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Gastroenterology (Expert Forum)
Adult Onset Systemic Mastocytosis
Answered by
Kevin Pho, MD - Internal Medicine
KevinMD.com
This forum is for questions regarding Gastroenterology issues such as Acid Reflux (GERD), Barretts Esophagus, Colitis, Colon/Bowel Disorders, Crohn's Disease, Diverticulitis/Diverticulosis, Digestive Disorders, IBS, Stomach Pain.
Adult Onset Systemic Mastocytosis
by Geeimnpain, Apr 23, 2004 12:00AM
I am a 55yo. wf....Registered Nurse...have not been able to work for past several weeks due to extreme fatigue and severe mid-epigastric pain with ensuing upper and lower G.I. symptoms. Recent hx. as follows: Allergic to Penicillen. Hyperlipidemia treated by Lipitor,HCVD treated with Cozaar, Lasix, KCl, Tenormin, Zaroxolyn
* Diagnosed(by skin biopsy, 24 hour urine for Histamines, and Bone Marrow Biopsy) at NIH in 2000 with Systemic Mastocytosis, although only skin manifestations at that time. Started on H1,H2 blockers.
* 3 months ago began experiencing SEVERE epigastric pain at breastbone area. Hypertensive Crisis (BP 170/130) with Tachycardia(140)coincided, followed by bloating and ascites(gained 12 lbs. in 4 days)(started on Zaroxylyn in addition to Lasix 40 mg. and KCl. Tenormin added to previous Cozaar..stabilized BP and HR.Ascites resolved.. still bloating, loud stomach gurgling,loose stools, some diarrhea(Pepto helps symptoms as does Imodium (immodium) with Simethicone, but both cause constipation!
* Endoscopy/Colonoscopy neg. except GERD
* Cardiac Cath. neg., but experienced ANAPHYLACTIC SHOCK following procedure,despite pre-op Benadryl.
*Current G.I. meds:
Prevacid 30mg.bid(have taken as much as QID with no relief obtained,)Zyrtec 10mg and Ranitidine 150mg.bid for H1 and H2 blockers, Gastrocrom 10ml in water 4x's/day, NuLev 0.125mg 2 p.o. 4x's/day..pain continues.
*My Gastroenterologist has reviewed my records sent from NIH, but we are just flying by the seat of our pants now, as NIH hasn't offered any solutions or suggestions other than those we've tried. In addition to above tests, others include CMP and CBC with Diff(WNL,) Thyroid WNL, ECHOCardiogram WNL, EKG Neg except for Tachycardia(now corrected.) I have been seen by Gastro, Cardiology, Internal Medicine, Psychiatry(not anxiety/panic induced....benzodiazipines did not make pain go away. SSRI's increased stomach pain.) Nitroglycerin didn't make pain go away, nor has any other medicine.
*Family hx. of Esophageal CA, as well as other forms of CA, Stroke, Heart Disease, Hypertension, Hyperlipidemia
That's my history...the questions I'd like answered are: Am I and the docs ASSUMING all these symptoms are from Mastocytosis progression, or should we be travelling down other roads? Should I see an Oncologist/Hematologist? THIS pain is unbearable, unexplainable and life-consuming. Yes, pain meds would help, but I want to know the SOURCE of the pain and everyone is baffled. ANY suggestions??
* Diagnosed(by skin biopsy, 24 hour urine for Histamines, and Bone Marrow Biopsy) at NIH in 2000 with Systemic Mastocytosis, although only skin manifestations at that time. Started on H1,H2 blockers.
* 3 months ago began experiencing SEVERE epigastric pain at breastbone area. Hypertensive Crisis (BP 170/130) with Tachycardia(140)coincided, followed by bloating and ascites(gained 12 lbs. in 4 days)(started on Zaroxylyn in addition to Lasix 40 mg. and KCl. Tenormin added to previous Cozaar..stabilized BP and HR.Ascites resolved.. still bloating, loud stomach gurgling,loose stools, some diarrhea(Pepto helps symptoms as does Imodium (immodium) with Simethicone, but both cause constipation!
* Endoscopy/Colonoscopy neg. except GERD
* Cardiac Cath. neg., but experienced ANAPHYLACTIC SHOCK following procedure,despite pre-op Benadryl.
*Current G.I. meds:
Prevacid 30mg.bid(have taken as much as QID with no relief obtained,)Zyrtec 10mg and Ranitidine 150mg.bid for H1 and H2 blockers, Gastrocrom 10ml in water 4x's/day, NuLev 0.125mg 2 p.o. 4x's/day..pain continues.
*My Gastroenterologist has reviewed my records sent from NIH, but we are just flying by the seat of our pants now, as NIH hasn't offered any solutions or suggestions other than those we've tried. In addition to above tests, others include CMP and CBC with Diff(WNL,) Thyroid WNL, ECHOCardiogram WNL, EKG Neg except for Tachycardia(now corrected.) I have been seen by Gastro, Cardiology, Internal Medicine, Psychiatry(not anxiety/panic induced....benzodiazipines did not make pain go away. SSRI's increased stomach pain.) Nitroglycerin didn't make pain go away, nor has any other medicine.
*Family hx. of Esophageal CA, as well as other forms of CA, Stroke, Heart Disease, Hypertension, Hyperlipidemia
That's my history...the questions I'd like answered are: Am I and the docs ASSUMING all these symptoms are from Mastocytosis progression, or should we be travelling down other roads? Should I see an Oncologist/Hematologist? THIS pain is unbearable, unexplainable and life-consuming. Yes, pain meds would help, but I want to know the SOURCE of the pain and everyone is baffled. ANY suggestions??
Doctor's Answer
by Kevin Pho, MD, Apr 25, 2004 12:00AM
, Apr 25, 2004 12:00AM
It is certainly possible that these symptoms may be due to mastocytosis. Symptoms and abnormalities include abdominal pain, diarrhea, nausea, vomiting, peptic ulcer disease, and gastrointestinal bleeding. Precipitation of symptoms is common with the administration of drugs (such as narcotics, aspirin and NSAIDS, procaine, and penicillin), exposure to cold or hot temperature, barium enemas, trauma, stress, exercise, alcohol, and medical procedures (including bone marrow biopsy, laparotomy, or endoscopy).
If you want to look elsewhere, a 24-hr pH study to further define GERD (in the setting of high dose PPIs) as well as an abdominal ultrasound (to evaluate the liver/gallballder) can be considered.
Regarding the treatment of mastocytosis, there is a medication known as Ketotifen, which is not available in the United States. It is used to control mast cell activation and is a first-line agent in Canada and Europe.
Other considerations would be Hydroxyurea as well as corticosteroid therapy. These options can be discussed with your personal physician. A hematologist can be considered if the symptoms continue without satisfactory response to the medications.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
Bibliography:
Bingham et al. Mastocytosis. UptoDate, 2004.
If you want to look elsewhere, a 24-hr pH study to further define GERD (in the setting of high dose PPIs) as well as an abdominal ultrasound (to evaluate the liver/gallballder) can be considered.
Regarding the treatment of mastocytosis, there is a medication known as Ketotifen, which is not available in the United States. It is used to control mast cell activation and is a first-line agent in Canada and Europe.
Other considerations would be Hydroxyurea as well as corticosteroid therapy. These options can be discussed with your personal physician. A hematologist can be considered if the symptoms continue without satisfactory response to the medications.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Thanks,
Kevin, M.D.
Bibliography:
Bingham et al. Mastocytosis. UptoDate, 2004.
