Antihistamine therapy in the management of EM (revisiting the hypothesis)

General Articles and Research
1

Several members have asked the moderator team about antihistamines. Antihistamines are often overlooked in the treatment of EM, but these drugs have potent vascular effects. The Erythromelalgia Association's (TEA) 2008 Survey indicates that approximately 40% of antihistamine users report a modest improvement in their EM,whereas 60% report no improvement.

Histamine is a chemical involved in your immune system, proper digestion, and your central nervous system. As a neurotransmitter it communicates important messages from your body to your brain. It is also a component of stomach acid, which is what helps you break down food in your stomach. Because it travels throughout your bloodstream, histamine can affect your gut, lungs, skin, brain, and entire cardiovascular system, contributing to a wide range of problems often making it difficult to pinpoint and diagnose.

Histamine causes your blood vessels to swell, or dilate, so that your white blood cells can quickly find and attack the infection or problem. The histamine buildup is what gives you a headache and leaves you feeling flushed, itchy and miserable. This is part of the body’s natural immune response, but if you don’t break down histamine properly, you could develop what we call histamine intolerance.

Read following articles for more information on histamines.

http://www.mindbodygreen.com/0-11175/everything-you-need-to-know-about-histamine-intolerance.html

http://www.allergyuk.org/common-food-intolerances/histamine-intolerance

Old community post on antihistamines.

http://forum.livingwitherythromelalgia.org/forum/topics/secondary-erythromelalgia?commentId=6418999%3AComment%3A62525

Allergy testing is something else you could use to try to eliminate 'flare' triggers from your diet/lifestyle. We have a free toxicity test attached that is simple, quick and done easily at home. All you need is a blood pressure (cuff) machine.

A LWE community member Frostbite kindly wrote a great article on additives that you may find useful .

http://forum.livingwitherythromelalgia.org/forum/topics/foods-and-food-additives-that-cause-flares-in-em

Have you found any relief from taking antihistamines?

Do you avoid histamines and additives in your diet?

Let the community know your experiences- share and help inform each other.

Knowledge = empowerment

Thanks :-)

2

I tried a combination of 3 different antihistamines but it didn't make any noticeable difference for me. I know many other people have found them helpful though.

3

I have to be very careful with the diet. Bananas , cooked tomatoes, shellfish,pineapple. They all cause stomach problems and redness in the hands and ears. Alcohol causes a bad reaction. I agree with your thoughts on antihistamines.

4

I have taken cetirizine since very early on because I had what looked to the allergy clinic like heat intolerance urticaria. The consultant prescribed a double dose and it was very helpful with the swelling and itch. She sent me on the the urticaria clinic who did a heat test with a warmed glass held against my back. I had no reaction so it was dismissed as not urticaria. I thought it was a ridiculous process as I believed it was my whole body warming up which triggered the itchy lumps and bumps all over my body. However I persuaded my then GP who was very reluctant, to let me carry on with cetirizine. I just noted that my new GP has reduced the dose without saying anything and I will print out some of mads’ helpful articles to persuade him to restore my dosage. It isn’t so necessary in the Winter but essential in the Summer.

1 Like
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MThe new generation antihistamines don't help me. But I do get some help from periactin (cyproheptadine) an older generation antihistamine. It can help for months and then suddenly stops working, then a holiday from it and reintroduction. It never has worked as well on subsequent occasions after the first two periods on it. It was only by accident that I found this med helped abit with EM. It was originally prescribed for migraine. There is also antihistamine in the med I have just begun --Seroquel , an antipsychotic at higher doses. At low doses it works as an antihistamine and helps with sleep. Side effects of both meds in my case - weight gain and worsening constipation (but not everyone gets this, apparently).

I rarely eat anything on the list of foods mads has supplied as they all cause flares. I've been eating fresh grown tomatoes the past few days and am paying for it. None for me from today. My EM is also often mistaken for urticaria. I have had a couple of docs in EMERGENCY insist it is urticaria. I will go as far as to tell these docs I probably have urticaria as well as EM, because I'm not sure I don't. I am sure though that it is the EM that causes the burning pain.

blue

6

HI.

I have noticed that when my allergies are bad, I am more susceptible to intense flares. Since I have chronic nasal allergies, I find that Benadryl taken at bedtime helps with allergies, nighttime flares as well as getting to sleep. Unfortunately, I can't take it during the day because of drowsiness, so I take large doses of Vitamin C (2 grams/day) to de-sensitize the mast cells. Vitamin C has been a lifesaver for me since I don't do well with newer H1 antihistamines.

Cheers,

Dragica

7

I tried cetirizine for a very short time with seemingly no effect as far as I recollect. A few hours ago, my larotadine package arrived and I started my test. So far, I noticed no effects other than a minimal head ache which was of short duration.

Concerning diet, I avoid gluten and histamine as well as animal products since six weeks. I'm not sure whether this had an effect on my EM, it changes rather quickly at the moment and I made these changes during a period of EM worsening. Alcohol and coffee I never liked, so I have no knowledge on their effect on my EM.

8

This is an amazing amount of detailed information! Thank you for putting it all together for us. I have no experience with antihistamines except OTCs, and have not had any effect positive or negative from them.

9

Hi Dragica

Thanks for the info, Dragica. I am very interested to read that 2gms vitamin c desensitizes mast cells. I was told by my immunologist many years ago not to take big doses of vitamin c as it is likely to cause more problems for me. But she has not been right about everything. This is something I would be willing to try. I'm going to do a bit of reading on the subject.

blue

Dragica said:

HI.

I have noticed that when my allergies are bad, I am more susceptible to intense flares. Since I have chronic nasal allergies, I find that Benadryl taken at bedtime helps with allergies, nighttime flares as well as getting to sleep. Unfortunately, I can't take it during the day because of drowsiness, so I take large doses of Vitamin C (2 grams/day) to de-sensitize the mast cells. Vitamin C has been a lifesaver for me since I don't do well with newer H1 antihistamines.

Cheers,

Dragica

10


HI Blue.

I can only speak for myself in this regard. My experience with Vit C has been very good. I have had life-long allergies and for me Vit C really helps to reduce these and to strengthen capillary walls that burst easily. I think it really depends on the person. As with all things, moderation is important. If you do decide to try Vit C, build up very slowly, not take mega doses to start and never that much at once. I space mine out over the day. It's a water-soluble vitamin, so if one takes too much it just gets excreted and does no real good. Having said that if I feel a more serious allergy attack coming on, I take 1gm at once. I would recommend reading some of the studies on Vit C--there are many-- and then speaking with your MD.

Dragica

blue said:

Hi Dragica

Thanks for the info, Dragica. I am very interested to read that 2gms vitamin c desensitizes mast cells. I was told by my immunologist many years ago not to take big doses of vitamin c as it is likely to cause more problems for me. But she has not been right about everything. This is something I would be willing to try. I'm going to do a bit of reading on the subject.

blue

Dragica said:

HI.

I have noticed that when my allergies are bad, I am more susceptible to intense flares. Since I have chronic nasal allergies, I find that Benadryl taken at bedtime helps with allergies, nighttime flares as well as getting to sleep. Unfortunately, I can't take it during the day because of drowsiness, so I take large doses of Vitamin C (2 grams/day) to de-sensitize the mast cells. Vitamin C has been a lifesaver for me since I don't do well with newer H1 antihistamines.

Cheers,

Dragica

11

Interesting- estrogen worsens allergy

http://medicalxpress.com/news/2014-12-estrogen-worsens-allergic-reactions-mice.html

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That was interesting Mads. Estrogen. Ha! It has it's pros, and now has it's cons, it seems.

blue

13

Interesting , importance of magnesium

http://synergyhw.blogspot.co.uk/2013/01/magnesium-part-3-wrath-of-h...

14

Sorry people. I posted a whole lot of stuff that I have said before. So i deleted it. Talk about repeating myself. Ad nauseum. I have become my mother!

blue

Dragica said:


HI Blue.

I can only speak for myself in this regard. My experience with Vit C has been very good. I have had life-long allergies and for me Vit C really helps to reduce these and to strengthen capillary walls that burst easily. I think it really depends on the person. As with all things, moderation is important. If you do decide to try Vit C, build up very slowly, not take mega doses to start and never that much at once. I space mine out over the day. It's a water-soluble vitamin, so if one takes too much it just gets excreted and does no real good. Having said that if I feel a more serious allergy attack coming on, I take 1gm at once. I would recommend reading some of the studies on Vit C--there are many-- and then speaking with your MD.

Dragica

blue said:

Hi Dragica

Thanks for the info, Dragica. I am very interested to read that 2gms vitamin c desensitizes mast cells. I was told by my immunologist many years ago not to take big doses of vitamin c as it is likely to cause more problems for me. But she has not been right about everything. This is something I would be willing to try. I'm going to do a bit of reading on the subject.

blue

Dragica said:

HI.

I have noticed that when my allergies are bad, I am more susceptible to intense flares. Since I have chronic nasal allergies, I find that Benadryl taken at bedtime helps with allergies, nighttime flares as well as getting to sleep. Unfortunately, I can't take it during the day because of drowsiness, so I take large doses of Vitamin C (2 grams/day) to de-sensitize the mast cells. Vitamin C has been a lifesaver for me since I don't do well with newer H1 antihistamines.

Cheers,

Dragica