Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Flare out of nowhere! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1350652522 Message started by texan1960 on 10/19/12 at 02:15:22

Title: Flare out of nowhere!
Post by texan1960 on 10/19/12 at 02:15:22

Was going pretty darn good for several months on the Neuroprotek and then BAM a huge flare this week, I think due to stress. I have been taking a zyrtec and two zantac in the am and pm and filling in with benedryl etc. I am stumped and exhausted and just want it to be over! Sorry for the rant! Should I be adding in a middle of the day dose of zyertc and zantac? I always get worse in the afternoon.

Tex

Title: Re: Flare out of nowhere!
Post by Anaphylaxing on 10/19/12 at 11:30:02

Sorry to hear this!

Have you and your doc ever discussed adding a mast cell stabilizer like cromolyn or ketotifen?

I know when I was bad I was taking a zyrtec equivalent 3-4 times/day; not sure if it helped or not. Upping my zantac never seemed to make a difference for me. I also take the mast cell stabilizers and singulair.

We're all so different though so can be hard to figure out what works

Title: Re: Flare out of nowhere!
Post by texan1960 on 10/20/12 at 07:50:49

Thanks Ana... Yes I did 2 trials of cromolyn and had horrid GI probs. I want to try ketotifen...was having great success on neuroprotek. I woke up today w a really bad sore throat so this flare could have been my body fighting it off... I always flare before getting sick. Gonna ask dr about ketotifen.

Title: Re: Flare out of nowhere!
Post by Anaphylaxing on 10/20/12 at 12:34:26

Sorry about the sore throat, but you're right that likely explains it!

Too bad about the gastrocrom.

So glad the neuroprotek is helping! I have not tried that.

Title: Re: Flare out of nowhere!
Post by DeborahW, Founder on 10/21/12 at 02:01:13

You could always try adding an allegra or singulair to your mix. Those are also commonly used. If you wree doing well until now, there isn't any reason to get down about it. Sounds as if you are overall doing better than most. We all have a few bad days. For the most part, I am really good. I always have mild symptoms throughout the day, but no big deal. I can easily ignore them; I just don't feel as good as my "normal" friends. Then sometimes, I will just do to much (even fun stress can get ya!), and I get sick. It's only for a day or 2, and then I am fine. I feel that I am really lucky to be this stable! So, if you are like me, then it's just a matter of perspective. Add some meds if you aren't getting better and try to find that golden lining, such as you could be worse!

Once in a blue moon, I will get really ticked off for a couple minutes that I can't ever feel full of energy and amazing. Feeling good has a different definition for me, though, now, and I am lucky to feel as I do and have the semblence (to others) that I lead a normal life. They don't know that I might feel a bit blech, but I just deal with it and enjoy what I am doing. Now, I will say that I first got ill when I was 29 and I am 45 now. I didn't have anyone figure out what was wrong with me until I was about 36, so that was a long time to be without meds shocking all the time and have docs have no clue! Once I knew what was wrong with me, I was darned MAD and SAD at the same time. I had all the feelings of it's no fair, etc. Of course, it's not fair, but I realized that is what everyone with a disease says and at least mine is not fatal! (Okay, every anaphylactic attack could be fatal, but I am aware and no how to prevent them), so overall, no worries. I actually have it better than some of those more common diseases that are fatal! So, I have had a long time to handle this stupid disease, and I just take it in stride now and pay attention to all the good points in my life. The key to handling it is first finding the right medication combo and knowing how to prevent and handle symptoms. You can do it!

Title: Re: Flare out of nowhere!
Post by texan1960 on 10/21/12 at 06:04:47

Thanks for the words of encouragement! I am generally a positive outlook person...just a painful bump in road! Had this for 12 years raised a family and still work fulltime sometimes hangin on by my fingernails! Singulair Allegra and Cromolyn have their way with my GI so to speak so I would like to try ketotifen. Neuroprotek had a very calming effect on my GI ...I am going to stick with it but still want to try ketotifen. Deb I am much like you in that I am pretty functional most days... Even travelled to Canadian Rockies this summer which was awesome. When I do flare I get a bit disoriented and down, neuropathic pain, and IC flare .. I don't shock, but it is unpleasant nevertheless. With the meds and avoidance its less often and I do recover faster for sure. This board has really helped me figure out new options to try! Plus support when I have a puny day like the other day :o