Have any of you taken the drug periactin?  My local doctor has mentioned this drug to me several times.  I had not heard of it before but did do some research on it.  The side effects concern me.

Any ideas or experience???

Thanks much!  Lynda

Thanks for your input Joan.  What concerned me about the Periactin was that one of it's "benefits" is helping with REAM sleep (hope I have that correct as I didn't look it up again).  But it states you need to have time to sleep for about 10 hours....sounds like a "stupor" to me.  
I also see it is used to help with weight gain...and can cause extreme hunger.  (EEKS....I really like the new clothes I bought!) haaa  
Just a bit nervous about it.

Yes, I have heard of doxepin.  That was one of Dr. Afrin's suggestions.  It had also been suggested by a nurse that I know really well.  Since I still am not on any H1 blocker I think it is a good idea.  Sometimes it is hard to know if these decisions need to be made "just" between the two doctors or not.  I don't have another appointment until the end of Jan. so I have time to do more questioning before I need to start the "next" thing.

They did the IV Benedryl "trial" on Thursday. (I made sure it didn't have any preservatives....thank you for that advice!)  They gave me 1 mg. to start with...did ok.  Then 15 minutes later gave me 5 mg.  Ten minutes into it my BP skyrocketed and so did my pulse., chest got tight and started shaking all over.  They waited 1/2 hour and tried again with the same results.  I guess Benedryl will be crossed off my "help" list.     I am sure glad I refused it in the ER a few weeks ago...it could have been a disaster.  They could have given me ten times that amount!

Thanks again for your help!     Hugs...Lynda

If doxepin becomes a true option for you, be aware of the risk of seritonin syndrome. I take doxepin and my local doc put me on a pain killer that seriously increased my risk of this seritonin syndrome. Had I not inquired about it to the pharmacist when I was getting it filled, I would not have known any different and just taken it. The pharmacists suggested I cut back my doxepin if I wanted to take the pain med. I did and was ok. I've stopped taken the pain med now and I'm back up to 100 mg doxepin before bed.

Kim

Thanks Joan.  You always know the right thing to say.  You mentioned you have taken many different antihistamines over the years.  May I ask why you made a change with some of them?  Or do you know your system so well that you know WHAT to take when you start to have certain symptoms? If you feel your symptoms are under control, do you cut back or stop some of your meds? Do you know if there is any studies that have been done as far as having to increase a persons meds because the body becomes "used to" them?  

I can feel that I need to add more (I am sure an H1 blocker) but I am so grateful that the cromolyn is helping.  I am only up to 1 vial a day...but I haven't lost any weight in 2 weeks!  YEA....  I can only eat my "six safe foods" but that is ok!  I am so glad you told me to just take a VERY small amount to start with.  That is the key!  

Hi Kim,  Can you explain the seritonin syndrome more?  I can look it up too.... what makes it increase in risk when you add a pain killer?  So when you cut back on your pain med, does the doxepin help keep your pain under control?  (I hope so!)

Hi goldie...I agree with you about our bodies reacting to just about anything and EVERYTHING.  I can remember Kathy (Dr. A's ) nurse saying that when we start new meds, many times they will aggravate our mast cells.  You are right, then they behave badly!  Sometimes I find it VERY confusing to decipher between what is a reaction and what is a mast cell flare.  hummmmmm    Maybe for us, it is one in the same!

When I read the pharmacist information that came with the cromolyn it stated something to the effect of: "this drug may cause you to have some of the same symptoms that you have with your disease".  I think they are trying to say that the meds may cause our mast cells to become agitated.  Just my opinion.  I was glad I read that or I think I would have given up on it before I really tried to take it slow and stick with it!

Thank you... to each of you for all of your input.  Everything we learn as we go helps soooo much!

Hugs, Lynda

When an MC disorder patient is having a flare-up of symptoms, the way to get it stabilized is to increase medications until the symptoms are again under control.  That can mean increasing dosages or adding additional meds, for a period of time, that wouldn't normally be taken daily.  (In the case of a newly diagnosed person, this would mean finding out what helps things calm down, including both the level of medicines and lifestyle changes that bring relief of symptoms.)

At the same time, diet may need to be more restricted, as well as eliminating stressful activities, emotional situations, and physical demands.  All those things can fuel a flare.  Sometimes I jokingly call it time "Couch Therapy," that is, lie on a couch until feeling better.

Many things can initiate a flare-up, some in most patients, but others may be unique to individuals.  I, e.g., happen to be allergic to mold, and it is one of my biggest triggers for a flare.  For others it might be a food or heat or a number of factors.

As time goes on, if you pay close attention to your body, you'll figure out and notice your own unique set of early warning signs.  If you heed these and take the necessary steps, you'll find you are able to stop a flare much earlier, which is also much easier than when you're in a critical situation.

I haven't heard that people's bodies get used to their antihistamines very often, in the sense that the meds don't work well anymore.  Our bodies can adjust to a medicine, meaning that they can tolerate increased doses, but that also brings increased symptom relief and increased stability.