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
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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