Another Newbie Here
AnonymousAugust 9, 2006 at 11:28 am
I was recently diagnosed with CIDP. My doctor has given me a couple of months to figure out what type of treatment would be best for me. Although it is expensive, he recommends IVIG. I have an eating disorder, so he does not want me using steroids. I read another newbie’s post, and they spoke about getting steroids before IVIG. Is that common?
I would also like some general words of wisdom about CIDP. Right now, I have a lot of tingling in my hands, and I no longer have any reflexes in my lower extremities (my legs are also very weak). However, I am able to walk, and I have started to use the treadmill again approximately 3 times a week. I was very scared to find out how many people seem to have minimal use of their limbs. My doctor called my case moderate, and felt I had ample time to reach a decision regarding treatment.
I am very scared right now, and I need to know what I’m facing. Any words of wisdom would be helpful. I feel all doom and gloom (even without the steroids); I also feel that I may be to blame for my disorder because I brought it on with my eating disorder (although my previous doctor thought that it may be the result of the kidney cancer I had six-seven years ago – it was contained in the kidney, so I didn’t need any chemo/radiation).
I am sorry for such a rambling first post.
AnonymousAugust 9, 2006 at 12:55 pm
Welcome to the site, Chaya!
glad you found us. You will find lots of support and info here. Sorry to hear you have CIDP also. IVIG is not a scarry thing. Steroids before infusions is not that common. Sometimes people are given them to prevent reactions, but reactions are rare. Some will complain of a headache, fatigue, or flu-like symptoms, like me, after infusions, but they aren’t severe and don’t last long. Others have no post infusion symptoms at all. Benadryl and Tylenol before each infusion usually will do the trick. Everyone is different. There should be no reason for you to have to have steroids before your infusion, so try not to worry about that. Just concentrate on getting better. Lots of rest……I almost forgot, drinking lots of water before, during, and after infusions will help also. I’m sure others will come on and share their experiences with you. Don’t hesitate to ask questions. Take care Vicki
AnonymousAugust 9, 2006 at 1:22 pm
Hi Chaya, welcome to the forum. It is a great place to get support and good information. But just remember, most of us are patients and not medical professionals. Information you will find here is always to the best of our knowledge.
First of all, do you live in the US and do you have insurance? Your name sounds Indian to me. It reminds me of a song by the same name used in an Indian movie which also has been used in a great new American movie called “Inside Man”
You are concerned about cost of IVIG which makes me wonder if you would have to pay out of your own pocket? IVIG has helped many of us, some more, some less. It usually has to be repeated over and over. The amount you get depends on body weight. I weigh about 215 pounds or 98 kilograms. I am getting 60 grams of immunoglobulin over 3 days. The hospital in Denver charges about $36,000 including facility and nursing care. I am on Medicare, the US government insurance mostly for retired people. They reduce what they pay to approx. $20,000 of which they pay 80%
I just finished a round of IVIG last week. This time we are going to wait 5 weeks until I get the next round. But I am also starting on a very low dose of Prednisone (steroids) again today. I may or may not be able to tolerate it. Earlier this year I started on a high dose, 60 mg, and it was a disaster. I lost control over my legs and had to quit.
Oh, I forgot to tell you about my CIDP. I have a variant that progresses very slowly. It started in 2001 with minor numbness in my feet. Today there is no feeling in my feet at all and some numbness in my fingers and palms. I no longer can drive a car. There is no tingling or pain. I had also significant tremor in my hands and could not hold a fork and spoon very easily. Since I have been getting IVIG again for the last three months, the tremor is almost gone and I can walk without support around the house. Outdoors I usually still use a walker. I feel stronger now and have not fallen for several months.
Just ask any kind of questions. Someone will try to answer.
AnonymousAugust 9, 2006 at 7:06 pm
Thank you for replying to my first message on any discussion board. I really need the support right now. I am glad to find out that I won’t have to take steroids, and that the side effects may not be that bad. I am talking to my doctors (neurologist, primary, and hemotologist) about what course of action to take.I will be covered by insurance, so I may not have to pay that much for the IVIG. If it is considered an IV infusion, then I think I will have to pay roughly $15 a session. I had the insurance company check this out, and that is what they came up with. Hopefully, the person who checked it out gave me the correct information (I was very specific about what treatment I would need). I am checking with a second insurance company. As for my name, it is not Indian. Chaya is Hebrew for life, which is why I chose it.I am looking forward to more responses.
AnonymousAugust 9, 2006 at 11:08 pm
Welcome to your new family. We understand because we feel what you feel. Many of us do not even know what caused CIDP, it is just something that happened. I was diagnosed in 1998 and I still don’t have reflex’s, but I’m so used to that now I wonder why I need them. Exercise is good because our muscles are okay and need to be used, but it’s very very important that you don’t overdo and that you listen to your fatigue level. Some of us need to take naps, so if you need to do that, it’s normal for us. With CIDP, it’s the nerves that are damaged and they can’t tell the muscles what to do. I am recovering now, I did very well with IVIG’s and never had any side effects. Whether or not to take steriods will have to be your decision and you’ll have to reach it by going by your doctor’s advice.
AnonymousAugust 10, 2006 at 1:28 am
Welcome Chaya. I’m glad that you found us.
My daughter Emily has CIDP, she’s almost 5 years old.
There is NO need to be afraid of IVIG. It has helped my daughter tremendously. In December we noticed that her right eye wasn’t moving. 2 days later she couldn’t run, jump, open & close her fingers, lift her arms up, stand up from a sitting position, she had trouble swallowing & she was falling alot due to foot drop. After 2 days in the hospital & many tests she was diagnosed with GBS. She was given 2 consecutive doses of IVIG over 2 days. The results were miraculous. When we came home from the hospital she jumped on her bed & declared that she “got her jump back!”. Those were the BEST words I have ever heard!
She’s had relapses & has since been diagnosed with CIDP. She’s on an extremely aggressive IVIG therapy & has received probably around 30 IVIG infusions of 20 grams each. I’ve actually lost count of how many infusions she’s had.
There are possible side effects to IVIG as with any medication. While you get your infusion you will have a nurse take your vitals (blood pressure, pulse & temp) on a regular basis. If anything is abnormal then your nurse will either stop the infusion all together or slow it down & continue to monitor you closely. If you are going to have a reaction to the IVIG then you will most likely have it in the first hour of your infusion, so that’s when they will keep a closer eye on you.
As far as premedicating goes, we’ve always used Benadryl & Tylenol (or Motrin) with Emi and it’s worked well for her. I make sure that she drinks LOTS of water before, during & after her infusion. If she doesn’t get hydrated enough then she gets a terrible stomach ache, chills & a flu like achy feeling. It’s not pleasant for her at all.
If IVIG does not work for you then there are other treatments available. I’m certain that you will find the right medicine to help hault your CIDP & to aid in your recovery. It is important that you start your treatments sooner than later because the longer you wait the more likely it is that you could end up with nerve damage or even muscle damage.
Check out (link deleted by Administrator)
That website has TONS of info on IVIG & CIDP.
August 10, 2006 at 11:01 am
Welcome to the family! here you will find not only support but other’s input as to what has or hasn’t worked for them. With CIDP, we all have different symptoms and we all respond differently to treatment.
Steriods was suggested to me initially. My neuro thought they would help speed my process along at the beginning. however, I knew the side-effects of steriods and told him that I would rather use them as a last resort. I began monthly infusions in November of 2002 and have gained back 75% of my loss. it took a few months before I saw the difference but looking back, I have definetly made progress.
I felt scared in the beginning mainly because so many doctors had not heard of CIDP so I knew that it was not common. Luckily, I found this website and have not felt alone since. I hope you find the answers you are looking for and the support you need in here. Welcome!!!
AnonymousAugust 12, 2006 at 12:09 am
I don’t know how much your Neuro told you about CIDP and how it affects you.
Briefly, your immune system has a malfunction and has decided that myelin is a foreign invader. Myelin is the substance that covers your nerve axons and helps speed transmission of nerve signals from point to point. As these nerves are affected, their performance decreases, resulting in “tinglies” “burning” “shooting pains” etc. It will also cause numbness and confused signals. The nerves that feed muscles can also be affected. As muscle fibers stop working, you will fatigue quicker and get weaker.
The IVIG puts a bunch of “Good” antibodies in your system to hopefully stop the “bad” antibodies. Many times this works. I hope it does in your case. If not, their are many other treatment options available.
CIDP tends to affect your hands and feet first because those nerve signals have the longest distance to travel, and are the most susceptible to damage simply due to more exposure.
The more I found out about how CIDP functions, the easier it was for me to deal with it. Also, finding his site enabled me to meet others who had to deal with the same issues. It is much more calming to be able to talk to others who go through the same thing. We share our miseries together, as well as our successes.
If I can help more, let me know.
AnonymousAugust 12, 2006 at 2:04 pm
Welcome. Sorry for your illness, but you have a lot of friends here. I have had CIDP since 1994. Fairly benign until September 04, when it kicked in agian. I am now going downhill slowly but steadily.
Other than the physical impacts this illness will have on your life, the mental aspects can be tough. I have been up and down, all over the map with what I think is important.
Up until last May, my whole effort and thoughts were slanted towards me going back to work. Every time I had a good day, I immediately made plans to return. I actually did go back twice in the last year and a half. Both times were failures. I lasted 8 weeks the last time. When I got so run down that I could not hold my head up and the tingling and numbness got significantly worse, I went to see both my GP and Neuro. My GP said when I let my ego go and admited to myself that work could live without me then I would be on my way to living the rest of my life for me and not work.
I went to see my boss in June of this year and told him work was not the highest priority, but that I now was. I cleaned out my office that day and have not gone back. I will be terminated on Sept. 5th.
You are the most important person in your life. You need to do what is best for you, no one else. It may take a while for you to realize this, and it is hard, but that is what you need to remember.
I finised reading a book yesterday called, “You Don’t Look Sick” by Joy Selak and Dr. Steven S. Overman. I wish that I had found this book 2 years ago. It described exactly the stages of this struggle since it started in September of 04. I cannot recomend it highly enough. It gives real insight into the struggle with chronic illnesses and the mental stages you go through during the course fo the illness.
I found this at our local Neurological Resource Center, but if you click on this link:
(link deleted by Administrator)
you will find it at Amazon.com.
I really would recommend that you read it. It was an eyeopener for me.
Good luck and take care of yourself,
AnonymousAugust 13, 2006 at 10:06 am
I want to thank everyone for replying. It makes me feel that I’m not alone, and that there is an empathetic community out there I can talk to.Right now, I don’t see my doctor until September 28. I feel that is too far away. He seems to think my CIDP is either mild or moderate, but I don’t know if it was get worse, and he couldn’t give me any answers. Right now, I am able to work. I haven’t been working because I went back to school, but, having completed my studies (at least for a little while), I am trying to return to the working world. Therefore, I would like to start treatment as soon as possible, so that I don’t have to take time off as soon as I get a new job.Thank you Hutchman for the book recommendation. I’ll put the book on my reading list.
AnonymousAugust 14, 2006 at 4:44 am
I was diagnosed with cidp in January 2006. I have been treated with a steroid protocol of high dose methyprednisolon 500mg once a week for 3 months and then down to 400mg once a week for 3 months and now I am on 300mg for 3 months and so on. I have never had IVIG. My improvement has been substantial, actually quite amazing. I couldn’t get out of chairs or stoop and stand up, bathe myself, brush my teeth, get dressed and couldn’t climb stairs. I couldn’t snap my fingers and my writing was atrocious. I can do all these things now but I tire easily and my back is in pain a lot. I believe it has to do with my walking and standing alignment and my excess weight. I need to lose 100 pounds and the steroids are not helping. However, I am doing great. But the meds do affect me. I haven’t worked since Jan 2006 and was officially laid off in April. I had a humbling experience trying to get a full-time job recently. Though they were fine with my walking disability, I did not interview well for a job I should have nailed. It was perfect for me and they were hiring 14 people. The meds did not have me thinking straight. When I get denied for Disability I think I should call this company and ask them to send the results of my interview to the Disability Office. That might convince them that I can’t work. Well, that has been my experience. I have a wonderful Doctor who knows what he is doing and I am not too badly off….just the side effects of the treatment. Anyway, to make this long story a little longer, I am overall pleased with my progress, but not pleased with the side effects of the steroids and it is the treatment that is keeping me from working. I am not sure of the prognosis and am aware that this is a chronic disease that relapses. So, hope that gives you some insight to the steroid treamtment.
Best of Luck and Blessings to you,
AnonymousAugust 14, 2006 at 9:17 pm
Jan,I am glad that the steroids are working for you. I am sorry you didn’t get the job.I have the opposite problem that you have as far as weight is concerned. I have an eating disorder and, although I don’t feel excessively thin, I have been told by doctors that I’m probably anorexic. My doctor does not recommend steroids 1) because he feels that I won’t be able to emotionally handle the weight gain and 2) because my eating disorder has affected my bones, and steroids also affect bone density. The only other course of action besides IVIG is to take an oral chemotherapy drug; however, I have not been able to find out anything on the web about this form of treatment.
AnonymousAugust 16, 2006 at 10:18 am
[QUOTE=chaya] The only other course of action besides IVIG is to take an oral chemotherapy drug; however, I have not been able to find out anything on the web about this form of treatment.[/QUOTE]
Chemotherapy for CIDP refers to immunosuppressants. Sometimes these are combined with Prednisone (the most commonly given corticosteroid) in “steroid sparing”, meaning that they give you less Prednisone because part of the treatment is being taken care of by a drug with different side effects. A common “first try” immunosuppressant would be Imuran (also known by its generic name, Azathioprine), a chemotherapy drug that has been around for a very long time. Others include Cyclosporine, Mycophenolate (CellCept) and Cyclophosphamide (Cytoxan).
August 18, 2006 at 8:16 am
There’s nothing wrong with a good long nap,lol. After two years of not knowing what was wrong I was refered to a great neuro, the IVIg haven’t been working for me any more so I’m doing monthly doses of IV solu-medrol and daily doses of Cellcept. While I’m not dancing on tables, I’ve learned to consentrate on what I can do. It’s been four years and while I still get the occasional pity party days I try to keep an eye on the possitive.
Having a good doctor helps but also knowing these forums are here. Even if you are like me and don’t put your two cents in very often, you can read through for info and just a feeling of support. With time and understanding the feelings of fear and dispair give way. It does get better! Good luck.
You must be logged in to reply to this topic.