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MCAS Measures Don't Seem to be Taking


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I started on Clarinex/Desloratadine (H1) two months ago. Added Pepcid (H2) a month back. Last week, I included a product with Quercetin, a mast cell stabilizer. 

I've seen absolutely no improvement in what I believe are MCAS symptoms or even allergy symptoms. I still feel like there's an oven heating up in my chest and coat hanger area around the back of my neck every day. 

What next? I have to speak with the neurologist on Tuesday because I've been having daily surges, if not full blown flares for the last few weeks. 

Has anyone gotten their doctor to finally agree to treat for MCAS, but not had anything they've thrown at it work? 

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There is still more. They can change H1 and H2 blockers. They can add Singulair. They can add low dose Naltrexone. I'm sure there is even more. Does your Neurologist specialize in MCAS? I ended up at an Immunologist to get treatment. He seemed pretty well versed in things to try once he decided MCAS may really be what we were dealing with. Hang in there. It takes a while to find something. I still have flares, but the every day stuff is better.

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17 minutes ago, KiminOrlando said:

There is still more. They can change H1 and H2 blockers. They can add Singulair. They can add low dose Naltrexone. I'm sure there is even more. Does your Neurologist specialize in MCAS? I ended up at an Immunologist to get treatment. He seemed pretty well versed in things to try once he decided MCAS may really be what we were dealing with. Hang in there. It takes a while to find something. I still have flares, but the every day stuff is better.

He is not. At first, he wasn't buying it, but he's very good about looking into things he doesn't know about. We got to a point where he admitted that we've tried almost everything he knew and has become more open to my suggestions, one of which is LDN, which I'm planning on revisiting with him (another is some combination of THC with the CBD I'm currently using). 

Is LDN an H1/2 blocker as well? 

My biggest concern would be telling him that none of this worked and him going back to the idea that it must not be MCAS because at first, his idea of it was much narrower than including a lot of our less openly visible symptoms. 

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I think it was the first thing the neuro mentioned as easy and over the counter, but I also remember it being the first thing mentioned here: 

https://www.healthrising.org/blog/2018/09/19/winning-the-lottery-novel-treatments-return-severely-ill-pots-patient-to-near-health/

Quote

Dr. Jill Carnahan reports that the following over-the-counter drugs or supplements can block MCAS symptoms. If you experience MCAS symptoms and these make you feel better, it stands to reason that you may have MCAS. (Not responding to these treatments, on the other hand, does not mean that you don’t have MCAS.)

 

H1 blockers

  • Diphenhydramine (Allergy Relief, Allermax, Banophen, Benadryl, Compoz Nighttime Sleep Aid, Nytol QuickCaps, PediaCare Children’s Allergy, Q-Dryl, QlearQuil Nightitme Allergy Relief, Simply Sleep, Sleepinal, Sominex, Tranquil, Twilite, Unisom Sleepgels Maximum Strength, Valu-Dryl, Vanamine PD, Z-Sleep, ZzzQuil and many others)
  • Loratidine (Claritin, Claritin Liqui-Gels)
  • Cetirizine (Zyrtec, All Day Allergy)

H2 Blockers

  • Famotidine (Pepcid, Pepcid AC); Cimetidine (Tagamet, Tagamet HB); Ranitidine (Zantac)

Mast Cell Stabilizers

  • Cromolyn, Ketotifen, Hyroxyurea

Natural anti-histamines and mast-cell stabilizers

  • Ascorbic Acid, quercetin, Vitamin B6 (pyridoxal-5-phosphate), Omega-3 fatty acids (fish oil, krill oil), Alpha Lipoic Acid, N-acetylcysteine (NAC), Methylation donors (SAMe, B12, methyl-folate, riboflavin)

 

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8 minutes ago, MTRJ75 said:

 

  • Famotidine (Pepcid, Pepcid AC); Cimetidine (Tagamet, Tagamet HB); Ranitidine (Zantac)

I would like to state that Ranitidine ( Zantac ) is no longer safe to take and has been pulled off the market

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Neuro wants to keep with the current treatment until we're sure all vaccine effects have passed. He thinks I may still be lit up from that and some weather changes. He's also prescribing LDN, but I'm not sure he understands how to do it. At first he said the pills were 50 mg and I should just break them in half, but I sent him to a few sites that explained how LDN is different than just breaking a naltrexone pill in half. May end up starting a new thread for some more direction from those who have tried it. 

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@MTRJ75 I'm on those pills. Here's the scoop as it was told to me by my doctor. It only comes in 50mg pills because it isn't meant to be used this way. We are using it off label. They don't have approval to make it in our dosage. You can have it compounded by a full compounding pharmacy. Walgreens etc are not full compounding pharmacies despite the fact they say they compound. Your insurance company may not cover it if you have it compounded. It will be more expensive even if they do.

OR

What I do is to cut the pill in half. Then split each half in half again so I have quarters. Then I split the quarters in half. It is inexact dosing and I talked with my Immunologist about it. He said it evened out because every 4 days he knew I was getting 25 mg. So far it is mostly workng. He said we would never be able to fully stop it.

I'm surprised your doctor wants to start you on such a large dose. Also you need to know that even a quarter of a pill made me pass out. It did something, I don't know. I'm not sure if it works on neurotransmitters that dropped my blood pressure or what happened. You may want to ask some more questions on exactly how this med works and talk through how it would likely affect you. 

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10 hours ago, KiminOrlando said:

@MTRJ75 I'm on those pills. Here's the scoop as it was told to me by my doctor. It only comes in 50mg pills because it isn't meant to be used this way. We are using it off label. They don't have approval to make it in our dosage. You can have it compounded by a full compounding pharmacy. Walgreens etc are not full compounding pharmacies despite the fact they say they compound. Your insurance company may not cover it if you have it compounded. It will be more expensive even if they do.

OR

What I do is to cut the pill in half. Then split each half in half again so I have quarters. Then I split the quarters in half. It is inexact dosing and I talked with my Immunologist about it. He said it evened out because every 4 days he knew I was getting 25 mg. So far it is mostly workng. He said we would never be able to fully stop it.

I'm surprised your doctor wants to start you on such a large dose. Also you need to know that even a quarter of a pill made me pass out. It did something, I don't know. I'm not sure if it works on neurotransmitters that dropped my blood pressure or what happened. You may want to ask some more questions on exactly how this med works and talk through how it would likely affect you. 

I've gone on LDNResearchTrust.org and located compounding pharmacies. I'm going to contact them and ask them what the deal is and how much it costs. I was led to believe it wasn't very expensive and chopping the 50 mg pills down to the intended 1-4 mg dose can't be optimal. 

I've also had the cardiologist and neurologist both suggest cannabis. The cardio whispered it, but the neuro was a bit more enthusiastic about it. I know this certainly isn't covered by insurance, so I may end up spending a good chunk of disability income on alternate medications, but if they help, so be it. Anything to get out of feeling like this anymore. A severe thunderstorm last night brought drenching sweats and I felt like my head was going to burst about a half hour before the storm hit. 

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I've made some progress on this front with a mail order pharmacy listed on the LDNResearchTrust.org website. That's in line with the price I was quoted as well up to 6 mg per day. I really think this would be much easier for you @KiminOrlando

I can't remember the pharmacy off the top of my head right now, but will come back and post later (or add to this one) if the link is allowable. 

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On 5/28/2021 at 5:23 PM, KiminOrlando said:

That sounds great! Yes, it would be MUCH easier. I'm very interested in this info. 

 

When you do a pharmacy search on LDNResearchTrust.org you'll get lots of options. 

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Hello I was reading some of the past posts on MCAS and I noticed some thing a pain specialist who helped me get approved for the cannabis program in my state mentioned me to consider this LDN. I have pain throughout my body I don’t even know which thing it’s related to first it was fibromyalgia then it was myofascial pain syndrome then it was complex regional pain then they said it was connected to the dysautonomia in the Mast Cell at this point I just know it’s pain and sometimes it’s like neuropathy in other times different form I have been on the cannabis program for a couple years now the difficulty is my body does not tolerate cannabis unless the ratio is very low like 20 CBD to one THC which is very hard to find at the dispensary so I’m pretty much stuck with topical. Can anyone tell me their experiences with this LDN I was very leery because I thought the ldn drug was for people recovering from addiction so I was confused and leery . being hyper Pots have to contend with my blood pressure going very highOr the ability to drop it low and the same goes for my stomach anything can constipate me seriously and most over-the-counter remedies will give me the runs. I feel like I am a swinging clock hand. Thank you and God bless. 

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That's where a lot of the confusion stems from: Naltrexone is for people recovering from addiction, but LDN (low dose) has been found to have positive uses in many conditions. However, it doesn't seem to be well studied because it's too cheap and not worth the money to do so. In LDN, you're generally taking around 10% of the dose that people are taking for addiction recovery. 

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I too am hyperadregenic. My dys neurologist put me on LDN for inflammation because that’s the root cause of my autoimmune disease and dysautonomia. I also am on Plaquenil and SCIG. LDN is the third immunomodulatory drug I am on. It seems to help me. Plaquenil is great for muscle/joint pain, low grade fevers and fatigue and was the first med prescribed for autoimmune disease by my rheumatologist 5 years ago. That lead to the first improvements that allowed me to get to physical therapy. After a positive autoantibody test for alpha a-1 receptors I started SCIG which helped even more but did nothing for BP/HR. I have been on LDN for a couple of months and slowly titrated up to 3mg/day and it *seems* to help everything plus my BP/HR seems more stable as long as I am sufficiently hydrated. It’s not a panacea by any means but I think it brought me out of a 6 week joint pain etc flare and if it is helping with BP/HR it’s the first anti inflammatory to do so. There lots of posts on this forum if you search for it. This might help too https://ldnresearchtrust.org/what-is-low-dose-naltrexone-ldn

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@p8d - thanks for the update and link. It's so great to hear that you are feeling better! I truly hope the medications will continue to give you relief!!!!

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