Aa
Has anyone quit taking DMDs?
I don't know what to think. I started on Rebif when I was Dx'd and the site reactions were so bad I switched to Betaseron. The Beta worked well for a while then I started getting reactions from that too. My Dr thought about switching to copaxone but if every other day injections were bad enough then every day injections are probably not a good idea.
My MRI's have not changed the entire time I have been on DMD's, but my condition has deteriorated greatly over these last 2 years. My neuro decided to send me to UCSF to see if Tysabri would work for me. We had a LOOONNNNGGG talk about the risks and the specialist gave me the impression that the risks were MUCH lower than they are. He also gave me the impression that if I tested negative for the JC virus antibodies that my risks were almost nil..
My regular neuro told me just last week (6months after I started Tysabri) that the specialist gave me very wrong info and that the risks for PML are even higher than they originally thought. I called Biogen myself to talk to them about Tysabri risks and they told me that the chances are around an average of 1 in 1000 of getting PML which is very low, (hhmmm I believe that is the same as the risk of getting MS) but there is not enough evidence about the JC virus to show any number changes there.
How can this UCSF specialist give me numbers that are total boloney just to get me to try a med?? Do they know something that the Biogen people don't?
I am in a flare I think, depressed, angry and hurting, and so I don't want to make a rash decision about DMD's based on my bad attitude right now, but I really don't like putting more poison in my body when it may not be working for me.
If you have quit your DMD for whatever reason, can you share with me how you feel it effected you please? Did you have probs with the DMD? Did you lose it do to financial reasons and wish for it back? Any opinions, help, talking me out of being stupid...appreciate it
Thanks
D
My MRI's have not changed the entire time I have been on DMD's, but my condition has deteriorated greatly over these last 2 years. My neuro decided to send me to UCSF to see if Tysabri would work for me. We had a LOOONNNNGGG talk about the risks and the specialist gave me the impression that the risks were MUCH lower than they are. He also gave me the impression that if I tested negative for the JC virus antibodies that my risks were almost nil..
My regular neuro told me just last week (6months after I started Tysabri) that the specialist gave me very wrong info and that the risks for PML are even higher than they originally thought. I called Biogen myself to talk to them about Tysabri risks and they told me that the chances are around an average of 1 in 1000 of getting PML which is very low, (hhmmm I believe that is the same as the risk of getting MS) but there is not enough evidence about the JC virus to show any number changes there.
How can this UCSF specialist give me numbers that are total boloney just to get me to try a med?? Do they know something that the Biogen people don't?
I am in a flare I think, depressed, angry and hurting, and so I don't want to make a rash decision about DMD's based on my bad attitude right now, but I really don't like putting more poison in my body when it may not be working for me.
If you have quit your DMD for whatever reason, can you share with me how you feel it effected you please? Did you have probs with the DMD? Did you lose it do to financial reasons and wish for it back? Any opinions, help, talking me out of being stupid...appreciate it
Thanks
D
hi D,
are you feeling any better today? i hope so.
D, correct me if i am wrong, you tested JC NEG, right?
I read the article PortiaD has refered to, while i recognise there was increase of POS testing, i did not read where it was stated they became pos BECAUSE they were recieving tysabri, just said there was an increase after 18mos treatments on tysabri. If i am incorrect, please correct me.
With the general population having JC , not sure
they could determine?
I'm not sure Bear said she had been ever tessted before taking 20 treatments ?
If she hadn't , there would be no telling if she was positive prior to treatments.
My math maybe wrong, but I calculated increase of 24 % not 60% (orginal numbers were 19% then up to 63%) again, if i am wrong, please correct me. (reading anything over a paragaph gets my head crazy)
I had my first 3 mo follow up from tysabri wiiith my neuro, had my blood draw. I wish i had written down the numbers he gave me, i can't rmember all. (he goes textbook at times and rambles stats over my head)
He pretty much went over mostly what we disscussed prior to beginning treatment. But now we know i am positive for JC so he will watch me closely, and if anything changes to call right away (like Bear haas said)
At one year we'll go over how i am doing and hopes to continue thenn ffor another 6-12 mos.
If one is POS, the first year on tysabri risck of PML is low loww (like i said he gave stats but i should have had a paper)
It goes up the second year, but still low. I can see why Bear, your neuro would not rcommend beginning again now after 20.
The third year (iff any neuro would allow a pos. patient to continue) odds increase.
He said ALL the patients who have contracted PML were pos. They actually tested blood of all the deceased patients that passed prior to testing for JC available (blood was on file) and they too were pos.
D, i do know it is hard thinking right now and making your decission on how you will procedde, Whatever you will choose it;s ok, and it will be YOUR right decission (difficult I know)
I hope you are better...amo
are you feeling any better today? i hope so.
D, correct me if i am wrong, you tested JC NEG, right?
I read the article PortiaD has refered to, while i recognise there was increase of POS testing, i did not read where it was stated they became pos BECAUSE they were recieving tysabri, just said there was an increase after 18mos treatments on tysabri. If i am incorrect, please correct me.
With the general population having JC , not sure
they could determine?
I'm not sure Bear said she had been ever tessted before taking 20 treatments ?
If she hadn't , there would be no telling if she was positive prior to treatments.
My math maybe wrong, but I calculated increase of 24 % not 60% (orginal numbers were 19% then up to 63%) again, if i am wrong, please correct me. (reading anything over a paragaph gets my head crazy)
I had my first 3 mo follow up from tysabri wiiith my neuro, had my blood draw. I wish i had written down the numbers he gave me, i can't rmember all. (he goes textbook at times and rambles stats over my head)
He pretty much went over mostly what we disscussed prior to beginning treatment. But now we know i am positive for JC so he will watch me closely, and if anything changes to call right away (like Bear haas said)
At one year we'll go over how i am doing and hopes to continue thenn ffor another 6-12 mos.
If one is POS, the first year on tysabri risck of PML is low loww (like i said he gave stats but i should have had a paper)
It goes up the second year, but still low. I can see why Bear, your neuro would not rcommend beginning again now after 20.
The third year (iff any neuro would allow a pos. patient to continue) odds increase.
He said ALL the patients who have contracted PML were pos. They actually tested blood of all the deceased patients that passed prior to testing for JC available (blood was on file) and they too were pos.
D, i do know it is hard thinking right now and making your decission on how you will procedde, Whatever you will choose it;s ok, and it will be YOUR right decission (difficult I know)
I hope you are better...amo
It's possible that you caught the JC virus because you were on Tysabri. At least one study showed a 60% increase in JC among those on the drug.
http://www.medpagetoday.com/Neurology/MultipleSclerosis/15889
http://www.medpagetoday.com/Neurology/MultipleSclerosis/15889
I quit them all!
I was on Copaxone after being diagnosed but after a few months had a severe reaction When I quit my exhaustion vanished, instantly! I also read a study linking it to breast cancer. Then I was on Rebif and the side effects were intollerable. So I decided to wait until Tysabri was legalized again.
I knew other people who either refused to take the DMD's at all or who had similar experiences and had quit. My course was more severe than theirs and after quitting I went through two years of relapses, rapid disease progression and hospitalizations. They changed my DX from RRMS to PRMS. My neurologists were very quick to say, "I told you so!" and two of them essentially 'fired' me as a patient. (However, as a result I was able to get in with a highly sought after MS specialist who "wasn't taking new patients".)
Then, I started taking Vitamin D3 and an Iodine supplement and as quickly as it had all come, my symptoms (knock on wood) vanished. For the past two years I haven't had a relapse, although I do have occassional, symptoms. However, considering that I was unable to walk my symptoms today aren't overly troublesome.
I don't know if my remission is due to the supplements or because my disease one day just decided to quit progressing, but I'm not stopping them to find out. In any case, I'll be getting another MRI soon and will let you guys know what it shows. Good Luck!
I was on Copaxone after being diagnosed but after a few months had a severe reaction When I quit my exhaustion vanished, instantly! I also read a study linking it to breast cancer. Then I was on Rebif and the side effects were intollerable. So I decided to wait until Tysabri was legalized again.
I knew other people who either refused to take the DMD's at all or who had similar experiences and had quit. My course was more severe than theirs and after quitting I went through two years of relapses, rapid disease progression and hospitalizations. They changed my DX from RRMS to PRMS. My neurologists were very quick to say, "I told you so!" and two of them essentially 'fired' me as a patient. (However, as a result I was able to get in with a highly sought after MS specialist who "wasn't taking new patients".)
Then, I started taking Vitamin D3 and an Iodine supplement and as quickly as it had all come, my symptoms (knock on wood) vanished. For the past two years I haven't had a relapse, although I do have occassional, symptoms. However, considering that I was unable to walk my symptoms today aren't overly troublesome.
I don't know if my remission is due to the supplements or because my disease one day just decided to quit progressing, but I'm not stopping them to find out. In any case, I'll be getting another MRI soon and will let you guys know what it shows. Good Luck!
Hi!
I just found this board today. I'm a nurse with MS. We must live in the same general area because I've also been treated at UCSF. The doctor I saw was Doug Goodin. Although he's not my primary neurologist (I saw him for a second opinion), he is very good and I really liked him.
I was on Tysabri for 20 months. I went off of it last May after recurrent respiratory infections and pneumonia. It was the only DMD that stopped my progression. Avonex and Copaxone actually accelerated my disease. I chose not to go back on Tysabri, and instead, tried a compounded pill called low dose naltrexone (LDN). Although LDN has given me more energy, it hasn't stopped the progression of the disease. When I went in for my annual MRI in November, I had an additional 10+ lesions on the brain and cervical spine. My neurologist wanted to put me back on Tysabri. The ironic thing about this is a few weeks before I went in for the MRI, I participated in the Stratify-2 study with my neurologist’s office partner to see if I was positive for the JC virus antibodies. When my neurologist suggested going back on Tysabri, I told her I wanted to wait for the results of the study before making a decision. Two weeks later I found out my results; I tested positive. My neurologist was quite upset about the findings and she said there was no way she would put me back on the medication now.
If they tested you for the JC virus and it came back negative, you’ll probably be okay taking the infusion. Just make sure you’re vigilant about signs and symptoms of PML while on it. If you feel like you’re having an exacerbation while on it, you need to tell the neurologist ASAP. It’s also a good idea for them to test you again for the JC antibodies after you’ve been on the infusion for 12 months.
As far as a lumbar puncture or DNA test, I don’t think that’s necessary from everything I’ve been told.
I hope this helps! :)
I just found this board today. I'm a nurse with MS. We must live in the same general area because I've also been treated at UCSF. The doctor I saw was Doug Goodin. Although he's not my primary neurologist (I saw him for a second opinion), he is very good and I really liked him.
I was on Tysabri for 20 months. I went off of it last May after recurrent respiratory infections and pneumonia. It was the only DMD that stopped my progression. Avonex and Copaxone actually accelerated my disease. I chose not to go back on Tysabri, and instead, tried a compounded pill called low dose naltrexone (LDN). Although LDN has given me more energy, it hasn't stopped the progression of the disease. When I went in for my annual MRI in November, I had an additional 10+ lesions on the brain and cervical spine. My neurologist wanted to put me back on Tysabri. The ironic thing about this is a few weeks before I went in for the MRI, I participated in the Stratify-2 study with my neurologist’s office partner to see if I was positive for the JC virus antibodies. When my neurologist suggested going back on Tysabri, I told her I wanted to wait for the results of the study before making a decision. Two weeks later I found out my results; I tested positive. My neurologist was quite upset about the findings and she said there was no way she would put me back on the medication now.
If they tested you for the JC virus and it came back negative, you’ll probably be okay taking the infusion. Just make sure you’re vigilant about signs and symptoms of PML while on it. If you feel like you’re having an exacerbation while on it, you need to tell the neurologist ASAP. It’s also a good idea for them to test you again for the JC antibodies after you’ve been on the infusion for 12 months.
As far as a lumbar puncture or DNA test, I don’t think that’s necessary from everything I’ve been told.
I hope this helps! :)
Yes, thanks Bob. I've read quite a bit about the Tysabri and had mixed feelings I guess. I have LOW immunity, and already have precancerous lesions on my esophagus, as well as lesions (masses) in my lungs, spleen, and pancreas. Plus cancer runs in my family. I don't know if you'vse looked at my profile, but I am pretty much the poster child for having as many diseases any one person can have. My liver is enlarged and has dilated ducts, as do my gallbladder and pancreas. Last time I was in the hospital, they were all hush hush believing I had pancreatic cancer. The other masses - and even the one in the pancreas are in positions that are too dangerous to biopsy. My lungs don't have use of the lower lobes bilaterally, and a mass in my spleen is behind the right lung (at one time believed to be my only good one - now only slighty better. The surgeons are too afraid I'd die in the OR - something they just aren't willing to have on their record! Trying to get to the pancreas mass gave me pancreatitis, but I don't care - just pain - I wanted to know the nature of the mass. The whole pancreas except for the tail is enlarged greatly and Ive developed dia betes. I also have pre-cancerous lesions in my esophagus - Barrett's and it's too dilated to fit a laser down to ablate the cells. There are two masses in my right lung they don't know the nature of etc.
Anytime we take these drugs it lowers our immune system more which invites cancers and other invections. I have pneumonia and pneumonitis all the time and just cant afford to risk it. I just hope I can get back on the IgG infusions. Medicaid even recently denied MRIs of my spine. Oh my - I have DDD throughout, and bulging discs and arthritis, but my Cervical spine is so out of alignment that it's dangerous. All that plus MS - hard to believe they denied them. I think I've been written off - it's all I can figure.
I appreciate all suggestions and encouragement though. Thank you. I am just so frustrated that because of actions of my x husband, I've been put in this position as a 10th class citizen. I'm the same person on the inside who used to live in a huge fu n home I designed and built - I;ve a do it yoursefer to the max. (well - used to be). But because of what I did for us myself, we ran in great circles, had great insurance, as I did growing up. To be thrown into poverty due to my husband refusing to work for 15 years - waiting on his "ship" changed my life forever. BUT, God did know it brought me closer to a dependence on Him.
Blessings, Jan
Anytime we take these drugs it lowers our immune system more which invites cancers and other invections. I have pneumonia and pneumonitis all the time and just cant afford to risk it. I just hope I can get back on the IgG infusions. Medicaid even recently denied MRIs of my spine. Oh my - I have DDD throughout, and bulging discs and arthritis, but my Cervical spine is so out of alignment that it's dangerous. All that plus MS - hard to believe they denied them. I think I've been written off - it's all I can figure.
I appreciate all suggestions and encouragement though. Thank you. I am just so frustrated that because of actions of my x husband, I've been put in this position as a 10th class citizen. I'm the same person on the inside who used to live in a huge fu n home I designed and built - I;ve a do it yoursefer to the max. (well - used to be). But because of what I did for us myself, we ran in great circles, had great insurance, as I did growing up. To be thrown into poverty due to my husband refusing to work for 15 years - waiting on his "ship" changed my life forever. BUT, God did know it brought me closer to a dependence on Him.
Blessings, Jan
Jan,
Have you talked to your doctor about the newer monoclonal antibody therapies?
Natalizumab (Tysabri®) , Rituximab (Rituxan®),& Alemtuzumab (Campath®) are all approved for the treatment or investigational treatment of MS. Daclizumab (Zenapax®) has been used "off label" to treat MS. It is normally used to treat transplant rejection.
Bob
Have you talked to your doctor about the newer monoclonal antibody therapies?
Natalizumab (Tysabri®) , Rituximab (Rituxan®),& Alemtuzumab (Campath®) are all approved for the treatment or investigational treatment of MS. Daclizumab (Zenapax®) has been used "off label" to treat MS. It is normally used to treat transplant rejection.
Bob
I stopped. I started on Copaxone and really tried, but my site reactions were over the moon. I also had intense pain on injection (and yes I did it right and tried all the tricks). Then I went to Rebif and had flu like symptoms but worse, I had the same really bad site reactions. I finally had to quit. I subsequently found out I have IGg subclass deficiencies and was put on Immunoglobulin infusions. After my 2nd or 3rd - can't remember cause I go there for blood transfusions too. Anyway, I so fear the risks of cancer, which are sky high for me - with so many autoimmune diseases, not to mention masses here and there. BUT my MS is marching onward and I have more lesions, so who knows. The research that says these drugs don't "seem" to effect the ultimate amount of dissibility effects my decision too. I probably am not a very good test case.
I just think we sometimes forget that these drugs can cause as much harm to some people with MS as the MS. Not others of course. Hard Decision! I truly empathize cause I think about it often.
Blessings, Jan
I just think we sometimes forget that these drugs can cause as much harm to some people with MS as the MS. Not others of course. Hard Decision! I truly empathize cause I think about it often.
Blessings, Jan
Thanks Alex for posting the link. I haven't had the energy. The blood test is avail and I tested negative for JC Virus. But from what I have read they really need to do an LP or DNA test. I hope what I read was old and this blood test I took is something newer.
Here is an article explaining PML and JC. It sounds scary but Doctors really monitor patients. Tysabri works better at stopping progression than the other DMDs but there is more risk. Again like anything you and your Doctor have to way the benefit/risk. They are on the verge if it is not available of having a blood test to check for the JC virus.
I myself would do Tysabri before Gilenya.
www.disabled-world.com/health/.../ms/natalizumab-ms.php
I myself would do Tysabri before Gilenya.
www.disabled-world.com/health/.../ms/natalizumab-ms.php
I've been reading this but not contributed as I never started DMDs to stop them (the side effects bothered me) BUT
what is the "JC Virus"? and PML?
what is the "JC Virus"? and PML?
Thank you everyone for the thoughts and support.
An update...I am still scared about Tysabri but I read up on PML and you have to have the JC virus because that is what triggers PML. Can I catch the JC Virus tomorrow at the grocery store, absolutely, 50% of ppl carry it. I need to read more on that when I get the energy
So my decision at the moment (my local neuro decided to fax my last report to UCSF...Genius I say Genius) is hopefully to try another Tysabri treatment (not scheduled yet) and see if that has any effect on my, and hope I come out of this flare (if that's what it is) quickly.
I told the nurse that if the Drs want me to go on steroids, that I don't feel comfortable continuing the Tysabri due to the added danger from steroids.
So today I am waiting for all the Drs to get together and decide what is the best decision for me currently. I am just taking it easy and waiting to hear at this point.
An update...I am still scared about Tysabri but I read up on PML and you have to have the JC virus because that is what triggers PML. Can I catch the JC Virus tomorrow at the grocery store, absolutely, 50% of ppl carry it. I need to read more on that when I get the energy
So my decision at the moment (my local neuro decided to fax my last report to UCSF...Genius I say Genius) is hopefully to try another Tysabri treatment (not scheduled yet) and see if that has any effect on my, and hope I come out of this flare (if that's what it is) quickly.
I told the nurse that if the Drs want me to go on steroids, that I don't feel comfortable continuing the Tysabri due to the added danger from steroids.
So today I am waiting for all the Drs to get together and decide what is the best decision for me currently. I am just taking it easy and waiting to hear at this point.
D.,
I am taking a break from Ty, right now for at least 3 months, maybe longer. I'm in my "crash" period - the week or so before my next infusion - but that next infusion isn't going to come. It will be interesting to see what happens.
I've been taking care of a sick grandbaby, and yesterday and this morning my spasm activity is really amped. I'm hoping I'm not starting a flair...
I am SOOO done with big pharma. With the dangerous side effects of Gilenya and Tysabri, I really get steamed. What ever happened to the first statement of the Hypocratic Oath - "First, do no harm"?
I have some serious thinking to do, too. Right now, I'm leaning toward IVSM for flair management only.
Good luck, honey!
Lisa
I am taking a break from Ty, right now for at least 3 months, maybe longer. I'm in my "crash" period - the week or so before my next infusion - but that next infusion isn't going to come. It will be interesting to see what happens.
I've been taking care of a sick grandbaby, and yesterday and this morning my spasm activity is really amped. I'm hoping I'm not starting a flair...
I am SOOO done with big pharma. With the dangerous side effects of Gilenya and Tysabri, I really get steamed. What ever happened to the first statement of the Hypocratic Oath - "First, do no harm"?
I have some serious thinking to do, too. Right now, I'm leaning toward IVSM for flair management only.
Good luck, honey!
Lisa
D,
Iv'e not totally quit, but can I share? lol
I don't think you should make the decision right now either, hmpf!
When are you do for the next infusion? Do you have some time to get your body and mind in sync? Surely the doc should understand that - it's more than reasonable.
I'm always willing to leave rebif at the drop of a hat, for what it's worth. Shame on me, no? Just want you to know your not alone.
Your not stupid, just frustrated. One minute at a time, D then one hour at a time. It's all you can do sometimes :)
thinking of you,
Shell
Iv'e not totally quit, but can I share? lol
I don't think you should make the decision right now either, hmpf!
When are you do for the next infusion? Do you have some time to get your body and mind in sync? Surely the doc should understand that - it's more than reasonable.
I'm always willing to leave rebif at the drop of a hat, for what it's worth. Shame on me, no? Just want you to know your not alone.
Your not stupid, just frustrated. One minute at a time, D then one hour at a time. It's all you can do sometimes :)
thinking of you,
Shell
I started with Rebif a couple of months after my RRMS dx. I had to stop after several weeks as my liver enzymes were elevated because of it, and would not come down. At the time my condition was still very active, with 3 relapses within the first year. My MS specialist talked to me at length about this; and said that if I couldnt tolerate Rebif I should try Novantrone to be followed by Copaxone. I was uneasy esp so early in this disease, I saw a neuro at the Partners MS Clinic in Boston for 2nd opinion, he felt I should try Copaxone first; said Novantrone could have serious adverse effects and felt too early to pull out the big guns such as this. Went back to my neuro, it was like the conversation about Novantrone nevr happened, I still dont understand that, anyway put me on Copaxone and I have been relatively stable, one major but brief relapse of ON which I recovered from quickly. The site reactions were painful at first, now I barely feel a thing, have not had lipoatrophy, and no post injection reaction they warn you about.
dear D,
i thinkk you need a ((hug))
I know you have gone through a ringer the last few weeks.
First, rememebr, copaxone is a different medicine than the others, so maybe no adverse reactions to you.
I first was on copaxone...ms not controlled
doc changed me to avonex ... ms not controlled
doc changed to betaserone.... ms not controlled, ins changed (medicare)and too expensive to keep on dmd... didn't help anyways
went off it all for a couple years
i have had some progression always, even from the beginning, so i believe i never had rrms, maybe prms?
decided we can try tysabri in hopes maybe this will help (even though most likely not rrms ) I see my doc tomorrow and will try to quiz him on what he knows of the stats.
take care D...amo
i thinkk you need a ((hug))
I know you have gone through a ringer the last few weeks.
First, rememebr, copaxone is a different medicine than the others, so maybe no adverse reactions to you.
I first was on copaxone...ms not controlled
doc changed me to avonex ... ms not controlled
doc changed to betaserone.... ms not controlled, ins changed (medicare)and too expensive to keep on dmd... didn't help anyways
went off it all for a couple years
i have had some progression always, even from the beginning, so i believe i never had rrms, maybe prms?
decided we can try tysabri in hopes maybe this will help (even though most likely not rrms ) I see my doc tomorrow and will try to quiz him on what he knows of the stats.
take care D...amo
I am only speaking for myself. I quit the DMDs when I found I had PPMS. My Doctors left it up to me. In my case it was a hard decision but now that I made it and know the risk of no DMDs I am okay with it. I have probably had MS for so long slowing progression is a moot point. I am willing to suffer the consequences. It is all benefit/risk ratio and how much each of us wants to risk.
I for example would not want to risk myself to the long term risks of Gilenya. The short term risks are not my cup of tea either. Others feel differently and I am glad it is available for them.
I feel DMDs are great for those in the early stages of RRMS. Unfortunately many of us are in more Progressive stages by the time we are diagnosed and need to examine the literature from the drug companies with a little more care.
So far my progression is slow but it has always been steady but slow. I am realistic being PPMS that in my 50's it should pick up dramatically and I will probably lose the use of my legs.
Alex
I for example would not want to risk myself to the long term risks of Gilenya. The short term risks are not my cup of tea either. Others feel differently and I am glad it is available for them.
I feel DMDs are great for those in the early stages of RRMS. Unfortunately many of us are in more Progressive stages by the time we are diagnosed and need to examine the literature from the drug companies with a little more care.
So far my progression is slow but it has always been steady but slow. I am realistic being PPMS that in my 50's it should pick up dramatically and I will probably lose the use of my legs.
Alex
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