How many just decide no treatment?

[daisy.girl]

I know this is a personal question I must answer for myself, but somehow, someway, I am hoping, praying that I can know what I should do.

I have been allergic to many medications, I have failed on tysabri and gilenya. My neuro will not allow me to try Beta or Rebif, do to my allergic reactions. Avonex, probably not because of my seizures and seizure meds.

That leaves me with Copaxone and Novantrone. I left my neuro's office today with instructions to go research the two and let him know which one I want to try.

Well, I looked up the Novantrone, and well no thanks...that is not for me.

So it is Copaxone or nothing at all......and right now, the nothing at all seems very good to me. I will probably have an allergic reaction to the Copaxone anyhow.

That leads to my initial question.....How many here have just decided on no DMD's? and Why?

[kmarkgraf]

DMD's

Hi daisy.girl this is my very first post on anything, ever so I appologize if I do something wrong or out-of-order...

I don't know all the correct abreviations and terminology but, here goes.

I was diagnosed 10/88. Thru the years I have been on betaseron and avonex and probably other things I just don't remember!! I too am alergic to Tysabri. I have been on Rebif for several years. 2 MRI's ago looked like some reduction in lesions and that motivated me to be compliant in the meds but got tired of doing shots so stopped doing them. Had a small stockpile of Rebif. Then lost insurance almost 2 years ago so stopped ordering Rebif but used what I had on stockpile but, not on a regular basis. Last MRI showed no new lesions. So, I have wondered why should I take a DMD if I hadn't been and didn't have any new lesions. As doctor said MS is a silent disease....u might not be having symptoms but, damage is being done.

Monday I will start Gilenya and I'm afraid I will be allergic to it like I was Tysabri but, I'm going in with a positive attitude that I won't be alergic. I can handle taking a pill every day! I know this isn't answering your question if u should or shouldn't take a DMD just wanted to share my experience... Alergic to tysabri but no problems with rebif...maybe it would be worth a try?

I had a chance to meet country singer Clay Walker who also has MS and mentioned to him it was so hard to stay on therapy, he is a total believer in therapy and hopefully with the gilenya I can be compliant.

My thoughts r try the rebif and hopefully u won't be alergic and it might even reduce some lesions. All we can do it try, right?

Good luck!

***Line spacing added for readability. Some of our members have vision problems with large blocks of type.***

[Spydre]

I know this is a personal question I must answer for myself, but somehow, someway, I am hoping, praying that I can know what I should do.

I have been allergic to many medications, I have failed on tysabri and gilenya. My neuro will not allow me to try Beta or Rebif, do to my allergic reactions. Avonex, probably not because of my seizures and seizure meds.

That leaves me with Copaxone and Novantrone. I left my neuro's office today with instructions to go research the two and let him know which one I want to try.

Well, I looked up the Novantrone, and well no thanks...that is not for me.

So it is Copaxone or nothing at all......and right now, the nothing at all seems very good to me. I will probably have an allergic reaction to the Copaxone anyhow.

That leads to my initial question.....How many here have just decided on no DMD's? and Why?

Copaxone is a different medication than Avonex, Rebif, and Beta, so you may not have an allergic reaction, as it's a completely different drug (the other three are interferon medications, Copaxone is not).

When Copaxone stopped working for my, my MS specialist told me that I couldn't go back on any of the interferons because I had seizures on the Avonex (I have epilepsy, also, but was controlled for 10 years). That's why we went to Tysabri. Novatrone was all the way down at the bottom of the list. I'm surprised that your doc tried you on Gilenya and Tysabri before trying Copaxone, truthfully.

The thing is, if you were looking at the Novatrone side effects, well, it's a drastic treatment - my MS doc said for those who have no options left, and drastic treatment can have drastic side effects. But I would still try the Copaxone. Any chance to prevent permanent damage is worth trying.

[lemstar]

You asked if anyone was not on meds. I am not on med, BUT this is in response to my specific case. My first attack was 31 years ago, with primarily sensory symptoms. I was not diagnosed at that time (they didn't even havce MRIs), but wondered thru the years, as my symptoms never completely resolved. Then, 29 years later, I had another episode. At that time (two years ago), I was clearly diagnosed by MRIs.
After diagnosis, I didn't blink, and just went on Rebif. I wound up with a case of diverticulitis that I couldn't beat, and wonder if Rebif had anything to do with that (I had a history of divertic, but did the Rebif interfere with my recovery?). I wound up with a colostomy due to ruptured abscesses. I chose to stop Rebif, and not to go onto another med.

Since my diagnosis two years ago, my MRIs have not shown any change. I have not been on DMDs for 1 1/2 years. As my MS seems to be slow progressing at this point, I am opting to not take meds. I cannot encourage someone else to do the same. My two MS specialists agree with me, now that they have known me for two years. If they didn't agree with me, I would likely try Copaxone.
Copaxone is an amino acid. As a previous poster said, it is not an interferon.
Its a very personal choice. And a hard one. Collect your info, listen to your docs, and your body.

[daisy.girl]

Kmarkgraf and Spydre.....

Thank you both so much for answering me. I really appreciate it.

To answer your question...I refused a DMD at diagnosis and used LDN for the first 8 months or so, however, my MRI in the short period of time showed 5 additional lesions. My initial MRI showed 10 lesions (but they were small).

After the second MRI, my neuro said, I needed to get aggressive, and he recommended TY and or Gilenya....but now that neither of those have worked for me, I guess he is thinking the copaxone is better than nothing. I am not so sure I agree though.

Oh how I wish this was easier!!

[daisy.girl]

thanks lem....

I have had an increase in lesions and a increase in clinical symptoms.

How I wish this was different!!

[techie]

Sometimes the meds available Just don't work for someone or they don't have insurance to cover them. At least now a days there ARE some meds to help.
techie

[Jules A]

While I totally get how concerned you would be about trying yet another medication with your history from my stand point I would urge you to at least try. You can always stop if it isn't well tolerated.

My opinion is that MS has great potential to be a nasty, nasty thief of a disease and while none of these treatments are a magic bullet they are all we have right now and I plan to run through every last one in an attempt to stave off progression if needed.

Wishing you an easy time of it with whatever you decide.

[kewi1976]

I have been off treatment serveral times with no positive results. Each time I am off, the flareup is worst than before. My neuro encourages me and says that the meds are not going to stop the MS but should slow down some of the effects. This last flareup scared be back to Avonex. I now believe that even though the meds do not cure MS it will hopefully slow down the progression. As for me, I am taking the meds in hopes that one day there may be a cure and to stay some of my activity. Each flareup could be a permanent one and I def want to hold off on that.

[Spydre]

If you are progressing that rapidly with lesion load, I would definitely try the Copaxone. Granted, lesion load doesn't always indicate how many more symptoms you are having, but it's worth a shot. Copaxone could be the one thing that you respond to. It worked well for me, for a time. Yes, it's sometimes inconvenient to have to do shots every night, but I would prefer that to the alternative of getting worse.

[0485c10]

a while ago a study was published questioning the effectiveness of DMD, meds and they are not that effective. many articles were written about the study..in this thread there are links to the article

Reply #3 had links to the study...

it said that those using betaseron achieved only 2 quality adjusted months in 10 years compared to those not usind a dmd.

those that used beta had 6 of 10 years relapse fee compare to those not using a DMD had 5 of 10.

read the articles for your self.

http://www.msworld.org/forum/showthread.php?t=113074

that said, i know how much you have struggled to treat ms with LDN, tysabri & gilenia--it seems practicle to finish your attempts by using copaxone & see if it helps...

on the other hand LDN is an immune enhancer, MS is a disease of a misdirected immune system, so enhancing the immune system is not a good idea & that might have been an especially bad idea for your immune system??.

those 5 lesions may have been a consequence of LDN and you may do much better by using no med and eating healthy..

i just read a treatment doc recommended
for a woman who did not want to start a dmd because of planning to get pregnant.

1. an excersize program suitable for the patient with possible physical therapy as needed
2. low fat, low cholersterol diet
3. Reduced stress level, social, family support, utilize of resources offered by the MS Society..
4. Avoid Heat exposure

and that patient was thinking about pregnancy...

5. The current dogma is that patients to do do better during pregnancy--but postpartum period can bring out a relapse in the disease. doc needs to help the patient access her current disability level


Not much help, really the dmd's are not a one size fits all--you have struggled to treat your MS, i don't think it would be against you to chose to take a rest for a while & monitor the natural history of your MS without LDN,Tysabri, Gilenia . & start copaxone if the natural path of you MS needs to be slowed.

but this is a dileia that has no answer.

[salamandertom]

I thought at first I would try anything, do anything to prolong the inevitable. Now, I am not so sure. The studies are not great, these drugs don't do much, and the first one I have tried isn't working for me. My doctor wants to try it for two more months, but I don't think it is working and honestly I don't think he does either. It is just that we have so much time and money invested into it already, we might as well give it just a little bit longer.....I have had two flares, and several smaller exacerbations on this med.

I will try one other for sure. But after that, I don't think I could try anymore. I just don't have it in me. There isn't a cure for MS, and these drugs don't really do much as it is. I think I would be done if I were you. That is just my opinion. I think you know what to do deep down inside - and you should go with your gut. Good luck deciding.

[dmcmtk]

I agree with other posters, going on a DMD is a personal decision. Do they, will they work?.....yes for some people no for others. I just started gilenya in July after Rebif caused serious depression in Jan-Feb. I'm also pursuing an alternate strategy with vitamins, supplements, and change of diet. There is a good thread here on vitamin D, which I think is very important. When I had bloodwork last March coincident with my first symtom, optic neuritis, my vit D level was 13 nm/l. After reading about a study done in 2007 that increasing vit D levels in MS patients in and of itself decreased relapses, that became my goal. since March my vit D blood level has been 13nm/l, 21nm/l, 49nm/l, 69nm/l. My target is 100nm/l, which was the target of the study I mentioned. So, I guess my point is there are alternatives if you choose not to use a DMD. Good luck and Godspeed. DC

[Spydre]

a while ago a study was published questioning the effectiveness of DMD, meds and they are not that effective. many articles were written about the study..in this thread there are links to the article

Reply #3 had links to the study...

it said that those using betaseron achieved only 2 quality adjusted months in 10 years compared to those not usind a dmd.

those that used beta had 6 of 10 years relapse fee compare to those not using a DMD had 5 of 10.

read the articles for your self.

http://www.msworld.org/forum/showthread.php?t=113074

.

I just wanted to say that I think increased quality of life is better judged by a patient rather than an a cost-effect study. Yes, when I was on Copaxone, I was relapse free for 14 months, but that was 2 less relapses than I would have had (if you go by my history) off of it. That's 14 months of not getting any worse, either. The only incidences I had during that 14 months was the result of a fever. I didn't have to wonder if I would be able to handle leaving the house for x amount of time because my body would break down halfway through. Now I'm back on the relapse cycle, and we've had horrifically hot, dry weather this summer (although August has been great), and I do have to worry about that. I can only hope the Tysabri keeps me relapse free at least as long as the Copaxone did.

[daisy.girl]

thank you all so much for taking the time to answer, honestly, I wasn't sure if anyone would.

I asked my Neuro if it makes sense that MS patients would have a higher rate of allergic reactions due to our over active immune systems.....His response was that in theory that was completely correct, it only stands to reason if our body attack our own myelin, it would really attack an outside substance, like a foreign medication.

I wonder how many MS patients have allergic reactions to medicines??