Is MCAS worsening because of meds or SIBO/gut motility?

[SpinachHands]

My partner's MCAS has continued to worsen every day for months now. The symptoms are near constant, and worsen with anything they ingest. We've cut out nearly everything we could think of that could be worsening it, stopped all their vitamins, supplements, even moved house to escape from mold/damp issues. They've tried nine H1 blocker antihistamines and two H2 blocker antihistamines and been unable to tolerate any without their MCAS flaring up worse. A short steroid course helped in a minor way but within a day of stopping the symptoms returned. They take 1200mg sodium cromoglicate a day, and while it helps it's not enough of a dent. Something must still be flaring it up for it to be continually getting worse, as no treatments seem to be able to work well enough or outpace the rate at which it's worsening. We have two working theories:

1. Their ketotifen has possibly been flaring up their MCAS the whole 8 months they've been on it.
It's always seemed to make them feel better, more energetic, every time they increase the dose, but doesn't seem to impact the MCAS much. Their symptoms usually get worse around the time it would be at it's most effective/strongest, and lessen around when it's wearing off.

2. Their gastroenterologist has a theory that their hypermobility means they have gut motility issues which has led to SIBO. With the bacterial overgrowth going unchecked it could be keeping their immune system on constant high alert.

Neither option is great, as one means weeks of tapering off a medicine that has a great benefit, and it may take some time for us to even know if it was worsening the MCAS. The other option is a course of antibiotics to treat the SIBO, which can be bad for MCAS in the first place, and even if it does treat the SIBO it may not have the domino effect of helping the MCAS we hope it does.

Has anyone with MCAS had it be worsened by a medicine you were taking for a long time before you realised it? Or has anyone found that dealing with SIBO has noticeably improved your MCAS?

 

[wabi-sabi]

The thing that made my MCAS the worst was not treating it-meaning it gets worse not better if you leave it alone. You start getting more and more reactions to more and more random things. Avoiding triggers was never an option for me since I react to things like sunlight, temperature changes and water pressure. My doctor told me not even to bother trying to figure out food triggers, since my mast cells were so riled up they were just reacting to everything and anything randomly. It wasn't the food I was reacting to, per se.

The medications that help me, like ketotifen, also hurt me if I take them in the wrong dose. For example, my doctor gave me 1 mg ketotifen to take daily. That's too much. But when I take 1 mg every 44 hours it makes me better. It took months of trial and error to find this. It was the pattern of getting better and worse that was key to finding the right dosing schedule. I would feel better when it had worn off a little but, but terrible when it had worn off all the way. So I took it just before I started feeling terrible. After a few weeks of a schedule that my mast cells liked, things calmed down.

That's how all my MCAS meds have worked, except for the antihistamines-they are just not powerful enough to do much on their own and my doctor does not waste time messing around with them. Doctor gives me right medication; I have to find the right dose. For me, it isn't a case of just one medication either. I am on five medications for MCAS and I need them all. There's 6 if you count LDN!

So my best guess it that the MCAS is causing the dysmotility, not the other way around. The MCAS is getting worse, because that's what MCAS does without the right medications-Just like any chronic illness gets worse when it doesn't get the right treatment.

 

[SpinachHands]

The thing that made my MCAS the worst was not treating it-meaning it gets worse not better if you leave it alone. You start getting more and more reactions to more and more random things. Avoiding triggers was never an option for me since I react to things like sunlight, temperature changes and water pressure. My doctor told me not even to bother trying to figure out food triggers, since my mast cells were so riled up they were just reacting to everything and anything randomly. It wasn't the food I was reacting to, per se.

The medications that help me, like ketotifen, also hurt me if I take them in the wrong dose. For example, my doctor gave me 1 mg ketotifen to take daily. That's too much. But when I take 1 mg every 44 hours it makes me better. It took months of trial and error to find this. It was the pattern of getting better and worse that was key to finding the right dosing schedule. I would feel better when it had worn off a little but, but terrible when it had worn off all the way. So I took it just before I started feeling terrible. After a few weeks of a schedule that my mast cells liked, things calmed down.

That's how all my MCAS meds have worked, except for the antihistamines-they are just not powerful enough to do much on their own and my doctor does not waste time messing around with them. Doctor gives me right medication; I have to find the right dose. For me, it isn't a case of just one medication either. I am on five medications for MCAS and I need them all. There's 6 if you count LDN!

So my best guess it that the MCAS is causing the dysmotility, not the other way around. The MCAS is getting worse, because that's what MCAS does without the right medications-Just like any chronic illness gets worse when it doesn't get the right treatment.

Thanks for the advice, a lot to consider there if we want to experiment with dosage and timing...
Would you mind my asking what other MCAS meds you're on or have found helpful? My partner's on ketotifen, Cromolyn and montelukast. They've only been offered antihistamines besides this, but we did also recently trial Prednisone for 3 days. I've been looking into autoimmune/immunosuppressant therapies that have shown promise for people with severe MCAS, but I'm struggling to find UK doctors that would be likely to prescribe them.

 

[bad1080]

Prednisone for 3 days

the rebound/withdrawal after just 6 days of prednisolone has been hell for me.

Adrenal insufficiency occurred even with low dose (<5 mg prednisolone equivalent) and short duration (<4 weeks) glucocorticoid treatment and following tapered withdrawal. It persisted in 15% patients retested 3 years after glucocorticoid withdrawal.

from: https://bpspubs.onlinelibrary.wiley.com/doi/10.1111/bcp.14679

While glucocorticoids are anti-inflammatory in the periphery, they can be inflammatory to the central nervous system; these findings suggest this effect may be amplified in people with ME/CFS due to increased sensitivity to glucocorticoids.[1]

from: https://me-pedia.org/wiki/Glucocorticoid

https://www.reddit.com/r/BcellAutoimmuneDis/comments/1dj73wt

 

[wabi-sabi]

Would you mind my asking what other MCAS meds you're on or have found helpful?

I take cetirizine and famotidine for antihistamines. I've taken the cetirizine for years for allergies and it doesn't do anything for MCAS. The famotidine helps a bit on stomach symptoms when the MCAS is already calm. My MCAS doc doesn't mess around with these- not sure if that's because I was already on them when I came to him or because antihistamines just don't do much for me. I suspect it's the latter. I was already taking LDN too, and it wasn't doing much besides helping me sleep and reducing pain a bit. Cromolyn helps a lot, but finding the right dose is crucial. We started ketotifen about a year after starting cromolyn. Again, it took months to find the right dose. That's why we wait so long between starting new medications- it takes a lot !!! of trial and error to find the right dose. I just started xolair and we will have to go through the process again with that. He says some of his patients take a dose every month and some take a dose every week. It all depends on how bad the MCAS is. I tried montelukast after getting COVID, but it made me much worse. I stopped that right away. I have very gradually improved being on cromolyn and ketotifen. My doctor adds on another medication when I can't increase the dose anymore of the others. All this has happened over three years or so, partly fighting with insurance company and partly figuring out the dosing. There's a great deal of trial and error.

In general, when you start a new MCAS medication, the mast cells get angrier. Then they gradually calm down as they get used to it. Then you can increase the dose again and the process repeats. When you can't increase the dose more, meaning the mast cells just keep getting angrier instead of calming down with time, then you stop at the biggest dose that's beneficial and add on another medication. That's how it is for me. After I feel better on the xolair, then we are going to try increasing my dose of cromolyn, since that's very helpful in tiny doses, but not helpful in large ones. The other important thing for me was iron. My iron was very low, and low iron makes mast cells angry too.

Based on my experience, I think there is more value in you trying to figure out the right medication dose (and the right doctor) than in trying to avoid triggers or find the perfect diet (the exception is if a certain food causes anaphylaxis!). If you partner is like me, then she will react to everything and anything and you can't avoid any of it, other than the things that cause big crashes like emotional upset or taking a shower. You can make yourself crazy and waste a lot of energy doing this. It's not like having a peanut allergy and avoiding peanuts. It's very tempting to think that everything can be controlled with the right diet, because diet is so easy to fix. But my doctor told me that no diet would help (because I was so sick with MCAS) and that I needed medications. Messing around with my diet would only make me malnourished (which would make things worse) and not give me any benefit. He told me that none of the food reactions were indicative of a real intolerance- they were just mast cells gone wild and reacting indiscriminately. That means I might react to one food one day and another food another day. There's no pattern and no food allergy/intolerance- just crazy mast cells. My mast cells react to life itself, and I want to live as large as possible. That means pacing and medications, but no trigger avoidance. This has taken me from severe trending to very severe to severe trending towards moderate. When I first started seeing my immunologist I was lying on the floor in the hallway because I couldn't sit up. Now I can go to appointments and stay in my wheelchair and there's no lying on the floor anymore. I can even walk from my bedroom to the bathroom. I am still stuck in bed most of the time, but I can read and think and write long messages from bed!