I can be reached at bridget.mcgraw@gmail.com
UGH!
Seriously, my masto has been out of control lately. I've got some sort
of viral thing going on apparently (one of my lymph nodes is swollen
plus I have some fluid in my ear) and I'm guessing/hoping that is what
is exacerbating it?
Anyway, I'm undermedicated for my masto. Unfortunately, Dr. Castells
has been out of the office for ages and therefore not around for me to
do medical trials in her office (I have one scheduled for later this
week thankfully) but I've been dealing with the tachycardia, metallic
taste and general uneasiness for a few days now. It's really terrible.
Is this normal to go through? It's really dreadful and I get nervous
that this is progressing even though my tryptase level hasn't
budged..but of course in the back of my head I get worried that it's
somehow turning into aggressive or leukemia something.
Anyway, we want to add Singulair to my meds this week and I was
wondering how everyone has fared on that. I just feel like so often I
see, "well I was on ____ for a while until it caused *insert medical
issue here*" and I think I end up feeling discouraged before I even
start something since all the anecdotal stuff I read seems negative.
As it stands right now I'm taking:
200ml Gastrocrom 4x a day
150mg Zantac 1 or 2x a day (i'm bad with remembering this one)
1mg Ketotifen 1x a day
.25mg Klonopin 1x a day
50mg Atarax either 1 or 2x a day as needed (I'm not sure what the
ongoing status of this one is going to be for me, if I am going to
take it ongoing or if I'm only going to be taking it right now since
everything is acting up)
What else is there really that helps with symptoms? What else should I
be asking about in terms of things to add to my meds?
My PCP and Psychiatrist aren't too keen on Doxepin and want to talk to
Dr. Castells about it (though she hasn't returned their calls), but
would that also make sense right now? I just want things to settle
down again. I feel like I was faring really well before that stupid
car accident in Sept. and ever since then things have kind of been
chaotic. I wish we could keep some sort of ongoing statistical
database for how many people are on _____ and how much success they've
found with it...something like that would be super helpful.
Anyway, any and all help would be MUCH appreciated.
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Life with a chronic illness isn't all about spoons and complaining.
About Me
- Bridget
- I've been living with a rare neoplastic disease called Systemic Mastocytosis for a few years now. I want to use this space to detail my experiences with this illness, as well as to hopefully show other people suffering chronic illness that life does not have to be all about the "spoon theory" and limitations.
Links of Interest & More
- The Mastocytosis Society
- Mast Cell Disorders Forum
- Dr. Castells - My main Masto Dr.
- Patient Info
- My Mastocytosis Facebook Page
- National Organization of Rare Disorders - Mastocytosis
- Dr. T.C. Theoharides
- Kevin's Masto Blog
- Another Masto Blog - Great Links
- A Chronic Dose - A Chronic Ilness Blog
- Chronic Babe
- Low Histamine Diet - I Follow This
- Google Results on Mastocytosis
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10 comments:
i also have a virus/swollen glands, symptoms out of control...i know that doesn't help, but i feel at the end of my rope too...sorry....thanksfully heading to florida next week, where i always feel so much better...good luck
I"m not sure what one of those meds are, but it looks to me like you aren't taking very many anti-histamine type meds. I take allegra, zyrtec and singulair everyday. i started with just allegra and zyrtec for a few years and singular was added a few years later. i really didn't notice any issues. i also take atarax on an "as needed" basis like if i have an attack.
Good luck!
Melissa
I too only take atarax as needed. However sometimes the atarax seems help with the bone and joint pain when nothing else seems to touch it. Also i am sure the weather there is not helping your situation.Christmas and the hustling of the holiday season leaves all us in desperate need for some rest and recoup time. hang in there girl.
Hopefully I bring you some good news, and encouragement............ I'm so happy! My current meds are working a treat! for 5 months I've been having a once a month injection of "Xolair"...and I've not had more than 2 or 3 heart palpations/tachycardia in that whole time, whereas there was rarely a day when I wouldn't have at least 1 or 2 (every day!). no emergency trips to hospital!
My daily meds are:
am - 1xTelfast:1xVit.D:1xRanitadine
pm - 2xClaratyne:1xCaltrate:1xVit.D:1xRanitadine
So, these cover my anti-histamines, reflux, and osteoporosis.
Plus, the monthly Xolair.
This week my tests show that my tryptase levels seem to show a reduction. (They've been at 300 during an episode...and are down around 20 now.)So, that's all good news. I don't know if any of you have tried the Xolair treatment, if not, it may be a good idea to ask your doctor if it would be good for you.
Take care.
Hi all, I am new to this..I am a 42 yo old female with systematic masto. I was searching for anyone to talk to about this whole medication dilemma and I found you!! i have been on zyrtec,cimetidine and allegra for two years but it isn't working so well anymore.Going to immunologist tomorrow, just had a ton of bloodtests done. glad to find that this site exists. Thanks for letting me read all about this crazy disease..
I take 4 mg of ketotifen per day. I have been told that less than 4 per day has no effect. Personal experience supports this.
I also take ranitidine, allegra, hydroxyzine (as needed), Intal, Nexium, and naproxen. Get IV of Reclast 2x year from hematologist.
well, this is a ravishing disease...
i use atarax, zyrtec, singulair,
occaisional prednisone, triamicilone cream, xolair, peptobismol, and clonipin, cause this hives or whatever is making me nutz, then there's the anti virals, two different eyedrops, restasis works the best. atarax is fine to take, i use 75mg daily or i'm checking for spiders...so far no long term side affects from it. good luck!!!
My 2 cents. I'm taking Allegra, Singulair, which seemed to help in the beginning. Zantac 150 2x a day. A mulit-vitamin and Omega 3 supplement.
I did get off of Nexium because it makes my stomach hurt.
Finally, I'm taking 4mg of Albuterol in a pill format twice a day. I tried cutting it out because is doesn't make sense (to me that is), but I had multiple flair ups when I did. By the way, I don't have asthma ether and most people who use it, use it as an inhaler.
I'm not sure why I'm taking it, but it was prescribed by a doctor at the Mayo and when I later met with Dr. Butterfield he told me to keep taking it through my testing.
I don't like taking this much medicine, but my flair ups have become less serious and I haven't had to get back to the emergency room since.
I bought this medicine called Zantac, since I have this stomach ulcer, it relieves my stomach acidity. No adverse effects, I did follow the right directions and dose and what do you know it did a great job. Two thumbs up for this. I got the med online the site is www.medsheaven.com.
what works for me now.. 5mg prednosone, zyrtec 10mg, bi weekly injections Xolair three vials,(god send controlls the hives eye inflammation asthma and who knows whatelse) clonopin 1 or 2 mg, restasis 1 vial, peptobismol, 75 mg atarax, and norco for the bone pain,
some times it makes my nose itch, but worth it, valtrex when needed, i get bad headaches, so imitrex for that. good luck to everyone, cause this is scary, i keep epipen for shocks. not alot to eat any more that doesnt make me sick.
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