This week coming, I have a few things to do.
I need to get a hold of my first Immunologist, in Winnipeg, to see WHY her secretary can't pull the abnormal tryptase/24 hour urine elevated histamine test results that got the doctor talking about the possibility of Mastocytosis in the first place. I need to call Dr. Vadas and let him know what happened this past week. I need to call Dr. Stevens, my family GP, to book a followup to being in hospital appointment (have to be seen at the hospital in Ambulatory Care because I react in his medical office facility...they still have lots of latex and dust.) I can't even begin to think about the hysterectomy I'm supposed to be getting done.
Dr. Vadas says he just needs to see ONE, just 1, set of these abnormal test results because my body has been reporting 'normal' levels since. Despite all this 'shocking' stuff. I KNOW these results exist because when I went to see the first Hematologist/Oncologist, she was in receipt of them and told me that she didn't think we needed to bother with a bone marrow biopsy because my clinical history and these test results were as conclusive as she needed to diagnose indolent Systemic Mastocytosis. A positive bone marrow biopsy, in her opinion, wouldn't change ANYTHING...not how we manage this disease or how frequently I will continue to 'shock'. She suggested, at this point, that I return to the Immunologist and have further tests done to determine actual 'triggers' for me (some of which, we knew...as in, latex, bees/wasps and various foods.)
Which I did.
However, Dr. Hicks (Immunologist) didn't agree. So, she referred me to yet another Hematologist/Oncologist. Six months of further shocks, hospital visits, hospital stays and experiencing the boundaries of my world getting smaller and smaller with each reaction. She put me on the following to try and ease the frequency and severity of these reactions:
10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
Had the bone marrow biopsy done in October 2008. Abnormal test results were found in March 2008. First Hematolgist was seen in July 2008. Second Hematologist was teleconferenced and seen in Sept. 2008.
I stopped taking the aforementioned meds. after 4 months of use. I saw very little difference in terms of improvement in either frequence or severity of reactions. With the exception of Reactine...for the first time since I was about 17, my sinuses were no longer inflamed, stuffed or infected. I could breathe clearly through both nostrils.
My family doctor, after yet more anaphylactic reactions and a 3 day stay in hospital in November 2008, thought we should see an Immunologist closer to home, in our own province. So, I was referred to Dr. Fischer in Barrie. I received an appointement to see him April 2009. However, the week before Xmas 2008, I had two anaphylactic reactions back to back, a mere day or so apart...so I called Dr. Fischer's office to see if they could put me on a cancellation list. When I explained to the secretary what had been happening, she spoke to Dr. Fischer and I had an appointment to see him the following morning. So, three days before Xmas, I was in his office at 9:00 am.
He had all my notes from my family doctor (who had requested all records and test results from Dr. Hicks in Winnipeg - we were there 8 months during 2008) but the abnormal tryptase/histamine wasn't there. Odd. He put me on a regime of:
10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
10 - 50 mg of Doxepin (formerly used as an anti-depressant but they discovered it wasn't particularly good at this, and that it was fabulous as a Mast Cell stabilizer.) I was to start at 10 mg, see if it helped, and if not, proceed to 20 mg, and so on. I ended up on 50 mgs, taken before bed.
I saw Dr. Fischer two weeks later in mid January 2009. I had suffered two more anaphylactic reactions, despite avoiding all known triggers, and as per his advise, eating a low-histamine diet (no chocolate, alcohol, potatoes, tomatoes, shrimp, etc...) I was no longer going anywhere, except to my friend Lori's house on Friday night's for 'game night.' (Her and her husband had taken great pains to de-latex their home.) He thought we should send me to Dr. Vadas who studies Idiopathic Anaphyalxis at St. Michael's Hospital, in Toronto (Canada.) They would arrange for an appointment.
My husband and I saw Dr. Vadas on February 18th 2009. After a 3 hour intake, he ordered tryptase blood work (that came back normal "3") and told me to stay on the same regimen, minus the Doxepin. He said Dox was of little use. Unless I found it helpful with depression...which I didn't. He wanted to see me in six weeks, unless I had any reactions - in which case, I was to call the office and report to him. I had a big one four weeks later, despite being virtually housebound. I also had two knee surgeries during this time. I had another reaction the day before we went to see him for followup. He added 1 - 4 mg of Ketotifen to the regime. Start at 1mg, work up to 4mg. And wanted to see me two weeks later.
I suffered 3 more reactions before seeing him again mid April 2009. He added Gastrocom/Cromyln/Nalcrom, taken 4 times daily to the regime.
And here we are two weeks later...and I've had numerous flare ups, and 9, yes count 'em, NINE anaphylactic reactions since.
Where I AM seeing improvement (in a HUGE way) is in my day to day functioning. I'm no longer suffering with massive weakness (all over body weakness), the shakes, headaches, sinus pain and the relentless swings between constipation and diarhea....and I'm no longer flushing, getting tachycardia, all over itching, watery and itchy eyes and nose, vomitting, nausea, weird rashes/hives/bumps/spots that appear and then go down days or weeks later, blackouts, and a sense of panic several times a day. Nor am I exhausted when I wake up. Nor am I grumpy and in bone pain agony all day, every day. My tongue can, and does, look and feel 'normal' sometimes. I'm able to do more in my day, even if it's at home.
However, I'm still shocking. The follow up to this is bone pain, diarrhea, stomach pain, intermittent flushing/itching/rashing/hiving, puffy and sore tongue, vomitting, nausea, weakness, body vibrations/tingling and blackouts, tightness in the chest, pain in my right lung, and don't 'feel right.'
I've lost 9lb this past week. Not exactly how I want to lose weight, but it can't be helped. That stomach bleed and hiatus hernia seem to have done a doozy on my system. I've got lots of flub on me, so 9lb isn't a huge deal. And to be honest, it's nice to see the scale go down because I've been trying (eating and exercising regularly) to shift this weight but it's had no intentions of shifting. Until now.
And since it's 1:30 am, I'm guessing that my old friend insomnia has returned for a bit. Ugh.
This blog entry has been monopolized by this health crap. I have LOTs of other things to do in my life...have two gorgeous girls to play with and look after, garden to tend to, pigs and chickens to tend to (omg...I hope I'm not reacting to them!?!?!?), rooms to paint and junk to sort out and get rid of (purging!), so my life isn't entirely about this illness. Although, it takes a pretty massive front seat these days. I look forward to the day it doens't.
I need to get a hold of my first Immunologist, in Winnipeg, to see WHY her secretary can't pull the abnormal tryptase/24 hour urine elevated histamine test results that got the doctor talking about the possibility of Mastocytosis in the first place. I need to call Dr. Vadas and let him know what happened this past week. I need to call Dr. Stevens, my family GP, to book a followup to being in hospital appointment (have to be seen at the hospital in Ambulatory Care because I react in his medical office facility...they still have lots of latex and dust.) I can't even begin to think about the hysterectomy I'm supposed to be getting done.
Dr. Vadas says he just needs to see ONE, just 1, set of these abnormal test results because my body has been reporting 'normal' levels since. Despite all this 'shocking' stuff. I KNOW these results exist because when I went to see the first Hematologist/Oncologist, she was in receipt of them and told me that she didn't think we needed to bother with a bone marrow biopsy because my clinical history and these test results were as conclusive as she needed to diagnose indolent Systemic Mastocytosis. A positive bone marrow biopsy, in her opinion, wouldn't change ANYTHING...not how we manage this disease or how frequently I will continue to 'shock'. She suggested, at this point, that I return to the Immunologist and have further tests done to determine actual 'triggers' for me (some of which, we knew...as in, latex, bees/wasps and various foods.)
Which I did.
However, Dr. Hicks (Immunologist) didn't agree. So, she referred me to yet another Hematologist/Oncologist. Six months of further shocks, hospital visits, hospital stays and experiencing the boundaries of my world getting smaller and smaller with each reaction. She put me on the following to try and ease the frequency and severity of these reactions:
10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
Had the bone marrow biopsy done in October 2008. Abnormal test results were found in March 2008. First Hematolgist was seen in July 2008. Second Hematologist was teleconferenced and seen in Sept. 2008.
I stopped taking the aforementioned meds. after 4 months of use. I saw very little difference in terms of improvement in either frequence or severity of reactions. With the exception of Reactine...for the first time since I was about 17, my sinuses were no longer inflamed, stuffed or infected. I could breathe clearly through both nostrils.
My family doctor, after yet more anaphylactic reactions and a 3 day stay in hospital in November 2008, thought we should see an Immunologist closer to home, in our own province. So, I was referred to Dr. Fischer in Barrie. I received an appointement to see him April 2009. However, the week before Xmas 2008, I had two anaphylactic reactions back to back, a mere day or so apart...so I called Dr. Fischer's office to see if they could put me on a cancellation list. When I explained to the secretary what had been happening, she spoke to Dr. Fischer and I had an appointment to see him the following morning. So, three days before Xmas, I was in his office at 9:00 am.
He had all my notes from my family doctor (who had requested all records and test results from Dr. Hicks in Winnipeg - we were there 8 months during 2008) but the abnormal tryptase/histamine wasn't there. Odd. He put me on a regime of:
10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
10 - 50 mg of Doxepin (formerly used as an anti-depressant but they discovered it wasn't particularly good at this, and that it was fabulous as a Mast Cell stabilizer.) I was to start at 10 mg, see if it helped, and if not, proceed to 20 mg, and so on. I ended up on 50 mgs, taken before bed.
I saw Dr. Fischer two weeks later in mid January 2009. I had suffered two more anaphylactic reactions, despite avoiding all known triggers, and as per his advise, eating a low-histamine diet (no chocolate, alcohol, potatoes, tomatoes, shrimp, etc...) I was no longer going anywhere, except to my friend Lori's house on Friday night's for 'game night.' (Her and her husband had taken great pains to de-latex their home.) He thought we should send me to Dr. Vadas who studies Idiopathic Anaphyalxis at St. Michael's Hospital, in Toronto (Canada.) They would arrange for an appointment.
My husband and I saw Dr. Vadas on February 18th 2009. After a 3 hour intake, he ordered tryptase blood work (that came back normal "3") and told me to stay on the same regimen, minus the Doxepin. He said Dox was of little use. Unless I found it helpful with depression...which I didn't. He wanted to see me in six weeks, unless I had any reactions - in which case, I was to call the office and report to him. I had a big one four weeks later, despite being virtually housebound. I also had two knee surgeries during this time. I had another reaction the day before we went to see him for followup. He added 1 - 4 mg of Ketotifen to the regime. Start at 1mg, work up to 4mg. And wanted to see me two weeks later.
I suffered 3 more reactions before seeing him again mid April 2009. He added Gastrocom/Cromyln/Nalcrom, taken 4 times daily to the regime.
And here we are two weeks later...and I've had numerous flare ups, and 9, yes count 'em, NINE anaphylactic reactions since.
Where I AM seeing improvement (in a HUGE way) is in my day to day functioning. I'm no longer suffering with massive weakness (all over body weakness), the shakes, headaches, sinus pain and the relentless swings between constipation and diarhea....and I'm no longer flushing, getting tachycardia, all over itching, watery and itchy eyes and nose, vomitting, nausea, weird rashes/hives/bumps/spots that appear and then go down days or weeks later, blackouts, and a sense of panic several times a day. Nor am I exhausted when I wake up. Nor am I grumpy and in bone pain agony all day, every day. My tongue can, and does, look and feel 'normal' sometimes. I'm able to do more in my day, even if it's at home.
However, I'm still shocking. The follow up to this is bone pain, diarrhea, stomach pain, intermittent flushing/itching/rashing/hiving, puffy and sore tongue, vomitting, nausea, weakness, body vibrations/tingling and blackouts, tightness in the chest, pain in my right lung, and don't 'feel right.'
I've lost 9lb this past week. Not exactly how I want to lose weight, but it can't be helped. That stomach bleed and hiatus hernia seem to have done a doozy on my system. I've got lots of flub on me, so 9lb isn't a huge deal. And to be honest, it's nice to see the scale go down because I've been trying (eating and exercising regularly) to shift this weight but it's had no intentions of shifting. Until now.
And since it's 1:30 am, I'm guessing that my old friend insomnia has returned for a bit. Ugh.
This blog entry has been monopolized by this health crap. I have LOTs of other things to do in my life...have two gorgeous girls to play with and look after, garden to tend to, pigs and chickens to tend to (omg...I hope I'm not reacting to them!?!?!?), rooms to paint and junk to sort out and get rid of (purging!), so my life isn't entirely about this illness. Although, it takes a pretty massive front seat these days. I look forward to the day it doens't.
1 comment:
Hey Fiona, this was great to read and get a better overall picture of the healthcare process you've been through.
One thing I disagree with Vadas on is the Doxepin. I started having frequent shocking (chest crushing pain, air cutting off, serious scary episodes) exactly one year ago. Dr. Sibbald switched me from Aerius to Reactine and added Doxepin, starting at 10mg and work up to see how I do with the Doxepin. I now take 20mg Doxepin at bedtime.
The only thing which stopped the shocking which is new to my routine and meds is Doxepin. It has very powerful antihistamine properties and is able to cross the blood brain barrier. It really truly worked for me.
So i'm just wondering what Dr. Fischer would think of you going back on Doxepin. Let the doctors disagree but you deserve other opinions on this. See what works for you ;-)
Also, the surgeries etc. are definitely going to kick up your masto just because of the body trauma - any invasive thing can trigger us.
Please ask someone other than Vadas about starting again on the Doxepin to add to the rest of your meds. I don't know why Vadas doesn't recognize it's effectiveness for many with masto but many patients take it. If I hadn't experienced it myself, and having no more severe shocking episodes, I wouldn't have understood it either. But it does help, except for those who can't tolerate it. We're all so different with meds etc. which you already know.
{Hug}
Carrie
Canadian Masto forum
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