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Anyone been diagnosed with CIDP? It's very rare
Autoimmune Diseases | Last Active: Oct 7 6:02pm | Replies (153)Comment receiving replies
I just joined Connect, and saw your post in another string about your post-infusion arm pain. In September I had two infusions of Flebogamma in my left arm and a month later, one in my right. After that one, I had intense pain just as you describe--elbow to wrist. Since I have nerve pain in all my limbs, I figured it was just more of the same, only it lasted longer. It's been eighteen days and the pain is better, but still there. Maybe it was triggered by the IV? Did you find out anything about your post-infusion arm pain? Also, I had severe headaches after each treatment. They lasted about two days.
I was diagnosed with CIDP in September, but my neurologist isn't sure about the diagnosis. My spinal protein levels were only modestly elevated (56), and I have hyperreflexia instead of hyporeflexia. Otherwise, I have nerve pain, muscle twitches, etc. So, I'm going to the Mayo Clinic next month. Hopefully they can figure it out.
Replies to "I just joined Connect, and saw your post in another string about your post-infusion arm pain...."
My Dr wants to do a spinal tap, too, but I'm too afraid of the pain I have so many chronic pain issues: fibromyalgia terrible pain all over my body 24/7, degenerative disc disease, bulging disks, interstitial cystitis, Pelvic floor pain, and now the CIDP on top of it...
I have gamma globulin infusions every 3 weeks. Hydrate heavily starting a few days before and a few days after. That does help some with the headsches. I, too, feel wiped out for a few days afterwards. I am treated in Grand Rapids, MI.
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Headaches are common after the infusions. I’m given 2 Tylenol for the headache and 2 Benadryl for possible rash side effects. I’m told to hydrate hydrate hydrate starting 2 days before and 2 days after the infusion to help with the headache. I’m wiped out for the next few days afterwards, with flu like symptoms. I did 5 days of IVIG and now going every 3 weeks. CIDP exacerbates my fibromyalgia pain immensely. No improvement yet. I’m having problems with my hands and arms lately. Under the skin crawly feeling. Is this part of it?