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Old 05-07-2013, 12:15 AM #1
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Me too, Erin. Me too. My reflexes were a little off too. She did say that it could be due to the swelling or I could really be having an MS exacerbation. I see the neuro tomorrow, an allergist/immunologist on Thursday, and a rheumy in July. Maybe between all of them they can figure this out. But, as often goes, each one will says it's another "specialty" area that they don't treat. My GI dr. and neurologist go back and forth on this with my swallowing issues.
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Old 05-07-2013, 08:17 AM #2
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The 'roids may be part of it???? I swelled up and turned into a bull elephant using dexamethasone before brain surgery a few years ago.

You mentioned prednisone - I was on that during my first pregnancy, and I puffed up well above my baby weight.

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Old 05-07-2013, 08:47 AM #3
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The word "angioedema" can also refer to allergic responses.

In this case the chemical targeted is histamine. Gabapentin and Lyrica have allergic potential...and it can occur at any time in therapy.

The second type of angioedema is NOT histamine mediated, but the chemical is bradykinin. This type does not respond to antihistamines, H2 blockers or prednisone, or epinephrine (although doctors will give the epinephrine anyway during airway events).

Here is a paper that explains bradykinin:
http://www.ncbi.nlm.nih.gov/pubmed/17620062

https://secure.muhealth.org/~ed/stud...les/Oct_08.pdf

This second article gives a long explanation on bradykinin.

As we spoke in our PMs, tkrik, I use one Lasix 40mg once a week or every other week, depending on the severity of my swelling. I have found this very helpful, as it takes time for the fluid to return to painful levels. Also my research found that bradykinin receptors can be somewhat blocked by bromelain, and green tea.
I use a special enteric coated bromelain to preserve it from stomach degradation. (it is made by LEF).

By keeping a journal, I can predict now swelling episodes. A day or two before they become severe, I have less urination in spite of drinking lots of water. If I don't take the Lasix then, it turns into a nasty episode, for me. However, most of my angioedema is GI still, with body swelling secondary.

If you are continuing on gabapentin, I'd suggest you taper off. This drug is notorious for causing swelling of the body, difficulty breathing and allergic responses.
http://www.drugcite.com/?q=gabapentin

You can continue to PM me anytime. This is a very difficult thing to diagnose and only the special blood tests reveal it. Find a doctor who can give and interpret these as soon as possible.

I was on a problematic drug (lisinopril) for almost 10 yrs before my massive angioedema attack. I consider myself very lucky to be here typing this post to you!
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Old 05-07-2013, 09:15 AM #4
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Tricia, I hope you get this figured out. It's bad enough to feel yucky but worse not to know how to fix it. You're in my prayers.
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Old 05-07-2013, 10:31 AM #5
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Thanks everyone!

Ann - I just started the steroids the other day. The prescribed it to help decrease the swelling in case it is some sort of allergic reaction.

mrsD - I got some green tea and started drinking that. I also seem to be responding to the medications that they prescribed (prednisone, Zantac, and an antihistamine). The swelling has decreased significantly since I started them. I can actually see the bones on the top of my foot again. The PCP wouldn't prescribe Lasix at this point. The edema is non-pitting and she was concerned about kidney damage. Also, since the swelling has decreased she didn't feel it was necessary at this point. We did discuss that Protonix could have been a culprit in this since I put on a significant amount of weight within a month or 2 of starting it. I had been on it for 10 months and recently stopped. Also, last evening I remembered that one of my prescriptions is a different generic form. I started it in mid-March and the swelling increased by Easter. I called my old pharmacy and got the brand name of what I was taking and my new pharmacy said they will special order that brand for me. I have to do that with the gabapentin as I reacted to another generic brand. I am going to the allergist/immunologist on Thursday and will discuss some of the things you and I PMed about and see about some testing for HAE or acquired HAE. Since this has been a somewhat gradual process it's hard to tell the cause. But over time it has gotten worse. I saw my PCP right after Easter and we discussed it then as the swelling was getting worse and uncomfortable. It continued to gradually get worse after that and started to involve my face and lips more and more.

Kelly - You are so right. It's hard to not know how to fix it. Once we know what's causing it the fixing part will be easier. It's just frustrating.

I see the neuro today and will talk to him about it and see what he says. Like I said, I've never heard anyone talk about swelling as part of a flare, except when they are on IVSM.
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Old 05-07-2013, 11:29 AM #6
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Good luck with your Neuro appt. today Trish.
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