I accidentally came upon this and am wondering it you can have a problem with mast cells and lupus and rheumatologists and GPs may not think to explore it. I have long Covid ( had Covid last November) and was looking up the symptoms that I have. My worst symptoms are chronic diarrhea, itching, faint when getting up, heart arrythmia that I don't think is necessarily because of my lupus. So many are on the list for mast cells. Right now, I am so tired and worn out, can't even think what I want to ask or say. If anyone has any information, I would be so thankful.
I am seeing my GP tomorrow and don't know if I should bring this up or not.
Healing hugs.
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Pumpkin2009
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You may also want to ask your GP about postural Orthostatic tachycardia syndrome (POTS). It’s a form of dysautonomia, can cause fainting upon standing and tends quite often to go along with MCAS.
Hello. There are various things which could account for this. Long Covid possibly being one of them, from what I have read of it over the past months. In terms of a MC issue, are there any obvious triggers? If you are not already aware, useful info can be found at:
I have Lupus, APS, a genetic condition, and probably some form of post viral syndrome/ME, plus an autonomic nervous system disorder, etc, etc. I also think I have a MC issue - I react to certain, known trigger foods - generally itching, maybe some hives, and other. I haven't really been able to engage a GP in conversation over this - mine haven't the knowledge. However I have managed to persuade one of them to put antihistamines on prescription for me: loratadine. They have helped. Might be worth asking your GP for a trial or saying you will be trialling yourself (inexpensive and available over the counter), to potentially rule in/out MC issues?
Mrs. Mouse, Thank you for your support and information. My GP does not know a lot about MCAS, but listened. I checked out the links you gave and realized how many symptoms match before I got Covid. Then after Covid, seemed to worsen. Still I understand that it may not be MCAS, but mixed with other things I have. My GP is going to test for some other things and then if they are all right, refer me to an immunologist, I think.
I had similar allergic-type issues. I did have mast cell disorders ruled out. I have autonomic dysfunction with hyper-responsive nerves.
Covid is known to affect the autonomic system. This is very hard to sort out. Will probably take extensive testing. The mast cells and autonomic nerves talk to each other so not easy to know what is causing what.
I am going to bet not mast cell disorder based on how you describe symptoms. The immunologist I saw said my presentation was wrong - mast cell patients sort of crash like an allergic reaction. Think you are more like me - more chronic.
Thank, Kay. My new GP did listen. He first wants to rule out Carcinoid tumors based on my history of intestinal issues so I have some tests to get. Then, I think he feels that an immunologist could help. I realized that figuring out MCAS is difficult . Right now, I am just hoping that what is going on gets better. I do wonder if in the past before I got Covid, the out of no where frightening intestinal attacks I get could be from mast cells. No one has had a clue to why they come on without warning and are so horrible. Then, I may not have one for months.
The doctor is concerned about my cholesterol and triglycerides and getting my iron level more stable. He seems very thorough and does listen.
Hi Pumpkin. My background is SLE, POTs, EDS and pericarditis. I seem to be forever in a flare. For a long time it's been suspected that I have MCAS or at least something amiss with my mast cells.
I have certain triggers that leave me totally debilitated. Years ago I was once driving on the M25 and had a serious allergic reaction to nothing, except myself.
I have recently been started on ketotifen which helps but knocks me out. I take daily certirizine. I am also on steroids for SLE so that probably helps a bit too.
There is a HU group for MCAS on the Mastocytosis UK page. Everyone is wonderful on here too.
Everything has revved up since I've had my covid jabs. It's definitely made my MCAS Worsen at least in the short term anyway, but better that than covid. Although I appreciate it doesn't entirely reduce the risk.
Have you worked out your triggers yet. Mine are sunlight, UV light, garlic, strawberries, stress, to much nightshade veg.
The trouble is I don't know where one condition starts and the other stops.
Having a really tough run of it at the moment otherwise I'd write more
SLE with persistent aPL and cranial neuropathies here. MCAS is notoriously hard to diagnose and usually requires an immunologist. I think I have something MCASish going on when my dysautonomia was at its worse. Heart rate was going all over the place. I was on atenolol (slows the heart) for a little while I ramped up exercise to get my heart rate down. I found tremendous relief from antihistamines and the more I took them, the better I felt. I was told this is a sign of MCAS. I also started montelukast/singulair and this helped as well with rashes and flushing. I no longer take this because it made me tired and I gained weight. I also went off of atenolol late last year after being on it for about 2 years.
I wrote this blurb on some physician COVID forums when no one knew what long haulers were. Maybe it’ll help if even a little.
Long haulers seem to be getting dysautonomia, which can cause brain fog, shortness of breath, exercise intolerance due to inappropriate tachycardia and extreme fatigue. Been dealing with this for years now. Unfortunately, dysautonomia is hard to diagnose and doesn’t respond to much except MCAS treatment, beta blockers and extreme hydration. Should be sadly interesting to see how many people become disabled after this. I’m thinking a lot.... or at least in the short term.
Anyone dealing with this... some tips
- Get a good couple pairs of compression socks 15-30 mm Hg, support nylons help too
- Hydrate. Liquid IV is amazing. Water goes in and out.
- If your heart rate is jumping, a short course of beta blockers or calcium channel blockers can help. I like atenolol. I have asthma and tolerate this well. Propranolol is too much. Cardioselective BB work best IMO.
- Stairs and laundry are your biggest enemies.
- Try to exercise, strengthen calf muscles. Some ppl even use low doses of stimulants to give them squeeze.
It’s essentially like being septic without an infection. Your blood pools when you stand making your heart feel like you are hypovolemic and off you go. MCAS treatment consists of antihistamines including fexofenadine, famotidine and montelukast. Wellbutrin can also help with autonomic neuropathy and give you a little squeeze as well since it’s a stimulating antidepressant. I’ve attached a study that showed 73% response rate in a small trial using Wellbutrin in nondepressed pts with neuropathy.
Not much you can do but ride it out. Diet and biofeedback doesn’t always work for dysautonomia. Neurovascular dysfunction can be aggravated by foods and stress but it also does what it wants. Eg I’ve gone from 30 to pause for a few seconds and then into the 160s at rest in a dark room. Dysautonomia like this is also very common after infections, especially viral.
Jmiller, I can relate to so much of what you have said. My new GP listened and seems helpful. He first wants to rule out Seratonin and Carcinoid tumors. Then, probably refer to an immunologist. I am still hoping somehow everything starts to turn around - wishful thinking.Thank you for all your information and support.
Your doctors are on point. Both of these, including pheochromocytoma, were ruled out in my case as my metanephrines were high. I was also having a flushing episode when they drew the lab. All of my urine tests were negative. However, high metanephrines can be a sign of something called HyperPOTS, which is a more stimulating type of dysautonomia. High tryptase during an episode can also be diagnostic of MCAS.
Sounds like you’re on the right track. Keep us up to date with what you find. ❤️xx
RUN-DMC has done quite a bit on long Covid and Mast cells so worth digging around on his youtube. Here is one to start you off youtube.com/watch?v=OaNXiEU.... Seeing if antihistamines help will give you an idea, if you can tolerate. I can't, so use quercetin. Could just be that virus persists in gut, triggering mast cells (and oestrogen triggers histamine and makes it slower to clear, exacerbating the problem). Best of luck with GP.
bookish, Thank you for the you tube link. I listened to this one and another and learned a lot. I plan to listen to more. Am still worn out from my doctor's appointment yesterday.
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