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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Diagnosed with stiff man syndrome?

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Unread 01-25-2013, 07:54 PM   #11
fmichael
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Question Did your doctor tell you about the FDA-mandated warnings on Rituxan?

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Originally Posted by debbiehub View Post
Hey mike,

Thanks for your input..here's the thing. I have full body muscle atrophy worsening each day. My legs r getting so thin and weak and arms r fatiguing quickly. So if I do have some autoimmune disease maybe the retuxemb iv will halt it,,,at the rate I'm going I have to try something....not sure what else I can do?

Ty
Deb
Debbie -

I completely understand. I know rheumatologists who regularly prescribe Remicade (Infliximab) for CRPS and understand that Rituxan (Rituximab) is just one more step down the same path. Nevertheless, I choose not to try Remicade because of the possible side effects (lymphoma) where I already carry a precursor to multiple myeloma, and my "quality of life" even with CRPS was not so dire that I was willing to roll the dice. But from everything I've heard from you in the last few months, your situation is pretty miserable as is.

That said, may I ask if your MD has fully advised you of the current FDA-mandated "Black Box Warning" for Rituxan? I ask only because - at least as of the last time I checked - it beats that of Remicade by a fair piece:

Some people who received rituximab experienced severe reactions to the medication. Some of these people died within 24 hours after they received a dose of rituximab. Most of these deaths happened after the first dose of rituximab. Tell your doctor if you have or have ever had chronic lymphocytic leukemia (CLL; a type of cancer that begins in the white blood cells), mantle cell lymphoma (a fast-growing cancer that begins in the cells of the immune system), an irregular heartbeat, or heart or lung disease. If you have any of these conditions, or if you are female, there is a greater chance that you will experience a serious reaction to rituximab. If you experience any of the following symptoms, tell your doctor or other health care provider immediately: hives; swelling of the lips, tongue, or throat; difficulty breathing or swallowing; dizziness; fainting; shortness of breath, wheezing; blurred vision; headache; pounding or irregular heartbeat; fast or weak pulse; loss of consciousness, fast breathing; pale or bluish skin; pain in the chest that may spread to other parts of the upper body; weakness; excessive tiredness; sweating; or anxiety.

When rituximab is used to treat non-Hodgkin's lymphoma (NHL; a type of cancer that begins in a type of white blood cells that normally fight infection) it may cause a condition called tumor lysis syndrome (TLS; a group of symptoms caused by the fast breakdown of cancer cells). TLS may cause kidney failure and the need for dialysis treatment. Tell your doctor if you are also receiving cisplatin (Platinol). If you notice that you need to urinate less often than usual or that you produce less urine than usual, tell your doctor immediately.

Rituximab has caused severe skin reactions. These reactions have caused death. If you experience any of the following symptoms, tell your doctor immediately: painful sores, ulcers, blisters, rash, or peeling skin.

Some people who received rituximab developed progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability) during or after their treatment. If you experience any of the following symptoms, call your doctor immediately: difficulty thinking clearly or walking, loss of strength, vision problems, or any other unusual symptoms that develop suddenly.

Talk to your doctor about the risks of using rituximab.
[Emphasis added and 'right on' re the last sentence.]

http://www.nlm.nih.gov/medlineplus/d...s/a607038.html
So, at a minimum, I would STRONGLY recommend that, before initiating treatment, you be "worked up" for (1) chronic lymphocytic leukemia, (2) mantle cell lymphoma, (3) irregular heartbeat (sinus rhythm) - a simple EKG should due the trick - AND (4) "other" heart or lung diseases. This should probably include a simultaneous/concurrent "CT angiogram" and a CT scan of your lungs - which would at least minimize your radiation exposure - along with an echo-cardiogram and a pulmonary function study of some sort, to rule out asthma, etc.; I assume with your recent blood-work they've already ran a metabolic panel as well, just to check on your current kidney function, for whatever good that may do.

I do not mean to be alarmist, but the Black Box Warning for Rituxan is as heavy as anything I've ever read. So if it sounds like I'm suggesting what could turn into a two-day battery of essentially non-stop testing, it's because I am.

Mike
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Unread 01-26-2013, 09:36 AM   #12
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Originally Posted by fmichael View Post
Debbie -

I completely understand. I know rheumatologists who regularly prescribe Remicade (Infliximab) for CRPS and understand that Rituxan (Rituximab) is just one more step down the same path. Nevertheless, I choose not to try Remicade because of the possible side effects (lymphoma) where I already carry a precursor to multiple myeloma, and my "quality of life" even with CRPS was not so dire that I was willing to roll the dice. But from everything I've heard from you in the last few months, your situation is pretty miserable as is.

That said, may I ask if your MD has fully advised you of the current FDA-mandated "Black Box Warning" for Rituxan? I ask only because - at least as of the last time I checked - it beats that of Remicade by a fair piece:

Some people who received rituximab experienced severe reactions to the medication. Some of these people died within 24 hours after they received a dose of rituximab. Most of these deaths happened after the first dose of rituximab. Tell your doctor if you have or have ever had chronic lymphocytic leukemia (CLL; a type of cancer that begins in the white blood cells), mantle cell lymphoma (a fast-growing cancer that begins in the cells of the immune system), an irregular heartbeat, or heart or lung disease. If you have any of these conditions, or if you are female, there is a greater chance that you will experience a serious reaction to rituximab. If you experience any of the following symptoms, tell your doctor or other health care provider immediately: hives; swelling of the lips, tongue, or throat; difficulty breathing or swallowing; dizziness; fainting; shortness of breath, wheezing; blurred vision; headache; pounding or irregular heartbeat; fast or weak pulse; loss of consciousness, fast breathing; pale or bluish skin; pain in the chest that may spread to other parts of the upper body; weakness; excessive tiredness; sweating; or anxiety.

When rituximab is used to treat non-Hodgkin's lymphoma (NHL; a type of cancer that begins in a type of white blood cells that normally fight infection) it may cause a condition called tumor lysis syndrome (TLS; a group of symptoms caused by the fast breakdown of cancer cells). TLS may cause kidney failure and the need for dialysis treatment. Tell your doctor if you are also receiving cisplatin (Platinol). If you notice that you need to urinate less often than usual or that you produce less urine than usual, tell your doctor immediately.

Rituximab has caused severe skin reactions. These reactions have caused death. If you experience any of the following symptoms, tell your doctor immediately: painful sores, ulcers, blisters, rash, or peeling skin.

Some people who received rituximab developed progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability) during or after their treatment. If you experience any of the following symptoms, call your doctor immediately: difficulty thinking clearly or walking, loss of strength, vision problems, or any other unusual symptoms that develop suddenly.

Talk to your doctor about the risks of using rituximab.
[Emphasis added and 'right on' re the last sentence.]

http://www.nlm.nih.gov/medlineplus/d...s/a607038.html
So, at a minimum, I would STRONGLY recommend that, before initiating treatment, you be "worked up" for (1) chronic lymphocytic leukemia, (2) mantle cell lymphoma, (3) irregular heartbeat (sinus rhythm) - a simple EKG should due the trick - AND (4) "other" heart or lung diseases. This should probably include a simultaneous/concurrent "CT angiogram" and a CT scan of your lungs - which would at least minimize your radiation exposure - along with an echo-cardiogram and a pulmonary function study of some sort, to rule out asthma, etc.; I assume with your recent blood-work they've already ran a metabolic panel as well, just to check on your current kidney function, for whatever good that may do.

I do not mean to be alarmist, but the Black Box Warning for Rituxan is as heavy as anything I've ever read. So if it sounds like I'm suggesting what could turn into a two-day battery of essentially non-stop testing, it's because I am.

Mike
Thanks for your input. Yes, they have me going for bloodwork. cardiologist, and chest x-ray. I think my neuro is pretty up to date on this drug. he is a well known MS Doc....Its going to take a while to get insurance or donation from the manufacturer because it is an off label use.

Debbie
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Unread 01-26-2013, 12:33 PM   #13
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Quote:
Originally Posted by debbiehub View Post
Thanks for your input. Yes, they have me going for bloodwork. cardiologist, and chest x-ray. I think my neuro is pretty up to date on this drug. he is a well known MS Doc....Its going to take a while to get insurance or donation from the manufacturer because it is an off label use.

Debbie
Debbie -

Very happy to hear you're getting a good medical work-up before going on Rituxan.

Just curious. Has anyone explained to you how (or if) SPS is distinguish from dystonia? (The latter of which - even if relatively rare - is a still too frequent side-effect of CRPS?) From what I was reading last night, they both pretty much come out the same in the wash, including having strong GABA-genic components. Then too, neither appears to be associated with muscle wasting, whether or not due to appetite suppression, suggesting the operation of another player, such as cachexia, very possibly induced by the same underlying condition.

More later, running late for a school meeting.

Mike

PS Please see the corrections - in bold - to my earlier "GAD65, cause or effect?" post. I had been up all night and misread what was then your immediately preceding post. Txs.
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Last edited by fmichael; 01-26-2013 at 03:00 PM.
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Unread 01-26-2013, 06:02 PM   #14
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Debbie

The questions FMichael is asking is why I was asking in my early posts about exactly why and how the doctors had arrived at their suggested diagnosis of SPS. It's why I was encouraging you to go back and ask for a full and detailed explanation of how they might have arrived at this diagnosis because dystonia is common with CRPS and it has to be ruled out before a diagnosis of SPS can be reached.

I had assumed that in getting to the stage of suggesting SPS, your doctor had already ruled out the much more clinically likely prospect of dystonia, possibly combined with other movement disorders associated with CRPS like myoclonus. You have been posting about your muscle wasting for such a long time and i was under the impression that this was something your doctors were already involved in looking into. Dystonia can cause muscle atrophy but it is largely due to lack of ability to functionally use the muscles because of the movement problems.

The differential diagnosis is based on clinical examination, testing and physician experience. I am not a neurologist but your should be able to explain to you how and why they have been able to rule dystonia/SPS and the myriad of other neurological conditions that cause very similar symptoms in or out. He or she should be able to do that by reference to your individual presentation.

You mentioned muscle dystrophy in your last post. Muscle dystrophy isn't the same as muscle atrophy - muscle dystrophy is the process by which muscle cell death occurs. Unlike atrophy, it isn't reversible. It's one of the reasons that the old name for CRPS was dropped because the 'dystrophy' part was misleading. There are relatively few people diagnosed who actually undergo muscle death although muscle atrophy is relatively common.

I think I asked this before and I'm not making a judgement but if you aren't very physically active you will experience quite significant muscle atrophy and weakness all over your body and you will also have pain and stiffness when you do try to move. Muscle mass is lost at an average rate of 4% per week when activity levels fall. Dystonia, SPS and other similar conditions have symptoms that go way beyond atrophy, stiffness, pain on movement and weakness.

I'm only saying all this in case you are perhaps in the care of a physician who is trying something because he or she feels stuck with nothing to offer or isn't sufficiently experienced in this area. You may be embarking on a treatment option that has potentially horrific side effects for no good reason. SPS is a very rare, terminal condition, its not like CRPS (however bad we think that is) and although you've not posted much information, I really think the more I hear, the more you need to stop and take stock before you go through with this.

Having been in the position you are with suspected SPS and feeling desperate, I know its hard but you need to be clear about what has happened so far and how you've got to this point before you go any further. Just my opinion.
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Unread 01-26-2013, 11:13 PM   #15
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Quote:
Originally Posted by Neurochic View Post
Debbie

The questions FMichael is asking is why I was asking in my early posts about exactly why and how the doctors had arrived at their suggested diagnosis of SPS. It's why I was encouraging you to go back and ask for a full and detailed explanation of how they might have arrived at this diagnosis because dystonia is common with CRPS and it has to be ruled out before a diagnosis of SPS can be reached.

I had assumed that in getting to the stage of suggesting SPS, your doctor had already ruled out the much more clinically likely prospect of dystonia, possibly combined with other movement disorders associated with CRPS like myoclonus. You have been posting about your muscle wasting for such a long time and i was under the impression that this was something your doctors were already involved in looking into. Dystonia can cause muscle atrophy but it is largely due to lack of ability to functionally use the muscles because of the movement problems.

The differential diagnosis is based on clinical examination, testing and physician experience. I am not a neurologist but your should be able to explain to you how and why they have been able to rule dystonia/SPS and the myriad of other neurological conditions that cause very similar symptoms in or out. He or she should be able to do that by reference to your individual presentation.

You mentioned muscle dystrophy in your last post. Muscle dystrophy isn't the same as muscle atrophy - muscle dystrophy is the process by which muscle cell death occurs. Unlike atrophy, it isn't reversible. It's one of the reasons that the old name for CRPS was dropped because the 'dystrophy' part was misleading. There are relatively few people diagnosed who actually undergo muscle death although muscle atrophy is relatively common.

I think I asked this before and I'm not making a judgement but if you aren't very physically active you will experience quite significant muscle atrophy and weakness all over your body and you will also have pain and stiffness when you do try to move. Muscle mass is lost at an average rate of 4% per week when activity levels fall. Dystonia, SPS and other similar conditions have symptoms that go way beyond atrophy, stiffness, pain on movement and weakness.

I'm only saying all this in case you are perhaps in the care of a physician who is trying something because he or she feels stuck with nothing to offer or isn't sufficiently experienced in this area. You may be embarking on a treatment option that has potentially horrific side effects for no good reason. SPS is a very rare, terminal condition, its not like CRPS (however bad we think that is) and although you've not posted much information, I really think the more I hear, the more you need to stop and take stock before you go through with this.

Having been in the position you are with suspected SPS and feeling desperate, I know its hard but you need to be clear about what has happened so far and how you've got to this point before you go any further. Just my opinion.
The reason he is going w sps is due to my symptoms and elevated gad65. I am not sure if I have md or atrophy. My legs and arms r getting thin and weak despite my almost daily pool exercise . Every day I do less because I'm so weak. It is difficult for me to hold a book without straining my arms and back, when I swim I can't turn my head to breath bc my back goes into spasms. I can no longer kick my legs in the pool. The muscle atrophy/dystrophy is very painful. I am also dealing w the rsd pain. I feel like no dr has been able to make sense of this and I am running out of time. The retuxemb won't be happening for a few months bc of insurance issues... Thanks for your input,,keep it coming!

Debbie
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Unread 01-27-2013, 01:08 AM   #16
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I tested positive for small fiber poly neuropathy via muscle punch biopsy.....
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Unread 01-27-2013, 04:08 AM   #17
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It's not unusual to test positive for small fibre neuropathy with CRPS. This is something that has been looked at in research and been found to be a feature of many patients clinical presentation. Some articles and doctors describe CRPS as a small fibre neuropathy condition. Most CRPS patients aren't tested for it because it would add nothing to the diagnosis - if you have CRPS there's nothing they can do about the neuropathy and doing the skin punches themselves are likely to be very painful, possibly inducing a spread or a worsening of the existing CRPS.

How long has this deterioration been going on for?

The kind of deterioration you are describing with your exercise could simply be the progression of the kind of dystonia that can 'normally' be found in CRPS. I'm not saying it is, just that it can be. Pool exercise isn't weight bearing and if you are very inactive the rest of the time it may not be sufficient to maintain normal muscle mass. I gradually lost all my ability to kick in the pool, to walk and to move my legs on a stationary bike. Ive never recovered that ability. The deterioration was initially very rapid and then progressed more slowly over about 2 years. i have significant muscle atrophy. I had an initial movement disorder spread pattern that was typical of both CRPS dystonia spread and SPS. As I said, all of the things you are experiencing 'could' be described by high levels of general inactivity.

As fMichael said GAD65 levels can be elevated in other conditions. Diabetes is one. In the SPS cases where it is found to be elevated its typically at very high levels, its elevated at much lower levels for diabetes. Not that it's found to be elevated in everyone with SPS.

I seriously recommend you do as much research as you can of your own into SPS and CRPS related dystonia to try and match your own experience with what is described for both these conditions. Look at as many sources as you can and I still think you need to take a hard look at your medical team to be sure that they really know what they are doing - for something like a serious presentation of CRPS dystonia and for SPS diagnosis you really would want to seek out neurologists who have some experience of These conditions and get a second opinion. I had to go abroad to do that and went to a global leader in this stuff. It was worth it.
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Unread 01-27-2013, 10:56 AM   #18
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Originally Posted by Neurochic View Post
It's not unusual to test positive for small fibre neuropathy with CRPS. This is something that has been looked at in research and been found to be a feature of many patients clinical presentation. Some articles and doctors describe CRPS as a small fibre neuropathy condition. Most CRPS patients aren't tested for it because it would add nothing to the diagnosis - if you have CRPS there's nothing they can do about the neuropathy and doing the skin punches themselves are likely to be very painful, possibly inducing a spread or a worsening of the existing CRPS.

How long has this deterioration been going on for?

The kind of deterioration you are describing with your exercise could simply be the progression of the kind of dystonia that can 'normally' be found in CRPS. I'm not saying it is, just that it can be. Pool exercise isn't weight bearing and if you are very inactive the rest of the time it may not be sufficient to maintain normal muscle mass. I gradually lost all my ability to kick in the pool, to walk and to move my legs on a stationary bike. Ive never recovered that ability. The deterioration was initially very rapid and then progressed more slowly over about 2 years. i have significant muscle atrophy. I had an initial movement disorder spread pattern that was typical of both CRPS dystonia spread and SPS. As I said, all of the things you are experiencing 'could' be described by high levels of general inactivity.

As fMichael said GAD65 levels can be elevated in other conditions. Diabetes is one. In the SPS cases where it is found to be elevated its typically at very high levels, its elevated at much lower levels for diabetes. Not that it's found to be elevated in everyone with SPS.

I seriously recommend you do as much research as you can of your own into SPS and CRPS related dystonia to try and match your own experience with what is described for both these conditions. Look at as many sources as you can and I still think you need to take a hard look at your medical team to be sure that they really know what they are doing - for something like a serious presentation of CRPS dystonia and for SPS diagnosis you really would want to seek out neurologists who have some experience of These conditions and get a second opinion. I had to go abroad to do that and went to a global leader in this stuff. It was worth it.
Who did u go to abroad?
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Unread 01-27-2013, 01:34 PM   #19
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Who did u go to abroad?
Debbie
I don't feel comfortable posting that information publicly but I will certainly let you know privately if you wish. I will try and figure out the pm system on here but if you are already familiar with how to do it, pm me and I will simply reply to you with the information.
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Unread 02-17-2013, 11:54 AM   #20
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Default stiff person syndrum

first of all i am new to this site. let me tell you a little bit about my story. in 2004 i started having twitching in my leg muscles, then it got worse and worse. i ended up in a wheel chair, untill i was diagnosed in 2006 with sps. a baclofen pump was in stalled in front side of my stomach with a cather around my side that hooked up to my spine. my daily dose was 658 per day. i could now walk again and do as i want.it saved my life. before with out this my body would go into spasity. my leggs would lock up to a point where the bones would almost break inside. so i know about pain. any little noise car horn anything would trigger the spasity. every two months id have to have the pump refilled. on top of the sps i got diebetes 1 from this. 1-28-13 ill be 44 years old. i live on long island, my nero is in brooklyn. in 2010 i started seeing another nero. here on the island that was supose to know about sps and baclofen pumps. boy did i find out how bad i was wrong. the reason i started seeing him was because the trip to brooklyn was too long, and all he had to do was moniter the pump. the problem started in 2-2012. im sorry anything other than that will have to be pm's. but i will ad this beware of the doc's here on long island about sps. thanks.
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