IV-Methylprednisilone VS Ivig ???
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May 17, 2008 at 3:16 pm
My first neuro gave me 5 days of ivig when she first diagnosed me with GBS in August 2007. As a result, my body responded very well but just about 1 month. After moving back to stay close to my family, I had not had any IVIG but prednisolone (15 mgs) and imuran (150 mgs) everyday because my second neuro said I had cidp instead of GBS. And he thought my condition was not so bad that ivig was needed….VERY WEILD!! Things only got worse for many months slowly. So, I decided to change my neuro in March 2008. This new neuro ordered me to try iv-methylprednisilone 1 gram per day for 5 days immediately. He also changed my med from imuran to Cellcept 1 gram but kept taking prednisolone (20 mgs) daily. Recently, I’ve been getting iv-methylprednisilone 1 gram weekly since the beginning of May, 3 times so far. Fortunately, although it’s a slow process, I’ve noticed an improvement which I had not felt for 8 months. That is really good for me.
However, I feel it’s so slow for getting well again. So, I was wondering about getting ivig instead of iv-methylprednisilone because I really enjoyed the fast and effective result of my first (and only one) ivig. Also, I was thinking about mixing ivig and iv-methylprednisilone but wasn’t sure about the effect of that.
If anybody has gone thru this or has any ideas, pls advise!!! Or I should be patient ????
Thank you,
Ayut
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May 17, 2008 at 5:37 pm
Hi Ayut: I am not real knowledgeable on this stuff, but I think it is possible… It sounds like things are going good for you, so I’m not sure, they would recommend for you…I’m thinking the main thing is you are getting better, and if you are not having problems, then I don’t know if you would want to combine or switch?…. That is pretty much what I’m considering this week…. I kinda feel lost or overwhelmed sometimes with the choices we have to make to get better, and I wish things were not such a crap shoot… I called the hospital and talked to a neuro today as things are relapsing for me, (I was hoping I could’ve made it a little longer on the 5 days of ivig).. I asked him the same question regarding ivig and methylpred since I need to get this stuff under control… Unfortunately, I didn’t get an answer, but sounds like monday I’m going in for another 5 day round of ivig… Then I’m gonna look real hard at the methylpred treatment option (If you look at my question from yesterday regarding this…). I will let you know if I see another neuro in the clinic… Keep on getting better….deano
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May 19, 2008 at 9:26 pm
Thanks Deano for your response. I’ll meet my neuto today. So, I’ll ask him about this opportunity as well as possible results. Then, I’ll let you know too…Keep fighting!!!
Ayut
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May 22, 2008 at 8:30 am
Deano,
I already asked my neuro about the possible result of mixing between iv-methylprednisilone and IVIG. He answered me that he wasn’t sure about that. The point is, he added, that since I’m getting better, I should be patient and see what will happen for the current medical method. So, I’ll wait for awhile and see what’s going to happen. Anyway, if you have any info, please let me as well as everybody here know about it.Thank you and keep getting better,
Ayut
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May 22, 2008 at 9:21 am
Hey all,
My codition now is not so good. I have my feet drop and cannot balance my body when I try to stand still. I also cannot stretch some of my fingers, especially on my right hand. My muscles are so weak, esp in my hands and my lower legs below my knees. I can walk but cannot run. I can write and type but not as comfortably as I used to. The rest seems to be OK. Although I feel better about my condition since I changed my neuro, I am still worried about my slow recovery as I explained in the previous posts. So, my question is ” if the current treatment suits me, how many (months/ years) will I spend to become, I would say, almost normal as I could like the pre-cidp ?” I know it depends on individuals….I just want to know the average time that most people spent and fought with this from the conditions close to mine.
Really need to know so that I can plan my future 🙂
Won’t give up!!!
Ayut
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May 22, 2008 at 9:11 pm
Hi
One of the things that caught me when I read your post was, “Really need to know so that I can plan my future”.
I have had CIDP for about 12 years now. I have had my ups and downs, but I have been currently “stable” for about a year now. I still have IVIg monthly, and still take pain meds, but the deterioration has slowed.
BUT, I have been in the place where you are…thinking that “if the treatment works, I will be back to normal in x – x months.”
When nothing really brought me back to normal, I got quite depressed. I started going to a therapist who specialises in chronically ill and terminally ill people. She really helped me.
The nature of these illnesses are that we just don’t know what is coming. We aren’t going to die from this, but at the same time, we aren’t able to plan as definitively as we might like. I love control and structure in my life, and CIDP is the antithesis of that.
The important thing is that you have to enjoy the life you currently have. Nothing stops you making plans for the future, you just might have to modify them! And what’s new about that?
One of the things that really resonated with me was that the WORST thing we could do is worry about the future in terms of what lies ahead in the disease, i.e. “how disabled will I be”, “WHEN will I be better?”,:mad: because then you lose today. If you decide to put something off now “until you are normal”, you might lose it altogether.
What I have found is that I have to look at things in a different way. e.g. If you can’t spend long in the grocery store standing, get your 11 year old to do all the running around, searching for bargains while you sit down! Or, have a set of things in your day that you feel are non-negotiable, i.e getting out of bed before 8:30 am, getting some exercise, cooking dinner, that give some routine and structure to your day, and then, even if you don’t accomplish anything but that – at least you did the non-negotiables!
Don’t give up – absolutely! Change your expectations – yes – but it is hard! Enjoy each day (if you can) — YES
I know I sound like a cheerleader – all I can say, is that it worked for me. Abit like cognitive behaviour therapy – yup, kinda – but at the same time, here I am 12 years later, still fighting, still adapting (i.e. not able to work anymore for pay, but trying to give back in the community to keep my brain active), and trying not to worry!! Doesn’t always work, btw :rolleyes:
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May 22, 2008 at 9:31 pm
I know what you are going thru about going. I’m finding the road to recovery has been full of ups and downs.. This week I’m doing a round of ivig to halt for me a more rapid relapse of symptoms… I think if you are getting worse, than I think you need to get on the phone with your hospital/clinic and make your concerns heard.. Cause its your body, and the doctors are responsible for helping you… I’m gonna go to a different treatment and see if that works, and will keep you posted on how it works for me… I hope things get better…deanop
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