My MG odyssey
Begun November 23, 2013, 10:51 PST
Background:
About 09:30 October 29, 2013, while answering questions during the check-in process at the Physical Therapist's office, my speech became slurred (lisping), which worsened over the course of 3 or 4 minutes to the extent that I became alarmed and confused, and the employee at the PT office offered to give me a ride in her car to Tri-City Hospital, less than 1 mile away. I gratefully accepted.
I was admitted to the ER right away. I was seen by the hospitalist MD and a neurologist. I was told I had a stroke, given a head CT scan to confirm absence of hemorrhagic conditions, asked to sign a release (scary 6.4% nasty outcomes), and given IV tPA; then moved to ICU for at least 24 hours.
I survived the tPA.
While in the ICU, I was given 3 potassium supplement pills and told I was hypokalemic, my pulse was often below 45bpm, with decent systolic/diastolic numbers throughout my stay in ICU..
I was checked by
- neurologist
- speech therapist
- occupational therapist
- hospitalist MD
- (various others - not sure)
I was given bedside echocardiogram and ultrasound scans of my carotid arteries (and was told by the doctors that all were within normal ranges). Wednesday evening I was given an MRI "stroke study" - which I understand was clear/negative.
I was released Wednesday evening to my wife's car, front passenger seat. I asked her to drop me off at my truck (in the hospital parking lot where my friend Mike had helped my wife by moving it from the PT parking lot), which I drove home safely, in spite of the 2mg Ativan (oral) I had taken prior to my claustrophobic MRI session. (I failed to take the MRI at 15:00 due to claustrophobic panic, and tried again about 19:30 after the nurse had given me my 2mg Ativan).
Snapshot impressions (as I write this on Saturday morning - November 23, 2013):
After a mostly sleepless night, where I had trouble swallowing during sleep, and my right eye felt moist and 'more open' than my left (which no doubt contributed greatly to my anxiety and loss of sleep, for which I was afraid to take lorazepam in case it might exacerbate loss of muscle control or depress my breathing) - I gave up and left my bed for the computer room with my customary oatmeal, milk, and coffee. I had to take my medications in 5 sections for fear of choking. My speech was already tongue-tied, even though I had not yet spoken aloud for the day.
I took my pyridostigmine 60 and two (20mg) prednisone tabs about 10:45. By 12:10 my speech was almost normal, but I felt a slight light-headedness. I've noticed this on two other mornings after taking these medications. Is it the pyridostigmine or is it the prednisone? I suspect it's the pyrido. I'm beginning to think that the prednisone is a long-term systemic thing, and the pyridostigmine is my 'rescue inhaler'. Is that right? We can Google it.
The 'light headedness' is not quite 'vertigo' - but hints of it. It's an unfamiliar sensation. It did not prevent me from climbing the 3-step stool to trim the Wisteria last Sunday; only making me very cautious and slow, especially as the stool was wobbly on uneven ground. No mishaps, no falling. Perhaps it's all subjective and does not involve any vestibular impairment at all. With my history of sinus infections, it's hard to draw a line between normal and impaired balance.
My sleeping difficulties seem to be:
- I did not feel sleepy (I refrained from any lorazepam or alcohol, and only had some bread and milk for dinner); finally giving up and taking 1/2 dose of NyQuil at 2AM, falling asleep about 02:30, only to awaken with a very dry mouth, an inability to swallow my own (increased?) phlegm, and increasing anxiety about it - at 5:00, 5:45, 6:24, 7:10, and finally giving up and getting out of bed around 10:05.
This difficulty in swallowing; the feeling of 'something stuck' in my lower throat is an old and familiar feeling, usually when I have the flu and/or the onset of a horrific white-tongue sore throat episode, so I don't seem to panic - as long as I don't wind up actually choking. I've even noticed it and remember it as episodic over the past several years for no apparent reason. It would always resolve over a few days or weeks. Perhaps this is unrelated to MG, or perhaps it was an early warning sign. I particularly remember it about 6 years ago when we went on a day trip to purchase our current outdoor table tennis rig.
So now it is the morning of November 24, 2013, 10:12 and I feel pretty good. (Slight moist right eye - but that's all). I took 0,5mg lorazepam about 23:00 last night, lay down to watch the final Sumo tournament of the November basho - and had to turn off the headphones and TV prior to the last 50 minutes as I was gratefully falling asleep. I only awakened once during the night to use the bathroom (about 05:10, real dry mouth as usual. Used Afrin nasal spray lightly) and went back to sleep after only reading for about 6 minutes - to wake up at 08:05, happily realizing that I was feeling pretty good. Grabbed my 20mg prednisone and 60mg pyridostigmine with a medium banana and some water - and lay back down to relax and watch recordings of Law and Order; which I turned off and came here to start my morning routine: oatmeal, coffee, morning meds and think about my 'project' (toying with idea of Bluetooth project, but cannot identify most productive path yet. Keeping separate journal on that).
Walking back from kitchen at 10:20, noticed 'slight' vertiginous feeling, but no sense of weaving or loss of balance as walked down narrow dark hallway to this, my office.
More later - okay, it's 11:59 PST, and Kimiyo suggested I 'go play poker'. I felt good enuff to
- scrub out my shower, thoroughly, hands and knees plus on haunches to reach the inside and outside of shower curtain liner and sides of tub
stood up with no problem to then take my personal shower, eyes closed while shampooing, no balance problems.
- Now it's off to the tournament
Monday morning, Nov 25, 2013 - horrible night. Lay awake until almost 02:30. Swallowing difficulties, anxiety about the MG. Fought with alarm clock beginning at 06:30 due 08:30 meeting at work. Around 07:00, emailed boss that I would be in late due "doctor" - a small lie, since I intended to call the doctor. At that time I took my morning meds and lay back down. Finally got back up at around 10:15 and arrived at office about 11:30. Called neurology center about 13:30 and was told to leave message for "triage" person, who would definitely call me back to answer my questions about dosing limits. She never called me back.
Talked/lisped/'chunked' my way through the day at work and had a POSITIVE outcome by meeting a guy who's dad has/had MG, who told me that anxiety can increase symptoms, tonsillectomy might have been a mistake, and that relaxation techniques and/or exercise and/or diet may lead to remission! A ray of hope really made a difference as I spent the rest of the evening ignoring my symptoms. I even bragged to Kimiyo that I hadn't needed all 3 of my pyridostigmine pills (but took one anyhow about 18:30. Even tho arrived home at 17:00 feeling like I really wanted a nap, wanting to take advantage of being able to fall into a deep sleep - instead followed wife's advice to tough it out for a few hours so that I could sleep through the night.
Retired about 20:30 having taken a NyQuil cap only to awaken at 04:55 to pee, feeling rested and HAPPY that I had been able to sleep. Back to sleep, fighting mental battle to hold anxiety at bay (MG, finances), noting with glee that I had no difficulty swallowing as I went back to sleep about 05:15, Nov 26 - awakening to face the day at 07:18 (alarm was set for 07:20, always a minor miracle, since this seems to work even though I set the alarm for different times every day - waking 1 or 2 minutes prior alarm, electronic clock doesn't give off sub-audible cues so I marvel at my own sub-conscious' ability to do this about 80% of the time.)
symptoms this morning include
-wetness both eyes
-slight muscle tightness base of neck, bi-lateral - attributing this to 2-pillows overnight, vs normal 1.
-slight difficulty swallowing meds this morning but vastly improved over yesterday's struggle.
It is now the morning of November 27, 2013, and here's my snapshot of the last 24 hours
- yesterday woke up deeply rested with strong tongue and lips (slight moistness of eyes due weak blink/squint), a morning and all day with little or no speech impediment
- This morning woke up feeling rested, but speech difficulty of 8 (0 being perfect, 10 being worst) - an unexpected surprise given my well-rested and relaxed emotional state. Still, my attitude is very positive and I notice that if I 'soldier-through', ignoring the lisp - that if I throttle my speaking intensity, emphasis, volume, I can get 'better' on-the-fly, as I engage in conversation with others. The subject of my speaking this morning was stressful, however, involving emails from my estranged youngest.
It is now 09:13 PST. Thanksgiving, November 28, 2013. Feeling GREAT. Just swallowed my daily regimen of everything, including NEW upped-dose of prednisone = 3 x 10mg per doctor's verbal orders yesterday. NOTE: had 1 12-0z beer last night at the poker room and went to bed without any other sleep aids about 21:30.
- I lay in bed 80 mins after awakening, just watching old recorded science shows on the DVR, luxuriating in my 4 day weekend. Happy that I scored over $520 yesterday during 2 poker sessions, proving that, like Doug McA. "I have returned!"
- Was pleasantly surprised to note a marked absence of swallowing difficulty while on my pillow (although I had some difficulty getting all my pills down with coffee just now). Self-test of tongue-tip reveals a 6, where 10 is full-strength - but then again, I've just taken my meds within the last 5 minutes, so there hasn't been time to get into my bloodstream.
- Conscious realization that keeping a positive outlook is both pleasant and self-reinforcing. Bull my way through speech difficulties and hang on to Dr. Frischberg's assertion that I'm "much better" and "we will get rid of all the symptoms" and "thymectomy [several approaches?] can indeed result in the best possible outcome." OWTTE.
- Will start new med today - it's waiting for me at CVS, but I didn't have the mental strength to stop by on the way home last night (20:35) from Ocean's 11 poker room.
- NOTE: BP at yesterday's doctor visit (15:45) was 138/83 - 64. I've added ka supplement twice yesterday, and am keeping atenelol at 25mg for the time being.
- NOTE: Yesterday morning weighed in at 250.5, a significant milestone! Then I binged a bit and went to bed with a full stomach. I wonder what my weight will be come Monday morning?
What meds am I on now and why as of 11/23/2013
(listed my meds here. Won't copy them to my online journal)
Now, on november 28, the above is already obsolete.
- dropped the atorvastatin
- upped prednisone to 30mg each morning
- adding the new med this afternoon
- permission to up dose of pyridostigmine to 1-1/2 tabs 4 times a day if needed.
Here we are on the morning of November 30, 2013, and I've started my azathioprene
- 50mg every night for 1 week
- 50mg every AM and PM for 1 week
- 50 AM and 100 PM for where's the lower case? Apparently there's a mode in WORD for Calibri Normal that forces all upper-case?
- 100 AM and 100 PM will be the regular dose.
So I was reading my MG handbook for the first time and saw that Imuran (azathioprene) is more used in Europe and increases danger for 'some types of' cancer! Google found me some nuggets:
If genetic tests reveal that a patient has normal thiopurine methyltransferase (TPMT), an enzyme involved in the metabolism of azathioprine, the patient can take normal azathioprine doses without developing serious bone marrow toxicity, he says.
Dr. Shear says, however, that 0.3 percent of patients have virtually no TPMT activity.
"If I give them the regular dose, these people are at high risk of severe hematologic toxicity," he says.
Patients who have intermediate TMPT activity (which can occur because one allele in this pair is abnormal) also can develop problems.
"Generally I don't use azathioprine in either type of patient," he says. Dr. Shear says he recommends genetic testing for TPMT in all patients who are considering azathioprine.
- See more at: www.dermatologytimes.modernmedicine.com/dermatology-times/news/clinical/clinical-pharmacology/azathioprine-side-effects-may-be-misunderstood#sthash.0LbCIPZs.dpuf
Before taking azathioprine:
tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking. Be sure to mention any of the medications mentioned in the IMPORTANT WARNING section and the following: angiotensin-converting enzyme (ACE) inhibitors such as ...lisinopril
Read more at http://dvohmg.com/patients/medication/imuran-azathioprine/#sgIRFgCQf79bdWLx.99
So not particularly direct yet, keep looking. What does drugs.com say about loraz and azathio? - checked and it shows NO interaction! What's up with that, when the dermatologists declare ACE inhibitors are a problem? Let's look some more. Nothing found in 30 minutes of surfing....
There's only this from dvohmg.com
Azathioprine can cause a decrease in the number of blood cells in your bone marrow. If you experience any of the following symptoms, call your doctor immediately: unusual bleeding or bruising; excessive tiredness; pale skin; headache; confusion; dizziness; fast heartbeat; difficulty sleeping; weakness; shortness of breath; and sore throat, fever, chills, and other signs of infection. Your doctor will order tests before, during, and after your treatment to see if your blood cells are affected by this drug.
Azathioprine may increase your risk of developing certain types of cancer, especially skin cancer and lymphoma. Tell your doctor if you have or have ever had cancer and if you are taking or have ever taken alkylating agents such as chlorambucil (Leukeran), cyclophosphamide (Cytoxan), or melphalan (Alkeran) for cancer. Tell your doctor immediately if you notice any changes in your skin or any lumps or masses anywhere in your body.
Read more at www.dvohmg.com/patients/medication/imuran-azathioprine/#0fHh1rY4F6Zw7wSE.99
That's it for this morning's edumacashunal journey.
BTW - I haven't taken my pyridostigmine yet this morning, am halfway through my oatmeal and coffee, and I'm feeling pretty much 100% with strong toothpaste test (dry run in my mouth sitting here, including, being able to touch both upper pre-molars with tongue-tip - WOW!) It's 09:12 and all is well with the world, except when I cough, my back hurts and deep deep left hip bone pain flares from time to time (this is a new thing). Squinting is at about 30% strength?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2670554/
Revealed the following interesting information
STATINS MAY AGGRAVATE MYASTHENIA GRAVIS
SHIN J. OH, MD, ROHIT DHALL, MD, ANGELA YOUNG, MD, MARLA B. MORGAN, MD, LIANG LU, MD, and GWENDOLYN C. CLAUSSEN, MD
Muscle Nerve. Author manuscript; available in PMC 2009 April 20.
Published in final edited form as:
Muscle Nerve. 2008 September; 38(3): 1101–1107.
doi: 10.1002/mus.21074
PMCID: PMC2670554
NIHMSID: NIHMS94456
(with a follow-up article: More evidence for the association between statins and myasthenia gravis.
de Sousa E, Howard J.)
...
The most serious adverse effect of statin-induced myotoxicity is MG worsening, which occurred in 11% of MG patients on a statin. MG worsening is extremely rare, as we observed it in only 6 patients over a 4-year period. MG worsening occurred with all brands of statin and in all types of MG. In half the cases, MG worsening was obvious within 1-2 weeks after beginning statin treatment, and in the other half it was delayed, averaging 6-16 weeks. The most common symptom in MG worsening was oculobulbar weakness. Our study also showed that MG worsening reversed after withdrawal of the statin in half of the patients, but it required additional treatment for MG over a period of many months in the other half.
...
The precise mechanisms of direct myotoxity are not clear, although two explanations have been proposed: mitochondrial dysfunction caused by reducing endogeneous coenzyme Q10,2 and muscle membrane dysfunction due to deficiency of the chloride channel or interruption of glycoprotein synthesis.
...
We favor an immunomodulatory mechanism by modulation of disease activity through the statins’ effects on the immune system. Three pieces of evidence support this view. Statins are known to induce many autoimmune diseases, as discussed previously.14,18 Statins also have immunomodulatory properties, including loss of immune tolerance and production of pathogenic autoantibodies.6 AChR-ab titer increase in our 2 cases favors this theory. In 3 previous cases, the AChR-ab titer decreased when MG symptoms resolved.7,12 In 1 case, AChR-ab became negative 1 year after onset of unmasked MG by a statin.12 In another case, AChR-ab became negative 10 weeks after recovery.7 Purvin et al. further suggested that the statins induced de novo formation of antibodies directed at the neuromuscular junction, citing penicillamine-induced MG.12 This suggestion is untenable, because MG worsening occurred even in seronegative cases, and not all cases showed spontaneous improvement with withdrawal of the statin as noted in penicillamine-induced MG.11
Our study has shown that an adverse effect of statins occurred in 24% of MG patients on statins, indicating that, in 76% of cases, statins appeared to be safe.
Begun November 23, 2013, 10:51 PST
Background:
About 09:30 October 29, 2013, while answering questions during the check-in process at the Physical Therapist's office, my speech became slurred (lisping), which worsened over the course of 3 or 4 minutes to the extent that I became alarmed and confused, and the employee at the PT office offered to give me a ride in her car to Tri-City Hospital, less than 1 mile away. I gratefully accepted.
I was admitted to the ER right away. I was seen by the hospitalist MD and a neurologist. I was told I had a stroke, given a head CT scan to confirm absence of hemorrhagic conditions, asked to sign a release (scary 6.4% nasty outcomes), and given IV tPA; then moved to ICU for at least 24 hours.
I survived the tPA.
While in the ICU, I was given 3 potassium supplement pills and told I was hypokalemic, my pulse was often below 45bpm, with decent systolic/diastolic numbers throughout my stay in ICU..
I was checked by
- neurologist
- speech therapist
- occupational therapist
- hospitalist MD
- (various others - not sure)
I was given bedside echocardiogram and ultrasound scans of my carotid arteries (and was told by the doctors that all were within normal ranges). Wednesday evening I was given an MRI "stroke study" - which I understand was clear/negative.
I was released Wednesday evening to my wife's car, front passenger seat. I asked her to drop me off at my truck (in the hospital parking lot where my friend Mike had helped my wife by moving it from the PT parking lot), which I drove home safely, in spite of the 2mg Ativan (oral) I had taken prior to my claustrophobic MRI session. (I failed to take the MRI at 15:00 due to claustrophobic panic, and tried again about 19:30 after the nurse had given me my 2mg Ativan).
Snapshot impressions (as I write this on Saturday morning - November 23, 2013):
After a mostly sleepless night, where I had trouble swallowing during sleep, and my right eye felt moist and 'more open' than my left (which no doubt contributed greatly to my anxiety and loss of sleep, for which I was afraid to take lorazepam in case it might exacerbate loss of muscle control or depress my breathing) - I gave up and left my bed for the computer room with my customary oatmeal, milk, and coffee. I had to take my medications in 5 sections for fear of choking. My speech was already tongue-tied, even though I had not yet spoken aloud for the day.
I took my pyridostigmine 60 and two (20mg) prednisone tabs about 10:45. By 12:10 my speech was almost normal, but I felt a slight light-headedness. I've noticed this on two other mornings after taking these medications. Is it the pyridostigmine or is it the prednisone? I suspect it's the pyrido. I'm beginning to think that the prednisone is a long-term systemic thing, and the pyridostigmine is my 'rescue inhaler'. Is that right? We can Google it.
The 'light headedness' is not quite 'vertigo' - but hints of it. It's an unfamiliar sensation. It did not prevent me from climbing the 3-step stool to trim the Wisteria last Sunday; only making me very cautious and slow, especially as the stool was wobbly on uneven ground. No mishaps, no falling. Perhaps it's all subjective and does not involve any vestibular impairment at all. With my history of sinus infections, it's hard to draw a line between normal and impaired balance.
My sleeping difficulties seem to be:
- I did not feel sleepy (I refrained from any lorazepam or alcohol, and only had some bread and milk for dinner); finally giving up and taking 1/2 dose of NyQuil at 2AM, falling asleep about 02:30, only to awaken with a very dry mouth, an inability to swallow my own (increased?) phlegm, and increasing anxiety about it - at 5:00, 5:45, 6:24, 7:10, and finally giving up and getting out of bed around 10:05.
This difficulty in swallowing; the feeling of 'something stuck' in my lower throat is an old and familiar feeling, usually when I have the flu and/or the onset of a horrific white-tongue sore throat episode, so I don't seem to panic - as long as I don't wind up actually choking. I've even noticed it and remember it as episodic over the past several years for no apparent reason. It would always resolve over a few days or weeks. Perhaps this is unrelated to MG, or perhaps it was an early warning sign. I particularly remember it about 6 years ago when we went on a day trip to purchase our current outdoor table tennis rig.
So now it is the morning of November 24, 2013, 10:12 and I feel pretty good. (Slight moist right eye - but that's all). I took 0,5mg lorazepam about 23:00 last night, lay down to watch the final Sumo tournament of the November basho - and had to turn off the headphones and TV prior to the last 50 minutes as I was gratefully falling asleep. I only awakened once during the night to use the bathroom (about 05:10, real dry mouth as usual. Used Afrin nasal spray lightly) and went back to sleep after only reading for about 6 minutes - to wake up at 08:05, happily realizing that I was feeling pretty good. Grabbed my 20mg prednisone and 60mg pyridostigmine with a medium banana and some water - and lay back down to relax and watch recordings of Law and Order; which I turned off and came here to start my morning routine: oatmeal, coffee, morning meds and think about my 'project' (toying with idea of Bluetooth project, but cannot identify most productive path yet. Keeping separate journal on that).
Walking back from kitchen at 10:20, noticed 'slight' vertiginous feeling, but no sense of weaving or loss of balance as walked down narrow dark hallway to this, my office.
More later - okay, it's 11:59 PST, and Kimiyo suggested I 'go play poker'. I felt good enuff to
- scrub out my shower, thoroughly, hands and knees plus on haunches to reach the inside and outside of shower curtain liner and sides of tub
stood up with no problem to then take my personal shower, eyes closed while shampooing, no balance problems.
- Now it's off to the tournament
Monday morning, Nov 25, 2013 - horrible night. Lay awake until almost 02:30. Swallowing difficulties, anxiety about the MG. Fought with alarm clock beginning at 06:30 due 08:30 meeting at work. Around 07:00, emailed boss that I would be in late due "doctor" - a small lie, since I intended to call the doctor. At that time I took my morning meds and lay back down. Finally got back up at around 10:15 and arrived at office about 11:30. Called neurology center about 13:30 and was told to leave message for "triage" person, who would definitely call me back to answer my questions about dosing limits. She never called me back.
Talked/lisped/'chunked' my way through the day at work and had a POSITIVE outcome by meeting a guy who's dad has/had MG, who told me that anxiety can increase symptoms, tonsillectomy might have been a mistake, and that relaxation techniques and/or exercise and/or diet may lead to remission! A ray of hope really made a difference as I spent the rest of the evening ignoring my symptoms. I even bragged to Kimiyo that I hadn't needed all 3 of my pyridostigmine pills (but took one anyhow about 18:30. Even tho arrived home at 17:00 feeling like I really wanted a nap, wanting to take advantage of being able to fall into a deep sleep - instead followed wife's advice to tough it out for a few hours so that I could sleep through the night.
Retired about 20:30 having taken a NyQuil cap only to awaken at 04:55 to pee, feeling rested and HAPPY that I had been able to sleep. Back to sleep, fighting mental battle to hold anxiety at bay (MG, finances), noting with glee that I had no difficulty swallowing as I went back to sleep about 05:15, Nov 26 - awakening to face the day at 07:18 (alarm was set for 07:20, always a minor miracle, since this seems to work even though I set the alarm for different times every day - waking 1 or 2 minutes prior alarm, electronic clock doesn't give off sub-audible cues so I marvel at my own sub-conscious' ability to do this about 80% of the time.)
symptoms this morning include
-wetness both eyes
-slight muscle tightness base of neck, bi-lateral - attributing this to 2-pillows overnight, vs normal 1.
-slight difficulty swallowing meds this morning but vastly improved over yesterday's struggle.
It is now the morning of November 27, 2013, and here's my snapshot of the last 24 hours
- yesterday woke up deeply rested with strong tongue and lips (slight moistness of eyes due weak blink/squint), a morning and all day with little or no speech impediment
- This morning woke up feeling rested, but speech difficulty of 8 (0 being perfect, 10 being worst) - an unexpected surprise given my well-rested and relaxed emotional state. Still, my attitude is very positive and I notice that if I 'soldier-through', ignoring the lisp - that if I throttle my speaking intensity, emphasis, volume, I can get 'better' on-the-fly, as I engage in conversation with others. The subject of my speaking this morning was stressful, however, involving emails from my estranged youngest.
It is now 09:13 PST. Thanksgiving, November 28, 2013. Feeling GREAT. Just swallowed my daily regimen of everything, including NEW upped-dose of prednisone = 3 x 10mg per doctor's verbal orders yesterday. NOTE: had 1 12-0z beer last night at the poker room and went to bed without any other sleep aids about 21:30.
- I lay in bed 80 mins after awakening, just watching old recorded science shows on the DVR, luxuriating in my 4 day weekend. Happy that I scored over $520 yesterday during 2 poker sessions, proving that, like Doug McA. "I have returned!"
- Was pleasantly surprised to note a marked absence of swallowing difficulty while on my pillow (although I had some difficulty getting all my pills down with coffee just now). Self-test of tongue-tip reveals a 6, where 10 is full-strength - but then again, I've just taken my meds within the last 5 minutes, so there hasn't been time to get into my bloodstream.
- Conscious realization that keeping a positive outlook is both pleasant and self-reinforcing. Bull my way through speech difficulties and hang on to Dr. Frischberg's assertion that I'm "much better" and "we will get rid of all the symptoms" and "thymectomy [several approaches?] can indeed result in the best possible outcome." OWTTE.
- Will start new med today - it's waiting for me at CVS, but I didn't have the mental strength to stop by on the way home last night (20:35) from Ocean's 11 poker room.
- NOTE: BP at yesterday's doctor visit (15:45) was 138/83 - 64. I've added ka supplement twice yesterday, and am keeping atenelol at 25mg for the time being.
- NOTE: Yesterday morning weighed in at 250.5, a significant milestone! Then I binged a bit and went to bed with a full stomach. I wonder what my weight will be come Monday morning?
What meds am I on now and why as of 11/23/2013
(listed my meds here. Won't copy them to my online journal)
Now, on november 28, the above is already obsolete.
- dropped the atorvastatin
- upped prednisone to 30mg each morning
- adding the new med this afternoon
- permission to up dose of pyridostigmine to 1-1/2 tabs 4 times a day if needed.
Here we are on the morning of November 30, 2013, and I've started my azathioprene
- 50mg every night for 1 week
- 50mg every AM and PM for 1 week
- 50 AM and 100 PM for where's the lower case? Apparently there's a mode in WORD for Calibri Normal that forces all upper-case?
- 100 AM and 100 PM will be the regular dose.
So I was reading my MG handbook for the first time and saw that Imuran (azathioprene) is more used in Europe and increases danger for 'some types of' cancer! Google found me some nuggets:
If genetic tests reveal that a patient has normal thiopurine methyltransferase (TPMT), an enzyme involved in the metabolism of azathioprine, the patient can take normal azathioprine doses without developing serious bone marrow toxicity, he says.
Dr. Shear says, however, that 0.3 percent of patients have virtually no TPMT activity.
"If I give them the regular dose, these people are at high risk of severe hematologic toxicity," he says.
Patients who have intermediate TMPT activity (which can occur because one allele in this pair is abnormal) also can develop problems.
"Generally I don't use azathioprine in either type of patient," he says. Dr. Shear says he recommends genetic testing for TPMT in all patients who are considering azathioprine.
- See more at: www.dermatologytimes.modernmedicine.com/dermatology-times/news/clinical/clinical-pharmacology/azathioprine-side-effects-may-be-misunderstood#sthash.0LbCIPZs.dpuf
Before taking azathioprine:
tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking. Be sure to mention any of the medications mentioned in the IMPORTANT WARNING section and the following: angiotensin-converting enzyme (ACE) inhibitors such as ...lisinopril
Read more at http://dvohmg.com/patients/medication/imuran-azathioprine/#sgIRFgCQf79bdWLx.99
So not particularly direct yet, keep looking. What does drugs.com say about loraz and azathio? - checked and it shows NO interaction! What's up with that, when the dermatologists declare ACE inhibitors are a problem? Let's look some more. Nothing found in 30 minutes of surfing....
There's only this from dvohmg.com
Azathioprine can cause a decrease in the number of blood cells in your bone marrow. If you experience any of the following symptoms, call your doctor immediately: unusual bleeding or bruising; excessive tiredness; pale skin; headache; confusion; dizziness; fast heartbeat; difficulty sleeping; weakness; shortness of breath; and sore throat, fever, chills, and other signs of infection. Your doctor will order tests before, during, and after your treatment to see if your blood cells are affected by this drug.
Azathioprine may increase your risk of developing certain types of cancer, especially skin cancer and lymphoma. Tell your doctor if you have or have ever had cancer and if you are taking or have ever taken alkylating agents such as chlorambucil (Leukeran), cyclophosphamide (Cytoxan), or melphalan (Alkeran) for cancer. Tell your doctor immediately if you notice any changes in your skin or any lumps or masses anywhere in your body.
Read more at www.dvohmg.com/patients/medication/imuran-azathioprine/#0fHh1rY4F6Zw7wSE.99
That's it for this morning's edumacashunal journey.
BTW - I haven't taken my pyridostigmine yet this morning, am halfway through my oatmeal and coffee, and I'm feeling pretty much 100% with strong toothpaste test (dry run in my mouth sitting here, including, being able to touch both upper pre-molars with tongue-tip - WOW!) It's 09:12 and all is well with the world, except when I cough, my back hurts and deep deep left hip bone pain flares from time to time (this is a new thing). Squinting is at about 30% strength?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2670554/
Revealed the following interesting information
STATINS MAY AGGRAVATE MYASTHENIA GRAVIS
SHIN J. OH, MD, ROHIT DHALL, MD, ANGELA YOUNG, MD, MARLA B. MORGAN, MD, LIANG LU, MD, and GWENDOLYN C. CLAUSSEN, MD
Muscle Nerve. Author manuscript; available in PMC 2009 April 20.
Published in final edited form as:
Muscle Nerve. 2008 September; 38(3): 1101–1107.
doi: 10.1002/mus.21074
PMCID: PMC2670554
NIHMSID: NIHMS94456
(with a follow-up article: More evidence for the association between statins and myasthenia gravis.
de Sousa E, Howard J.)
...
The most serious adverse effect of statin-induced myotoxicity is MG worsening, which occurred in 11% of MG patients on a statin. MG worsening is extremely rare, as we observed it in only 6 patients over a 4-year period. MG worsening occurred with all brands of statin and in all types of MG. In half the cases, MG worsening was obvious within 1-2 weeks after beginning statin treatment, and in the other half it was delayed, averaging 6-16 weeks. The most common symptom in MG worsening was oculobulbar weakness. Our study also showed that MG worsening reversed after withdrawal of the statin in half of the patients, but it required additional treatment for MG over a period of many months in the other half.
...
The precise mechanisms of direct myotoxity are not clear, although two explanations have been proposed: mitochondrial dysfunction caused by reducing endogeneous coenzyme Q10,2 and muscle membrane dysfunction due to deficiency of the chloride channel or interruption of glycoprotein synthesis.
...
We favor an immunomodulatory mechanism by modulation of disease activity through the statins’ effects on the immune system. Three pieces of evidence support this view. Statins are known to induce many autoimmune diseases, as discussed previously.14,18 Statins also have immunomodulatory properties, including loss of immune tolerance and production of pathogenic autoantibodies.6 AChR-ab titer increase in our 2 cases favors this theory. In 3 previous cases, the AChR-ab titer decreased when MG symptoms resolved.7,12 In 1 case, AChR-ab became negative 1 year after onset of unmasked MG by a statin.12 In another case, AChR-ab became negative 10 weeks after recovery.7 Purvin et al. further suggested that the statins induced de novo formation of antibodies directed at the neuromuscular junction, citing penicillamine-induced MG.12 This suggestion is untenable, because MG worsening occurred even in seronegative cases, and not all cases showed spontaneous improvement with withdrawal of the statin as noted in penicillamine-induced MG.11
Our study has shown that an adverse effect of statins occurred in 24% of MG patients on statins, indicating that, in 76% of cases, statins appeared to be safe.
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