This is in reaponse to a message from Vic:
There is a large CIDP group on Facebook. There is also http://www.gbs-cidp.org/index.html
There are various treatments. Work for some. Not for others. Stem cell therapy is very much the last resort of treatment.
I know some, like me, minimally afflicted at the moment. And I know some who have a nasty progressive CIDP which reminds me greatly of ALS/Lou Gehrig's Disease in the way it debilitates.
Yes, I surely do understand the pain ... electric shocks/zingers, screaming quads, mushy grape feeling toes, etc.
If your friend is without health insurance, the best option would be Medicaid, for now at least. Should he be one with severe CIDP, he will be able to file for Social Security Disability [ which is different from SSI, which is SS Suplemental Income, which he could apply for now ].
I wish him, and you, the very best of outcomes. Do please keep in touch.
Sunday, August 7, 2011
Tuesday, August 17, 2010
new article and new research ...
7% of general population has Restless Leg Syndrome
40% of CIDP patients have Restless Leg Syndrome
Aug 15
"Prevalence of RLS in CIDP was ascertained by face-to-face interview using validated criteria and compared with that in 28 age-and gender-matched controls. Eleven (39.3%) CIDP patients were diagnosed with RLS, compared with 2 (7.1%) controls (p <0.01). A significant correlation was ascertained between presence of RLS and lower limb weakness, functional disability, and summated compound muscle action potential (CMAP). The prevalence of RLS in CIDP was significantly higher than in controls in our study population, approaching 40%.
Screening for RLS in CIDP patients may be appropriate, particularly in those with weakness, disability, and motor axonal loss in the lower limbs," wrote Y.A. Rajabally and colleagues, University Hospital, Department of Neurology.
The researchers concluded: "Our findings may otherwise suggest the existence of peripheral components to the pathophysiology of RLS in patients with CIDP."
Rajabally and colleagues published their study in Muscle & Nerve (Restless legs syndrome in chronic inflammatory demyelinating polyneuropathy. Muscle & Nerve, 2010;42(2):252-6).
For additional information, contact Y.A. Rajabally, Leicester General Hospital, Dept. of Neurology, Neuromuscular Clinic, University Hospitals of Leicester, Leicester LE5 4PW, UK.
(c) 2010 Health & Medicine Week via NewsRx.com
I'm one who had problems with RLS prior to being diagnosed with CIDP. The meds used for either/both aren't tolerated by me. Nasty side effects. ( no details ... too gross ) I can wait until the RLS starts and take 1/2 a Vicodin, which I've done from "stash" leftover from surgeries, but that's gone and my neuro won't prescribe "narcotics". So -- I'm between a rock and a hard place.
__________________
7% of general population has Restless Leg Syndrome
40% of CIDP patients have Restless Leg Syndrome
Aug 15
"Prevalence of RLS in CIDP was ascertained by face-to-face interview using validated criteria and compared with that in 28 age-and gender-matched controls. Eleven (39.3%) CIDP patients were diagnosed with RLS, compared with 2 (7.1%) controls (p <0.01). A significant correlation was ascertained between presence of RLS and lower limb weakness, functional disability, and summated compound muscle action potential (CMAP). The prevalence of RLS in CIDP was significantly higher than in controls in our study population, approaching 40%.
Screening for RLS in CIDP patients may be appropriate, particularly in those with weakness, disability, and motor axonal loss in the lower limbs," wrote Y.A. Rajabally and colleagues, University Hospital, Department of Neurology.
The researchers concluded: "Our findings may otherwise suggest the existence of peripheral components to the pathophysiology of RLS in patients with CIDP."
Rajabally and colleagues published their study in Muscle & Nerve (Restless legs syndrome in chronic inflammatory demyelinating polyneuropathy. Muscle & Nerve, 2010;42(2):252-6).
For additional information, contact Y.A. Rajabally, Leicester General Hospital, Dept. of Neurology, Neuromuscular Clinic, University Hospitals of Leicester, Leicester LE5 4PW, UK.
(c) 2010 Health & Medicine Week via NewsRx.com
I'm one who had problems with RLS prior to being diagnosed with CIDP. The meds used for either/both aren't tolerated by me. Nasty side effects. ( no details ... too gross ) I can wait until the RLS starts and take 1/2 a Vicodin, which I've done from "stash" leftover from surgeries, but that's gone and my neuro won't prescribe "narcotics". So -- I'm between a rock and a hard place.
__________________
Sunday, June 20, 2010
Finally!!!
In today's Parade magazine ... finally! ... an admission from the medical establishment ...
"Many people know that cancer can cause profound tiredness, but they may not realize that fatigue can persist in some survivors for years. 'We're not entirely sure, but it may be due to unchecked inflammation in the body' says Dr. Patricia Ganz, a professor at UCLA School of Medicine.
"Treatment could possibly push the immune system into overdrive, and in certain patients the resulting inflammation could increase fatigue 'as if the body were constantly fighting off a bad flu'."
And that immune system response could manifest in many ways, among them, of course, CIDP.
"Many people know that cancer can cause profound tiredness, but they may not realize that fatigue can persist in some survivors for years. 'We're not entirely sure, but it may be due to unchecked inflammation in the body' says Dr. Patricia Ganz, a professor at UCLA School of Medicine.
"Treatment could possibly push the immune system into overdrive, and in certain patients the resulting inflammation could increase fatigue 'as if the body were constantly fighting off a bad flu'."
And that immune system response could manifest in many ways, among them, of course, CIDP.
Saturday, June 19, 2010
sorry! i've been remiss in posting...
I've just found another blog, a good one: neuropathycaregivers.blogspot.com
I've been relatively stable for quite awhile now. But I've suffered one of the side effects of gabapentin: diarrhea. I had been taking gabapentin t.i.d. Neuro said to use Imodium. Internist was aghast. I cut out all fresh veggies. No help there. So I cut back on the gabapentin and that's kept the diarrhea manageable, that and very small salads. But with the cutback came the RLS -- big time! On the nights when that's really nasty, I cut in half a Vicodin I got from my daughter ( dental work for her ... she didn't use the med ) and that takes the edge off the RLS after 10-15 minutes.
I have an appointment with the neuro next week. I'll see what she says, though I doubt much will change.
Pinpricks in toes are kept at bay, as are the electric zingers in the hands. Thighs still burn. I notice less strength in my legs and arms. Am looking into a stationary bike ... I wonder if I'd use it faithfully?
Oh yes, and my toes feel like squishy grapes sitting on the ends of my feet. I have to laugh at that. : )
I've been relatively stable for quite awhile now. But I've suffered one of the side effects of gabapentin: diarrhea. I had been taking gabapentin t.i.d. Neuro said to use Imodium. Internist was aghast. I cut out all fresh veggies. No help there. So I cut back on the gabapentin and that's kept the diarrhea manageable, that and very small salads. But with the cutback came the RLS -- big time! On the nights when that's really nasty, I cut in half a Vicodin I got from my daughter ( dental work for her ... she didn't use the med ) and that takes the edge off the RLS after 10-15 minutes.
I have an appointment with the neuro next week. I'll see what she says, though I doubt much will change.
Pinpricks in toes are kept at bay, as are the electric zingers in the hands. Thighs still burn. I notice less strength in my legs and arms. Am looking into a stationary bike ... I wonder if I'd use it faithfully?
Oh yes, and my toes feel like squishy grapes sitting on the ends of my feet. I have to laugh at that. : )
Saturday, March 20, 2010
T-cells and CIDP?
I do not understand all of this, but my friend had AIDS and T-Cells were a huge issue for him. What does it mean for us? I will be sure to ask my neuro when next I see her.
Centre for Clinical Research, The Royal Brisbane and Women’s Hospital, The University of Queensland, Herston Road, Herston, Queensland 4029, Australia
Received 8 April 2009; accepted 6 July 2009. Available online 25 January 2010.
Abstract
Guillain-Barré syndrome (GBS) is an acquired demyelinating neuropathy, characterized by infiltration of peripheral nerves with macrophages and T cells. There have been reports of antibodies to glycolipids in GBS. We have previously found T cell reactivity to glycolipids in patients with the demyelinating form of GBS. This study was performed to characterize the cytokines produced by these T cells. Peripheral blood lymphocytes from patients with GBS, chronic inflammatory demyelinating polyradiculoneuropathy, healthy control patients and other neuropathies were incubated with the ganglioside GM1 and transferred to enzyme-linked immunospot plates. The average number per well of spot-forming cells (SFC) in the absence of antigen was counted. The average spontaneous SFC number was subtracted from the average SFC number in the presence of GM1, to produce a corrected SFC. There was significantly increased production of interferon-gamma but not interleukin-5 in response to stimulation with the ganglioside GM1. This could indicate that SFC have a role in pathogenesis of disease.
Centre for Clinical Research, The Royal Brisbane and Women’s Hospital, The University of Queensland, Herston Road, Herston, Queensland 4029, Australia
Received 8 April 2009; accepted 6 July 2009. Available online 25 January 2010.
Abstract
Guillain-Barré syndrome (GBS) is an acquired demyelinating neuropathy, characterized by infiltration of peripheral nerves with macrophages and T cells. There have been reports of antibodies to glycolipids in GBS. We have previously found T cell reactivity to glycolipids in patients with the demyelinating form of GBS. This study was performed to characterize the cytokines produced by these T cells. Peripheral blood lymphocytes from patients with GBS, chronic inflammatory demyelinating polyradiculoneuropathy, healthy control patients and other neuropathies were incubated with the ganglioside GM1 and transferred to enzyme-linked immunospot plates. The average number per well of spot-forming cells (SFC) in the absence of antigen was counted. The average spontaneous SFC number was subtracted from the average SFC number in the presence of GM1, to produce a corrected SFC. There was significantly increased production of interferon-gamma but not interleukin-5 in response to stimulation with the ganglioside GM1. This could indicate that SFC have a role in pathogenesis of disease.
Wednesday, February 3, 2010
something promising -- finally !!
well nigh unto a miracle, I'd say ...
there was nothing more than treating the beast prior to what this could mean.
__________
Blood-nerve barrier model allows closer look at diseases affecting peripheral nerves
HOUSTON -- (February 2, 2010) -- The cells regarded as the "gate-keepers" of the barrier between blood circulation and the peripheral nerves have been hard to study and even harder to isolate. However, researchers at Baylor College of Medicine have created a laboratory model that will enable scientists to study a wide variety of diseases affecting peripheral nerves.
They describe their model in the January 2010 issue of the Journal of Neuropathology and Experimental Neurology.
Specialized vascular system
"The barrier is known as the blood-nerve barrier and it regulates how peripheral nerves work. Peripheral nerves connect the central nervous system to the muscles of the limbs and sensory organs. This 'gate keeper' is a specialized vascular system that allows for proper nerve function by enabling the necessary nutrients in blood to flow in and unwanted material out," said Dr. Eroboghene E. Ubogu, assistant professor of neurology and director of the Neuromuscular Immunopathology Research Laboratory at BCM.
Ubogu, who is the senior author on the study, added that very little is known about how the human blood-nerve barrier normally works or how it is altered when the peripheral nerves are diseased. The cells that make up the blood-nerve barrier are hard to study and extract because they are surrounded by a large amount of connective tissue, are present deep within the innermost layers and represent less than 1 percent of all cells found in peripheral nerves.
Ubogu and his research colleagues, including lead author research assistant Nejla Yosef and Dr. Robin H. Xia, a postdoctoral research associate, both in the department of neurology at BCM, began by isolating these specialized blood vessel cells from the sciatic nerve, the largest nerve in the body found at the back of the thighs.
"It started as trial and error since methods for this type of work had not been outlined for human peripheral nerves," Ubogu said. "We looked at how other blood vessel and nerve cells were isolated from humans and other animals and modified those protocols until we achieved our goal."
It took more than six tries of a process involving multiple steps before Ubogu and his team were successful in isolating the blood vessel cells that make up the blood-nerve barrier.
Prior to developing the blood-nerve barrier model, Ubogu and his colleagues used several laboratory methods to verify that these specialized blood vessel cells, called primary human endoneurial endothelial cells, were the cells that formed blood vessels within the innermost layer of peripheral nerves.
Better view of diseases
These cells were grown in laboratory dishes, and used to develop a blood-nerve barrier model system that behaves very similar to what is seen or expected in humans. This model will allow researchers to study how substances dissolved in the bloodstream, large molecules, drugs, microorganisms and white blood cells are able to enter or exit the peripheral nerves and why their movements may be restricted or permitted in times of health or disease.
"We can now see the gate, and if we understand how it is locked, opened and closed, we may be able to treat certain nerve diseases more effectively or even prevent them," said Ubogu.
This model will give researchers a better view of how diseases such as HIV and diabetes affect the peripheral nervous system. Guillain-Barré syndrome and chronic demyelinating inflammatory polyneuropathy (peripheral nerve inflammation that leads to a loss of movement or sensation) are also disorders that can be further investigated because of this research. A better understanding of how drugs get into peripheral nerves is also possible with this model.
"I would like research collaborations to grow from these findings," Ubogu said. "The hope is that labs already studying peripheral nerve function and disease will be able to use the model to further their work."
All researchers are with the Neuromuscular Immunopathology Research Laboratory at BCM.
The study was supported Guillain-Barré Syndrome/Chronic Inflammatory Demyelinating Polyradiculoneuropathy Foundation International Research Grant and by the BCM New Investigator Start-Up Program.
there was nothing more than treating the beast prior to what this could mean.
__________
Blood-nerve barrier model allows closer look at diseases affecting peripheral nerves
HOUSTON -- (February 2, 2010) -- The cells regarded as the "gate-keepers" of the barrier between blood circulation and the peripheral nerves have been hard to study and even harder to isolate. However, researchers at Baylor College of Medicine have created a laboratory model that will enable scientists to study a wide variety of diseases affecting peripheral nerves.
They describe their model in the January 2010 issue of the Journal of Neuropathology and Experimental Neurology.
Specialized vascular system
"The barrier is known as the blood-nerve barrier and it regulates how peripheral nerves work. Peripheral nerves connect the central nervous system to the muscles of the limbs and sensory organs. This 'gate keeper' is a specialized vascular system that allows for proper nerve function by enabling the necessary nutrients in blood to flow in and unwanted material out," said Dr. Eroboghene E. Ubogu, assistant professor of neurology and director of the Neuromuscular Immunopathology Research Laboratory at BCM.
Ubogu, who is the senior author on the study, added that very little is known about how the human blood-nerve barrier normally works or how it is altered when the peripheral nerves are diseased. The cells that make up the blood-nerve barrier are hard to study and extract because they are surrounded by a large amount of connective tissue, are present deep within the innermost layers and represent less than 1 percent of all cells found in peripheral nerves.
Ubogu and his research colleagues, including lead author research assistant Nejla Yosef and Dr. Robin H. Xia, a postdoctoral research associate, both in the department of neurology at BCM, began by isolating these specialized blood vessel cells from the sciatic nerve, the largest nerve in the body found at the back of the thighs.
"It started as trial and error since methods for this type of work had not been outlined for human peripheral nerves," Ubogu said. "We looked at how other blood vessel and nerve cells were isolated from humans and other animals and modified those protocols until we achieved our goal."
It took more than six tries of a process involving multiple steps before Ubogu and his team were successful in isolating the blood vessel cells that make up the blood-nerve barrier.
Prior to developing the blood-nerve barrier model, Ubogu and his colleagues used several laboratory methods to verify that these specialized blood vessel cells, called primary human endoneurial endothelial cells, were the cells that formed blood vessels within the innermost layer of peripheral nerves.
Better view of diseases
These cells were grown in laboratory dishes, and used to develop a blood-nerve barrier model system that behaves very similar to what is seen or expected in humans. This model will allow researchers to study how substances dissolved in the bloodstream, large molecules, drugs, microorganisms and white blood cells are able to enter or exit the peripheral nerves and why their movements may be restricted or permitted in times of health or disease.
"We can now see the gate, and if we understand how it is locked, opened and closed, we may be able to treat certain nerve diseases more effectively or even prevent them," said Ubogu.
This model will give researchers a better view of how diseases such as HIV and diabetes affect the peripheral nervous system. Guillain-Barré syndrome and chronic demyelinating inflammatory polyneuropathy (peripheral nerve inflammation that leads to a loss of movement or sensation) are also disorders that can be further investigated because of this research. A better understanding of how drugs get into peripheral nerves is also possible with this model.
"I would like research collaborations to grow from these findings," Ubogu said. "The hope is that labs already studying peripheral nerve function and disease will be able to use the model to further their work."
All researchers are with the Neuromuscular Immunopathology Research Laboratory at BCM.
The study was supported Guillain-Barré Syndrome/Chronic Inflammatory Demyelinating Polyradiculoneuropathy Foundation International Research Grant and by the BCM New Investigator Start-Up Program.
Tuesday, January 12, 2010
it's been awhile...
I've been doing quite well, really. But now my arms have lost strength, so muscle mass must be waning there, too. Today my thighs aren't just "burning", they're very very painful, with jabbing pains. So while I thought I was in a slight remission, and I probably was in such, I am now obviously relapsing. Not unexpected, I suppose, but I'd pushed it to the back of my mind.
Tuesday, November 24, 2009
Sunday, October 25, 2009
CIDP ... Rocky's blog
I copied this from Jenna's Lyme Blog ... some interesting info re the newest and most effective of the IVIg infusion agents. I need to keep this on hand ...
Gamunex is contraindicated in individuals with known anaphylactic or severe systemic response to Immune Globulin (Human). Immune Globulin Intravenous (Human) products have been reported to be associated with renal dysfunction, acute renal failure, osmotic nephrosis and death.
Patients should be instructed to immediately report symptoms of decreased urine output, sudden weight gain, fluid retention/edema, and/or shortness of breath (which may suggest kidney damage) to their physicians. While these reports of renal dysfunction and acute renal failure have been associated with the use of many of the licensed IGIV products, those containing sucrose as a stabilizer accounted for a disproportionate share of the total number does not contain sucrose.
Glycine, a natural amino acid, is used as a stabilizer.
There have been reports of noncardiogenic pulmonary edema, rare reports of hemolytic anemia, and very rare reports of aseptic meningitis in patients administered with IGIV. Thrombotic events have been reported in association with IGIV. Patients at risk may include those with a history of atherosclerosis, multiple cardiovascular risk factors, advanced age, impaired cardiac output, and/or known or suspected hyperviscosity. The most common side effects noted during clinical trials included headache, vomiting, fever, nausea, rash, and back pain. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
As with all plasma-derived therapeutics, the potential to transmit infectious agents cannot be totally eliminated.
Gamunex is contraindicated in individuals with known anaphylactic or severe systemic response to Immune Globulin (Human). Immune Globulin Intravenous (Human) products have been reported to be associated with renal dysfunction, acute renal failure, osmotic nephrosis and death.
Patients should be instructed to immediately report symptoms of decreased urine output, sudden weight gain, fluid retention/edema, and/or shortness of breath (which may suggest kidney damage) to their physicians. While these reports of renal dysfunction and acute renal failure have been associated with the use of many of the licensed IGIV products, those containing sucrose as a stabilizer accounted for a disproportionate share of the total number does not contain sucrose.
Glycine, a natural amino acid, is used as a stabilizer.
There have been reports of noncardiogenic pulmonary edema, rare reports of hemolytic anemia, and very rare reports of aseptic meningitis in patients administered with IGIV. Thrombotic events have been reported in association with IGIV. Patients at risk may include those with a history of atherosclerosis, multiple cardiovascular risk factors, advanced age, impaired cardiac output, and/or known or suspected hyperviscosity. The most common side effects noted during clinical trials included headache, vomiting, fever, nausea, rash, and back pain. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
As with all plasma-derived therapeutics, the potential to transmit infectious agents cannot be totally eliminated.
Thursday, October 15, 2009
you don't need to sign in ...
If you want to respond to a Rocky's blog, you only need use the "comment" section at the end of whichever post you're responding to. You can use your name ... or you can respond as anonymous. Please don't let the info at the top of the page deter you from commenting.
Thanks!
Thanks!
Saturday, October 10, 2009
CIDP ... Rocky's blog
Well, it's been awhile. Which means things have been going along pretty much 'as usual'.
Not any more, unfortunately.
I've had joint pain in my right hand. I thought that was probably a result of some sanding I'd been doing on a cane I wanted to refinish. Well, no ... it's the disease. After checking with others in the same boat as am I, I find that gnarly rheumatic looking hands are not at all unusual.
So I have more of that to 'look forward to'. Right hand, of course ... me who is so terribly right-hand dominant. Bummer!
But there's more ... as the TV pitchmen always say.
Now the numb shins are moving upward. Well, not the shins, of course! : ) The shins and outward sides of the lower legs are numb. Now, along with the "exercise burn" on the fronts of my thighs, there is numbness on the outward sides.
I have been in touch with a fellow in North Carolina whose CIDP is similar to mine, though his is somewhat more advanced than mine and has been stable for something like 17 years.
He stresses movement, gentle movement ... yoga, for instance. Something to keep the muscles and tendons from shrinking/tightening and making everything even worse. Makes sense. I must check out the pool therapy for arthritics offered by the YMCA. This, of course, means that I must find the extra funds and I must manage somehow to keep either my old car or some other used car that'll keep going and get me there as the YMCA is some distance from me.
Anyway, that's where we are now ...
Oh ... almost forgot ... also the dizziness at times. Apparently that happens as well, though I'd prefer to lay the blame on the medication, the neurontin.
Not any more, unfortunately.
I've had joint pain in my right hand. I thought that was probably a result of some sanding I'd been doing on a cane I wanted to refinish. Well, no ... it's the disease. After checking with others in the same boat as am I, I find that gnarly rheumatic looking hands are not at all unusual.
So I have more of that to 'look forward to'. Right hand, of course ... me who is so terribly right-hand dominant. Bummer!
But there's more ... as the TV pitchmen always say.
Now the numb shins are moving upward. Well, not the shins, of course! : ) The shins and outward sides of the lower legs are numb. Now, along with the "exercise burn" on the fronts of my thighs, there is numbness on the outward sides.
I have been in touch with a fellow in North Carolina whose CIDP is similar to mine, though his is somewhat more advanced than mine and has been stable for something like 17 years.
He stresses movement, gentle movement ... yoga, for instance. Something to keep the muscles and tendons from shrinking/tightening and making everything even worse. Makes sense. I must check out the pool therapy for arthritics offered by the YMCA. This, of course, means that I must find the extra funds and I must manage somehow to keep either my old car or some other used car that'll keep going and get me there as the YMCA is some distance from me.
Anyway, that's where we are now ...
Oh ... almost forgot ... also the dizziness at times. Apparently that happens as well, though I'd prefer to lay the blame on the medication, the neurontin.
Saturday, September 26, 2009
CIDP ... Rocky's blog
Have been remiss about posting. Have added Imodium to my regimen ... whenever the neurontin/gabapentin starts to add its unwelcome side effect, take an Imodium with the morning's gabapentin. So far -- so good. Keeping fingers crossed.
So it's take a pill, then take another pill to ward off the side effects of the first pill.
What a melluvahess this is!
But I'm in so much better shape than so many others that I can only count myself as being very very lucky.
At this moment there is a young woman, San Francisco cop -- on medical leave, of course, whose CIDP was so bad that she should've had a bone marrow transplant. Since insurances don't pay for that sort of thing and her fellow cops and her friends and family couldn't come up with that huge amount, she and her docs decided to go for the next best thing ( also not paid for by insurance ) ... jolting her with heavy heavy chemo, then harvesting her own stem cells, more meds, then return her stem cells ... and pray.
Yes, I am lucky.
So it's take a pill, then take another pill to ward off the side effects of the first pill.
What a melluvahess this is!
But I'm in so much better shape than so many others that I can only count myself as being very very lucky.
At this moment there is a young woman, San Francisco cop -- on medical leave, of course, whose CIDP was so bad that she should've had a bone marrow transplant. Since insurances don't pay for that sort of thing and her fellow cops and her friends and family couldn't come up with that huge amount, she and her docs decided to go for the next best thing ( also not paid for by insurance ) ... jolting her with heavy heavy chemo, then harvesting her own stem cells, more meds, then return her stem cells ... and pray.
Yes, I am lucky.
Monday, September 14, 2009
CIDP ... Rocky's blog
No, b.i.d. doesn't work. Mercy, but it certainly doesn't work! -- or works too well, however one wants to look at it. Cutting back to one gabapentin at night won't hold off the RLS. I'd try to live with the pinpricks and electric shocks and burning thighs and all if I could just have sleep ...
So I've e-mailed my neuro asking what can we do now? I didn't call. This is Monday and I'm sure there are serious problems to be addressed on a Monday.
No more gabapentin for me. I don't want Lyrica or Cymbalta as they have their own side effects.
I still have one-half of a Vicodin left over from 2 years ago when I had the reconstruction after mastectomies. Will try to 'make do' with 1 ibuprofen and 1 acetaminophen, which doesn't always work. Can I cut that 1/2 Vicodin in two? Wonder how well a one-fourth Vicodin works?
Are we having fun yet? NOoooooooooooooooooo, darnit.
So I've e-mailed my neuro asking what can we do now? I didn't call. This is Monday and I'm sure there are serious problems to be addressed on a Monday.
No more gabapentin for me. I don't want Lyrica or Cymbalta as they have their own side effects.
I still have one-half of a Vicodin left over from 2 years ago when I had the reconstruction after mastectomies. Will try to 'make do' with 1 ibuprofen and 1 acetaminophen, which doesn't always work. Can I cut that 1/2 Vicodin in two? Wonder how well a one-fourth Vicodin works?
Are we having fun yet? NOoooooooooooooooooo, darnit.
Friday, September 11, 2009
CIDP ... Rocky's blog
I cut back on the gabapentin. Instead of 300 mg. t.i.d., just one capsule at bedtime. I'd hoped that would hold the RLS at bay.
It didn't.
3 hours into the night, squirming and thrashing about, I got up and took my "fix" regimen of 1 acetaminophen and 1 ibuprofen. Also chewed one fiber tablet, which is something someone on the GBS/CIDP forum had suggested. Seemed strange, but -- what the heck -- might as well give it a try, too.
It wasn't just the RLS. The "burn" of my thighs was back in full force rather than subdued as it had been with the higher dose gabapentin.
So now it's one 300 mg. capsule twice a day. And a fiber tablet twice a day.
What is it Jamie Lee Curtis hawks on TV? ... oh yes, Activia ... ; )
I hate this disease!
It didn't.
3 hours into the night, squirming and thrashing about, I got up and took my "fix" regimen of 1 acetaminophen and 1 ibuprofen. Also chewed one fiber tablet, which is something someone on the GBS/CIDP forum had suggested. Seemed strange, but -- what the heck -- might as well give it a try, too.
It wasn't just the RLS. The "burn" of my thighs was back in full force rather than subdued as it had been with the higher dose gabapentin.
So now it's one 300 mg. capsule twice a day. And a fiber tablet twice a day.
What is it Jamie Lee Curtis hawks on TV? ... oh yes, Activia ... ; )
I hate this disease!
Tuesday, September 8, 2009
neurontin/gabapentin side effects?
Okay, so the gabapentin has lessened the pinpricks and electrical shocks. I can live with that if need be, I hope. It has also removed the overwhelming fatigue that set in every day mid-afternoon. And that was so welcome! The med, does, however, carry side effects. Constipation/diarrhea would be one of the many.
Since I've been on an "eat more fiber" kick for more years than I care to remember, the side effect I experienced was decidedly not unwelcome. You get the idea, I'm sure. ;)
But now the side effects have caught up with me. I'm going to have to do away with the gabapentin, I suspect. Maybe just a dose at night to relieve the RLS? And help me get to sleep?
Anything else anyone has tried that's alleviated the pinpricks, electric shocks, RLS and fatigue?
Other than IVIg,I suppose, since I'd have to travel about 300 miles round-trip each day of IVIg treatment. And then there's the matter of ... is M/C going to pay? Gee whiz! Are we having fun yet?
Since I've been on an "eat more fiber" kick for more years than I care to remember, the side effect I experienced was decidedly not unwelcome. You get the idea, I'm sure. ;)
But now the side effects have caught up with me. I'm going to have to do away with the gabapentin, I suspect. Maybe just a dose at night to relieve the RLS? And help me get to sleep?
Anything else anyone has tried that's alleviated the pinpricks, electric shocks, RLS and fatigue?
Other than IVIg,I suppose, since I'd have to travel about 300 miles round-trip each day of IVIg treatment. And then there's the matter of ... is M/C going to pay? Gee whiz! Are we having fun yet?
Saturday, September 5, 2009
CIDP ... Rocky's blog
Have I settled into a "plateau"?
I like that term. Stole it from another CIDP person. : )
I'm not seeming to get any worse. If anything, the neurontin/gabapentin is holding some of the pinpricks and cattle prod electricity at bay. Numbness is the same.
So I'd consider this a plateau ... and I'm going to enjoy it fully for however long it lasts! Yes indeed.
I like that term. Stole it from another CIDP person. : )
I'm not seeming to get any worse. If anything, the neurontin/gabapentin is holding some of the pinpricks and cattle prod electricity at bay. Numbness is the same.
So I'd consider this a plateau ... and I'm going to enjoy it fully for however long it lasts! Yes indeed.
Saturday, August 29, 2009
from HemOnc Today, clinical news from the oncology/hematology web site:
"The researchers confirmed a significant association in 14 of the 75 previously reported disease associations. Five of the 14 diseases were known to evolve from MGUS — multiple myeloma, amyloidosis, lymphoproliferative disorders, macroglobulinemia and other plasma cell proliferative disorders, according to the researchers. Important associations included hip and vertebral fractures, osteoporosis and hypercalcemia; these disorders were significantly increased with MGUS, even without multiple myeloma.
"Associations between MGUS and chronic inflammatory demyelinating neuropathy (RR=5.9; 95% CI, 1.2-28.4) and autonomic neuropathy were also confirmed."
-- monoclonal gammopathy of undetermined significance (MGUS) --
from the Mayo Clinic:
"A monoclonal gammopathy indicates the presence of abnormal levels of a protein in the blood. The protein is produced by a group of cells in the bone marrow called plasma cells. Plasma cells are normally found in the bone marrow and represent approximately 1 percent of all marrow cells. They produce the antibodies that help the body fight infection. Abnormal proteins circulating in the blood are not rare. Monoclonal gammopathy can occur in both sexes and in people of all backgrounds and occupations. In about 80 percent of cases, the abnormal protein does not cause any problems. However, over time, 20 percent of people will experience an increase in the amount of abnormal protein in their blood, which may develop into a more serious condition, including some forms of cancer."
So folks with CIDP are more likely to have this abnormal protein. And it is something that could possibly develop into some cancers. If people with breast, ovarian or lung cancers are more likely to develop CIDP, which comes first? The chicken? Or the egg? -- The cancer? The CIDP? The abnormal protein?
"The researchers confirmed a significant association in 14 of the 75 previously reported disease associations. Five of the 14 diseases were known to evolve from MGUS — multiple myeloma, amyloidosis, lymphoproliferative disorders, macroglobulinemia and other plasma cell proliferative disorders, according to the researchers. Important associations included hip and vertebral fractures, osteoporosis and hypercalcemia; these disorders were significantly increased with MGUS, even without multiple myeloma.
"Associations between MGUS and chronic inflammatory demyelinating neuropathy (RR=5.9; 95% CI, 1.2-28.4) and autonomic neuropathy were also confirmed."
-- monoclonal gammopathy of undetermined significance (MGUS) --
from the Mayo Clinic:
"A monoclonal gammopathy indicates the presence of abnormal levels of a protein in the blood. The protein is produced by a group of cells in the bone marrow called plasma cells. Plasma cells are normally found in the bone marrow and represent approximately 1 percent of all marrow cells. They produce the antibodies that help the body fight infection. Abnormal proteins circulating in the blood are not rare. Monoclonal gammopathy can occur in both sexes and in people of all backgrounds and occupations. In about 80 percent of cases, the abnormal protein does not cause any problems. However, over time, 20 percent of people will experience an increase in the amount of abnormal protein in their blood, which may develop into a more serious condition, including some forms of cancer."
So folks with CIDP are more likely to have this abnormal protein. And it is something that could possibly develop into some cancers. If people with breast, ovarian or lung cancers are more likely to develop CIDP, which comes first? The chicken? Or the egg? -- The cancer? The CIDP? The abnormal protein?
Thursday, August 27, 2009
CIDP ... Rocky's blog
There's a new clinical trial looking for subjects. If I lived in Oregon, I would surely sign up. It seems almost too good to be true -- or effective. Alpha Lipoic Acid. Ordinary and found in foods, but in a lower dose than what the Oregon Health and Science University is proposing. I will definitely try to follow this. It looks like they've been seeking subjects for several months already.
"Although corticosteroids, plasma exchange, and intravenous immunoglobulin (IVIg) reduce impairment caused by CIDP at least temporarily and can be used as a first-line treatments, they are not ideal for long-term treatment because of serious side effects and cost. Alpha lipoic acid (LA) is an antioxidant that also possesses anti-immune activity. It is effective in treating diabetic neuropathy. It is also promising in treating patients with multiple sclerosis.
"Subjects will be started on a single daily dose of 600 mg of alpha lipoic acid or placebo for the first 4 weeks and then increased to 1200 mg for the remainder of the study.
"Although corticosteroids, plasma exchange, and intravenous immunoglobulin (IVIg) reduce impairment caused by CIDP at least temporarily and can be used as a first-line treatments, they are not ideal for long-term treatment because of serious side effects and cost. Alpha lipoic acid (LA) is an antioxidant that also possesses anti-immune activity. It is effective in treating diabetic neuropathy. It is also promising in treating patients with multiple sclerosis.
"Subjects will be started on a single daily dose of 600 mg of alpha lipoic acid or placebo for the first 4 weeks and then increased to 1200 mg for the remainder of the study.
Saturday, August 22, 2009
CIDP ... Rocky's blog
Found out 89% of people like me can't handle heat well. 69% don't handle cold well.
So that likely has something to do with the drenching sweats I have off and on, though it's sensory and not necessarily to do with temps. I've heard from others who also have to deal with the drenching sweats.
This is all a bit confusing. But I'm going to forget about my neurologist wanting to do a sleep study!
So that likely has something to do with the drenching sweats I have off and on, though it's sensory and not necessarily to do with temps. I've heard from others who also have to deal with the drenching sweats.
This is all a bit confusing. But I'm going to forget about my neurologist wanting to do a sleep study!
Tuesday, August 18, 2009
CIDP ... Rocky's blog
Need to add a tidbit here ...
Somewhere along the line I saw an explanation of "the 3 sisters diseases" ...
MS, multiple sclerosis ... attacks the autonomic nervous system ... involuntary
CIDP, chronic inflammatory demyelinating polyneuropathy ... attacks the peripheral nervous system ... the things our brain asks our bodies to do.
ALS, amyotrophic lateral sclerosis ( Lou Gehrig's Disease ) ... attacks both autonomic and peripheral nervous systems.
If I'm going to have to have one of the nasties of the hundreds and hundreds of auto-immune diseases, I suppose I'm "lucky"? Though it is progressive and that's a scary thought.
Somewhere along the line I saw an explanation of "the 3 sisters diseases" ...
MS, multiple sclerosis ... attacks the autonomic nervous system ... involuntary
CIDP, chronic inflammatory demyelinating polyneuropathy ... attacks the peripheral nervous system ... the things our brain asks our bodies to do.
ALS, amyotrophic lateral sclerosis ( Lou Gehrig's Disease ) ... attacks both autonomic and peripheral nervous systems.
If I'm going to have to have one of the nasties of the hundreds and hundreds of auto-immune diseases, I suppose I'm "lucky"? Though it is progressive and that's a scary thought.
Subscribe to:
Posts (Atom)
