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Need treatment suggestions for best friend Please
Hi there all,
A while back one of my best friends was diagnosed with MS. He has been taking a shot once a week on the same day and time for about 6 months or so. He continues to get worse and MRI's confirm more lesions. It would seem like this is pretty fast acting.
I would like to know how you all are being treated and what has seemed to work for you? I would love to hear of treatment that is not mainstream PHARMA if there are any, BUT any and all information would be so appreciated.
I really feel like I need to start taking this into my own hands since he is getting worse quite fast and I don't want to see my best friend go down in flames without me fighting for him.
If you need more information, I would be happy to try to get it for you.
Thanks in advance everyone!
Fuel
A while back one of my best friends was diagnosed with MS. He has been taking a shot once a week on the same day and time for about 6 months or so. He continues to get worse and MRI's confirm more lesions. It would seem like this is pretty fast acting.
I would like to know how you all are being treated and what has seemed to work for you? I would love to hear of treatment that is not mainstream PHARMA if there are any, BUT any and all information would be so appreciated.
I really feel like I need to start taking this into my own hands since he is getting worse quite fast and I don't want to see my best friend go down in flames without me fighting for him.
If you need more information, I would be happy to try to get it for you.
Thanks in advance everyone!
Fuel
Hey, Fuel,
Sorry to pop in so late. I've been on Tysabri for 8 months, now, and I'm having a good experience. I get quite the burst of energy about 4 days after my infusion. This goes on for another 2 weeks, and then I start to crash (more fatigue, spasticity, etc.). My neuro is already suggesting a "holiday" from Tysabri at 12 months. I may push for 18 months, because truthfully, I'm able to function pretty well, and I've had no new flairs since I started Tysabri. I haven't completely recovered from my last flair, and I'm starting to accept the "new normal", just because there is still so much I CAN do.
My neuro is steering me toward the new oral meds, and I'm fine with that as long as they work. In the mean time, Tysabri is fine for me.
Hope this helps,
Guitar_grrrl
Sorry to pop in so late. I've been on Tysabri for 8 months, now, and I'm having a good experience. I get quite the burst of energy about 4 days after my infusion. This goes on for another 2 weeks, and then I start to crash (more fatigue, spasticity, etc.). My neuro is already suggesting a "holiday" from Tysabri at 12 months. I may push for 18 months, because truthfully, I'm able to function pretty well, and I've had no new flairs since I started Tysabri. I haven't completely recovered from my last flair, and I'm starting to accept the "new normal", just because there is still so much I CAN do.
My neuro is steering me toward the new oral meds, and I'm fine with that as long as they work. In the mean time, Tysabri is fine for me.
Hope this helps,
Guitar_grrrl
To comment on Lulu's info, Tysabri is also an immune suppressant with much less info on long term use than the injectables. I have to be careful not to be around sick people cuz I am on the Tysabri.
I agree with her that if one of the injectables works, stick with it. There is so much more long term research on them. I have to do more research on the oral meds myself.
I think Tysabri and eventually oral meds is a last resort for me cuz the injectables caused me too many probs.
We are always here, and glad you are too.
D
I agree with her that if one of the injectables works, stick with it. There is so much more long term research on them. I have to do more research on the oral meds myself.
I think Tysabri and eventually oral meds is a last resort for me cuz the injectables caused me too many probs.
We are always here, and glad you are too.
D
Lulu and all - Thanks so much for helping me out. I know everyone is so busy at times and to take time to help another gives me hope for humanity. It is so nice to have a family to come to when in need. Times are rough in this area and it feels like survival of the fittest at times.
Thanks again for making me feel welcome even though I am not a regular. I will try to learn as much as I can to be an asset for others in the future.
Prayers and Blessings to you all. We will keep in touch.
Todd
Thanks again for making me feel welcome even though I am not a regular. I will try to learn as much as I can to be an asset for others in the future.
Prayers and Blessings to you all. We will keep in touch.
Todd
Todd,
to find an Ms doctor, who is a specialist in the disease, go to mscare.org. This is a consortium of MS doctors who pass rigid testing and training to get this special certification.
It is not unusual for us to travel an hour or more to get to an MS specialist. There are a lot of quality MS doctors in the greater Chicago area - including at Northwestern University, where there has been exciting and promising work in stem cell transplants for MS patients. They also have a large team of scientists working with the Myelin Repair Foundation group to find ways to repair the myelin damage already done to our bodies.
You can also check on line ratings at various sites - but be wary that sometimes patients develop a grudge and write reviews that may not be a fair evaluation of overall experience with a doctor.
I have been on copaxone for almost two years now, and have had few problems and next to no disease progression according to my MRI's. My relapse earlier this year was due to a UTI.
As for tysabri - if my copaxone weren't working, and the interferons were also out, I would try tysabri. I know the risks with the PML but the proven benefits are there, too. I have repeatedly said that I can't sit back and do nothing- for me that is not an option.
The oral meds that are coming sound great, but you have to look at the details a bit closer. If I have it right, these are drugs that have already been on the market as part of chemotherapy treatment for cancers. They suppress the immune system - which none of the current injection-type DMDs do - making you susceptible to other germs and diseases.
We do not know the long term effects of being on these oral meds whereas we do have an almost 20 year history of the injectables. We know what we are getting into with the shots - the oral meds are full of questions.
The neuros I have heard and read about on this topic are saying that they will NOT switch their patients who are on shots to the orals if the current therapy is working. In other words, if it ain't broke, don't try to fix it. The inconvenience/discomfort of an injection may be the lesser of two evils in making this choice.
Todd, I remember you being here before to find answers for your friend. He is lucky to have you on his side - please come back anytime with more questions or comments. We love to share around here.
my best to all of you,
Lulu
to find an Ms doctor, who is a specialist in the disease, go to mscare.org. This is a consortium of MS doctors who pass rigid testing and training to get this special certification.
It is not unusual for us to travel an hour or more to get to an MS specialist. There are a lot of quality MS doctors in the greater Chicago area - including at Northwestern University, where there has been exciting and promising work in stem cell transplants for MS patients. They also have a large team of scientists working with the Myelin Repair Foundation group to find ways to repair the myelin damage already done to our bodies.
You can also check on line ratings at various sites - but be wary that sometimes patients develop a grudge and write reviews that may not be a fair evaluation of overall experience with a doctor.
I have been on copaxone for almost two years now, and have had few problems and next to no disease progression according to my MRI's. My relapse earlier this year was due to a UTI.
As for tysabri - if my copaxone weren't working, and the interferons were also out, I would try tysabri. I know the risks with the PML but the proven benefits are there, too. I have repeatedly said that I can't sit back and do nothing- for me that is not an option.
The oral meds that are coming sound great, but you have to look at the details a bit closer. If I have it right, these are drugs that have already been on the market as part of chemotherapy treatment for cancers. They suppress the immune system - which none of the current injection-type DMDs do - making you susceptible to other germs and diseases.
We do not know the long term effects of being on these oral meds whereas we do have an almost 20 year history of the injectables. We know what we are getting into with the shots - the oral meds are full of questions.
The neuros I have heard and read about on this topic are saying that they will NOT switch their patients who are on shots to the orals if the current therapy is working. In other words, if it ain't broke, don't try to fix it. The inconvenience/discomfort of an injection may be the lesser of two evils in making this choice.
Todd, I remember you being here before to find answers for your friend. He is lucky to have you on his side - please come back anytime with more questions or comments. We love to share around here.
my best to all of you,
Lulu
Awesome info there! This is what I was hoping this forum would spur. This is kind of hijacking my own thread, but as long as we are on it....Anyone in the Aurora/OswegoYorkville IL area that has a good MS doctor?
Please keep the info coming on your treatments and how you are doing.
God Bless
Todd
Please keep the info coming on your treatments and how you are doing.
God Bless
Todd
I'm thinking about that oral med myself - after my last IPIR, injecting things into my body has less appeal - if that's possible!
I'm sorry I have not read all of the posts in this thread as my eyes are not working today.
so if I cover anything that has already been said, sorry. I did want to throw in my 2 cents about Tysabri.
I had very little MRI change while on injection DMD's, but my symptoms went down hill fast. I also had bad injection site reactions so I was sent to an MS Specialist to discuss Tysabri.
I have only had 2 treatments so I can not give any info on how it is effecting my MS yet, but I can tell you I have had nothing but positive comments from people that are taking Tysabri. The concept of the drug is to slow down the progression of MS just like all the other DMD's, but I have been told over and over that after 2-3 Tysabri treatments patients show increased energy and cognitive improvement. The girl that talked me into Tysabri before the Dr even mentioned it to me said it changed her life. I am keeping my fingers crossed.
About the brain disease associated with Tysabri...It is PML which stands for a really long medical word I can not spell or pronounce :)
The MS specialist told me the risk for PML on Tysabri is very low in the first 2 years and it is generally after 3 years is when the risk becomes a factor. There is no risk of developing PML is you test negative for an antibody to the JC virus. Only 50% of people have been exposed to JC virus. I get tested in Oct.
The other thing the specialist told me is that there will be oral medication available to slow down MS progression available in December of this year so Tysabri won't need to be a long term med for me.
Best Wishes and thanks for fighting for your friend
D
so if I cover anything that has already been said, sorry. I did want to throw in my 2 cents about Tysabri.
I had very little MRI change while on injection DMD's, but my symptoms went down hill fast. I also had bad injection site reactions so I was sent to an MS Specialist to discuss Tysabri.
I have only had 2 treatments so I can not give any info on how it is effecting my MS yet, but I can tell you I have had nothing but positive comments from people that are taking Tysabri. The concept of the drug is to slow down the progression of MS just like all the other DMD's, but I have been told over and over that after 2-3 Tysabri treatments patients show increased energy and cognitive improvement. The girl that talked me into Tysabri before the Dr even mentioned it to me said it changed her life. I am keeping my fingers crossed.
About the brain disease associated with Tysabri...It is PML which stands for a really long medical word I can not spell or pronounce :)
The MS specialist told me the risk for PML on Tysabri is very low in the first 2 years and it is generally after 3 years is when the risk becomes a factor. There is no risk of developing PML is you test negative for an antibody to the JC virus. Only 50% of people have been exposed to JC virus. I get tested in Oct.
The other thing the specialist told me is that there will be oral medication available to slow down MS progression available in December of this year so Tysabri won't need to be a long term med for me.
Best Wishes and thanks for fighting for your friend
D
Hi,
I did read recently about someone or some people who are basically lying in the sun to get huge doses of Vitamin D (obviously they weren't overheating or that'd cause trouble)
and this was having a beneficial effect apparently........I'll google again and see if I can find it for you...
I did read recently about someone or some people who are basically lying in the sun to get huge doses of Vitamin D (obviously they weren't overheating or that'd cause trouble)
and this was having a beneficial effect apparently........I'll google again and see if I can find it for you...
Shell thanks for that. Hopefully, we will get some more info later on. I will keep researching. I do know that my doctor has many MS patients and all have done well. I just wish he was in network so Chris could go see him without the money out of pocket.
Thank you
Thank you
We do, hang tight. - I just think the forum is quiet of our veteran MSers.
I do well on Rebif. I haven't had large attacks like my 1st one since being on it.
I do well on Rebif. I haven't had large attacks like my 1st one since being on it.
Over on About.com, there's an MS blogger who talks about her experiences with LDN. She's come to the conclusion that the benefits are psychosomatic. She's experienced no actual benefit from the drug.
DMDs do not make you feel better! They're there specifically for the purpose of slowing down the progress of the disease. Sometimes this will allow your body's healing to actually make some progress and get ahead of the lesion formation.
DMDs do not make you feel better! They're there specifically for the purpose of slowing down the progress of the disease. Sometimes this will allow your body's healing to actually make some progress and get ahead of the lesion formation.
I can't believe we haven't gotten more responses on this. Nobody has any success stories on treatment of their MS or family and friends?
Many thanks
Fuel
Many thanks
Fuel
There really is no masking where DMDs are concerned. They either work, or they don't (my opinion). However, each of us can and do respond differently from them. One person can do well on them and slow progression while others still see progression. Some have to stop for other reasons associated with the med, i.e, depression, reactions, etc.
I've not heard much about our members saying the DMDs make them "feel" better. It's not that kind of med., really. Though I soooo wish it were.
Symptom relief is where the other meds come in. For example, many MSers fight fatigue with provigil, or baclofen for muscle spasms, etc. These meds to help provide relief in these areas.
If he's scared of the big guns (what I consider Tysabri) and risk of PML (progressive multifocal leukoencephalopathy) then he should definitely bring this concern to the Dr. for more insight. His doc may have good reasons to steer him this direction.
We have Tysabri users on the forum and I'm hoping they see this post so you can get some 1st hand user experiences. Because of the above risk, there are checks inplace and monitoring while on it.
It's a personal choice, and by no means do I mean to sway toward one med vs another (because I believe in them all the approved DMDs), just adding personal thoughts that I'd have to try another DMD before going this direction.
Your very welcome and I'm glad you've made your way back to us though I'm sorry for the cause :(
ttys,
shell
I've not heard much about our members saying the DMDs make them "feel" better. It's not that kind of med., really. Though I soooo wish it were.
Symptom relief is where the other meds come in. For example, many MSers fight fatigue with provigil, or baclofen for muscle spasms, etc. These meds to help provide relief in these areas.
If he's scared of the big guns (what I consider Tysabri) and risk of PML (progressive multifocal leukoencephalopathy) then he should definitely bring this concern to the Dr. for more insight. His doc may have good reasons to steer him this direction.
We have Tysabri users on the forum and I'm hoping they see this post so you can get some 1st hand user experiences. Because of the above risk, there are checks inplace and monitoring while on it.
It's a personal choice, and by no means do I mean to sway toward one med vs another (because I believe in them all the approved DMDs), just adding personal thoughts that I'd have to try another DMD before going this direction.
Your very welcome and I'm glad you've made your way back to us though I'm sorry for the cause :(
ttys,
shell
Yes, I believe Tysabri is the correct name. They said that this can also cause brain cancer? He is very scared about this as is his wife obviously.
From what I have read, and I am just a newbie on this topic, but it appears that a majority of these mainstream treamtments just kind of mask symptoms and don't really help repair anything. Is this correct?
I know from reading other forums and individuals comments that LDN actually helps boost your system to help repair and fight the conflicts of MS.
Thanks so much for wanting to help!
From what I have read, and I am just a newbie on this topic, but it appears that a majority of these mainstream treamtments just kind of mask symptoms and don't really help repair anything. Is this correct?
I know from reading other forums and individuals comments that LDN actually helps boost your system to help repair and fight the conflicts of MS.
Thanks so much for wanting to help!
Rebif is sub-Q injection whereas the Avonex he's on is once a week intramuscular.
The once montly mentioned as an option, is this Tysabri? Or a trial med?
LDN is not a disease modifier but I have heard some say they received benefit from the way they felt.
Fuel, it's important to treat this disease (with disease modifiers) with available options and then manage the symptoms with other meds or lifestyle changes when necessary.
keep talking to us - we want to help,
~shell
The once montly mentioned as an option, is this Tysabri? Or a trial med?
LDN is not a disease modifier but I have heard some say they received benefit from the way they felt.
Fuel, it's important to treat this disease (with disease modifiers) with available options and then manage the symptoms with other meds or lifestyle changes when necessary.
keep talking to us - we want to help,
~shell
Hi there
Yes, he was on Avonex for the full 6months. He has had at least 5 new lesions since being on this.
Is that Rebif an IV? His neuro wants to put him on an IV once a month treatment that does not allow the white blood cells to leave to fight infection and inflammation.
Any one had any experience with Low Dose Naltrexone? My doctor has had great success with this and supplements and IV treatement. Problem is he is out of network and is costly
Yes, he was on Avonex for the full 6months. He has had at least 5 new lesions since being on this.
Is that Rebif an IV? His neuro wants to put him on an IV once a month treatment that does not allow the white blood cells to leave to fight infection and inflammation.
Any one had any experience with Low Dose Naltrexone? My doctor has had great success with this and supplements and IV treatement. Problem is he is out of network and is costly
Hi Fuel,
Nice to see you. After 6 months and increasing attacks, he may want to consider talking to the neuro about a switch in meds. Rebif is given at a higher dose and may help. All he can do is try at this point. Since they are both an interferon, it wouldn't be that big of a change - just an increase.
Has he been on the Avonex for a full 6 months?
I know I've said this before, but you are such a good friend. I know you will encourage him to keep trying.
If it were me, knowing what I know now, this is what I'd do.
ttys,
~shell
Nice to see you. After 6 months and increasing attacks, he may want to consider talking to the neuro about a switch in meds. Rebif is given at a higher dose and may help. All he can do is try at this point. Since they are both an interferon, it wouldn't be that big of a change - just an increase.
Has he been on the Avonex for a full 6 months?
I know I've said this before, but you are such a good friend. I know you will encourage him to keep trying.
If it were me, knowing what I know now, this is what I'd do.
ttys,
~shell
First of all I am no Doctor. I am sorry your friend is having a hard time.
Unfortunately to date mainstream pharma is the only real hope to slow progression.
Men can be hit more dramatically than women with progression with MS.
The injections only work 33% if started at the beginning stages of Relapsing Remitting MS. There is Tysabri an infusion and their are drug trials for oral medications. Sometimes they can even use chemo but it is rough stuff.
Unfortunately to date these are the only proven treatments. Some people go to other countries to get stem cells. The problem is stem cells can't repair damage they can only in some cases slow future damage but usually only for awhile. Then you do not know if you will pick up some other disease from the treatment like hepatitis.
MS research is still in its infancy.
Alex
Unfortunately to date mainstream pharma is the only real hope to slow progression.
Men can be hit more dramatically than women with progression with MS.
The injections only work 33% if started at the beginning stages of Relapsing Remitting MS. There is Tysabri an infusion and their are drug trials for oral medications. Sometimes they can even use chemo but it is rough stuff.
Unfortunately to date these are the only proven treatments. Some people go to other countries to get stem cells. The problem is stem cells can't repair damage they can only in some cases slow future damage but usually only for awhile. Then you do not know if you will pick up some other disease from the treatment like hepatitis.
MS research is still in its infancy.
Alex
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