Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> question http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1326055013 Message started by gutless_mystery on 01/08/12 at 08:36:53

Title: question
Post by gutless_mystery on 01/08/12 at 08:36:53

Has anyone ever just quit taking meds daily? I feel so lousy on my meds and continue to have anaphylaxis even while on all these meds so why even bother taking them? Sometimes I think the meds just make me feel worse and I will continue to have anaphylaxis with or without the meds. Pretty sure I'm willing to see what happens if I stop, but wondering if any of you ever have done this before.

Title: Re: question
Post by Anaphylaxing on 01/08/12 at 17:32:20

I've thought about it daily let me tell you but what I have learned after much struggling is to only change ONE thing at a time to avoid MEGA confusion. So now I am tapering off one med at time. First steroids.

Next other meds graduallly.

But it is SOOoooo frustrating and I too wonder how many ill effects are from the meds themselves. 8-)

Title: Re: question
Post by Joan on 01/08/12 at 18:14:44

I understand how you feel, but I'd urge you not to go off them yet. As I remember, I thought you might not be on enough medicine to control mast cell symptoms. Didn't you just see the Boston docs and get some new meds to try or a new regimen of the same meds? Aren't they still testing you for some things, too? Patience is difficult when it doesn't seem like things are working, but being under-medicated might be causing your problems.

Cold turkey is not a good idea with mast cell stabilizing and antihistamine meds. I can't remember what you're taking, but I think it was a long list! First of all, talk with your doctor about your feeling that some of the meds might be making you feel worse. See if an increase is needed or an adjustment or additional dose(s).

Ana gave you good advice about only changing one med at a time. It can be so confusing otherwise as well as counter-productive. If the doc doesn't want you to go off anything, maybe you could add an alternative to one medicine as you reduce another one.

Try to hang in there at least until your testing is complete and Dr. Akin gives you the final word about what's going on. If you can't get any help from your local doc, don't be shy about calling Dr. Akin's office and telling them how you're still feeling bad and see what they'll recommend. Sorry in advance f I'm not remembering your situation correctly....