Major Flare again! :(

jlbattin · Post by **jlbattin** » Sat Aug 17, 2019 8:52 pm

Ok, I've had histamine issues most of the summer that still haven't gone away. I still have an underlying rash on my arms that some days is worse than others. Thankfully, it doesn't itch. It sometimes feels like a sunburn. Earlier this week, I started with the D and today, it became full blown water D and I was running to the bathroom about 15-20 minutes after every meal or anything I put in my mouth. I haven't eaten anything different than I've been eating over the last 2-3 years and have been incredibly stable. The only thing I can attribute it to is my doctor gave my high dosages of prednisone and once I got that all out of my system, it seemed the diarrhea started (slowly at first, and then today, BAM!)

The only other thing that is different about this summer is I did get a pneumonia shot that laid me out for about 2-3 days. It made me not feel very good and I slept a lot. My doctor told me that was actually a good sign because that meant that it was doing its job. Of course, with my immune system, I had to wonder what I had done to myself.

Anyway, I have been incredibly stable and have no idea what this is about, but know it's every bit as bad as the first time around. Tomorrow morning, I do intend to start taking budesonide again. I did really well with it the first time around and am hoping it will do the trick this time again also. I have to get it under control as my summer is now over and I'm back in school. I can't be running to the bathroom every 15 minutes. I also plan to go back to my very safe foods for awhile and stop all supplements until stuff stops just going through me.

It happens to all of us I guess. Wish it was easier to figure out though.

Post by **tex** » Sun Aug 18, 2019 11:28 am

Hi Jari,

Sorry to hear you're in a flare. Since this happened right after you tapered off high doses of prednisone, I have a hunch that your relapse is the result of a mast cell rebound reaction in response to the (relatively fast) prednisone taper. The taper wouldn't have been too fast for a normal person, but we're not normal people. Consider how long most of us find it necessary to draw out the taper on a budesonide treatment in order to prevent a rebound reaction. Prednisone has a much stronger systemic cortisol effect than budesonide, and with your existing mast cell problems, that (relatively fast) taper probably caught your immune system at a very bad time (and so you had a mast cell rebound). At least that's my guess.

This may be tough to treat. I wonder if the standard treatment used by allergists to treat mastocytosis would be appropriate. They usually prescribe (at least they did the last time I checked) up to four antihistamine tablets/capsules per day, for several months if necessary.

Restarting a budesonide treatment is probably a good idea. That may allow you to skip the antihistamine treatment, if the budesonide begins to work relatively quickly (corticosteroids work mostly by reducing mast cell activity). Hopefully, you won't need to be on the full dose long, but be sure to draw out the taper.

At least those are my thoughts.

Tex

Janie · Post by **Janie** » Sun Aug 18, 2019 11:36 am

Hi Jari, so sorry to hear about the major flare. I have nothing new for you except I will keep you in my prayers. It took me for ever to get out of a flare from a raging head cold after my flu shot last October. :bouqueofpinkroses:

jlbattin · Post by **jlbattin** » Sun Aug 18, 2019 1:08 pm

Thanks Tex for your always helpful insights. I had actually wondered about that myself. I knew that it was such a high dose that stopping it like that would probably not be very helpful to my system. I just figured that I would do what I did at the very beginning and take it one day at a time. Start with a simple safe diet and try the budesonide again. It is what it is! It's a never ending viscious cycle!

Thanks Janie for your prayers. I'll take all I can get. This is such a complex disease! It takes all of us to figure things out!

Marcia K · Post by **Marcia K** » Tue Aug 20, 2019 7:00 pm

Hi, Jari. I'm so sorry that you're in a flare. Sending healing wishes to you and I hope you're back to normal soon. I think of you every time I use your chocolate recipe.

brandy · Post by **brandy** » Tue Aug 20, 2019 9:59 pm

Jari,

I am so sorry you are suffering and hopefully the budesonide kicks in soon.

jlbattin · Post by **jlbattin** » Fri Aug 23, 2019 11:11 am

Thanks Marcia and Brandy!

So, I took the Budesonide 9 mg for 3 days and then had to back off to 6 mg, which is where I am right now. It totally did the job again and quickly. I'll just work on tapering off very slowly again from here on out. My diet has been pretty clean for quite awhile now.

My rash, on the other hand, is NOT any better. I'm beginning to wonder now if it's some other skin condition (which I still believe was brought on by being in the hot tub for too long for 3 days in a row because that's when all HELL broke lose). I'm having some itching from time to time (sometimes worse than others) and it seems to be on other parts of my body now. With taking Budensonide and Benadryl so I can sleep at night, you would think it would be better than it is, but it's not. I did call my dermatologist this morning and of course, the soonest I can get in is a month from now and am on the wait list to call if there's an opening sooner. She's treated my lichen schlorosis (sp?) and she deals with lots of skin conditions so I'll just have to tough it out until I can see her and see what she says. In the meantime, I'm doing everything I know to do to cope with it! It gets pretty frustrating and nerve wracking at times. If I can stay busy, that helps.

Gotta love these auto immune diseases.

Hope everyone else is well!

brandy · Post by **brandy** » Fri Aug 23, 2019 11:34 am

Hi Jari,

There is a skin rash that is more common to those with gluten issues.

https://www.verywellhealth.com/dermatit ... tos-562325

Mom (celiac) used to get it when she swam laps at the pool.

jlbattin · Post by **jlbattin** » Fri Aug 23, 2019 11:43 am

That's really interesting, Brandy. I'll mention that to her. I'm not ingesting any gluten though so it's a real puzzle. At least not that I know of. It has the right areas of the body and some itching but more burning than anything. It's hard for me to tell. Mine doesn't look that severe as the pictures so hard to tell, but thanks for the heads up and info. I will certainly bring it up!

Marcia K · Post by **Marcia K** » Fri Aug 23, 2019 7:17 pm

So glad the Budesonide is working! I hope you're back to normal soon!

brandy · Post by **brandy** » Sat Aug 24, 2019 7:59 am

I think you can get that rash and not be ingesting any gluten. I think we are more susceptible to getting that rash.
Gluten probably makes it worse. I think Mom would get it just from swimming laps as she was already GF.

jlbattin · Post by **jlbattin** » Sun Aug 25, 2019 1:53 pm

Brandy,

That's a very interesting article. In reading it, it basically states on everything I've read is that the only way to get it to go into remission (or go away) is to stop eating gluten. I'm not eating any gluten that I'm aware of. I've been relatively stable. Do you know how long your mom's rash would last? I'm going on about 2 months now with this one.