Aa
Quix, all my friends / naltrexone to ICU
I started my first dose of naltrexone on thursday. I had a very bad reaction to it and for 6 hours I was in a seizure state. My arms and legs where flying everywhere. Also, I experienced the most intense and severe pain of my life. I felt like my body was being torn apart. Because the naltrexone blocks the nerve endings there is nothing they can give you. It blocks pain meds from reaching the brain. They had to just let it run it's course.
I was taken by ambulance to the hospital, where I remained in ICU until Saturday. I am home today and very sore and very tired. For some reason my potassium was still at an extremely dangerous low level.
I was completely aware of everything that was going on around me the whole time but I could'nt stop myself from the seizure like motions.
After the naltrexone finally wore off they where able to hook me up to a morphine pump, because I was still in so much pain. I was able to sleep and get some rest.
If any of you know anything about naltrexone and why it might have caused this type of reaction please let me know. I am so discouraged right now that I feel like giving up. I really thought that this was my miracle drug. It had shown signs of reversing nerve damage in some people with MS and also helping others to walk again after being in a wheelchair like I am.
Please if you have any answers let me know.
Thank you
Carol
I was taken by ambulance to the hospital, where I remained in ICU until Saturday. I am home today and very sore and very tired. For some reason my potassium was still at an extremely dangerous low level.
I was completely aware of everything that was going on around me the whole time but I could'nt stop myself from the seizure like motions.
After the naltrexone finally wore off they where able to hook me up to a morphine pump, because I was still in so much pain. I was able to sleep and get some rest.
If any of you know anything about naltrexone and why it might have caused this type of reaction please let me know. I am so discouraged right now that I feel like giving up. I really thought that this was my miracle drug. It had shown signs of reversing nerve damage in some people with MS and also helping others to walk again after being in a wheelchair like I am.
Please if you have any answers let me know.
Thank you
Carol
You know what really upsets me is she should have known about the drug interactions and had me to stop them before taking the LDN. At the time of my first dose of LDN I was also taking, methadone, lyrica, oxycodone, cymbalta, and prednisone. I could have died. Why in the world would a doctor who uses this drug reguraly with MS patients failed to have told me this? I realize this is not official stuff you read but it's still information that's out there.
thank you so much. I don't know what I would do without you,
Carol
thank you so much. I don't know what I would do without you,
Carol
Hi, Carol, I'm trying to find some things for you. It will be tomorrow before I can tell you what is known about treating PPMS. Here is what I had read on the LDN Forums. Interesting that in 3 years it has only been read about 3000 times. That may tell us something about how widely LDN is really used. There are about 300,000 (I'd have to check that number) people in the US with MS and you know they are all over the net looking. I just copied this post. It is also old, but was available on a forum that is still active. It was in the MAIN THREAD section with frequently asked questions.
As I said before, all of the info is sort of "underground." With other people helping each other out on side effects and dosage. Nothing formal. Here is the link to this QUOTE.
http://ldn.proboards3.com/index.cgi?board=forum&action=display&thread=1104334920
"Author Topic: Why U may get increased symptoms in 1st 3mo on LDN (Read 3,058 times)
Brenda
Administrator
Joined: Mar 2004
Gender: Female
Posts: 1,977
Location: Mid-South USA
Why U may get increased symptoms in 1st 3mo on LDN
« Thread Started on Dec 29, 2004, 9:42am »
--------------------------------------------------------------------------------
For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms.
When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS, there may also be some initial transient, though temporary, increase in MS symptoms.
Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not normally be expected to last more than seven to ten days.
Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhea or vomiting. These additional symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain. This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work.
Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively "catch up" that the normal balance is restored and symptoms once again diminish and improve.
In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed. In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified.
Dr. M R Lawrence
« Last Edit: Jun 16, 2005, 9:01pm by Brenda » ""
************************************************************************end of QUOTE from the LDN forum
Remember this isn't official, but It's what I found. On LDNers.org (from 2001) they said point blank that there were no known side effects to LDN. The forums all talk about increase in stiffness, spasms and some with pain. You shouldn't start LDN it says here if you are on ANY narcotic pain relievers, until 2 weeks after you stop them, for the risk of huge increase in pain. Again, this is not official, it's just something I found on a currently active forum.
I'll do some research for you. Unless she was on-call she should have come to see you. If she was on-call she should have called and talked to you or to family!!! It's common decency. Quix
As I said before, all of the info is sort of "underground." With other people helping each other out on side effects and dosage. Nothing formal. Here is the link to this QUOTE.
http://ldn.proboards3.com/index.cgi?board=forum&action=display&thread=1104334920
"Author Topic: Why U may get increased symptoms in 1st 3mo on LDN (Read 3,058 times)
Brenda
Administrator
Joined: Mar 2004
Gender: Female
Posts: 1,977
Location: Mid-South USA
Why U may get increased symptoms in 1st 3mo on LDN
« Thread Started on Dec 29, 2004, 9:42am »
--------------------------------------------------------------------------------
For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms.
When starting this LDN(Low Dose Naltrexone) therapy in the treatment of MS, there may also be some initial transient, though temporary, increase in MS symptoms.
Experience in using this method has demonstrated most commonly, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not normally be expected to last more than seven to ten days.
Rarely, other transient symptoms have included more severe pain and spasm, headache, diarrhea or vomiting. These additional symptoms would appear to be associated with the previous frequent use of strong analgesics, which effectively create an addiction and dependency, thus increasing the body's sensitivity to pain. This temporary increase in symptoms may also perhaps be explained when we consider the manner in which this drug is expected to work.
Initially, MS occurs due to a reduction in the activity of the controlling influence of the suppressor T-cells within the immune system. During an acute relapse, the overall number of T-cells is reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the damaging helper (CD-4) T-cells tend to predominate. This is the situation most pronounced during an acute relapse but occurs similarly, but to a lesser extent, in chronic progressive MS. Under the influence of LDN there will be an expected increase in the overall numbers of T-cells but, because the CD-4, helper T-cells tend to predominate at this time, an increase in their numbers will expectedly tend to increase MS symptoms. It is only when the numbers of suppressor T-cells effectively "catch up" that the normal balance is restored and symptoms once again diminish and improve.
In addition, because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility may be assessed. In addition, because LDN will also block the analgesic effects of any opiate drugs (includes codeine, dihydrocodeine, morphine, pethidine or diamorphine) presently being taken, the use of LDN will initially greatly increase the level of pain experienced. It is therefore advisable that any opiate-like drugs be discontinued at least two weeks before this treatment is initiated. When starting the treatment it is essential that any untoward or adverse side-effects are reported immediately so that the treatment process can be further assessed and, if necessary, modified.
Dr. M R Lawrence
« Last Edit: Jun 16, 2005, 9:01pm by Brenda » ""
************************************************************************end of QUOTE from the LDN forum
Remember this isn't official, but It's what I found. On LDNers.org (from 2001) they said point blank that there were no known side effects to LDN. The forums all talk about increase in stiffness, spasms and some with pain. You shouldn't start LDN it says here if you are on ANY narcotic pain relievers, until 2 weeks after you stop them, for the risk of huge increase in pain. Again, this is not official, it's just something I found on a currently active forum.
I'll do some research for you. Unless she was on-call she should have come to see you. If she was on-call she should have called and talked to you or to family!!! It's common decency. Quix
I'm so sorry to hear what you went through. And, I don't think you're over reacting about her not coming to the hospital. I would have been annoyed too. My prayers are with you and I hope you are getting some relief.
I'm sorry that I really can't answer your questions right now because I was so out of it when I left to come home, that I don't know who I saw or what was said. I do have an appointment with my doctor on Tuesday and I will ask him all of these things you have mentioned. I do know that my neurologist did not come to the hospital but did speak to my doctor (md) over the phone. My neur. is about a 2 hour drive from here.
You're gonna love this one. My naltrexone was only a 1.75 mg dose. Also they did run test on my heart because of my potassium being so low they where concerned with heart damage. They also checked my B12 levels and a few other things. I will find out more Tuesday but this is what my husband told me.
I have been told that I have Primary Progressive MS. I guess that's bad, yes? What do I do now?
I am very unhappy with my neurologist, because she never once mentioned that anything like this could happen. She told me that there had never been any side effects shown with this med. Plus, I felt like that as critical as I was that she should had made an effort to come to the hospital. Am I right or am I over reacting?
I'm really scared Quix, I don't want to die and I think that I am well on my way.
I'm 42 and I want to live a good life. Even if I have to live the rest of it in a wheelchair, that's okay. Can you think of anything I can do that will make a difference?
Thanks,
Carol
I have been told that I have primary progressive MS. I guess that's bad, yes?
You're gonna love this one. My naltrexone was only a 1.75 mg dose. Also they did run test on my heart because of my potassium being so low they where concerned with heart damage. They also checked my B12 levels and a few other things. I will find out more Tuesday but this is what my husband told me.
I have been told that I have Primary Progressive MS. I guess that's bad, yes? What do I do now?
I am very unhappy with my neurologist, because she never once mentioned that anything like this could happen. She told me that there had never been any side effects shown with this med. Plus, I felt like that as critical as I was that she should had made an effort to come to the hospital. Am I right or am I over reacting?
I'm really scared Quix, I don't want to die and I think that I am well on my way.
I'm 42 and I want to live a good life. Even if I have to live the rest of it in a wheelchair, that's okay. Can you think of anything I can do that will make a difference?
Thanks,
Carol
I have been told that I have primary progressive MS. I guess that's bad, yes?
Hi, Carol. I'm so sorry this happened to you. When I was reading about it, there wasn't good data online, but I was reading the posts in the LDN forums (like this one). They were all saying that when you start LDN, that for the first 6 to 16 weeks your MS symptoms would likely be worse and then the medicine would start to work. I couldn't find anything to verify this and, I assumed, if it were true, that your doctor would have warned you.
Yes, you would feel more pain because the medicine is an opiate "blocker" so that things that block pain (like pain meds) can't bind. That's how they treat addiction with it at the high (50mg) dose. I had read in some good articles that at that very low dose (3mg to 4.5mg) it wouldn't block regulate pain relievers. This med has to be specially formulated by a compounding pharmacist. It should be straight forward, but there is no quality control to check for how well any one pharmacist does it. You might (repeat only might) have gotten a higher dose.
Did a neurologist see you in the ICU? Did they make any recommendations about further therapy? That episode could have killed you (or at least I bet at some point you wish it would!). What does your doctor that prescribed it say? I'm really worried about you.
Carol - Have they told you what form of MS they think you have? Have they said it might be Primary or Secondary Progressive? If you let me know, I will research what meds are available that might be used. If I remember your timeline talked about symptoms of fatigue and clumsiness beginning about ten years ago.
I hope you have adequate pain meds at home now. I also wanted to talk to you about the low potassium, but they might have given you new instructions about that too. I'm worried about another thing. Did you have any dark red urine in the hospital? Did they have any worry that you had sustained any muscle damage?
I hope you see this today. ((((HUGS)))) Quix
Yes, you would feel more pain because the medicine is an opiate "blocker" so that things that block pain (like pain meds) can't bind. That's how they treat addiction with it at the high (50mg) dose. I had read in some good articles that at that very low dose (3mg to 4.5mg) it wouldn't block regulate pain relievers. This med has to be specially formulated by a compounding pharmacist. It should be straight forward, but there is no quality control to check for how well any one pharmacist does it. You might (repeat only might) have gotten a higher dose.
Did a neurologist see you in the ICU? Did they make any recommendations about further therapy? That episode could have killed you (or at least I bet at some point you wish it would!). What does your doctor that prescribed it say? I'm really worried about you.
Carol - Have they told you what form of MS they think you have? Have they said it might be Primary or Secondary Progressive? If you let me know, I will research what meds are available that might be used. If I remember your timeline talked about symptoms of fatigue and clumsiness beginning about ten years ago.
I hope you have adequate pain meds at home now. I also wanted to talk to you about the low potassium, but they might have given you new instructions about that too. I'm worried about another thing. Did you have any dark red urine in the hospital? Did they have any worry that you had sustained any muscle damage?
I hope you see this today. ((((HUGS)))) Quix
Like the others have posted, I haven't tried it either. Am waiting fo copaxone. I think it's terrible that you had to go through so much pain and they couldn't help. It must of been very draining on you. I hope you try and keep your spirits up, during this hard time. We are all here for you. You are in my thoughts and prayers. Karina
I have no experience with this med, but just wanted to let you know I hear your pain and empathize with you. What a horrendous experience. I'm glad you are home, and I hope you can rest, and they find something that will help you that doesn't cause this awful reaction. My thoughts and prayers are with you.
I am sooooo sorry for your reaction to the medication. That must have been absolutely horrible! I am glad you are home and hope the pain is being medicated. I have not had any experience with meds of this sort yet but I want you to know you are in my prayers!
Take care!
Kristin
Take care!
Kristin
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