What to do when you can't tolerate any medications?

[Seven7]

I do a reset of gut, Gaps diet and my latest favorite way I just found is cabbage juice on empty stomach for 7 days ( last time I got ok in 5 days).

 

[Grigor]

I wish I could find out what the cull print of this is. I can't take anything that could improve my health a bit. It's so freaking frustrating!!

 

[Stark1]

Update: my doctor says I need to gain weight and get more nutrition (my copper levels are apparently low) before we try any more medications. Which is a bit of a catch-22 because I physically cannot eat enough to gain weight in my current state. They had me try an elemental formula but I reacted badly to it.

Starting to feel somewhat hopless over here! None of my doctors have any sense of urgency, which is incredibly frustrating

 

[Grigor]

(my copper levels are apparently low)

That's interesting. I always feel I need to add zinc because of my prolactin yet zinc lowers copper.

Anyways. Sorry to hear that your doc is useless...same here.

 

[Seven7]

I do Gaps and my latest discovery a few days of cabbage juice on empty stomach.
Gaps is rough and takes too long, w Cabbage juice I can tolerate things 5 days later ( morning on empty stomach).
Note: I also do rotation diet to avoid the trap where I can only eat 1 thing.
I know I need to reset tummy when the food allergies become out of control and I have constant diarrhea

 

[Rufous McKinney]

Question for those of you taking anti-MCASs medications...

Do these medications include side effects like dry mouth?

(I ask because I have some Sahara Desert situation in my throat, and I've found that I can ZERO tolerate any medication that includes this side effect).

(I would think anything with an anti-histamine effect would: cause more drying).

 

[gbells]

https://www.healthline.com/health/mast-cell-activation-syndrome#treatment

 

[kangaSue]

Update: my doctor says I need to gain weight and get more nutrition (my copper levels are apparently low) before we try any more medications. Which is a bit of a catch-22 because I physically cannot eat enough to gain weight in my current state. They had me try an elemental formula but I reacted badly to it.

Same here, low copper and reacted particularly badly to elemental formula. I've recently found from starting taking taurine that I'm not reacting so badly to a lot of things. It has also significantly helped with abdominal pain.

I wish I could find out what the cull print of this is. I can't take anything that could improve my health a bit. It's so freaking frustrating!!

See if taurine helps at all

 

[Grigor]

See if taurine helps at all

I definitely will. Thank you!!!

 

[Grigor]

Interesting

"levels of copper were higher among patients in 3 studies and lower in 1, levels ferritin were higher among patients in 2 studies and lower in 2, and levels of zinc were lower in 3 studies and higher in 2."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5409455/

 

[Learner1]

What that study says to me is that finding your own individual nutrient status and personalizing a program is the route to success. (Though metabolomics resrarchers have definitely found patteens not includedin this Dutch study.)

In delving into my genes, microbiome, infections, and mold and heavy metal toxicity, there are a lot of reasons why my nutrient needs are so unique. For example, my HFE SNPs result in iron overload (heriditary hemochromatosis, my PEMT SNPs lead to impaired ability to repair cell and mitochondrial membranes and I have other genes that increase my need for vitamin D, folate and B12 over the general population.

If you are reacting to things, its highly likely you have a significant nutrient deficiency or imbalance, even though it may not be obvious as to what. The taurine is an intersting guess, but you could also look into things that speed up acetyl CoA, like B5 and vitamin C, increasing glutathione or its constituents (certain aminos, minerals and B vitamins), or other imbalances of aminos, minerals, or antioxidants.

There are also stool tests which identify what your microbiome is doing biochemically, as well as tests for mold or heavy meyal toxicity or food allergies, which might provide some eye-opening answers as to why you may be depleted in certain nutrients which might be causing these symptoms.

 

[Hd-x]

@Hd-x Do you still take Cyproheptadine? Thanks for the suggestion!

Sry, for the late response (have not seen it )
Yes, Cyproheptadin is till today the main treatment for my MCAS. It makes the first weeks sleepy, but as longer you take it, this side effect fade away. I also gained in the meantime +10kg,
Problems like heatburn after eating I tapered in past with Benzo,
after several weeks on Cyproheptatine the heartburn issues also fade away and I usually no longer need a Benzo. (only if the utricularia comes up again if I eat anything that I shouldnt eat )

Cyproheptadine was for me a great MCAS help and fixed my Gut/IBS nausea problems. I tolerate many foods better then in past, certainly there are till today some foods that I dont tolerate any good, but it is a lot better.
Unfortunatly Cyproheptadine is somewhat weak if you have problems with swollen nose, bronchial problems or so.
I guess Cyproheptadine is not a very strong Leukotriene Antagonist.
Ebastin imo works better in such situations.


Here a case report from a German university about a worst MCAS case, it shows it is not that easy to find the right therapy - the girl had it all, naussea and not really able to eat, up to 20 diahroe / day + "CFS-like" symptoms (fatigue, cogntive problems, fever, pain and so on)
they tried first:
1.) Fexofenadin, Cromolyn/Pentatop, Vitamin C, Omeprazol, Montekulast, Valsertan
after this didnt work they tried:
2.) Cortisone, MEthotrexat, Azathioprin, Ciclosporin
after this didnt work they tried;
3.) Omaluzimab + Base therapy, this works for while but they had to stop it because off several side effects
after this didnt work they tried:
4.) Imatinib + the MCAS base therapy starts to kick in;
the final therapy was:
Imatinib + Cromolyn/Pentatop + Fexofenadin + Ketotifen + Flunitrazepam (Rohypnol)
Her MCAS score went down from 8,5 (10 worstest) to 2.

I found it somewhat shocking if cancer drugs are sometimes necesary to controll MCAS,
her Tryptase was just moderate increased and not that high.

 

[Learner1]

Tryptase is often NOT high in MCAS patients, so expert Theo Theoharides does not recommend it. My doctor did Chromagranin A and prostaglandin D2. There are other tests.

Thanks for sharing the info!

 

[Hd-x]

They also checked the other mediators, not only Trpytase.

imo the problem with MCAS is ,
the medicine can still measure around 12 mediators.
but we have over 100+ mastcell mediators, cytotoxine or whatever so stuff (mastcells release)
There is a huge black box that cant be tested or meassured

At last there are five MCAS phenotypes / subgroups
1.) IBS phenotyp, 2.) FMS phenotyp 3.) cardiac phenotyp 4.) CNS phenotyp 5.) ideopathic phenotyp

Many didnt fit just in 1 class and as more phenotyp overlappings, as more difficult it may get.

 

[Stark1]

I'm currently on TPN since I could not tolerate any foods or even formulas. So this sucks. Hoping to at least gain a little weight before my body decides to reject the TPN as well.

They also gave me klonopin, which helps a little, although I'm paranoid of the withdrawal

 

[Hd-x]

If you are on TPN and nothing helps,
there is still no sense getting paranoid if Klonopin helps now a litte bit.
I was vomitting and had diarhoe for some time, ended up sick with kachexia in emergency room and was getting nutritions + H1/H2 intraveneus, too. After leaving the hospital It took several weeks untill Cyprohept/Diazepam starts to work and things slowly improved step by step,
I am meanwhile back to my normal weight and able to do something.

Stress worsens MCAS, do not feed yours mind with negative thinking.
The majority didnt end up in any withdrawal clinic and reading horrible withdrawal stories didnt help either in yours situation. Give drugs some time and if a drug dont work in the long term, yours doctor needs to find another solution.

 

[Grigor]

Any improvements yet? I'm now losing weight rapidly. Brrr

 

[wigglethemouse]

Any improvements yet? I'm now losing weight rapidly. Brrr

@Grigor Have you tried any of the MCAS medications such as H1+H2 anti-histamines in combination, or Montelukast to lower Leukotrienes? Cromolyn sodium before meals helps some folks tolerate food better. Several folks on this thread found Gen1 prescription anti-histamines helped them tolerate food, when the Gen2 over the counter didn't work for them.

Unfortunately what works for one person with MCAS may not work for another, so treatment is trial and error.

Perhaps you could share the Afrin treatment options PDF document with your doctor that @Learner1 shared in her post on this thread here.
https://forums.phoenixrising.me/thr...t-tolerate-any-medications.77108/post-2219243

MCAS testing is probably difficult in your case as some samples need to be chilled or frozen immediately. But doctors can be referred to this Afrin paper where Figure 5 and the text following it detail the blood and Urine testing along with special handling instructions.
https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm
In Figure 5 see the last box "Additional MC mediator testing"
https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm#F5

 

[Grigor]

@wigglethemouse problem is I don't tolerate the smallest crumbs of medication. I tried them.... They all work. Also the POTS meds but have to stop because of the severe reactions. Ugh.

 

[wigglethemouse]

@wigglethemouse problem is I don't tolerate the smallest crumbs of medication. I tried them.... They all work. Also the POTS meds but have to stop because of the severe reactions. Ugh.

Is there a way you can get some of those meds compounded. Some folks have a corn and or milk allergy that affects so many medications and so they have to get the medication compounded with ingredients they tolerate. @Learner1 has posted many times about this subject such as in this post
https://forums.phoenixrising.me/threads/b-12-the-hidden-story.142/post-2208053

Have you tried cromolyn sodium? It's a mast cell stabiliser that mainly stays in the GUI tracts. It is a liquid rather than a pill, though very expensive if not covered.