January 27, 2009 at 1:33 pm
We all go through the anger and why me phase. Mine was when I had GBS in ’85. Former college football player, semi pro football and baseball, 10K runner, golf, etc. Then 3 days after a round of golf, totally paralized. Angry, you bet. It took me a long time to adjust to my “new life”, but I did it by being thankful for the things I could do rather than those that I could not.
Was doing great until ’96 when CIDP came to vist and decided to stick around. My first reaction was again why me, but time on this site helped me realize you can get through it. I have a very supportive wife and kids as well as friends who have learned about this disease and its quirks and understand there are days when I can’t do things. There is always someone there to help when I need it. I just had to learn how to ask.
I am now twice as thankful for the many things I can still do and focus on the positives. I have been fortunate to have a doctor who knows this disease well and over the years we have tried many, many treatments and combinations, including some off lable MS medications to try to stay ahead of the progression. Considering they told me about 6 years ago that I would probably be confined to a chair within a few months and I am still walking, I have much to be thankful for and have lost my anger and why me attitude.
Every day I wake up and get out of bed, I realize what a great day it is.
With the new Gamunex, PE and IV solumedrol treatment combination I am now on, I have regained some strength and endurance and again able to work on my antique car restoration hobby a few hours a day several days a week. Can’t stand long or bend over very well, but stools and pads on the floor let me work in a kneeling or sitting position. The lack of grip strength can be offset with more leverage, etc. I find ways to adapt and keep on going. Lots of ups and downs over the years.
I’ve always been a “half full” person with the classic type A personality with a volital temper, but that has been replaced with I do what I can, when I can and don’t worry about the other stuff. Never, never give up, because one day they may hit on the treatment or combination of treatments that will help you. I feel that if I hang around long enough, they will find a cure for this thing. Don’t forget, there are meds that can do wonders for mood swings. Hang in there and stay positive.
FredJanuary 25, 2009 at 1:51 pm
My initial reaction to IVIG was much like yours. After 4-5 months, we switched to a combination of PE, IV solumedrol and Cellcept. I had almost instant response the the initial five days of PE. Since that time I have been on and off PE to try other treatment protocals and have ultimately returned to some schedule of PE. I have gone as long as six months between exchanges and as short as weekly. PE has kept me active and functional for over 12 years now.
Like everyone else, response is different for each of us. The key is to have a physician willing to work with you and try different treatments and or combinations, until you hit on the one that works best for you. You know your body better than anyone.
I find it helpful to keep a diary and base line to measure the results of each treatment. For example, can I get up from a chair without a push, can I stand without support, can I pick up a dime off the counter top, or open the squirt top on the mustard container, etc. Then after a few weeks, I repeat these tasks to see if I can do them better, about the same, or not as good. This gives me an objective way to measure the effectiveness of the treatment.
Hang in there and keep after it. Best of luck.
FredJanuary 17, 2009 at 4:53 pm
I, like you and many others struggle with the sleep thing. After the sleep study, we tried the CPAP, provigil along with a few other drugs with mixed or no results. Finally went old school and started taking Halcion .025 mg and sleep like a baby nearly every night. On the day I get prednisone before Gamunex, I take 1 1/2 pills about an hour before bed and am gone for at least 7-8 hours. The loss of energy from lack of sleep just kills, so I am resigned to use what is working for me. Hope your study helps them find a solution for you. If they can get you to a regular sleep pattern it may help your energy level.Good luck.
FredJanuary 10, 2009 at 4:12 pm
As you have probably read on other postings, everyone does not always have the same results using the same treatments.
My success for years has been PE, IV solumedrol after the PE and 2000 mg of Cellcept daily. I have been on Cellcept for about 4 years now and have had absolutly no side effects of any kind. I get blood work every 4 months to check liver and kidney functions so we can stop it if anything shows up in the lab work. Everything is still normal.
I started Gamunex two weeks ago, once every three weeks, but also continue the PE with IV Solumedrol after each PE. I also am still on Cellcept, 2000 mg daily. Half in morning and other half at night.
I had GBS in ’85 and was totally paralized, so when they diagnosed CIDP in ’96 I made the decision that if a treatment protocal was not helping me, I would go to another treatment until I hit on the combination that worked for me. I also researched each drug or procedure and evaluated the risk vs reward and so far have only backed away from the MS drug Tysabri, which I tried for 4 momths. It was not helping my CIDP and the newly reported cases of brain cancer made that decision easy.
The key is to find the treatment protocal that your body responds to. This may require several different approaches, but be patient and communicate with your doctor. You know your body better than anyone else so don’t hesitate to let him know if what you are doing is not working. Stay positive and keep that fighting spirit alive. Refuse to lose!!
My thanks also for serving our country. Good luck.
FredJanuary 10, 2009 at 3:40 pm
I’m not on weekly IVIG (every three weeks), but prior to starting Gamunex last month I was getting PE weekly for almost a year. Much larger needles used for PE. One of the PE nurses told me about 5 years ago that I could minimize scar tissue at the stick site if I did two things: first, put ice packs at the needle site when you get home or right after the infusion and do it several times before you go to bed that night. Second, after 24 hours, rub the site with vitamine E cream every night before bed. I have very minimal scar tissue on either arm. Also make sure you are very well hydrated at least 1-2 days before the infusion. This makes the veins “pop up” and easier for the nurses to find and stick.
After about 150 or so PE’s I thought, why can’t I get something to numb the iv site so I don’t feel the stick? (yes, I know I’m slow on this one) I got my doctor to prescribe Lidocaine-Prilocaine cream. I put a gob where the iv is going to be and cover it with a large band-aid about an hour before the procedue and feel nothing.
Just something to think about. Good luck.
FredJanuary 10, 2009 at 3:18 pm
I also just started Gamunex two weeks ago. Had taken other IVIG prducts when first diagnosed, but they did not help. I had Gamugard this summer and it did not help either. Once Gamunex was FDA approved, I was able to get it approved by my insurance company.
When I went in for the infusion, the day after I had discussed Gamunex with the hospital pharmacy, they sent up a”mixed” IVIG which I refused to take. Gamunex is supplied in single use pre-packaged bottles, so be sure to check them prior to the infusion. The pharmacy tried to tell me all IVIG products are the same. After much discussion, the hospital had the Gamunex over nighted from a supplier in Tenn.
My loading dose was 200 grams over 14-15 hours with no side effects, however I did get a pretty bad rash on the sixth day after infusion which lasted about a week. My follow-up doses are at three week intervals at 100 grams. Round 2 is set for Thursday. This is the first time in over six months that I have seen inprovement in my balance.
So glad to hear it is working for you. Good luck,
FredJanuary 4, 2009 at 6:19 pm
Rod, Homeagain and Kelly,
Thanks for the additional feedback. I just looked at a copy of my physician orders and it is a 200 gram loading dose. They gave me 10 bottles of the stuff! The follow-up doses will be cut in half, so I’ll get 100 grams on the 14th. I’ll do the PE and IV Solumedrol on the 12th. I thought it was a heavy dose for one day also. They started it at 80 ml/hr then bumped it up after each bottle until they got to 120 ml/hr. Nothing unusual ocurred during the infusion and I never had any reaction other than fatigue for several days, then the rash on day 5. I think the heavy dosage was to “shock” my imune system to see if there is any positive response as other treatments have been losing effectiveness the past 4-5 months.
When first diagnosed in ’96, I was on IVIG for about 3 months with no results and was swithced to PE for seveal months. I responded to that pretty well so it was stopped and I went on oral prednisone for about 2 years. Since then its been about everything else. Imuran, Cytoxin, pulse IV solumedrol, Rituxan, Cellcept, Avonex, and Tysabri. When Gamunex was approved and I found it was mfg slightly different than other IVIG products (glycine instead of sucrose) my doc and I felt it was worth a shot. In between these meds I have been on and off PE and IV Solumedrol since ’97.
Appreciate the good info from everyone. Thanks,
FredJanuary 3, 2009 at 3:03 pm
Thanks to all for your responses. I thought I had done my homework pretty well as I had an opportunity to speak with the patient advocate for the mfg. at the symposium and discussed with my doctor about 30 minutes several weeks prior to the loading dose. He even pulled up the mfg web page and reviewed it with me. He insisted that I do the infusions in the cardiac diagnostic unit at the local hospital because of prior heart issues, but I could not get him to yeid on the single day infusion. I did take the mfg info with me and made sure the nurses knew what to look for and that they had epinephrine at the ready, just in case. The fatigue is gone and my energy level has increased some, but don’t see any other signs of improvement yet. The maintance doses are going to be 100 grams, again given all at once, the day after PE and IV Solumedrol.
I had benadryl and 125 mg of solumedrol as premedications, and seemed perfectly fine during the infusion, but the magnitude of the rash caught me a little bit off guard. I took benadryl for three days with little effect, so I decided yesterday to “self medicate” a little and took 20 mg of oral prednisone last night and again this morning and am seeing improvement already. I’ll it to 10 mg tomorrow and Sunday and then stop. Hopefully it will be gone in two weeks when I do it all over.
Again thanks to all for your input. This is a great site for information and support. Optimism and positive outlook is always easier with support.
FredOctober 10, 2008 at 2:11 pm
Can’t believe some of these prices. Guess I should be thankful IVIG did not help me and the switch to PP was made. My PP with 1/2 gram of IV Sloumedrol is “only” $1981 per procedure. Of course the hospital bills a little over $3000, but the CIGNA contract pays the lower amout. Just thought I’d share the price comparison, but as we all know what works for one may not help another. Best to all
FredSeptember 30, 2008 at 7:17 pm
Thanks for the responses. The Gammagard gave me a pretty bad rash, but no other side effects. The solumedrol has little side effects for me other than increased appetite. I do miss a nights sleep on the day of the infussion as my heart rate goes up to 90-100, but that usually passes with in 24-48 hours. I do get a significant energy boost from the solumedrol that lasts any where from 2-5 days which is great. Perhaps my doctor will try the Gamunex to see if I respond to it even though I have not responded to other IVIG treatments.
My best to all.
FredSeptember 26, 2008 at 8:41 pm
Fantastic news. Proves that there is always hope. Know you are experiencing the great joys of keeping up with Dell.
FredSeptember 17, 2008 at 12:26 pm
The neuro I hope to see is Farouk Khan in the department of Neurology at the Freeport Clinic in Freeport IL. I hope to have the medical records he requested together this week and get them to him. We have discussed my history via e-mail and he now wants to review specific tests like the sural nerve biopsy, MRI’s, spinal taps, pt reports and neuro exams, etc. He also wanted to know if I had ever been on CO Enzyme Q10 or Amantadine, which I have not, so I am interested in how that might play into things. Will keep you posted. Thanks,
PS I live just outside Atlanta GA.September 15, 2008 at 3:50 pm
Congrats on the SSDI Julie. They don’t make it easy do they? I read an article a few weeks ago about the SS office here in Atlanta and it said they had a backlog of 22,000 disability applications. The estimated wait for a hearing is 2 1/2 to 3 years. Its a mess. Again congrats.
FredSeptember 15, 2008 at 3:39 pm
Hello again to all,
Sorry to be so late responding to you guys, but have finally been able to get away to the mountains with my wife for a few days of R&R.
No longer have to worry about the IVIG doasage and the timing with the PE as my neuro has “given up” and returned me to weekly PE with 500 mg IV Solumedrol each time. Had my first PE Thursday and have seen some improvement over the past several days. It had been over six months since the PE was stopped in favor of the Tysabri, then when I continued to decline, he then introduced the IVIG and PE with Solumedrol. I have the distinct impression that PE is going to be the only treatment going forward.
I am getting my medical records together as a specialist in neurological disorders in IL has agreed to review my case to see if anything has been overlooked.
My best to everyone. Hope you are all doing well.
FredSeptember 4, 2008 at 11:12 am
Thanks for the responses. Looks like I need to follow-up with my neuro and talk about the dosage. From what you all are saying, the dose I am taking every four weeks isn’t worth the time or expense. I’ll let you know how I make out. Thanks . Hope this finds you all dong well.