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:

Hi tk,

I have had edema in my feet (3 times) which was caused by exacerbations (neuro confirmed). Once the exacerbation resolved so did the edema.

Back from the neuro. He does not believe that the angioedema is from an MS exacerbation. He did mention that I do look like I am retaining a lot of water. (And I'm less swollen today than I have been in a few weeks.) He wants me to taper off gabapentin. I told him my concern about the severe nerve pain that I get due to the constant hug. He said if it gets bad we will try something else. So, I have my taper schedule for the gabapentin. Today my reflexes were slightly hyper. Funny how it changes from day to day. Welcome to the wonderful world of MS where everything is so unpredictable. :) I also had a little trouble on the finger to finger test. But all in all it was a good visit.

Next up, allergist/immunologist on Thursday and rheumy in July.

That's interesting. I have a feeling about that gabapentin too.

If you are responding to antihistamines, etc, that suggests an allergic reaction.

This study analysis suggest at 1800mg a day or more as a factor for the peripheral edema effects to start.

If this is your problem, you are a lucky gal, because you really don't want to have the bradykinin angioedema, as that is not easily treated.

I hope you are tapering off carefully? It is so difficult to have that MS in the mix... that has to cloud everything!

I did a bad thing this morning. I forgot to take the prednisone. I am now swollen up again. So, maybe the antihistamines aren't working and it was the steroids that was decreasing the swelling. UGH! I was so hopeful this morning too. Dang it all!

mrsD - I'm on 900 mg of gabapentin a day. The taper schedule is to take 600 mg a day for a week, then 300 mg a day for a week, then alternate days, then every other, etc. until I am weaned off. It'll take about a month to be fully off the gabapentin. Again, I see the allergist/immunologist on Thursday and will discuss the possibility of HAE vs. acquired angioedema, vs. allergies vs. something else.

Well... there are days! The puffy will come to me for no reason, it seems!

I've had 3 days of NO swelling in my hands...which is very unusual for me lately. I didn't put the magnesium lotion on them
yesterday, and today they are starting to puff up.

The Morton's epsom lotion really does work for swelling for me. I will put some on with breakfast today. I use it on my hands and left foot mostly. (I try to keep my left foot elevated as much as possible too).

I find it really difficult to manage this. But without that evil drug in the mix, I am sooooo much better.

I only use 25mg of atenolol for my blood pressure, and my levothyroxine, now. No other RX drugs daily. Lasix very infrequently with severe swelling, and 1/2 tramadol at night if pain is terrible. (maybe once or twice a month).

I am trialing the new Bayer advanced aspirin 500mg. It has a new rapid releasing dosage form, to protect the stomach, and one of those a day, seems to help too. I've always used AlkaSeltzer, my whole life for intermittent pain, (not every day) because aspirin in solution is rapidly absorbed and not a big risk for the stomach bleeding. I get more relief from aspirin than from other NAIDs for some reason. :rolleyes:

Most of my swelling is GI located, still.

Let me know what the immunologist says. I am waiting for the drug induced lupus to go down, to see exactly what it contributed to the angioedema. I'd rather see the doctor after our summer trip... that is not a good time to start a new treatment. After 66 yrs, I am pretty used to this after all! :rolleyes: The lupus rash on my arms is fading away, but slowly. I am using it as a marker of sorts. ;)

Woke up totally puffed up again. Too the predinsone and am less swollen. Phew!

mrsD - I'm going to have to get to Wal-Mart and get that lotion. I soaked my hands in Epsom salt and that seemed to help. I am not back to muscle spasms and swollen tendons along the top of my forearm on my left arm. There's a nice knot in there as well. I massaged some of it out this morning and it did help as I'm able to move my wrist now with little pain. Do your muscles get like that with your angioedema?

Yes, I have had alot of muscle tension/knotting. In fact I went to a chiropractor who was known in the medical community very well and all the doctors go to her! This was for my right knee years ago. (it was swollen up twice its size)... She adjusted it...and that adjustment worked, and slowly it got better. SLOWLY. I also had a steroid injection in it after an MRI. The ortho could not get fluid out of it when the injection was done...and he was surprised. I guess it was angioedema swelling and not "water on the knee" etc.

This chiro said I had the hardest muscles of anyone she has ever seen (20yrs). Now I think it is the angio. My abdomen when it swells is hard like a drum too. I am a large woman and hard as a rock? The only softness I have are "my girls"...if you get my drift?

This magnesium lotion is really wonderful. My fingers are back down BTW.(my wedding ring is my index of swelling). Don't lather it on, as the magnesium will get absorbed some. But just a dollop here and there, is more than enough. For $5.95 it is a real deal IMO.

All my life now that I think back, I've had strange reactions from doctors, radiologists, chiros. dentists... After my C-section when my son was born was the most dramatic. All the doctors who came to visit (I had 3 specialists because my blood pressure was so high) all had to examine me AGAIN... esp my neck which was hugely swollen, (and puzzled all of them). I appeared more pregnant AFTER delivery than before. I only gained 25lb during the pregnancy too.

If you think back, and this is not easy BTW... you might find episodes of weird reactions to the dentist, OB, or invasive medical procedures. It has gotten so tiresome for me, I don't want and am afraid to ever see a doctor again! :rolleyes:

I've also had some really extreme bug bite reactions. One was a black fly bite on my eyelid which landed me in the ER in Blue Hill Maine on a vacation! The whole side of my face was swollen including my eye shut. Bee stings ditto but not as extreme, and also mosquito bites which can get huge too.