I have an over production of mast cell in my stomach and high esenophil count in my esophagus . I need to be on an antidepressant / anxiety pill. Every one I try sets off my mast cell. Any suggestions of ones that have worked for you ? I am on gastrochrome and Allegra for my mast cell condition
Hi Grampat01, I also have MCAS/MCAD with concentration in the GI. I am not able to take any Rxs unless they are compounded. It's the fillers that usually set us off. I've heard Doxepin and Remeron are both also antihistamines that have worked for some people. However it's recommended to test before starting. We don't do well with anit-depressants if we have low serotonin:
"Before your doctor prescribes an SSRI for you, ask him to also have a test checking for blood serotonin levels. If they are normal or high then you should be able to tolerate the antidepressants."
But first and foremost, you must change your diet and avoid your triggers. Once you stop reacting, your anxiety will go away. You must remove the cause. Cover-up band-aids don't work for us. Generally, almost no medications are tolerable unless specially compounded and of the mast cell stabilizing or antihistamine family.
You may need to adjust your antihistamine. It may not be the best fit for your MCAD. One tablet is definitely NOT enough. We take 4+ times the normal dose. Talk to your doc about adjusting other things before trying to cover up something that's obviously getting worse sice you're still being triggered.
If you haven't already, try an elimination diet. I found I was very sensitive to salicylates. I removed them from my food list and I feel wonderful. I am on ketotifen and don't have GI issues any more. Zantac and Zyrtec didn't work well for me alone. I had to change my diet and environment and heal my gut first.
I wish you the best. I know how frustrating it can be.
You're welcome! Generally we are all so different, and as time goes on, our reaction triggers may change, so it's hard to get a recommendation from another mast cell patient. Although I understand sometimes that's a good place to start.
The Canadian Society for Mastocytosis recommends we avoid antidepressants, as they are generally not well tolerated. Elavil, Paxil, Remeron and Wellbutrin caused me to react in the past. Once I got my triggers under control, my anxiety vanished.
Here is the info from Canada about which medications we should avoid:
Medications should only be taken as directed and instructed by your physician, whether they are OTC (over the counter/off the shelf) or prescription. Always consult your physicians prior to taking any new medications.
CALL 911 if you experience life threatening or other serious adverse reactions to any treatments.
Antihistamines - Most antihistamines come in various strengths and some forms have a built in decongestant. Mastocytosis patients need to avoid decongestants. Consult your physician prior to taking any new antihistamines.
Antibiotics - These are not well tolerated. However, over the years, masto patients have built a list of antibiotics they've found to be safest (varies per patient - these are not an endorsement, just patient reported):-
Biaxin (eg. Clarithromycin)
Generics vs. Name Brands - Some patients cannot use generics, some have difficulty with name brands. Under physician guidance, use what consistently works for you. Also, some patients report that they alternately use generic or name brands of their medications, depending on how bad their symptoms are per day.
Cold Medicines - Generally, these patients cannot tolerate cold or flu medications.
Atarax (Hydroxyzine) - This is a powerful antihistamine however it is a very strong anticholinergic drug. It has caused heart palpitations or irregular heartbeats in mastocytosis patients. It has also caused elevated or fluctuating blood sugar levels. Use on emergency basis rather than daily if it causes problems.
Antidepressants - Mastocytosis patients have reported adverse reactions to all types of SSRI antidepressants. They should be avoided.
Benadryl - This is a crucial first line emergency life saving medication. It is also anticholinergic but not as potent as Atarax. To avoid developing a tolerance to Benadryl, it is not recommended for daily use in any form. We suggest the Children's Allergy Liquid only as the liquid form works faster than tablets or pills, and it does not have alcohol. The Adult Benadryl Allergy Liquid has alcohol and a flavouring which has bothered many patients. Many patients report that generic forms of Benadryl do not work as effectively.
Cimetidine - This is a powerful antihistamine we do not suggest. Research has proven that long term use causes permanent vision damage.
Ginger Gravol - Ginger has salicylates, which may not be safe for those who react adversely to aspirin. Consult your physician about this medication.
Doxepin - Research has proven (and patients have reported) that this medication may cause heart arrhythmias in some at high doses (over 50mg). We take it in very low dose (eg.5-10mg) and slowly increase under Physician guidance. This drug is effective for mastocytosis patients in low doses. Histamine and other chemicals are dumped by our mast cells during sleep. Taking Doxepin at bedtime is an effective antihistamine with the rare ability to cross the blood-brain barrier. It helps with all symptoms.
Steroids - Long term use of Prednisone has caused diabetes in some patients. Long term use of Corticosteroid creams has caused thinning of skin. Always report unusual symptoms or complications experienced while using these medications.
Tramadol - This medication comes with or without acetaminophen. As the liver is hardest hit by mastocytosis, physicians recommend the form of Tramadol *without* Acetaminophen to protect the liver.
Hope this helps.