Does anyone have experience with specialized medicine? My new ortho for ankle/foot has prescribed a special cream from a pharmacy that creates custom made medical creams by Dr order. For me it’s Rx Alternatives Pharmacy. My specific topical cream contains Amantadine, Meloxicam, Topiramate, Gabapentin, and Lidocaine. Prior to agreeing to this, I made sure with the dr that it is safe for the soft tissues throughout the body, including the effected ankle and foot. Yesterday evening I applied it for the first time, and had a severe reaction. It began with a racing heart and tingling at the back of the head and the lower half of the face, continued with what I could only describe as being in some form of a “high” (about 20 minutes after the initial start). I was extremely slow at this point and had difficulty focusing. The final stage of reaction began about the same time as the slow stage, and it involved the soft tissues, causing extreme instability. They did an ECG, tested the blood, and did a cat scan (no contrast) of the head. All returned normal. They think that I happened to have had a PoTS episode not long after the application of the cream, but agree that it seems the cream had affected my body beyond the foot. They said that in rare cases more then 1% of the medicated cream will absorb into the blood stream and cause the tingling in other areas of the body as well as a “high”. And they also think that just like some oral medications can cause joint and soft tissue instability in HSD, that because it appears to have absorbed into the blood stream, it might have caused the last, if any of these meds in the cream could cause it. Most of my symptoms are gone. My pulse is back to normal (no longer at 126), and the tingling is also gone. But I feel as if I’m back at stage 1 with my body. I cannot hold myself upright well, my joints keep trying to come out, I’m very shaky feeling. The cane I’m using to aid with walking is helpful for the foot/ankle, but causing damage to the arm, hand and fingers that are holding it. I’m not looking for medical advice, just wondering if anyone has experience with this kind of cream, and if it affected them similarly in any way, or not. And also want to share the experience in case anyone is being offered and cannot find information online, because I could not find a thing about it in connection to EDS/HSD.

Posted by lior at 2022-11-19 20:36:27 UTC