new to this forum, daughter with cidp
AnonymousOctober 5, 2006 at 2:37 pm
I was hoping to see what people were saying about cidp. My daughter (12) has numbness and tingling up both her legs as well as weakness. it progressed midthigh then went down to below her knees for 3 weeks where she was able to walk unassisted. now it is back up to her knees and has remained there since ( uses crutches to walk). we have been thru lumbar puncture, mri, ct, igg infusions ( no affect), her protien wasnt elevated but her emg showed conduction problems. After the initial hospitalization she was placed on neurontin and naprosyn with no relief from pain, then we were put on ultram and neurontin. The meds were just changed again to neurontin and oxycodone because she wasnt sleeping at night due to the pain and her legs felt like they were on fire. any one have any comments for us?
AnonymousOctober 5, 2006 at 3:49 pm
Hi Donettiwanek, welcome to the family. Sorry to hear about your daughter having cidp. Have her drs tried increasing her neurontin dose? Using those other drugs can cause other problems to come up, well at least with me they do. What dose do they have your daughter on? The other meds don’t work well on nerve pain. There is also a med called Lyrica that works on nerve pain, you might ask her dr about that one instead of oxy. I hope she can find a med that will help make her more comfortable. Take care.
AnonymousOctober 5, 2006 at 3:52 pm
Hello and welcome, sorry to hear about your daughter. I take Tramadol and Lyrica and the combination works well for me. Neurontin only worked for me at very high doses which left me loopy. Perhaps talk to the Dr. about a combination of Lyrica and Tramadol, I think it would help her pain possibly and also not leave her as sleepy or having to take oxycodone. Just a suggestion to try.
AnonymousOctober 5, 2006 at 4:03 pm
she is currently taking 300 mg 4 times a day. the oxycontin was making her too sleepy so we were thinking of using the ultram during the day and the oxycodone to help her sleep at night. the Dr also wants to send us for a nerve biopsy. I have an appt for her this monday and I will ask about other meds.
AnonymousOctober 5, 2006 at 4:06 pm
The oxycodone and tramadol do little if anything for the nerve pain, she needs Neurontin or Lyrica for that. Thats why I suggested the Ultram/Lyrica combination. I went for a short period of time without either Neurontin or Lyrica and the nerve pain was horrible. Good luck with everything and take care.
AnonymousOctober 5, 2006 at 5:42 pm
[COLOR=”Purple”]Hi Donettiwaneck. I really don’t have anything to add except I agree with Jerimy. I tried other stronger pain meds that weren’t nerve specific and had no success. I take tramadol and neurontin which works well for me, plus I’m on Cymbalta for depression, which also helps with the pain. Welcome to the site and I hope your daughter gets to feeling better real soon. Vicki[/COLOR]
AnonymousOctober 5, 2006 at 8:08 pm
hi & welcome,
1200 mg of neurontin is barely scratching the surface. she should be given up to 5600 mg/day before any other med is added. lyrica has a small chance of causing gbs & should be given only after a variety of other meds are tried. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousOctober 5, 2006 at 10:00 pm
Sorry to hear that your daughter has joined our “club”, but glad you found this site.
I had terrible, terrible pain when I had GBS and was put on 5 mg of Dilaudid every 2 hours. It lowered the pain level to get me comfortable and allowed me to sleep.
I hope your daughter is able to get some relief soon. Keep coming back here and we’ll give you as much information and support as we can.
Best wishes, Suzanne
AnonymousOctober 8, 2006 at 11:13 am
I saw in another thread that Kassandra sent you the contact number for the liaison nearby. I’m sure she will have a lot of information for you. I also noticed that you said that the IVIg had not helped at all. Plasmapharesis is another option, and often if IVIg doesnt work, pp does, however I believe it is more invasive than IVIg.
Is your doctor familiar with CIDP in that he has treated other patients with this?
Please keep us updated. 🙂
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