thanks people very much… i found lots of good info here as i’m currently put on Gamagard (i also take Omnitrope but hopefully this isn’t going to be a big problem) and I know what i should expect from it. btw, OP, how do you feel?
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Previously I was getting 30 of GamaPlex every 3 weeks. I got a rash after treatment #4. Treatments were stoped long enough too treat my skin rash, A course of solu-mederol 250 mg over the next 5 days. Rash started too clear up, I contracted an extend bout of Diarea. This stopped my IVIG treatments and all progress for 45 days. My symptoms returned along with extreme fatigue, and the mussle spasms and leg cramps in my legs returned at nightime.
My symptoms start to return, slowly. Seems about 50 % of my strength was drained right out of me. This was due to the extended Diarea. A complete work-up revealed no infection, and was determined I was okay to restart IVIG. So, over the next 45 days. I had to restart my digestion system, a BRAT diet and Pro-Biotics got me straightened out in no time.
I am presently getting 30 grams of Octagam & they add 40mg prednisone, as a pre treatment, alond with Tylenol & one Benyldryl tablet. I have been getting my Infusions @ home, every 4 weeks. I am 2 months in and doing well again. Almost where I was after the orignal 4 treatments. I am going to receive 4 more infusions and re evaluate.
Long story, short version. I did not completley loose my benifts and gains, from 4 IVIG treatments after stopping for 90 days.
I did loose 10 lbs, and keep 50% of my strength and hard earned gains. This seemed to be stable over the next 45-60 days, while I was recovering from skin rash & stomach problems. My pain level has decreased to controleable level. My strenght is still improving, I hope the results are perminate. Time will tell.
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I’m in the same position as you. I was just diagnosed after 2 years of misdiagnose after misdiagnose. The point is I have no idea what remiission is and I cannot walk without a walker at all. I am currently being sized for a wheelchair. I get my infusions once a month for 5 straight days. They have increased the dose already and it hasn’t worked. If your having trouble walking, then maybe you can get a walker to help you get around. The problem I have is my arms are getting so weak, that the walker is becoming useless. I would like to know what remission feels like, because nothing has stopped hurting in almost 3 years.
Pam
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When I first started, I went 4 days and got 4 bottles each day. I didn’t go back for a while, my legs felt weak so my doctor had me get 1 day for 3 months and then none. I fell and called the doctor and gave me the same again. So its just wait and see. I don’t feel so bad, my grand daughter is 12 and has crohns disease since she was young and she is on the last treatments. She gives herself a chemo shot and does remagade ivs every 6 weeks. She went on tv to get help with trying to find cures and raising money and she spoke in Washington DC trying to get funds for cures. Her mom spoke also. She has had those painting parties and talks to parents there. So I can’t complain. I only get to see them maybe once a year because they live in Virginia. God Bless y ou and keep your faith.
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I have a walker, but in the house I hold on to everything and when I go out I use a cane. My arms are not right either. I just had cataracts removed and when I am able I am going to see if more therapy can help my muscles, I don’t know. I put weight on with this and its frustrating. Keep strong.
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What is Omnitrope? I won’t use my prescription, I just take bp meds which they changed when this happened. My bp was like 240 over 160. They said I should have went to the hospital.
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I have experienced this and It was against my will. I had been misdiagnosed for nearly 3 yrs and then once I was correctly diagnosed given IVIG to confirm, of course it was a small miracle, pain, ataxia and strength returned but it also gave me fits to get the IVIG, I would blow veins, throw kidney stones and have horrendous headaches for two days during and one week after each infusion it was awful, went through inpatient IVIG every 6-8 weeks for around a year and out of the blue, a new dr I had never met, cut my IVIG dosage in half and when nurses questioned it, she got mad at me for questioning her… I had no idea what was going on, after that and before I was discharged I was told I should now be in remission and they would not be doing more IVIG going forward. I was left with no medical intervention for a documented diagnosis of CIDP. Less than 7 months later I was in a wheelchair full time unable to open a bottle of water or reach over my head to get dressed or brush my hair. (There is more info to this story but in an effort not to write a novel, I am moving forward a little in time ) All of my care is at military treatment facilities and it took about 6 more months and several more Drs before we found ourself with a new neurologist who had a idea, try something new, so I have been getting Rituxan every 4-6 months and it’s been a god send for me. With that treatment and intermittent prednisone use it is offered me much greater improvement in the ataxia, Lessening of pain and improved strength in all areas. I am almost ready for my next chemo treatment and I can tell because my fingers and toes start tingling and my fatigue gets worse, so I’m not sure how you ended up with your situation , but in the long run, I hope things worked out as well as they have for me, even during a most scary and trying time.
My best wishes for continued health,
T.
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Hi Pam sorry to hear your not doing well, I’m also relying on a wheelchair but my pain has settled down a lot which has made living each day more bearable. My neurologist had me on ivig each month for 18months I’ve stopped that now and have started on Rituxamab infusions twice a year at the cancer centre it’s not helped my mobility but has reduced pain and my fatigue is getting better. Hope you feel better soon
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I did IVIG for 18 months. I was already getting worse and had been for some months before this point, Also iv’e CIDP for 23 years now. Later I was in the ER because of a severe attack, they tried several things. But finally said they couldn’t help me. I was kept over night for a upper GI, and the next morning the anesthesiologist saw my leg twitch she request ketamine to twilight me for the test. I woke up and was shocked because the worse attack I had ever had was stopped. I could feel my feet more than in ages. 90 mins later I was walking better than in months. I get it orally now and it helps a lot. Not like that little dose of it IV though, Wish I could get a infusion bet that would really help me. My nerve damage is really on the severe side, Ketamine is not a fix but it works wonders for me stopping the severe shooting nerve pain. I’m starting to do things again, a little at a time. For the first time in 5 years I am actually trying to make plans for the future, since I may have one.
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