Aa
4th relpase in 6 months what am I going to do dow?
I've just finished my 4th IV infusion of methopred for my 4th relapse in 6 months..... This was by far the worst. I dont feel any better, My bones ache, I cant eat and I am burnt out. I'm upset and dont understand why this keeps happening to me. I am really trying to lead a healthier lifestyle, I swim I had my hours at work adjusted.
I feel so down. My partner of 6 1/2 years has really let me down I think he is afraid of our future (as in (what future if yor relpasing this often) and I'm so upset, worried and scared.
I am on copaxone but it obviously isn't working. Every 8-10 weeks I'm relapsing each one worse and each taking more and more out of me.
What are my next options? an interferon was mentioned but I am not keen - i dont (from my understanding albeit limited) think that percentage wise its going to slow anything down. My next option is tysabri? is there some kind of baracade on who is eligable adn who is not - I have heard that this is not alone because of side effects but because of expense. This is so unfair if true. HAVE I ANY OTHER options? When is mitox considered and would it help?
Oviously at a witts end,
Sharon
I feel so down. My partner of 6 1/2 years has really let me down I think he is afraid of our future (as in (what future if yor relpasing this often) and I'm so upset, worried and scared.
I am on copaxone but it obviously isn't working. Every 8-10 weeks I'm relapsing each one worse and each taking more and more out of me.
What are my next options? an interferon was mentioned but I am not keen - i dont (from my understanding albeit limited) think that percentage wise its going to slow anything down. My next option is tysabri? is there some kind of baracade on who is eligable adn who is not - I have heard that this is not alone because of side effects but because of expense. This is so unfair if true. HAVE I ANY OTHER options? When is mitox considered and would it help?
Oviously at a witts end,
Sharon
There is another drug, called Cellcept (mycophenolate and another one related to it), that are being used off-label for some MS patients. I think SharleneMA was prescribed it. Historically it has been sued for severe autoimmune diseases like RA and Lupus. It is also a potent immune-suppressive chemo-type agent that carries the usual risks. However, it is developing its own history of PML and now carries a Black Box Warning for PML. I'm not sure there is substantial data showing that MS is improved on it, whereas Tysabri does have this evidence.
Quix
Quix
I'm really sorry that you have had such horrible relapses in such close succession. Your MS seems to be very aggressive.
I know that any of the DMDs take a minimum of 4 months to get underway and longer to reach full effect, but I also see that you are not seeing any slow down at all.
The Interferons work in a different way than Copaxone, so we can't presume that one of them won't work. Now, I have no real grounds for this, but I have gotten the impression from my neuro and remarks reported by other people's neuro's that Copaxone was not a favored med for disease that seemed pretty aggressive.
The interferons are three meds that each have a different dosing. The lowest dose per week is Avonex and the highest is Betaseron. My gut feeling is that B or R would be the next choice. One chemo med that is used off-label (meaning not approved) for MS are azathioprine.. In my reading azathioprine has not been shown to be superior to the approved DMDs for slowing relapses or slowing the rate of new lesion formation.
Mito is approved and is up for consideration when the assessment is SPMS. However, in addition to opening the patient up to severe infections, it also has direct cardiac toxicity. they dose the patient until they can measure the beginning of unacceptable level of decreased heart function. Then no more Mito - ever. So then a person still has MS AND heart damage. It would not be a choice of mine, at least not at my age. Personal opinion. It may have other redeeming qualities I haven't heard of yet.
Aza and Mito are problematic because they are true immune suppressants and have serious infections as possible side-effects. Mito also has direct cardiac toxcity that is not reversable. Mito is approved for Secondary Progressive MS.
You sound like you may be entering a secondary progressive phase, depending on how much improvement you see in symptoms between the relapses.
I am not up to date on what all the meds they use, alone or in combo, for SPMS.
Tysabri has the best track record here, in terms of slowing things down. I believe that some insurance companies require that a person with RRMS have failed two first line DMDs before they will approve Tysabri. So your teatment choices may depend on where your neuro places you on the spectrum of RRMS toward SPMS.
Then there are the more experimental therapies aimed at people with aggressive disease, like HiCy - High Dose Cyclophosphamide. Recently we had people reminding us of the good success that Johns Hopkins has had with this - but the study numbers are still small.
Sometimes the neuros choose to continue with the current med and do supplemental monthly Steroid infusions of 1 to 3 days. If the person is not yet in the range of when the med would expect to be helpful, this can tide them over.
I had a thread not too long ago called "Transitioning from RRMS to SPMS"
http://www.medhelp.org/posts/Multiple-Sclerosis/Transitioning-from-RRMS-to-SPMS-correction/show/1133638
I'm sorry I can't give more advice or info.
Quix
I know that any of the DMDs take a minimum of 4 months to get underway and longer to reach full effect, but I also see that you are not seeing any slow down at all.
The Interferons work in a different way than Copaxone, so we can't presume that one of them won't work. Now, I have no real grounds for this, but I have gotten the impression from my neuro and remarks reported by other people's neuro's that Copaxone was not a favored med for disease that seemed pretty aggressive.
The interferons are three meds that each have a different dosing. The lowest dose per week is Avonex and the highest is Betaseron. My gut feeling is that B or R would be the next choice. One chemo med that is used off-label (meaning not approved) for MS are azathioprine.. In my reading azathioprine has not been shown to be superior to the approved DMDs for slowing relapses or slowing the rate of new lesion formation.
Mito is approved and is up for consideration when the assessment is SPMS. However, in addition to opening the patient up to severe infections, it also has direct cardiac toxicity. they dose the patient until they can measure the beginning of unacceptable level of decreased heart function. Then no more Mito - ever. So then a person still has MS AND heart damage. It would not be a choice of mine, at least not at my age. Personal opinion. It may have other redeeming qualities I haven't heard of yet.
Aza and Mito are problematic because they are true immune suppressants and have serious infections as possible side-effects. Mito also has direct cardiac toxcity that is not reversable. Mito is approved for Secondary Progressive MS.
You sound like you may be entering a secondary progressive phase, depending on how much improvement you see in symptoms between the relapses.
I am not up to date on what all the meds they use, alone or in combo, for SPMS.
Tysabri has the best track record here, in terms of slowing things down. I believe that some insurance companies require that a person with RRMS have failed two first line DMDs before they will approve Tysabri. So your teatment choices may depend on where your neuro places you on the spectrum of RRMS toward SPMS.
Then there are the more experimental therapies aimed at people with aggressive disease, like HiCy - High Dose Cyclophosphamide. Recently we had people reminding us of the good success that Johns Hopkins has had with this - but the study numbers are still small.
Sometimes the neuros choose to continue with the current med and do supplemental monthly Steroid infusions of 1 to 3 days. If the person is not yet in the range of when the med would expect to be helpful, this can tide them over.
I had a thread not too long ago called "Transitioning from RRMS to SPMS"
http://www.medhelp.org/posts/Multiple-Sclerosis/Transitioning-from-RRMS-to-SPMS-correction/show/1133638
I'm sorry I can't give more advice or info.
Quix
I will try to comment on this tonight, but I have no magic answers. This is not an area of expertise. Sorry, that I missed your request.
Quix
Quix
Sharon,
You are so wise being proactive - like shell wrote, so many people ignore the problems and just hope they will go away.
You are doing the absolute best thing - educating yourself and learning about your options now and not waiting to be surprised with choices at the neuro's office.
Shell is right that it takes time for any of the DMD's to kick in and start working - copaxone can easily take 6 months to work. Don't give up now but stay open to other possibilities the neuro might recommend.
As for the situation with your partner, I wish I had magic words to give that would make the future less frightening. I hope the two of you can discuss your MS and talk openly about what both of your are facing.
We're here for you - we'll be around if you need us.
wishing you well,
Lulu
You are so wise being proactive - like shell wrote, so many people ignore the problems and just hope they will go away.
You are doing the absolute best thing - educating yourself and learning about your options now and not waiting to be surprised with choices at the neuro's office.
Shell is right that it takes time for any of the DMD's to kick in and start working - copaxone can easily take 6 months to work. Don't give up now but stay open to other possibilities the neuro might recommend.
As for the situation with your partner, I wish I had magic words to give that would make the future less frightening. I hope the two of you can discuss your MS and talk openly about what both of your are facing.
We're here for you - we'll be around if you need us.
wishing you well,
Lulu
Good question. I had my 1st MRI in June 2009 which showed many enhancing lesions, corpus callosum, left occiptal lobe adjacent to posterior horn of lateral ventricle and many many many more.
My 2nd relpase came in the form of optic neuritis 5-6 weeks later in the other eye (no MRI performed)....
My 3rd relpase was November: sudden tranverse myletitis and MRI was repeated (new lesion in mid medulla oblongotta) nil enhancing.
My 4th relapse was sudden: slurred speech and numbness tingling and loss of power on left hand side - no repeat MRI.
Waiting for review with neuro to see how steriods effected outcome in 2 weeks, when I presume a new course of treatment will be arranged, I just want to be prepared and well educated as to what my offers may be and what will benifit me the best in the long term,,,,
Sharon
My 2nd relpase came in the form of optic neuritis 5-6 weeks later in the other eye (no MRI performed)....
My 3rd relpase was November: sudden tranverse myletitis and MRI was repeated (new lesion in mid medulla oblongotta) nil enhancing.
My 4th relapse was sudden: slurred speech and numbness tingling and loss of power on left hand side - no repeat MRI.
Waiting for review with neuro to see how steriods effected outcome in 2 weeks, when I presume a new course of treatment will be arranged, I just want to be prepared and well educated as to what my offers may be and what will benifit me the best in the long term,,,,
Sharon
Hi Sharon,
You must give yourself a little credit for leaping into treatment to slow progression and reduce relapses. I'm sure I must sound like a nut saying that since you are feeling at your wits end after no relief.
It sounds as if you are not getting that from your partner, so we will give it to you here and I'll start. (((big pat on the back))) Really Sharon, so many choose to not acknowledge or treat - so good job.
It does take time for these meds to become fully effective in your system. At least 3 months for the interferons, and I'm not for certain w/Copax, but hoping someone here will know. So, if it were me, I'd give it more time that way you can say w/some certainty that you exhausted it as an option. Not all meds work for all people, so switching is something that may very well be in your future before resorting to a chemo drug.
Question for you........ Has your neuro ordered MRIs during these attacks? If it were me, with this many attacks, I'd want to know if there were some continual break down of the blood brain barrier (i.e., new and or enhancing lesions). And, if so, it would steer me to or from another course of treatment.
Hang in there best you can,
-Shell
You must give yourself a little credit for leaping into treatment to slow progression and reduce relapses. I'm sure I must sound like a nut saying that since you are feeling at your wits end after no relief.
It sounds as if you are not getting that from your partner, so we will give it to you here and I'll start. (((big pat on the back))) Really Sharon, so many choose to not acknowledge or treat - so good job.
It does take time for these meds to become fully effective in your system. At least 3 months for the interferons, and I'm not for certain w/Copax, but hoping someone here will know. So, if it were me, I'd give it more time that way you can say w/some certainty that you exhausted it as an option. Not all meds work for all people, so switching is something that may very well be in your future before resorting to a chemo drug.
Question for you........ Has your neuro ordered MRIs during these attacks? If it were me, with this many attacks, I'd want to know if there were some continual break down of the blood brain barrier (i.e., new and or enhancing lesions). And, if so, it would steer me to or from another course of treatment.
Hang in there best you can,
-Shell
Hi and welcome to the MS forum. I can't offer you any advice as I am not in that situation but I am sure that some member soon will come along with some info, It must be frightening to have so many attacks so close.
I can only offer my friendship and hugs across the pond. I know there are forum members on here who are on Tysarbri, so hopefully someone in the know will come along and offer you some advice.
Hugs, thinking of you Udkas, wishing I could be of some help.
I can only offer my friendship and hugs across the pond. I know there are forum members on here who are on Tysarbri, so hopefully someone in the know will come along and offer you some advice.
Hugs, thinking of you Udkas, wishing I could be of some help.
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