I cant take Doxepin because I have low Seritonon levels--and it wont work for me, just makes me depressed..BUT  it does help people who have high Seritonen levels...

I havent tried Gleevac but I know its a med that is certainly never given lightly because of some pretty bad side effects (possibly)... Just stay in close contact with your dr if anthing should appear unusual for you.

Now that Zoftan? I think you just had a reverse reaction to it--and you shouldnt take it,, But I will say that I have it (havent needed it yet) and Ive had many patients who have had it and done good with it. Its more expensive than phenergan so they dont give it often..

again we are just so individual as patients, what one cant take, another will do good on--I am so thankful that you take new meds for the first time with medical people there!! Smart move.
Hope you feel better soon,
Ramona

pdl:
I hope you are doing better...did I recall that you are taking Elmiron?  I have had IC for over 10 years and took Elmiron for a couple of those. Unfortunately, it did not help me, but as I remember, it can in some cases cause liver issues (my uro discussed periodic liver panel testing when taking it). It also upset my tummy something fierce but I stuck in out in the hope it would work for me. Don't be discouraged by my result, some have had great success with it, but I only mention these things because it can have tummy and liver side effects.   Good luck!

So sorry you've had such a horrible problem!

I found doxepin helpful, but I did have some tiredness at first.  If you feel better on it, it might be worth staying with at least until your stomach has a chance to heal more.  It's both an H1 and H2 histamine blocker, so is very valuable for masto.  It was the first drug, besides benadryl, that I tried, and it didn't take long for my symptoms to get better.  I hope it works for you!

I can take Zofran, but it's just so individual!  There must be some anti-nausea drugs that are in a different class from Zofran that you might be able to take.  I wonder about Carafate or similar.  It's an ulcer medicine, but might be something to ask your doctor about if your stomach is that raw.   Hope you find some relief.  I agree about the water!

Hi sandi ,

I so sorry you ahve been so poorly xxx I am glad your home .

Zofron - Ondansatron , is a new antiemetic . designed for chemical sickness from chemotherapy . Its a good drug . The only patient I nursed with anaphylaxis from a drug was from zofron . This was in a lady like us ( a triggerer )

I tolerate it . I don't tolerate maxalon ( metroclopamide ) it causes my bowel to swell . My fave anti emetic is cyclizine ( marezine ?? ) 50mg orally . It is a H1 so I get benifit in 2 ways. I ahve it 1-3 times a day . It is a drowsy anti emetic . I only get drowsy if I don't need the anti histamine side . The brand here valiod , is corn and colouring and flavour free .

I love the IBS crapola xxxxxxxxxxxxxxxxxx sums up exactly how i feel about it xxxxxx

many hugs
Josie

Hi Guys,
Thanks for all the thoughts and prayers.  I have been laying low for awhile.  Still very tired.  The nexium and zantac seem to be helping.  I had to reduce the dose of Doxepin to just 25mg at night.  It gives me really vivid nightmares even on this dose. At 25mg 3 times a day, I could not function.  It is the most sedating drug I have ever taken.  It was also making my mood weird. The good news is that I do not have hives for the first time in months.  Not sure which is helping it, the nexium or the doxepin!  I am going to try some of the other anti nausea meds you all suggested but I think I am going to fill the script and take it to the doctors appointment and try it there in case something happens again.  I was also wondering about the Elmiron giving me the liver damage.  The onco said I could begin it again but I said no thanks.  We can try another IC drug later.  I just need a break!  The onco thinks the Celebrex triggered a flare and damaged my liver, the other doctors think it was all the aspirin 8 (325mg) a day.  I have slowly started the aspirin again and am getting my liver tested again on Friday.  It was at 293 a couple of days ago so it still has a ways to go.  Hopefully it will not go up again, otherwise it may be the aspirin.  I hate not to take the aspirin, it really has helped my syncope a great deal.  The onco also wants me to start Gleevec the end of March.  I keep digging my heels in.  I am just not sure I want to go on and stay on it, yet.  As for the vertigo and stuff, I have tried Meclizine for some reason it makes my rocky feeling worse...which doesn't make sense, it should do just the opposite.  This disease makes us react so strangely.  Also, I wanted to check and see if anyone has taken Serc or Betahistine?  They say it is like an H3 from what I have ready.  I was wondering if it will help or sort of do the same thing as Meclizine.  Thanks again guys, for all your help!

Hi PDL ,

I am glad to hear you are feeling a little better .

Cyclizine will make the rocking feel worse . Now I know its vertigo :- could it be histamine dizzyness ??? as I ahve had that feeling of rocking and it has been , for me , neck swelling .

For vertigo - procholorperazine is very useful - compazine . i don't know if you have tried this . When I ahve histamine headaches the vertigo is helped majorly by this . Bets histine is a very good next step . i dont know how it is saftey wise with mast cell disease . Ramona ???  But it is a very good vertigo drug.  

You will miss feel it if you miss doses but as long as you stick with it , youll be fine .

Liver wise , you need them to keep an eye on you INR ( international normalised ratio , which is a marker of blood thinning . The liver is heavily involoved in this and it can be up ( greater than 2 ) with liver damage . It can easily be rectified with vitamin K .

Also watch yourself for bleeding as with asprin on top , which you need and with a normal INR is absolutely fine , you would be at sightly higher risk .

I know your vertigo is established but dont assume all dizzyness is that

I go yellow in the days post a big reaction , so far my liver meds have been ok , apart from when i reacted to CT contrast ( lots of adrenaline ). I shouldn't of had it . I know now

Elimron , also has a slight risk of increased bleeding . I am reading the doctors prescribing information to try and clarfy the risk , if any for you .

What is it about gleevac that is concerning you ?? I feel I would see it as a very strong drug and would see it as my last option and would leave it as long as possible , so I had the option . I held some difflican in the house for 2 weeks , whilst needing it for rampaging thrush , because I was worried . i couldn't tell you why . Then I saw that others here have had it and I felt better . I kind of needed reassurance it was the right decision to make . I have been through it too . When I have been at my sickest I cant trust my own judgement ( just too pporly ). That makes choices on new drugs very hard as I have to trust the doctor one million percent that they will not just give it but watch me properly . What has been your experience before with how they watch and care for you ????  xxxxxxxxxxxxxxxxxxxxxxxxx

The other thing for me was i just needed a break . i was haveing monthly shock and infections , operations on top . i was mentally exhausted but also physically . To the point I didn't want to put my body through any more .

My question is always , will it help ??? I felt nervous starting singulair m becasue I knew how much it should help and I really wanted it to for me . I knew if it didn't , I'd only have gastrocrom left and that seriously scared me  . Singulair is helping so much and I am now ready to go for gastrocrom ( just need my doc to go for it ) , I am just aware of how it is going to make me feel but the benifits , once I am settled , will be worth it xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

many hugs , focus on recovering I dont know if you needed adrenaline . But it takes me a week to recover for every dose So I have to let myself be , for several days in bed , and gradually doing a little more each day xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

hugs x millions
Josie

Hi PDL ,

Many hugs xxx Ill read the prescribing information and see . I am at the point that i need gastrocrom now , so I am taking the plunge xxx I am ready . How long have you been diagnosed ????  

your docs seem very on the ball and will help . If they see it as a necessity then they will tell you xxxxxx for now you can think about things  Asking them about what you have heard will help you explain why you are worried . I used to feel silly , now i dont care as its my health decisions and id rather ask xxxxxxx When i was shocking frequently ( every 3 weeks ) I was sooooooo scared xxxx Now I know the epi pen works and i will be ok have you ever epi pened ????????????

If you want to get it off to someone far away but who understands you can pm me if it feels easier than saying it in the public way xxxxxxxxxxxxxxxxxxxxxxx  Regard the bad bits , i have heard the same at times  and had to pick it over a bit to suss how important other reports are

The rocking , urrgghh , yes explaining it can be soooo hard . Have you been checked for an ear infection . i would hope so with having been in hospital but sometimes the very obvious is missed . any infections sets me up for reactions . So your bad time with meds may have been just waiting .

Many hugs ,
Josie xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Maybe a thread on here would help ??