The only report on my cardiac status in this file was on 12/4/08, almost two years ago. Subsequently I continued to have frequent extrasystoles but was able to maintain a fairly stable level of exercise, walking 2+ miles each day and doing weight work about twice weekly.
In the summer of 2010 we had scheduled a rather grueling vacation agenda, first going to a cottage on Upper Saranac Lake, NY to be with our son’s family and then on to Dallas for a reunion of Patti’s students of some 30 years ago. After the latter and on the flight back from Dallas to Portland, I went into atrial fibrillation. Perhaps this was due to the low oxygen in the plane cabin? As noted previously, I had an ablation on the right side of the heart in 2006 to abort a. fib. which was unsuccessful so I was then cardioverted successfully.
Now it was decided that I should have an ablation in the left atrial, pulmonary vein area. This was a 5 hour procedure and it took me about 5 days to fully awaken from the anesthesia. The ablation was unsuccessful and so I was again cardioverted successfully.
I had felt weaker and more tired with the onset of the a. fib. and on returning to a NSR I felt significantly better (after I recovered from the anesthesia). Unfortunately, the a. fib. returned in about a week and a half, noting again increased weakness and tiredness. This occurred after our usual 2 mile walk. It was then decided to place me on Amioderone, as an anti-arrhythmic agent, and then do another cardioversion which is scheduled for tomorrow, 10/25/10. I had started Warfarin with the onset of the first a. fib.
My hope now is to return to my prior NSR status and that the Amioderone will prevent the a. fib. from recurring.
Sunday, October 24, 2010
Update on Peripheral Neuropathy due to Gammopathy
I stopped the IVIG in June 2010, first because Medicare was going to stop coverage in several months, undoubtedly due to the excessive cost. Secondly I was not sure it was doing anything anymore. We decided to make another attempt at Retuximab in the fall, the intervening time to be spent obtaining a new baseline. It became apparent about a month out that the numbness was increasing slightly, particularly in the fingers and after 3 months going from a 2 to a 4 in the left hand and a 0-1 to a 2 on the right. Balance seemed a little worse with two falls during the summer months (first falls).
In September we started the first of 4 weekly infusions of Retuximab, finishing on 10/22/10. With the second infusion I had a reaction, shaking chills and a low grade fever. A CBC showed a pancytopenia. I was loaded up with antihistamines for the last two infusions and had no further reactions or abnormal blood results.
A month or so out we will check markers, IgM, AMAG and B cell count most likely. My symptoms are stable and did not change with the infusions. My hope is that symptoms will remain stable.
In September we started the first of 4 weekly infusions of Retuximab, finishing on 10/22/10. With the second infusion I had a reaction, shaking chills and a low grade fever. A CBC showed a pancytopenia. I was loaded up with antihistamines for the last two infusions and had no further reactions or abnormal blood results.
A month or so out we will check markers, IgM, AMAG and B cell count most likely. My symptoms are stable and did not change with the infusions. My hope is that symptoms will remain stable.
Sunday, May 23, 2010
Peripheral Neuropathy - Retuximab
This blog is now devoted to documenting the several disease processes that I have and serves two purposes: first to give me a permanent record of the course of these diseases and, secondly, to provide information to those searching online for information in these areas.
As a follow-up to my blog of 4/21/10, the neurology department at OHSU informed me that Medicare coverage for the IVIG treatment for my peripheral neuropathy would expire in 12/10. This would most likely not be renewed because of the expense involved: about $160,000 per year. So, I have been looking for alternate treatments.
In the April blog I outlined the possible treatment options available. Since then, I have done some research and, also, saw the hematologist who has been supervising my treatment, Dr. Deloughery. We agreed to follow what appears to be the best treatment available based on current research.
I tried Retuxmab in February 2009 at which time I noted no improvement in symptoms so we progressed to IVIG which did give me some symptomatic relief, indicating that it was effective in halting the damage to my nerves caused by the Gammopathy. However, in reading some of the recent literature it became apparent that Retuximab may not only improve symptoms but it may also halt progression of symptoms without showing any immediate improvement in symptoms. Markers have been evaluated to assess whether they can give a measure of the effectiveness of treatment. Benedetti (1)felt that IgM levels gave the best measure of improvement and hypothesized that there may be a critical level of IgM where disease would be triggered, and conversely, a reduction from an abnormal level where you would see improvement or stabilization. Anti-MAG titers were less clearly related to clinical changes.
It is pointed out by Ramchadren (2) that there is a distinction between the gammopathies associated with the M protein DADS-M (distal-acquired demyelinating sensory neuropathy) and those without the M protein, DADS. The latter characteristically have elevated levels of IgA/IgG. A distinction is that DADS-M occurs more in an older population and is predominantly a sensory neuropathy with mild distal weakness. Large fibers controlling vibration and proprioception are affected more than pain and temperature sensation, resulting in progressive balance problems. DADS presents a more variable picture; there is typically more weakness and less balance problems. Another distinction is that DADS-M responds more to Retuximab while DADS is more like the neuropathy seen with CIPD and is more likely to respond to treatments for this type of neuropathy.
My neuropathy appears consistent with DADS-M and, so, should more likely respond to Retuximab. I expect we will stop the IVIG therapy within a few months and switch to Retuximab. We will check markers and, in addition to checking IgM, we will also check the other markers that have been used, anti-MAG titer and level of B cells
-----------------
1 Benedetti L, Brian C. Grandis M, et al. Predictors of response to Retuximab in patients with neuropathy and antimyelin associated glycoprotein immunoglobulin M. J Peripher Nerv Syst 2007; 12: 102-107.
2 Ramchadren S, & Richard A. Lewis. Monoclonal gammopathy and neuropathy. Current Opinion in Neurology 2009; 22: 480-485.
As a follow-up to my blog of 4/21/10, the neurology department at OHSU informed me that Medicare coverage for the IVIG treatment for my peripheral neuropathy would expire in 12/10. This would most likely not be renewed because of the expense involved: about $160,000 per year. So, I have been looking for alternate treatments.
In the April blog I outlined the possible treatment options available. Since then, I have done some research and, also, saw the hematologist who has been supervising my treatment, Dr. Deloughery. We agreed to follow what appears to be the best treatment available based on current research.
I tried Retuxmab in February 2009 at which time I noted no improvement in symptoms so we progressed to IVIG which did give me some symptomatic relief, indicating that it was effective in halting the damage to my nerves caused by the Gammopathy. However, in reading some of the recent literature it became apparent that Retuximab may not only improve symptoms but it may also halt progression of symptoms without showing any immediate improvement in symptoms. Markers have been evaluated to assess whether they can give a measure of the effectiveness of treatment. Benedetti (1)felt that IgM levels gave the best measure of improvement and hypothesized that there may be a critical level of IgM where disease would be triggered, and conversely, a reduction from an abnormal level where you would see improvement or stabilization. Anti-MAG titers were less clearly related to clinical changes.
It is pointed out by Ramchadren (2) that there is a distinction between the gammopathies associated with the M protein DADS-M (distal-acquired demyelinating sensory neuropathy) and those without the M protein, DADS. The latter characteristically have elevated levels of IgA/IgG. A distinction is that DADS-M occurs more in an older population and is predominantly a sensory neuropathy with mild distal weakness. Large fibers controlling vibration and proprioception are affected more than pain and temperature sensation, resulting in progressive balance problems. DADS presents a more variable picture; there is typically more weakness and less balance problems. Another distinction is that DADS-M responds more to Retuximab while DADS is more like the neuropathy seen with CIPD and is more likely to respond to treatments for this type of neuropathy.
My neuropathy appears consistent with DADS-M and, so, should more likely respond to Retuximab. I expect we will stop the IVIG therapy within a few months and switch to Retuximab. We will check markers and, in addition to checking IgM, we will also check the other markers that have been used, anti-MAG titer and level of B cells
-----------------
1 Benedetti L, Brian C. Grandis M, et al. Predictors of response to Retuximab in patients with neuropathy and antimyelin associated glycoprotein immunoglobulin M. J Peripher Nerv Syst 2007; 12: 102-107.
2 Ramchadren S, & Richard A. Lewis. Monoclonal gammopathy and neuropathy. Current Opinion in Neurology 2009; 22: 480-485.
Wednesday, April 21, 2010
Treatment of Peripheral Neuropathy d/t Gammopathy - followup
PROBLEM: At my Neurology appointment on 4/13/10 I was informed by Dr. Edgar that Medicare would pay for my IVIG treatment for my peripheral neuropathy for only a limited period of time, usually for either 6 or 12 months. I began treatment in 9/09 and it now being 4/10 I have received IVIG for 8 months. So, it appears that Medicare will stop payment after my treatment in 8/10. I will check with Dr. Edgar’s office to confirm this date.
I have been worrying about this in view of the cost: 60 grams per infusion costs $9400 and receiving it every 3 weeks or 17 times per year equals about $160,000/year. So, my problem is what do I do when my IVIG Medicare coverage expires in 8/10?
HISTORY, brief: My peripheral neuropathy (pn) began in 1984, some 26 years ago, with numbness and tingling (n&t) in the soles of both feet. It then appeared unchanged until 1999 when I noted onset of numbness and tingling in the fingers of both hands. That then appeared unchanged until 2007 when n&t increased in both hands and my balance and gait became notably poorer.
At that time a nerve conduction study (ncs) revealed both myelin sheath degradation and axonal deterioration in the peripheral nerves of all 4 extremities. Prior studies had been normal.
Blood studies at this time revealed a Gammopathy: elevated IgG & IgM, both being in the thousands while AMAG was > 70,000. My pn was attributed to the Gammopathy.
In 2/09 I received a course of Retuximab to no affect. Then in 9/09 I received IVIG which showed significant improvement in 3 weeks, the n&t being reduced by about 50%. Infusions every 4 weeks showed a breakthrough in symptoms after 3 weeks so we increased the frequency to every 3 weeks which has worked since 2/10, the n&t remaining stable at its improved level.
I presume that my neuropathy will progress if the Retuximad is stopped. Presently it appears that this is the only treatment that will hold my neuropathy in remission.
OPTIONS:
1) Accept stopping the IVIG in 8/10 and watch the course of the disease – least acceptable option.
2) See if I can pay for the treatments – very expensive option - $160,000/year,
3) See if Medicare would continue to pay part and I pay the remainder.
4) Try Retuximad again to make sure it does not work; check initial dose, etc. to make sure I received a proper course of treatment. Retuximad, in those where it works, is effective for 12 – 18 months. Then another course can be given.
5) Seek outside source of medication where cheaper, such as China where it may cost 1/3 as much.
6) Does Canadian Medicare give lifelong treatment – and move there?
7) Dr. Edgar mentioned replacement with an immuno-suppressant, such as Imuran. However, this depresses the whole immune system making you more susceptible to infections. I, also, heard that Imuran increases your risk for cancer (?).
8) Is there some other treatment in research or on trail that could be tried?
9) Other?
I have been worrying about this in view of the cost: 60 grams per infusion costs $9400 and receiving it every 3 weeks or 17 times per year equals about $160,000/year. So, my problem is what do I do when my IVIG Medicare coverage expires in 8/10?
HISTORY, brief: My peripheral neuropathy (pn) began in 1984, some 26 years ago, with numbness and tingling (n&t) in the soles of both feet. It then appeared unchanged until 1999 when I noted onset of numbness and tingling in the fingers of both hands. That then appeared unchanged until 2007 when n&t increased in both hands and my balance and gait became notably poorer.
At that time a nerve conduction study (ncs) revealed both myelin sheath degradation and axonal deterioration in the peripheral nerves of all 4 extremities. Prior studies had been normal.
Blood studies at this time revealed a Gammopathy: elevated IgG & IgM, both being in the thousands while AMAG was > 70,000. My pn was attributed to the Gammopathy.
In 2/09 I received a course of Retuximab to no affect. Then in 9/09 I received IVIG which showed significant improvement in 3 weeks, the n&t being reduced by about 50%. Infusions every 4 weeks showed a breakthrough in symptoms after 3 weeks so we increased the frequency to every 3 weeks which has worked since 2/10, the n&t remaining stable at its improved level.
I presume that my neuropathy will progress if the Retuximad is stopped. Presently it appears that this is the only treatment that will hold my neuropathy in remission.
OPTIONS:
1) Accept stopping the IVIG in 8/10 and watch the course of the disease – least acceptable option.
2) See if I can pay for the treatments – very expensive option - $160,000/year,
3) See if Medicare would continue to pay part and I pay the remainder.
4) Try Retuximad again to make sure it does not work; check initial dose, etc. to make sure I received a proper course of treatment. Retuximad, in those where it works, is effective for 12 – 18 months. Then another course can be given.
5) Seek outside source of medication where cheaper, such as China where it may cost 1/3 as much.
6) Does Canadian Medicare give lifelong treatment – and move there?
7) Dr. Edgar mentioned replacement with an immuno-suppressant, such as Imuran. However, this depresses the whole immune system making you more susceptible to infections. I, also, heard that Imuran increases your risk for cancer (?).
8) Is there some other treatment in research or on trail that could be tried?
9) Other?
Sunday, February 21, 2010
Update on IVIG Treatment for Peripheral Neuropathy
My last update, 10/25/09, was just after I had received my second infusion of IVIG. I received a third dose 4 weeks later in November. I received 30 g of IVIG each day times 2 for a total dose of 60g. I then met with my Neurologist, Dr. Edgar to evaluate this 3 month treatment period.
It was clear that the IVIG helped my peripheral neuropathy with about 50% improvement in the numbness and tingling and, perhaps, 10-20% improvement in balance and gait. Improvement was noted about 9 days after the infusion. Unfortunately, my symptoms regressed after the third week from infusion. I was told that the effect would last 3 – 4 weeks so this was no surprise.
We then decided to try 30 g x 1 day (half the dose I previously received) but every 3weeks instead of every 4 weeks. Unfortunately, this half dose had no noticeable effect whatever. So, we are now looking at receiving 60 g in a single dose every 3 weeks. I received this treatment on 2/19 with no ill effects and we will go for 3 months and again re-evaluate the situation.
It was clear that the IVIG helped my peripheral neuropathy with about 50% improvement in the numbness and tingling and, perhaps, 10-20% improvement in balance and gait. Improvement was noted about 9 days after the infusion. Unfortunately, my symptoms regressed after the third week from infusion. I was told that the effect would last 3 – 4 weeks so this was no surprise.
We then decided to try 30 g x 1 day (half the dose I previously received) but every 3weeks instead of every 4 weeks. Unfortunately, this half dose had no noticeable effect whatever. So, we are now looking at receiving 60 g in a single dose every 3 weeks. I received this treatment on 2/19 with no ill effects and we will go for 3 months and again re-evaluate the situation.
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