Hi Jane!   Welcome to the forum.  I´m sorry that you had to come back.  But I´m glad that if you are needing help you felt free to return.  That´s good.

Jane, your not taking the meds didn´t and can´t make your masto progress, it doesn´t work that way.  Taking the meds won´t stop it´s progression either.  What taking those meds do is give us stability and if you are of the autoimmune form, that stability is important for the less you react, the less your system acts up and reacts to it´s own self.   But we all can get into flares and also get out of them and this is what I think is happening with you.  The period that things had calmed down was where you had managed some stability, but by being off the meds, whatever it was that rocked the boat came around and put you back into another flare.   That´s all.  Your masto has not progressed Jane.  One thing Dr. Castells emphasizes is that the symptoms are NOT indicators as to the severity of the disease.  You must try to ignore the symptoms in that aspect.   If you tryptase isn´t yet above 20 then your masto is not severe enough to even diagnose SM, which is a more severe form of a mast cell disorder.   The severity of the sisease is judged by our CBCs, BMBs and tryptase levels.   This is how you know how much your masto has progressed.

If your doctor isn´t looking like this  when you see him, and is only looking like this then you should look like this .

I hope this helps!

Lisa

When you say cbc...what abnormalties are you looking at?  low  or high numbers?

also, just because the tryptase numbers are "normal" does it mean it can't affect our liver and other systems?  My tryptase is wnl but my liver numbers are high and  my cbc's are never normal, but always on the high end.  I'm not anemic.   Just wondering.

To the best of my knowledge, the CBCs would be showing anemia, for Systemic masto invades the marrow and thus crowds out other cells, that being the red blood cells being the most important.  I'm not sure what it would do with the platelets or with the leucocytes, but I believe they'd be low as well.   I've shown a bit of anemia at times and low white blood cells as well, but usually I'm in normal ranges.    But then, I honestly can't tell you what the exact danger signs would be with masto, but one thing I'm sure of, anything way high or way low is going to make your doctor jump.  It's the close to normal readings that they don't get too concerned about for it's normal to have fluctuations with your red and white blood counts.  So, as long as you're not way above normal or way below normal, don't freak.  

As to the liver and normal tryptase.   MCAS patients have indeed been found to have liver problems.   I have an article based upon this finding and if anyone wants a copy, it's just a matter of sending me your email and telling me what you want and I'll send the copy of it.

Lisa

Jane,

I understand the panic, but you don't seem to be properly medicated!  Since the antihistamines are over the counter, it's within your power to adjust these and that is what I would suggest.   I'm not a doctor and each of us has such different systems, but when I get into trouble, this is what I do for myself for I've learned that although I've got my doctor who has established for me a set regimine, she and my other doctors recognize that I have no other choice but to step in with more antihistamines at times.  

I'm on allegra 180mg 2x/day
Ranitdine 300mg 2x/day
Singulair 10mg 2x/day
Ketotifen 6mg 1x/day

When I get into trouble I will take extras of both allegra and ranitidine - usually allegra since it is my most reliable medication.  yet, if I'm having loads of diarrhea then I'll hit in with that since it has a stronger focus on the gastric/intestinal issues.

I take these meds at 6am and then again at 6pm and this will fluctuate on some days when I have more activity then I will move up my evening dose to as early as 4:30 at times.  

I hope this helps!


Lisa

I'm afraid so, Jane, yes.    Singulair has made an amazing difference for both me and Heather.  It's brought to the both of us STABILITY and ENERGY!!   I have had an impressive improvement due to taking singulair and it would be a great help to you, I think.  

It may be, however, that you don't tolerate it.  Unfortunately that is a possibility, but you won't know that until after you begin taking it.  

Definitely talk with your doctors about these meds for Ketotifen is a MC stabilizer and VERY IMPORTANT for calming down those mast cells.

Lisa

what about gastrocom? is that like ketotifen? can i get that without presciption?

Jane, try taking 300mg of zantac twice daily(600mg). Thats what many of us have to take. Here is the meds I take....
Zyrtec am 10mg
Fibromyalgia meds AM
Thyriod meds AM
Zantac twice daily 300mg
Ketotifen 1mg 4 times a day
Prilosec 20mg

Now, sometimes I take up to 30mg of zyrtec of day, also I take liquid benadryl as needed. I have added singular and allegra before but they didn't seem to help me. It's different for everyone. Some of us have better results with different meds.
I do think a mast cell stabilzer would be a great thing for you. I used to take cromolyn soduim(mast cell stabilzer). It is a compounded prescription  but over time I felt like it was working as well. So I stopped it and went to ketotifen which I really like, it is also a mast cell stabilizer as well as an antihistamine, you need a prescription and in the US it is only available when compounded. There are several pharmacies that will fill it and mail it to you. The one I use is Clark's in Bellevue, Wa. I would print off info on ketotifen and tell your doc some women you know that have the same symptoms use it and have had good results. It's worth a try. I would also ask about maybe some prednisone to quiet your immune system down. I had to take it this summer when I was flaring and finally I got the doc to give me more than a six day supply and I had to take them for 3 weeks and slowly tapper off till my symptoms became better and you know what it worked. By this time it was my fourth or fifth course of prednisone. I'm finding stress is huge for me too. I'll pray for you, hope things get better for you.
Melissa