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sick of this! (Read 13531 times)
missybean
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Re: sick of this!
Reply #15 - 08/01/11 at 05:13:56
 
Ramona, I would totally see a mast cell specialist but there are none here in washington state. There is a mast cell researcher at the university of washington but I don't think he takes patients. Right now it's just too much for me to travel to Boston.
My current allergist has a few masto patients so he at least has some understanding and I really like him and he believes me when I telling him things which is a breath of fresh air.

Joan- I have been on 3 courses of prednisone in the past 2 months and the first 2 times it seemed the hives just wouldn't go away. Maybe the dose was too low. 40mg a day and then weaned off. I don't wanna have to keep taking prednisone, while it definetly helps my joints. Diabetes runs in my family and I already have insulin resistance. I wanna avoid that as much as possible. I really thought I was taking so much medicine how can I possibly still be having hives and joint pain? But I now know that really I can safely take much more histamines even though I hate it. I'm sooooo dried out. I'm pretty irritable too.
As far as the plaquenil and methotrexate, many doctors will prescribe it for chronic hives or things like psoriasis. My mom was prescribed it for psoriasis and it worked really well for her. So for me, I was relieved to know that if the prednisone isn't helping that I have other options. But for now, I have incresed anithistamines and have been keeping a journal of what I eat. My diet is pretty clean thats why I was really frustrated. But things change and I could have a new trigger. Thanks for all the suggestions, I will keep you all updated. Tried of typing my fingers are pretty stiff and achy.
Melissa
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missybean
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Re: sick of this!
Reply #16 - 08/12/11 at 04:58:17
 
Well I had my appointment with my rhuemotologist and she thinks it is a fibro flare, she just I was really tender. She told me to exercise and maybe see a counselor. Lol! She said she didn't know anything about mastocytosis but she said it sounds like a flare in one can cause the other ailment to flare up. She does think I have any arthritis which is good news. She ordered blood work like ESR, non-cardiac CRP, UA with mirco,culture and sensitivity, ANA, and lupus panel. I have to look some of those up....don't know what they are.
I still have hives and joint pain......not getting better even with adding allegra and singular. Wondering if there is something in my house making me sick because when I spend a good part of the day out and about I'm less reactive. Hummmmmm. Still keeping a journal and haven't figured it out yet.
Melissa
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Riverwn
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Re: sick of this!
Reply #17 - 08/12/11 at 06:47:16
 
Im so sorry Hon, youre still suffering with this.. ok lets take it one thing at a time...

I know how you feel about taking Prednisone, Im right there with you.. but.. IF you do take it again I think youre absolutely right--that dose isnt enough for how strong youre reacting. Talk to your DR about 60 mg ok?? And please have an emergency stash on hand, just in case.

Do NOT exercise unless you are sure youre not one of the ones who has exercise induced reactions--I do and it would put me in the hospital. I DO think she is right however about you being in a flare and a cycle of reacting--that hasnt been broken yet.

He gave me samples of allegra and more of singular and told me I could take oral histamine up to 4 times a day if needed. How much of each are you taking?? mgs and how many times a day? You can go up to 30 mg a day on the Singulair and on the Allegra?? I take 180 mg twice a day and will take an extra in between if I react to something.. I just have a feeling you are on too low doses to help as much as you could be helped. Also remember that Dr Castells now advises to take antihistamines every 6 hours--so obviously there are alot of us who are running around unprotected for some time during the day.

Dont worry about what those tests are for--until you get the results then only look into the abnormal or positive levels--Tell us what they are and we can help with that. Remember that masto is a disease/diagnosis of exclusion--we have to test neg for other stuff just to knock it off the 'possible' list. PS YOU keep copies of ALL lab tests.

Look in the older parts of your house that might have hidden water damage and thus hidden mold and mildew.. that can set us off big time.. I just had some torn out of my kitchen and rebuilt the arear near the removed mold .

Just remember, many people are scared to take the level of meds we need to take, to feel better and stop the cycle of reacting.. but what is worse?? The constant reactions and feeling ill OR taking a chance and higher meds (under your DRs supervision) and feeling much better?? Many times people think they react to a new antihistamine when the truth is, they were reacting anyway see?

Im hoping you feel better soon!!
many hugs
Ramona
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Sandi
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Re: sick of this!
Reply #18 - 08/13/11 at 19:45:11
 
Oh MissyB I haven't been on in forever. So sorry sweetie. I hope you've discovered something new.  I wanted to back up Deborah's post. I have found a lot of people think they are restricted and truly are not in food. There really could be another something thats bothering you. Truly break foods down to the basics no, mixed ingredients packaged crap! I cannot tell you how my fibro pain lightened when off of offending foods and yes they take forever. And just so I don't sound so all in love with my predicament of not eating crap, I was just having a pity party disgust this weekend with my diet. I spend my life preparing foods! Uggh. Onto that subject is your job, possibly you could focus on meal preparation for you and the family serious sale shopping which could reduce the families monthly expenses so you wouldn't need a job. You are quite ill and daycare for a 1 and 4 year old isn't cheap and that needs to be figured into your temporary income if you had to go back. So possibly your way to make money and feel better is to concentrate on pure foods and food on sale, cooking and freezing ahead of time. Everyone on here is so spot on always with undermedication. I was struggling, the only brand allegra I tolerated was from Teva Labs, well with the OTC change the 60 has been no longer avil, and I did better taking the 60's all day long rather than a one a day, I wall calling, emailing, pharmacy shopping.  It's been terrible, finally Im staring at 180's at least by the same mfg and started on one at noon with my 60mg in the am till I ran out..... Took the 180 in the am and it was making me very ill. . . Stupid I thought I can take it later, so I heard Deb in my head and Ramona and Lisa, I took my Zantac before then an hour later the 180 and walah I could tolerate it. Now it wasn't enough, I was taking  about 240 mg a day but can't take two 180's thats a lot more..... Finally I got disugsted one day I'd still been struggling. and I just decided the 180 in the am and I take another 180 at 5 and I've had serious improvement gastrointestinally. That's more than I'm sure anyone would recommend without a DR permission but I've had better improvement so I'm sticking with it. As I sit here flushing..... had to clean the carpet today, so Im triggering to the cleaning stuff. AGain I still can't eat poo, and still have my days, but my nausea has been under good control along with my gurgling moving intestines, my other Deb inspired knowledge is the Zantac upon that twinge of abdominal pain/trigger I know is trouble. I am learing to block It's not time, I've already taken two today, and realize I'm about to get much worse I'd better stop this. BAck on the financial front, if you have two vehicles maybe you can take one off the road for a bit until your husband is back to working more hours, that along with your penny pinching which you would not have as much time to do if you were at work running to daycare etc. May pay for you to stay home! Ok just reading your latest post, sorry! Look at the walls in the rooms behind your shower check for warped trim where water damage may be in the wall. Window sills around the caulking areas for mold, shower curtains, my killer was the shower door, we took it out and there is a channel on the underside that allowed practical mushrooms to grow. DH  cleaned it out then filled it with silicone ( dry it oustide, I react to the wet caulk,silicones, they reek! get one that is mold resistant) also the washing machine it could be moldy inside the bin also.
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Sandi
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Re: sick of this!
Reply #19 - 08/13/11 at 19:58:40
 
Amen Ramona! Your last sentences are my latest acceptance in my condition. I have to stop reacting and antihistimines are the only way to keep control along with the other avoidance things we all are doing! If a diabetic were going into shock and needed insulin however thought well I already had it once today, but the numbers said give yourself the shot they'd do it. Why we think differently is beyond me but we do!
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Riverwn
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Re: sick of this!
Reply #20 - 08/14/11 at 05:53:07
 
Great example Sandi!!
Maybe thats why its easier for me to see--Im diabetic and insulin resistant and I need those numbers to tell me when to take more and how much to take Smiley  Im so glad youre doing better.. I emphatically agree with 2 doses a day --and a third if you dont feel right.. Remember that Dr Castells advises meds every 6 hours while awake.. that must mean she has found that her patients meds arent lasting past 6 hours--that should tell us a lot!
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Ramona
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missybean
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Re: sick of this!
Reply #21 - 08/20/11 at 04:10:03
 
So I was just wondering, does anyone get this pain in certain joints like knees or ankles where as soon as you get up to walk or put pressure on them it hurts? I'm having problems with my knees buckling and which usually the pain is tolerable and I have to walk slow. But at 3am this morning I got of to change my babies diaper and it hurt to walk. THis time, my right knee was slightly hurting but buckling and my left ankle was hurting pretty good. I took some Ibuprofen and it's a little better. It hurts to walk, I look like a cripple. I called the allergist to complain because the hives are getting really bad again and he DID prescribe me the ketotifen and I won't get it till the beginning of next week. So he prescribed a couple of days of prednisone thats it. If ketotifen doesn't help I'm really close to trying plaquenil or methotrexate to try calm all this inflammation down. THis sucks!
Melissa
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kimtg68
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Re: sick of this!
Reply #22 - 08/21/11 at 08:13:09
 
I get the joint and bone pain too. Sometimes it lasts for days but often it will start out when I have been sitting still for a bit and then get up, or go to pick something up or hold a pen. Sometimes I can work through it and sometimes I have to wait for it to decide to leave. It's definitely a royal pain!

Kim
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kimtg68
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Re: sick of this!
Reply #23 - 08/21/11 at 08:21:34
 
Oh and first thing in the morning when my feet hit the floor.... I feel like I'm 80 years old not in my 40's!
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