What Is Your Treatment For Mcad?

[julieph85]

My docs feel pretty certain I've got a mast cell situation effecting my pots because I have a very high 24 hour urine histamine. He prescribed me Clarinex and Pepcid. He also wants me to take Ketotifen. Has anyone also taken these drugs or others? Does it improve your pots? Thanks!

[Christy_D]

My son takes Clariton (10 mg 2x day) and Pepcid (40 mg 2x day). So far not helping. We stopped the aspirin therapy, wasn't helping and he had side effects. We will be seeing Dr Afrin again next Monday, so I'm sure something else will be tried. He said there is a very long list of things to try and could take quite awhile to find the right medication.

My son has also taken Doxepin for almost 3 years now, it has antihistamine in it. That is prescribed for POTS and MCAS. It has been helpful, when he stopped taking it to try other meds he got even worse so we know it has some effect on him. It doesn't help on a low dose for him though; he takes 125 mg right now. It was most effective at 175 mg but then it abruptly stopped.

Christy

[HyperPOTS8]

Christy, I wonder whether doxepin could be helping in some ways but it also could be making your son's POTS worse since it is a tricyclic antidepressant which is one of the class of meds to avoid in POTS since it can worsen orthostatic intolerance (see home page, things to avoid). Just something to consider.

[Christy_D]

HyperPOTS8,

At one point we pulled all medications and started from scratch. Without the doxepin he did so much worse, so I do think it is helping. When he started taking it some symptoms stopped and did not return (ie-licorice legs, heavy head). Also for a 6 week period right when we upped the dose to 175 mg he was doing awesome, even able to attend school for 4 classes a day. Unfortunately it abruptly stopped working. His original doctors in Cleveland (Dr Chelimsky) was the one to prescribe it and he is a autonomic specialist. The main symptom we are battling is nausea, his dizziness is pretty much under control.

Thanks for your input!

Christy

[jpjd59]

Christy:

So sorry to hear that your son is still struggling to find a treatment that will help him.

We are also having the same kind of problem so I know how frustrating it is. It is suspected that my daughter also has mast cell issues so she was started on a tiny bit of Claritin (because she is so sensitive to meds). The first few days we actually saw some improvement in her POTS symptoms and we were so hopeful that this was the answer. However, on day three the bad reactions that she has had with other antihistamines happened and she had to stop taking the Claritin.

At least it gave us some hope that we are headed in the right direction and hoping to find a med for mast cell that she can tolerate.

Good luck!

Pam

[Christy_D]

Pam,

That is great she had a positive response from the anti histamine as short lived as it was. Hopefully finding the right combination/brand of medications won't take too long. It is so frustrating when they can take one step forward and then have to go back again.

Christy

[jpjd59]

Yes, she is frustrated because it has been soooo long since she has felt well. Hopefully we will get an answer soon.

Pam

[anaphylaxing]

A mix of H1 and H2 blockers and mast cell stabilizers are the usual treatment. Sometimes antileukotrienes and a few other options as well.

I am on Zantac (H2), Cetirizine (H1), Ketotifen (H1 and MCS), Singuliar (leukotriene), and Cromolyn sodium (MCS). These are often needed at higher than the usual doses.

Hope you see improvement.

[issie]

I use claritin - lately two times a day. And if needed Zantac 1/2 tab. I also use NasalCrom. I use quercetin, vitamin C, B-complex and a few herbals - if needed. If things are really bad, I will take a Bendryl - but, I know it will give me horrible tremors. So, I have to decide which is worse the attack or tremors. I have some ketofin eye drops too - but, don't use those often. I have an epi-pen if all else fails.

Issie