fortunate enough to be able to attend the MN GBS/CIDP meeting in the Twin Cities last weekend. The speaker was Dr. Gareth Parry, who spoke for over two hours straight, also taking questions as they came up. There are so many new & interesting things being researched right now, but what he said about his current treatment for CIDP really shocked me.
He said that they are now mostly using steroids, & not IVIG for the treatment of CIDP. Oral steroids in high doses can be hard on the stomach, so they have the patients receive pulsed steroids, or weekly solumedrol (prednisolone) infusions. They have found that if the patient receives 500 mg instead of the old dose of 1,000 mg (1 gram) that they can achieve the same results without all of the horrible side effects. He also mentioned how much cheaper it is, as well as how much easier the infusions are to give.
I remember when I was at my worst, I was given IVIG & it did not help me at all, but it was the solumedrol that kept me strong enough to stay at home. How I wish I had been given only 500 mg per infusion & not 1,000 mg! He still recommended IVIG for GBS though. I learned so much more, but will post other things later on. The research going on for fatigue is really interesting.
AnonymousMay 9, 2007 at 8:29 am
There must be 2 groups of CIDP patients. I was given oral steroids–60mg per day without IVIG after they changed my diagnosis from GBS to CIDP. I was initially diagnosed in May 2006 but relasped 3 times by July at which time they changed my diagnosis to CIDP and started steroids. Initially I improved, but then relasped each time they tried to wean me from the high dose steroids. I didn’t improve when they just put my dose back up, I got IVIG again and I would improve. I changed neuros and the new Dr felt that I was never really in remission with the steroids. He started me on IVIG every 3 weeks, methotrexate and we are slowly weaning the steroids again. I haven’t had a relaspe since January and my grip strength has impoved 30% since March. 🙂 As with everything I guess, some treatments don’t work for all patients. I don’t know the comparison on 500mg IV verses oral, maybe the dose I was on wasn’t high enough. I still got the side effects though.:(
AnonymousMay 9, 2007 at 9:15 am
well well well. I”ll be sure to mention this to my neuro if he ever returns my phone calls. He was trying to ween me off pred. 3 weeks ago I was a slightly overweight but very active person with mild cramps and some bad days. Now I’m 12 lbs heavier and am having a hard time walking. No wonder he doesn’t want to talk to me.
Thanks for posting this.
AnonymousMay 9, 2007 at 9:41 am
I’m so glad you posted this. As you know, Dell has not been doing well and lossing ground. We have been fighting fevers and the ENT, Pediatrician with 30 years experience and neurologist can not figure out why.
When our pediatrician called the neuro. he said he had talked to “someone up North” (don’t know if it’s North Mississippi, North Alabama or North Dakota, lol) and they said Dell should be put on high dose steriods.
We will be admitted Friday-Sunday for the steriods. If Dell weighs 11 kg, 21 lbs, what dose would Dr. Parry recommend?
Thanks again for your post, I’m excited about this.
AnonymousMay 9, 2007 at 10:30 am
pam & jan,
interesting posts. a particular Rx will not work on all. so, if one doesn’t work, another should be tried. my opinion is to try the ivig first. i wonder why we never hear of pp as an on going treatment for cidp? take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 9, 2007 at 12:15 pm
[B]When Frank was on steroids they actually made him worse, so the Neuro took him off of them. Steroids aren’t for everyone, just as IVIG isn’t for everyone. Plus you have to be extremely careful of your bones becoming brittle and breaking. Alot of people taking steroids have had to have hip and knee replacement surgeries for the bone loss. They can make a person very hyper and sometimes quite nasty.
If you take steroids please be very careful.[/B]
AnonymousMay 9, 2007 at 12:46 pm
I am well aware of the side effects of steroids having had weekly & sometimes bi-weekly infusions of 1,000 mg of prednisolone for 21 months. I gained 80#, had to have cataract surgery in both eyes, still have a rash all over my body, was extremely irritable on the day of the infusion, didn’t sleep that night of my infusion, etc. But according to Dr. Parry, he swears that if the steroids are infused, & they are given in 500 mg doses instead of 1,000 mg, the side effects are minimal.
I am not advocating this treatment, just passing along what I heard at the conference. I am as surprised as all of you that this is now the first treatment of choice for CIDP at the U of MN where Dr. Parry practices. They seem to feel that giving monthly IVIG is not necessary for CIDP & should be used mostly for GBS. I just wonder if it has something to do with the cost of IVIG? Maybe some insurance companies are starting to balk at paying for regular IVIG infusions. At any rate, he said they rarely use IVIG for CIDP patients anymore. It was certainly news to me.
AnonymousMay 9, 2007 at 1:28 pm
The Mayo Clinic has used the pulse steroid protocol (at 1g per week over 12 weeks) for awhile. Although my case is not clear CIDP, when I saw them in April 2005 they saw evidence that my neuropathy/MND was immune-mediated and prescribed the steroids rather than IVIG. I didn’t understand all of this at the time, but I believe they said that the steroid protocol was their preferred treatment for autoimmune neuropathy. It didn’t work for me.
AnonymousMay 9, 2007 at 3:48 pm
you said, “I just wonder if it has something to do with the cost of IVIG? Maybe some insurance companies are starting to balk at paying for regular IVIG infusions. At any rate, he said they rarely use IVIG for CIDP patients anymore. It was certainly news to me.”
the thought crossed my mind too & i must say, not lightly. bean counters are always at work in any field. and, i bet, if a million $ can be saved & only cause the death of one person, the powers that be will go for it. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 9, 2007 at 5:11 pm
Gene, I agree with you 100%. Insurance companies are sick they way that they treat people. It’s not about people, it’s about the almighty dollar. And yes, I realize that it’s all big business not just the insurance companies.
I’m actually astonished to hear that they aren’t using IVIG to treat CIDP. Steroids made Emily worse. She went from her eye relapsing every 12 days to every 9 days when she was on her highest dose. Everything that I’ve ever read says that IVIG is better because it has less side effects & lasts longer. Hmmm…
It just goes to show that not every treatment is going to work for every person. I hope that Dr Parry is taking that into consideration…I’m sure he is.
Thanks for sharing. I wish that I could go to a conference like that. I’m sure Emily’s atypical case would have those specialists scratching their heads, LOL.
By the way, Emily had an appointment today with the neurologist. He said that this is the BEST that he’s EVER seen her & next month we are going to move her treatments to every 10 days. YAY!
AnonymousMay 9, 2007 at 6:49 pm
I totally agree with you about the insurance companies, I have been saying it for over 2 years now. I still think IVIG is beneficial to some and I hope that those treatments are not cut off completely like I think they will be.
Steroids are a very cheap medication and that’s probably why the insurance companies pay for those treatments.
It just ticks me off that people cannot get the treatment of their choice.
AnonymousMay 10, 2007 at 12:39 am
I will be following these posts with great interest.
My biweekly 3 days of IVIG isn’t giving me the former energy boost as of January 2007. The neuro added Methotrexate to the batch (in pill form) and we’re hoping to one day have less IVIG infusions. My CIDP is slowly progressing and the fatigue is unbelieveable.I now have home health care for IVIG as I’m unable to safely drive to/from the clinic.
We haven’t tried Predisone as I am very medicine side effect type person. I would love less nerve pain and a little more energy.
Seeing the neuro May 24th-I’ve got lots of questions.
Thank you for the information””
AnonymousMay 11, 2007 at 8:55 am
My treatment began with high doses of prednisone and IVIG’s. I’m a diabetic and the issue with steroids is that my blood sugar numbers were sky-high. I’m down to 5 mg every other day and my glucose is in the normal range. If I have IVIG, I have to take 30 mg 2 days before and days of infusion because I’ve developed a terrible cough with the IVIG and have breathing problems.
Oh, well, nothing’s perfect.:) Just a juggling act I think — all the time!
AnonymousMay 11, 2007 at 1:39 pm
We’re in the hospital now, getting 5 days of solumedrol. For Dell’s weight of 10 kg, he’s getting 160 mg a day.
The dr. has him on low salt, low carbs but I don’t know what the low carbs are about.
We are not doing ivig, so we will see how this goes. Does anyone know when we will see a difference, if we see a difference.
AnonymousMay 11, 2007 at 4:08 pm
Thanks for your post. The diatician came in to talk to me and they will find something for Dell to eat as normal as possible. It seems like the hospital gives way too much “fast food” items. I think their food is good here, we eat here enough but sometimes I open Dell’s tray and there’s chicken nuggets.
The good thing about it, he really doesn’t like those kinds of foods.
They are moving us into a larger room so that our other children can spend the night and be with me on Mother’s Day. I miss our other 2 when we are in the hospital. They are cared for by family, but it’s not the same as mom and dad.
AnonymousMay 12, 2007 at 7:32 pm
Lori, how is it going at the hospital? I was surprised to hear that you have to stay there for 5 days. I guess they want to go slowly considering Dell’s age.
It was good to talk to you on the phone even though I probably didn’t have much insight to offer except that it is highly unlikely that Dell has my variant given he is only 3 years old.
AnonymousJanuary 8, 2008 at 10:08 pm
Dell’s mom, Lori , suggested I contact as I was very disappointed and stressed tonight after my husbands app. with Doc. Bill (my spouse) is scheduled for nerve bioposy and he was not going to get one if spinal tap showed cidp as we all except but the spinal tap showed nothing and he said it could be he is untreatable. A clinal test once done of people with no results and that is what they came up with, however he still thinks he has cidp.
Docs game plan are steroids (by mouth) and then later imuran. I have read about from a few tonight and it sounds not good. I also saw where you went to a conferance and looks like ivig is not done as much maybe because of the cost.
This doc thinks his plan better plus hard to get patients off ivig. and expense 10,000 every 6 weeks. I would like him to get another opinion but he says he is tired of waiting . Lori got Dell in right away but maybe because he was to bad. Bills apt for nerve is Monday and 2 weeks later for results. Does it really take that long. My Bill says doc probably waiting because of imuran and Doc said waiting for healing of foot first. Does this sound logical.
Have you heard of spinal taps showing nothing and in effect some patients cannot be treated. This was a study he read about. We are hoping he does have something treatable.
After giving my husband some info from this site he now says maybe he would rather have ivig.
Please contact me
AnonymousJanuary 9, 2008 at 12:38 am
Immuran is a cytotoxic immunosuppressive which delays any kind of healing ~ probably why the doc wouldn’t want to use it before the foot is healed. If you do a “search” on these forums you will find that nearly all do not recommend a nerve biopsy and the reasons why.
Before you proceed any further do all the research you can. Bill is the patient and has the right to say yes or no to any treatment. No one doc can know all the most recent research on any one disease for each of his patients. And a “good” doc will want to “partner” with a patient who is researching and looking for answers for his disease process. It is [SIZE=”4″][SIZE=”3″][SIZE=”2″][U]vital[/U][/SIZE][/SIZE] [/SIZE][SIZE=”3″][SIZE=”2″]for Bill to be as much in control of this whole experience as possible![/SIZE][/SIZE] Good luck and I wish you well.
AnonymousJanuary 9, 2008 at 4:27 am
Joan, YES spinal taps can show NO protein and you can STILL HAVE CIDP that IS TREATABLE. Man I got so annoyed when I read your doctor told you it might not be treatable, I think that’s a horrible thing to say to a patient even if it is true. My lumbar puncture did not show protein but I was in the middle of a relapse at the time – no reflexes etc. and EMG/NCV tests confirmed demyelination but I had NO protein in my spinal tap. I am currently being treated with IVIg with few side effects, certainly less than when I took predisone. If your Neurologist really has a negative attitude, or his pride is getting in the way of him recommending you see another neuro with more experience then you should just head out the door anyway. I went through 3 neuros before I ended up with the one who diagnosed me. The first was inexperienced and admitted he didn’t know what was going on, the second was arrogant and wouldn’t admit he didn’t know what was going on, the third said “I want to run some tests but I’m pretty sure you have a variant of CIDP.” Don’t ever let them tell you he can’t be treated until you know what is wrong – that’s just not logical thinking on your doctor’s part.
In addition, I don’t believe what he said about it being hard to get patients off of IVIg. I can’t imagine that IVIg would be any more addictive to your body than steroids – I think it’s actually the opposite, I needed more in the beginning than I do now. And FINALLY, it’s not up to him to decide how you and your insurance company pay for treatment – if IVIg works for you, your insurance covers it then it’s not up to him to say “it’s too expensive.”
Sorry for my rant but if there is one thing I’ve learned through this medical mystery tour is that you really have to take charge of your own diagnosis and treatment and help the doctors make the best decision for YOUR HUSBAND, not for the insurance company or the doctor. 😉
AnonymousJanuary 9, 2008 at 9:48 am
While I was brushing Dell’s teeth last night, I was thinking about our conversation. You told me the dr. told you he would prefer pill steriods over the iv because “he needs them everyday”.
He’s thinking you mean get one iv treatment of steriods and that’s it. He’s either a quack or he’s not up on what’s going on with cidp. Dell gets FOUR iv’s of steriods each week. It is put into his port. The nurse comes and accesses him even though I can do it too and she leaves. I give him an iv each 6 hours. It runs for 30 mins. A monkey could do it, it’s very easy.
I’m not saying he should be on iv steriods, I’m just explaining to you that iv steriods can be done very easily over the pills, with less side effects and they can be done each week. The research shows they stay in the system for a few days, so Dell’s body gets a few days rest, which it needs.
Like I told you last night and like Julie says, it’s none of the drs. business what the insurance company will pay. I don’t know why they are so concerned about costs, it’s not coming out of their pocket.
Good luck, please call if you need anything.
AnonymousJanuary 9, 2008 at 10:23 am
Before I was given steroids back in 1984, my Neuro filled a legal sized piece of paper with all the side effects. I have been on steroids by mouth and occasionally by IV since then. It wasn’t until 1995 I was given IVIG, which I am now getting every three weeks. Although steroids have helped me with my CIDP, I have been hurt tremendously physically. My doctors are blaming the steroids for my brittle bones and loss of cartilege in the joints. These are just a couple of things I am dealing with now. My Neuro has been trying to wean me off the steroids, but it seems as though I cannot get lower than 10mg per day. Every time I go lower it seems as tho I have another relapse.
AnonymousJanuary 9, 2008 at 1:15 pm
I’ve been on the steroids route for a while now. I understand its not for everyone, but it seems to be ok for me. My doctor paired it up with large levels of calcium (for osteoporsis concerns, that steroids cause.) and now, has added Tagamet for my stomach. I’ve tried other medical routes and this one is the only one that my body hasn’t drastically rebelled against.
I have gained weight, but, am watching what I eat, (I’m a lot hungrier.) resist the urge!:) and am trying to exercise:rolleyes: (which is hard to do.)
I don’t see a drastic improvement of my symptoms, but the pain is less than it used to be.
Now, everyone varies, and each case is different. Also, from talking to people the treatments vary between GBS and CIDP.
I’ve had CIDP for 2 years now. (diagnosed a few months ago.)
So, just my opinion……..
AnonymousJanuary 9, 2008 at 2:09 pm
I asked about PP ongoing as well since I knew the IVIG was so costly. He said the side effects and risks from PP far exceeded the side effects and risks from IVIG. He only uses this if nothing else works. I had some success with my first IVIG and a lot of success with IVIG and pulsed Solumedrol. BUT I have gained 4 pounds. In a month. And am not pleased with that. I’m hoping it was holiday toffee/fudge/fruitcake, etc, but I was pretty good with all of that. The side effects of IVIG, even long term, are basically very tolerable, and would tend to think it is a cost issue as well.
January 9, 2008 at 2:48 pm
Just read your post to Gene regarding ongoing PP. Am curious to hear what you’ve been told about the long term effects of PP. I have been on PP since 1996, with treatments ranging from once a day for 5 days, to weekly (my current protocal), sometimes I have been able to go monthly, but most often every other week when I am not trying other medications. I take 500 mg iv solumedrol with each PP. In total, I have had just over 350 PP since ’96 and have had no side effects thus far.
I was on oral prednisone for about a year and a half and like everyone else my weight went through the roof. Doctor stopped because of potential kidney and liver problems. From time to time I also get a separate iv solumedrol, 1 gram a day for three days as a “booster”.
Of all the treatment protocals we’ve tried, PP and iv solumedrol have worked best for me. No luck with cytoxin, avonex, imuran, rutixn or ivig.
I am approved to try Tysabri, but have some reservations about the PML potential side effect. Like you, I had GBS (85) and CIDP (95). Appreciate your input. Thanks
AnonymousJanuary 9, 2008 at 4:28 pm
The problems he mentioned, and it was just quickly, were more during the treatment, such as electrolyte problems, bleeding disorders, need for hospitalization and the vein access issue. I thought it was a relatively benign procedure myself. I would say to not worry about it, that is a lot of PP you have had!! The steroid issues are a big concern of mine right now. From what I understand though, the short periods of Solu, like you and I received, are not an issue. Are you going to do the Tysabri?
January 9, 2008 at 4:56 pm
This reply is to Gabrielle,
Hi Gabrielle. I actually found an abstract regarding the cost of ivig. It said that short term ivig may be less cost effective, but longterm, compared to steroids or immunnosuppressants and their long term affects and complications, ivig was more cost effective. I could fax it to you if you need it for your doc to continue ivig. I gave our doc that info as well as cell cept info to prove our case for ivig exclusiveley. He agreed w/ the info and Kevin just completed day one of his 4 day monthly plan.
AnonymousJanuary 9, 2008 at 5:03 pm
Feeling even low today after last night. Thank all of you very much for your input. I am still working thru this thread so I am not sure Lori, and Julie and Fred can see this also. I am hopefully going to learn how to use this forum. I want to send this to my son:curiousscott if I can e-mail it. Good time to try.
This has helped me so much. I am copying this for my husband to see.
Thanks so so much
AnonymousJanuary 9, 2008 at 10:33 pm
hmmm… ivig & pp are both expensive. excluding the boiler plate side affects statements, pp is more invasive than ivig. but i think not that big a deal. if it were me, i try the ivig 1st & if it works, as is in your case, stick w it. if it didn’t work, then the pp. it’s the steroids that one should try hard to avoid, if possible. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 10, 2008 at 12:02 am
[B]PAM[/B] Thank you for sharing the information from Dr. Parry. I sent you a private message earlier today. My wife, CIDP w/Mgus was treated at the U of Minnesota and at the Mayo, much like yourself. Very simular paths, you and my spouse.
[B]PP vs Ivig.[/B] PP is invasive, and leaves you vulnerable for infections with the PIC line. Any Dr. will tell you of the very high percentages of people with PIC lines, we’ve heard up to 80% of them, will develop an infection. A quick recap of my wife’s PP events.
[B]PP number 1) year 2000.[/B] When installing the central line they puntured her lung. A chest tube had to be installed. 5 days after the treatments my wife lost the ability to walk. Had to resort to 8 months of Cytoxan.
[B]PP number 2) Year 2005.[/B] Installation of central line went well. Treatments were smooth. They wanted to repeat treatments and left the central line in. Shannon (my spouse) got an infection, ended up in ICU as a result.
[B]PP number 3) Year 2007[/B], 3 weeks ago. After 3 treatments in 3 days they discontinued, deemed not effective. She was hospitalized at the time working through a severe relapse.
[B]IVIG–[/B]Shannon receives every 14 days along with a gram of solumedrol. Has rarely gotten sick, sometimes the headache or tummy issues, but mostly easy. Usually works, but over time it seems as if the IVIG just wears out, or the disease figures ways around it. She has been approved for Tysabri and has begun the process of “washing out” some of the immunosurpressants.
Having a forum like this is immensely useful. I can’t believe that I just found it a few weeks ago, after 9 years with this incidious disease. Anyway, being able to share and compare symptoms and treatments, being able to hear how others have responded, or not, to varying protocls is amazing. Having this kind of information from the vary people who live with these health issues VS just hearing from the Medical community is unmeasurable in value.
OK->I’m off the platform now and should go to bed. Be well all. Joe
AnonymousJanuary 10, 2008 at 10:23 am
Gabrielle, about that weight gain? Do you get a good bit of saline infused prior to the IVIG infusion? and, Is your IVIG a brand that is diluted with saline as well?
I ask because the weight gain of exactly 4 pounds happened to me! I would gain 4 during the infusions and lose 2 before the next infusion. It added up over a couple of years. Asked my doc about it, asked the brand manufacturer and no one had a clue. When I changed to a sucrose diluted IVIG weight gain stopped.
I’d initially figured it was all the pre-infusion hydration and that the IG dilution weighs a bit and that the IG doesn’t disperse as quickly from your system…
It’s just good to know I’m not alone or crazy about this.
January 13, 2008 at 2:56 pm
Hi Gabrielle and all,
I plan to talk about Tysabri with my doctor again the first week in March. I will be off cellcept about four months by then. I was concerned about the potential for PML, but the problem appears to be with patients taking both Avonex and Tysabri. My stent with Avonex lasted 9 months with no benefit so I stopped it and went back on PP and IV Solumedrol last year.
I have been lucky in that they have been able to use regular 17 ga needles in my arms the past 3 1/2 years, so my risk has been no greater than for other IV procedures. On a lot of the PP they have been able to use a smaller angiocath (sp?) in my wrist for the return which is nice. When they first began PP I had four vas caths “installed” and all became infected, so I understand that risk all to well.
I do get calcium IV during the PP to offset some of the potential side effetcts. I don’t have the weight gain problem with the pulse IV solumedrol and my doctor says the side effect potential is much lower than with oral streoids.
I’ll let you know about the Tysabri decision. I am also following another post about Tyasbri to see how Shannon does with it.
P.S. A hint for those taking IV’s for PP, IVIG or any repetitive IV, rub the IV sites with vitamin E cream every night before bed. It seems to reduce scar tissue build up at the puncture sites.
You must be logged in to reply to this topic.