Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Signup for free on our forum and benefit from new features!
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
I need help with the new medications (Read 2672 times)
Gloria
Rookie
*
Offline


I Love YaBB 2!
Posts: 2

I need help with the new medications
04/03/12 at 00:35:48
 
Good morning from NY  My name is Gloria and I am tired of being sick.  I recently went to vosit Dr's castells & Greenberger and was told that I have Systemic Mastocytosis.  I started the usual medicines (gastrocrom,ranididine,colestipol, claritin redi tabs & allegra.  Something is making me sicker than I was before.  I have tried repeatedly calling up to Boston & they told me to keep taking everything in the proper progression and "give it time".  After another call I was told to go to the emergency room, which I did.  I got the usual "I am sorry I don't know how to treat you".  The welting & flushing are better but my stomach is KILLING me.  I am wondering if anyone else has had these symptoms and if so what made them better.  Please help me!!
Back to top
 
 
IP Logged
 
Sunny
Rookie
*
Offline


I Love YaBB 2!
Posts: 16

Re: I need help with the new medications
Reply #1 - 04/03/12 at 03:58:52
 
I am sorry that you are feeling so sick.  Have you had any testing for your stomach issues - upper GI, colonoscopy?  Sometimes there are other issues besides Mast Cell problems.  I am definitely not one of the experts on this forum,  but I think a consult with a gastro doctor would be in order.
Back to top
 
 
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: I need help with the new medications
Reply #2 - 04/03/12 at 05:34:16
 
No, it sounds like one of the meds. I don't take most of those meds, but many report that with gastrocrom they seem to get worse before getting better. I would like to hear from some of the members who do take gastrocrom to hear about their experiences with it.

I would say that you do not need a GI because clearly you developed this after starting these meds. Plus most docs don't know SM and will lead you astray.   Are you being super careful with what you eat and drink? That is crucial right now to avoid sabotaging your efforts with the meds.
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: I need help with the new medications
Reply #3 - 04/03/12 at 08:53:34
 
I agree with Debbie.

Also, when you've started several medicines at the same time, it's hard to sort out which might be causing your problem.  Sometimes it's better to start one medicine at a time, for a day or two, to make sure there aren't side effects or reactions.  I wasn't familiar with Colestipol, but I did see that side effects can be constipation, abdominal pain, cramps, diarrhea, and more.  If you think that might be the culprit, ask your docs about it.

With Gastrocrom, some people have fewer side effects if they start with a lower dose and work up over a week or more.  (I started with 1/4 vial and worked up to a therapeutic dose.)

At first it can cause nausea and stomach pain in some people.  Mixing it with more than the recommended amount of water and/or sipping it over an hour or more might help.  My GI doctor said I could take it with food.  I try not to, but sometimes do.  If my stomach is particularly irritated, and the Gastrocrom begins to cause symptoms, I'll drink another glass of water, and that seems to take care of the problem.

Back to top
 


Joan
 
IP Logged
 
Riverwn
FORUM MODERATOR/ADVISOR
*******
Offline



Posts: 993
Gainesville, Florida
Re: I need help with the new medications
Reply #4 - 04/03/12 at 16:49:30
 
The advice youve been given is right on track, I am on GastroCrom and it did make me sick before I got used to it..Im still not on it at 100% but Im getting there slowly. Are you on Zantac (ranitidine)  300mg twice a day? Thats what most of us require to get stable. Here is my two cents lol...

Stay on your other meds but stop the GastroCrom for a few days and give the other meds a chance to get you stable. When you start your GastroCrom, usually the prescription will say two ampules 3 to 4 times a day--thats too much for a beginner.. try one ampule twice a day in 8 ounces of water.. slowly. After you go a few weeks and are ok, then increase it to 3 times a day.. and so on until you are at the dose the DR wants you to be on.

Keep Phenergan and/or Zofran near you until this tummy problem passes to make you feel better (for nausea and vomiting) Call Dr Castells nurse and ask her about this ok?? Hope you feel better soon.
Hugs
Ramona
Back to top
 

~~~Count  Your Blessings!~~~
 
IP Logged
 
lynda51
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 152
WI
Re: I need help with the new medications
Reply #5 - 04/03/12 at 18:19:47
 
I am so sorry to hear you are feeling so awful Gloria.  We have all been there and it is rough until we understand what triggers us and what our bodies can and cannot handle.  And to do all of this when we feel so sick makes it even more difficult.

I hope I am not speaking out of turn here....I am still very new at this. But.......here goes....

I am assuming you did NOT start ALL of the medications you gave below at one time, did you????  I know personally, the medications you listed, I have had severe enough reactions to each of them that I can not take any one of them (claritan, Zantac, or Allegra).  I had trouble with fillers in them, dyes in them, the lactose monohydrate in them.....each one of us are SOOOOO different that we react to sooo many things that others don't react to!

On the other hand, if those medications were already established, then it certainly could be the cromolyn that is causing you to feel so awful.  

It took me 4 months to get up to 3 vials of cromolyn a day!!  I am still working on the vial no. 4 and Dr. Afrin wants me to increase it to 6-8 vials a day.

I think Ramona has a good thought, stop the cromolyn and see if you stabilize.  If you were on all of the h1 and h2 blockers before you started the cromolyn and had no problems, then I would give my body a break before trying to start the cromolyn again. (Joan's suggestion is a good one, she is the one who helped me, or I surely would have given up). I started by mixing one vial in 16 oz. of water and ONLY took ONE tablespoon every hour...and I did this for 3 or 4 days before I added more.  Then I put ONE vial in a water bottle (which is usually 16 oz.) and sipped it periodically throughout the day.  (Every time I took a sip I got dizzy). I still am not able to take it in the morning before I eat....I get super dizzy and nauseated.  So I start it close to lunch time and continue to drink it throughout the day into the evening.  When I asked Dr. Afrin about doing it that way he said to take it whatever way that I could tolerate it best, we are all so different.  The specific "regiment" can come later.

I think we often forget, that because we REACT TO ALMOST EVERYTHING.....it is certainly plausible that we would react to the medications that should be helping us and that shouldn't be making our symptoms worse???  Right??  BUT they are invading our bodies and "stirring up or mast cells too!". I think the key to all of this is to DO IT SLOWLY and as Joan always says, "baby steps lead to more progress than Big Steps do."

If you weren't on the other h1 and h2 blockers before, I would talk to your doctor and see if you could change one (change Claritan for Zyrtec for example)...Deb is a good resource for these issues.  I know since I couldn't take Zantac, I use Pepcid.  Wow...after 40 mg. of Pepcid my horrible stomach pain was completely gone in about 15-20 minutes.  But again.....we are all different and what is good for one of us may not be good for another.  I think we need to experiment and try to find the best combination for ourselves (within the limits our doctors give us of course).

I hope this somehow helps and my rambling after midnight makes some sense.   Wink

Please take care and let us know how you are doing.  

Hugs to you, Lynda

p.s. Do you feel you are being careful enough as far as the levels of histamine in the foods you eat?  I know food is my biggest trigger and I am still extremely limited in my diet.  When my mast cells have to deal with food AND meds, it almost seems like it is just to much at one time and my symptoms just explode!  Lips Sealed    I know I have to spread them out.  Just a thought...........
Back to top
 
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print