Third EMG tomorrow…
AnonymousApril 25, 2007 at 8:52 pm
😡 Tomorrow I have another EMG to see if all of the IvIg I’ve had is working. My appt last mo, as I’ve posted…the dr said he doesnt think it’s working.
He told me we’d need to think about plasma exchange or high dose steroids.
Well, I dont have time available to take off work for plasma exchange a few times per week and I dont want to mess with steroids b/c I see what it did to my mother…she had treatment for pain with breast cancer.
Are there any questions that I should ask him tomorrow about other alternatives ? I have the ivig every four or five weeks and I thought about asking to do it more often…like ev two or three weeks. The only problem is, I break out with a rash 5 to 7 days after treatment and would end up probably having a constant rash. But, I dont care. I can deal with the rash.
I honestly see no improvement myself.It is so scarey not knowing what this is going to turn into. I read about others who do so well with the Ivig and unless my improvement is very very subtle…I’d have to say it’s not working and agree with the dr.
I’m stressed. Nothing going right in my life right now.
please let me know if anyone has any ideas that I might throw out there for the dr to hear. I’ll let you know how the test goes.
have a good night everyone.
AnonymousApril 25, 2007 at 11:33 pm
I also have a EMG scheduled for tomorrow for same reason. The problem is the IVIg can be “working” by halting the nerve damage. It takes time for the nerves to “heal”. Not ever one make dramatic improvements. CIDP seems to have many faces and effect each of us differently.
See if you can find a way to relax a little. Stress just adds to the problem. I know it is easier said than done.
The only advise I can give you is research any alternative that are suggested before you agree to try them.
AnonymousApril 26, 2007 at 4:34 pm
Hi Stacey – I know how scary it is when your dr. says IVIG isn’t working – my neuro told me last month that there may come a time when it won’t work for me. I read on an earlier post that someone had this problem – but did some of the plasmapheresis(sp?) and then went back to IVIG and got better results. That person said it was almost like giving the IVIG a break (I kinda thought about how you should switch shampoos every once in awhile because your hair needs a change – I’m not being flip, but it made sense to me put like that). You could ask your neuro about it – I’m going to broach the subject with my neuro next week. Hang in there – ! I’m sure other folks can give you more info but I just wanted to send you a cyber hug 🙂 Good luck and good health!
April 26, 2007 at 9:27 pm
I take Cellcept 1000mg twice daily along with the IVIg every 6 weeks. You might ask if there is something like that to take. My neuro said it’s a matter of trying different combos because there doesn’t seem to be a set of rules on what will work, as with the Lewis-Sumners steriods don’t seem to work. I’ve done my share so I know that’s true
AnonymousApril 26, 2007 at 9:58 pm
The hemotologist that orders my IVIG from said that it only stays in your system for 21-28 days and that most people need to have IVIG every 2 -3 weeks. The neurologist that I see at SHANDS in FL told me the same thing. I get IVIG every 2 weeks and once it stops helping (even subtle changes are good) then I go in the hospital and have plasma exchanges every other day for one week followed by a loading dose of IVIG over a five day period. As was said, we are all different but, I don’t think an EMG is expected to change very much in a months time. Your nerves need time to heal, try not to get discouraged. You will be in my thoughts and prayers for your test tomorrow.
AnonymousApril 27, 2007 at 9:29 am
The EMG isnt much different than it was in Novemeber. He doesnt think I’ve gotten any worse but also not any better. My arm is so bruised today ! He did the needle and shocks from the neck down this time with alot of concentration on my arm. ouch.
Anyway, he said he thinks the disease is simply “in check”…slight chance it has stopped progressing and all the numbness and weakness is just what’s left. He doesnt want to do any more IVig at this point…bc of my reactions and bc it doesnt make things better…and wrote a script for 90mg of prednisone every other day for eight weeks and then wean. I also got something for my stomach to take and plan to call my GP…that I cant stand…and ask for a diaretic.
I’m very torn about taking this steroid. Havent filled it yet.
He also ordered a test…a skeletal bone survey to check for myeloma and a 24 hour protein electropherisis urine study. You get to pee in a jug for 24 hours.
( cant let my four year old son see this…he’ll want his own jug !) 😀
So, this is where I’m at. I’m suppose to go for the xrays today but am going to reschedule for next Friday.
I really like my neuro…I just dont like the treatment option. He said plasma exchange is pretty invasive and would rather hold off.
does anyone think I’ll need an antideppresant to go with the steroids ?
I think I could use it just b/c I’m already depressed.
AnonymousApril 27, 2007 at 10:55 am
Hi. I used to get Prednisone when I was young to treat asthma, and it did mess with my emotions. But I took it again several years ago for an ear problem and it did not have that effect.
I have been diagnosed with clinical depression for about 8 years now. I probably always had it mildly (my mom’s used to call me “Jeckyl and Hyde” because of mood swings), but it got kicked up after my son was born. If you think you are depressed — with or without the Prednisone — I urge you to talk to your doctor or a qualified therapist. With medication and therapy, I was able to get back to normal. I’m still medicated (no therapy anymore) and am usually OK, but I have to admit that coping with CIDP, especially before I was treated, could send me into a depressive episode. I still get bummed out when I think about having this for the rest of my life and all the implications, but who wouldn’t?
After trying many antidepressants, all with nasty side effects, I went on Celexa (an SSRI). It made all the difference and, for me, had no immediate side effects. After several years I switched to Wellbutrin (SSRI’s have long-term side effects including weight gain). I’ve been on Wellbutrin for about 5 years now and have no problems with it.
I wish you the best of luck in your treatment for CIDP and also hope that you get help if you think you’re depressed. If you’re truly clinically depressed, it won’t go away on its own.
AnonymousApril 27, 2007 at 3:41 pm
Thanks Caryn for your advice.
I think I am more sad and stressed than “depressed”. I have good days…and once in a while a day where I could just cry for hours. Mostly just feeling sorry for myself. Trying to adjust to all of this and the uncertainty that comes with it.
It’s something that I feel alone with…and that’s tough for me. But, I’ll get thru it…I’ve been through a whole lot in my life and I’ll manage this, too.
I have to put my dog to sleep this weekend and that doesnt help.
And, Sunday is the one year anniversary of losing a very dear friend…she was like my second mom. I so wish I had her hear to share this with b/c she would “get” it.
For now I hold her in my heart until I can be with her again.
have a good weekend everyone ! It’s going to be sunny and 80 in Omaha …time to work on the tan.
AnonymousApril 27, 2007 at 4:10 pm
I have been where you are now, and until I did all three–started pred at 60 mg, had 5 days of plasmapheresis, and then IV-IG, I just couldn’t recover. Once I did all three together I started to improve almost immediately. A year later I was able to do everything I did before, except, of course, lose weight :). But I was running 2 miles a day after not being able to walk 1/2 block without falling, so that was quite an accomplishment for me. I had to get this done in the hospital, but when I relapsed a few years later I did everything as an outpatient.
The pred did make me angry, but my doctor decreased the dosage until I was on 10 mg every other day, which is my maintenance dose. I have physical side effects on this dosage (I’m 20 lbs overweight, and I have some early stages of osteoporosis), but my brain is fine. I’ve been on pred for 12 years now.
I’m not happy about being on the pred, and I have had a few relapses, so it’s not 100% effective, but I’d rather be chubby than in a wheelchair, which would have been the alternative for me.
You can always go off the pred if the side effects are too awful for you. If you’re on it for a short time there shouldn’t be any long term effects. You may even be one of the lucky ones who won’t need to stay on it!
AnonymousApril 28, 2007 at 12:56 am
like someone said I would ask for more frequent IVIG infusions. Usually they start with an every 2 weeks schedule then work out from there. I require a double dose every 4 weeks. Like someone else said the half-life is 21 days for IVIG, so at 42 days it is all out of your system. Thats how my Neuro explained it to me anyways. I would first ask for more frequent infusions, I know of a girl here locally with CIDP who requires infusions every 2 weeks, with 3 weeks being the max.
I also needed high-dose Prednisone in the beginning in addition to IVIG to help keep my CIDP in check, now I only require a low dose of Prednisone (5mg/2.5 mg alternating). I know that isn’t an attractive option. There are also some steroid-sparing agents they can use also like methotrexate and others (I have never been on them so am not sure what others there are).
I hope that helps, you definetely have lots of options to try and I would hope they would be willing to try more frequent IVIG first. Good luck.
AnonymousApril 28, 2007 at 12:56 pm
I have to agree with Jerimy in that you should try more frequent IVIG infusions. I think that the IVIG is working because you haven’t gotten worse. It’s stalling the disease process. You may not be healing much but not getting worse speaks VOLUMES to me about your treatment.
Actually I’m really surprised that your neuro wants you off of the IVIG all together & only on the steroids. I would think that he would want to try both at the same time for optimal results.
Prednisone didn’t work for Emily at all. She had all of the side effects without any of the benefits so I’m a little biased on my views of it. It does work for some people though. Like it has been suggested there are other drugs available as well. Dr’s recommend the prednisone first because it’s cheaper & easier to get though.
Go & get another opinion if your neuro won’t agree more frequent IVIG infusions.
AnonymousApril 28, 2007 at 3:54 pm
[COLOR=black]The side effects of prednisone are really different for each person. I believe that if you read up on the effects and prepare for them, they are much more manageable. The best site I have found discussing prednisone is [URL=”http://noairtogo.tripod.com/prednisone.htm”%5D%5B/COLOR%5D
[COLOR=black]I experienced many of the side effects. All of them were minor compared to the effects of CIDP. The severity depended on the dose and how long I had been at that dose. Some of them went away as my body adjusted to the drug. [/COLOR]
[COLOR=black]Prednisone dosage is almost always based on your body weight. My neurologist is not comfortable with doses above 1 mg/kg every other day, and with reason. At that dose, the side effects were tolerable. When that dose was no longer effective, we went with 0.75 mg/kg every day. That is when the side effects got particularly severe. Decide for yourself if the dose is too high for your weight. If it works out of more than 1 mg/kg every other day, ask your neurologist to let you try a lower dose. [/COLOR]
[COLOR=black]My neurologist believes in control and prevention from the get-go with higher doses. As a result, he prescribed famatodine (Pepcid), Fosamax, and calcium along with the prednisone. I check my blood sugar every day. I have a bone density scan every year and am referred to an ophthalmologist every 6 months. If things ever look they are starting to get out of control, we will wean me off.[/COLOR]
[COLOR=black]After a while, I found that I needed something more than prednisone, so we started plasmapheresis. The “invasiveness” that people are always worried about is twofold. If you have good vascular access, pretty large needles must be used (to avoid hemolysis). Most consider the large needles invasive. If you have poor vascular access, like I do, then a central line catheter is needed. Such a catheter is almost the definition of invasive, but it is manageable. As with everything, some people can tolerate the catheter and some can’t. If you can, and if you keep it well maintained, I find that it is not particularly annoying. If the prednisone does not work well, and if your neurologist is reluctant to continue IVIg, I would encourage you to try plasmapheresis. One of your objections was time off work to do PP. I find that I take less time off for PP than for IVIg.[/COLOR]
[COLOR=black]Still, in the long run, I would ask your neurologist to try IVIg more frequently, on the schedule you originally suggested. I would also experiment with the brand of IVIg. Your rash might be a reaction to the brand you are using. If you got rid of the rash and showed improvement with more frequent IVIg, that would be a good path to follow.[/COLOR]
AnonymousApril 29, 2007 at 8:58 pm
The dr said no to more Ivig for now. He said b/c I get a rash each time and that b/c there hasnt been any reinervation…the nerves arent healing. He thinks that if the disease is still progressing the massive steroids might halt it and allow the nerves to heal, I guess.
I’ll write more later. I didnt realize how tired I am until I sat down here to write. I’ve been in the sun all day and am wiped out ! Back to work tomorrow…have to get up at 430 am….yuk !
But, first…Desperate Housewives is coming on.:rolleyes:
By the way, I did fill the script for the lasix, and prednisone and protonix. I just havent taken them yet.
thanks everyone….I’ll be back tomorrow.
better health to all,
You must be logged in to reply to this topic.