My EM has resulted in extremely swollen feet and ankles. I am unable to stand or walk. I’ve been confined to a hospital bed for 2 years. Flaring causes my feet to get very hot and painful. I have been using Gabapentin orally and 17% Ketamine Cream compounded at night. I am also taking Lorazepam for anxiety. Recently I have been using 30% Mannitol Cream Compounded 4 X during the day. It seems to delay the onset of major flares but the past 2 evenings I have noticed what may be a rebound effect because when the flares start they are super intense and more painful than ever. It is then that I start cooling my feet down with cold wet wraps. Does anyone have any experience with Mannitol that they can share. Would greatly appreciate hearing from you.
Thanks,
Connie
I don’t have experience with mannitol. However, given your intense swelling, I would be deferential to systemic treatment over topical creams. Swelling being a function of the immune system, it seems unlikely to be well controlled by a topical agent. If it were me, I’d push my doctors to try more systemic options.
Mannitol is a type of sugar. I doubt if it has any effect.
I think you would most benefit from a therapy that would target the edema that you have. Swelling alone can cause erythema and pain. Mannitol cream is actually quite an interesting idea. Mannitol as a cream has been shown to desensitize TRPV1 channels which are associated with pain. Surprisingly, it has a similar effect as capsaicin cream without the burning. Mannitol inactivates the TRPV1 receptors, capsaicin cream desensitizes them. I don’t see any systemic issues being caused by the mannitol cream so if it even helps a little it might still be worthwhile but I think targeting the edema might be the most relieving therapy and your physician will definitely know how to address this issue. Often times with EM treatment it takes a mix of things to get good relief. Finding something that even helps a little is a good start.
Side note, mannitol has interesting properties based on the method that it is administered. As a cream it targets pain receptors on the skin, as an oral tablet it is an osmotic laxative, and as an IV agent it is a first-line treatment for swelling in the brain (also due to osmotic potential).
@goatballs Yes, mannitol is a sugar but so are a lot of therapies. Sugars and carbohydrates are some of the building blocks of very important compounds. Please make sure what you are posting has some backed evidence. Making a blank statement that makes a recommendation against a physician’s prescribed therapy for another member on here is dangerous.
Joeshmoe , before you criticize someone for saying something that you don’t like , be sure that they actually SAID what you claim they said ! I never said anything about Mannitol that is NOT a true statement. Mannitol is INDEED just a sugar.
Hi CarterDK,
Thanks for your feedback. I will continue to talk to my doctors re systemic meds. Part of the problem is that I have various allergies and sensitivities and paradoxical reactions to different medications so it is a real balancing act.
Connie
Hi joeshmoe,
Thanks for your reply. It is terrific to learn something new. I try not to use magical thinking although pain can certainly drive us to that. So finding out about TRPV1 channels and how they may be affected by mannitol provided me with some scientific basis behind mannitol’s possible efficacy. So far my physician hasn’t come up with anything to reduce the edema. I am going to review the meds that I have used in the past to see if any of them targeted edema. I am currently on gabapentin, ketamine cream and mannitol cream. In the past I have tried misoprostal (no benefit) midodrine cream (no benefit), amitriptylene/ketamine cream (helpful but raised interocular pressure)…and probably others.
Thanks again,
Connie
I don’t know about the effects of mannitol but I to know that gabapentin can cause water retention and swelling. It is definitely a balancing act to find the right combination of medications that will give you relief. My daughter’s swelling resulted in wounds. She was switched to pregabalin, but that can cause weight gain. I know consulting with a pain management doc really helped her find the right combo for pain relief. Good luck.