Angioedema as part of MS exacerbation?
 

I have been dealing with abnormal swelling for a few weeks now. The swelling got bad enough that my PCP sent me to the ER. I did not present as a normal angioedema patient, yet had lots of swelling throughout my body. They are treating it as angioedema and I started taking prednisone, Zantac, and antihistamines. At the ER the dr. mentioned that possibly this was an MS exacerbation. I blew it off as I've never heard of swelling as part of an exacerbation. It make sense that it could because our nerves control everything but I have never heard an MS patient discuss this at all.

I went to my PCP today for a follow up. She too mentioned it could be an MS exacerbation of some form and was glad to hear I see the neurologist tomorrow. We looked over the ER report and discussed that the ER physician mentioned this possibility as well.

I was discussing this with my mom. She was a nurse and actually took care of a patient with MS when she was doing home care. She agreed that it may be an exacerbation or a symptom of an exacerbation.

I understand the mechanisms and the physiology of muscle inflammation. It makes sense to me and I get it but again, I have never heard any MS patient talk about over all body swelling as part of their exacerbation (with the exception of when they take IVSM.:D I'm a big sweller when I have to do IVSM). So, my question, has anyone experienced this or heard of this as part of their exacerbation. I go to the neuro tomorrow and just want to have some concrete knowledge behind me before I go in.

Do you take Lyrica or Neurontin?? I took Lyrica for a few weeks a couple of years ago. The Lyrica made me get a lot of edema. It wasn't an allergic reaction, it was an unexplained edema tho. Stopped taking the Lyrica, and it went away.

I wish that was the case Erin. That would be an easy fix. I've been on gabapentin since 2003 and have not had any edema issues with it whatsoever. I know that is a common side effect too but I've tolerated it well.

My PCP and I reviewed all my medications and discussed any new foods I may have eaten in the past 4 to 6 weeks. Nothing has changed. I stick to a pretty strict diet due to digestive problems so I know it wasn't anything different that I ate. I vary things and rotate my diet but it's the same foods.

hope they can figure it out and get it taken care of.

I always hope there's a simple fix. Too bad there usually isn't one.

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. :D My GI dr. and neurologist go back and forth on this with my swallowing issues.:D

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.

Lyn

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!

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. :hug:

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.:D 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.

Good luck with your Neuro appt. today Trish.:hug: