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I have been going to doctors for over a year now.. the latest mentioned a diagnosis of Mastocytosis.. I am wondering if anyone knows if edema of the extremities is part of that disease....any help is appreciated...
I believe that is not an uncommon thing to experience w/ mastocytosis. I think it falls under the term "angioedema." I swell a little all over at times when I am especially symptomatic. I have heard of other people w/ mastocytosis who swell in the legs and feet. I would be interested to hear what some of your other symptoms are that point toward mastocytosis. I wish you the best.
I tried taking Gleevec and I had edema with that. Also my bloodwork readings went too low so I am not taking that anymore. For past ten years I have been taking Hydrea for hypereosinophilia syndrome. Have taken anti-histamines for itching but they sedate so badly. Don't know what next step will be. Right now just taking 1 hydrea daily.
I have also been diagnosed with dermotgraphism... at times this leaves me incredibly itchy.. most allergy medicines I cannot take because of high blood pressure.. the swelling has only come about in the last week. but its extreme everyday. They are also looking into another diagnosis called " Hereditary Angio edema". I have been through many blood tests and still there is no firm answers.
Do you have the characteristic UP (urticaria pigmentosa) rash that is unique to mastocytosis? These are usually flat, red-brown spots on the skin that can become itchy and hived when aggravated.
As far as antihistamines, which kind have you tried? I wonder if the newer antihistamines (Allegra, Zyrtec) are any better w/ high blood pressure than the older ones (Benadryl, Atarax)? I truly don't know the answer to that question. I take Allegra, as well as the occasional Benadryl, both of which help to keep my bp from dropping too low. A rise in bp is often a desired effect of antihistamines in people w/ mastocytosis whose bp runs low, but I have also heard of people w/ mastocytosis who have elevations in the bp during attacks, which can be confusing to doctors who are expecting a drop in bp during an anaphylactic episode.
Wish I could be of more help...best of luck to you!
I have lots of swelling as well in hands, legs and feet. I also don't stay as hydrated as I should on the allegra and other medications. I also have the UP. Just recently was put on very low blood pressure medication but have been an all of the others for quite some time so I don't feel the other meds caused the hbp. Allegra does not make me tired but the generic does. I also have not heard of the edema as part of the disease but I would be curious because it is kind of an all over bloating. Good Luck and hope you get some kind of diagnosis as I know it can get frustrating.
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