Tysabri envy
 

I posted on "that other site" that lately I have been feeling envious of those who experience success with tysabri or other DMD's. It is not that I do not hope that others will continue to do well on these treatments (I do), but I have just been wondering why some of us seem to be so allergic to (or experience problems with) all of these treatments. I have discovered that there are others who feel the same way, and that we all feel guilty for these feelings. So now I am trying to accept these feelings and move on. I think that posting about them has actually helped me. Is that weird? Plus the sun is shining today!:)

I 'failed' at DMDing as well.

hoping something new 'n' different comes along the pike for us, Barb.

:hug:

Barb

You are not alone and I think I've told you that. I am also a DMD failure and that's why I volunteered to be in a clinical trial.

You should never ever feel guilty. Not everyone does well on the drugs that are on the market. That's one thing I've learned through my lifetime. I am allergic to so many meds and foods that I have a 1-800 number on my medic alert tag to call with the ones that are the most dangerous listed.

Who knows why some of us react the way we do to some medications. But that's just the way it is and we have to learn to deal with it. It is frustrating, I know, but rest assured you are not alone. Hang in there and keep talking, you do have a support group here. :hug:

Hi Barb,

I'm sorry you have been having problems with the DMD's and are feeling frustrated. I know how you feel. I'm not having allergic reactions but my body just does not like these meds. I couldn't tolerate interferons. Even on the lowest dose of Rebif I was sick in bed straight 24/7 plus got seriously depressed. I was put on copaxone and told it's the drug that everyone can tolerate well--just some injection site reactions. Well, the C. has made me incredibly and unbearably nauseous such that I had to be given powerful anti-nausea meds that they typically give to chemo patients! And I still feel sick. Oh, and the C. gives me the jitters (anxiety) and flu-like muscle aches. I am almost at week 7 and will probably have to give it up because it is getting unbearable. I feel like such a failure, as if my body is letting me down. And I look at other people and say "wow, I can't believe people can tolerate DMD's with no side effects." Why can't I be like that? So I am entering the "now what?" stage too.

You shouldn't feel guilty for being a little envious. All of us have different body chemistries and if these drugs were perfect products they would come with no side effect profiles and would work 100%. So blame the drug companies! I know there is something out there that can help you! I'm hopeful for you. It's just a matter of finding it with some trial and error. There are also some new drugs on the horizon that are close to coming out which I'm sure you've heard many people tell you about. I have created a folder in my "favorites" section on the browser that is called "Read When Depressed About MS." It has links to websites that keep updates on all the new drugs and close to ending clinical trials going on. I pull these up when I need to feel hopeful.

So hang in there! Don't beat yourself up too much for feeling envious or getting frustrated. :hug: :hug: :hug:

warm regards,
Natalie

I'm sorry they didn't work for you either. When reading your posts I could feel how much it meant to you to at least try.

I'm another who's been allergic to the ones I've tried. It seems there are quite a few of us around. I hope you find something that's right for you, and I'm pleased that it helped you to write about your feelings. :hug:

I'm one of those people who doesn't have allergies or bad reactions, Barb. Stuff just doesn't work sometimes...:(

I didn't use the interferons because I like my liver. I WOULD have had to try them if Tysabri hadn't been re-approved.

Copaxone just DIDN't work. It was like injecting water, except for the giant welts and itching! I was told "that's how you know it is working!" but it didn't work for me.

I got lucky with Tysabri. I never forget that someday it may STOP working for me. For now, it does. When I see someone try it and NOT have it work, I cannot express how bad I feel for them, because it HAS worked so well for me. I think it's like "survivor's guilt".

There are new breakthroughs coming. There's stuff that is in PIII trials right now for MS. When they broke the genetic code they were able to take pieces of genes and see why they do what they do, and they ARE working on MS.

Look how long it took from when the first MS drugs came along! Ask anyone who has had this stupid disease since the 80s. They were there. They had a LOTTERY to see who would get the drugs because they couldn't make it fast enough.

I have a cousin who is younger than I am, she was diagnosed in the early 80s and there were no drugs available. She was diagnosed by being put in hot bathwater!! She has major disability now because the drugs came too late for her. Her sister was diagnosed in the 90s. She went on drugs immediately. She has deficits, but it has been slowed because of Rebif and Avonex and Betaseron and copaxone. Now she is holding back the floodgates with Tysabri, too.

Medicine is going to be an individualized thing someday and people are going to look back and wonder why the heck we thought the drugs we took were so good. We're getting closer to that now. Someday people will just step into a scanner and it will tell them everything they need to do to fix what is wrong. They will have a printout that tells them what they are at risk for and how to fix it. We aren't there yet, but it IS coming.

It might not be there for us but I believe it will be there for our kids.

I don't know if this helps at all but even if it doesn't, I am hugging you right now. There are people here who are fighting for every one of us. Never feel bad for what you need to say. WE will support you and how you feel!

I don't think there is anything at all wrong with how you feel. It is one thing when our bodies decide to start attacking itself causing the MS. Then, on top of it, not accept treatment for it... I am sure there are a lot of feeling that go with it. Anger being the biggest one. I don't see "envy," as much as a longing to feel you were able to actively treat your disease the way others are able to do theirs.

Barb,

I haven't taken any DMD's (mostly due to drug allergies/sensitivities), and I honestly don't think I am worse for wear because of it. I have heard many stories of people who've tried every one of these meds, or have had a poor quality of life while they TRY desperately to adapt them, and then even when they find one that seems to work, still struggle as much as I have (or more!) with the disease in the longer run anyway. :confused:

The touted measure of efficacy on these drugs is relapse reduction . . . that HOPEFULLY leads to slower disease progression for some. Even from the trials, which was a very short-term measure of efficacy, they have not slowed the disease to anywhere near the degree that they apparently reduced relapses. There is a lot more to this disease then transient inflammed lesions and relapses . . . :rolleyes:

I encourage people to try the mainstream options, ONLY because I suspect that each of these drugs has the potential to significantly help a small percentage of people who try them. On the other hand, there are many of us that the drugs don't seem to do anything for too . . . so I think you are actually in the majority, not minority.

There are very few people that I have heard of that have been using these drugs 10 - 15 yrs, and who are more stable or less disabled then Snoopy, Tom, myself and many others I know personally who have taken nothing all the way through. It is the luck of the draw with the meds, and with this disease.

Don't beat yourself up over this. You gave it your best shot with all that is available right now, and that is all you can do. For me, I'm hoping the LDN keeps me stable enough until something natural, or a less gross drug comes out . . . but if doesn't, I've STILL had 17 (mostly) reasonably good years, so far. I think that attitude has helped me too . . .

Cherie

Truer words were never said! If you look at the many MS drug trials, the companies who conduct them hang their sales and marketing hats on reduced relapses, reduction in number of lesions in the brain and reduced chance of progression. Yet the disease marches on in the vast majority of patients. You would think that if MS was solely an auto-immune disease, these drugs would have a much greater effect on a far greater percentage of the people who used them. But that simply is not the case and recent analysis of these trials is starting to show that the drugs are not doing what the companies have advertised.

Any benefits to MS patients is so hit and miss and like we have read, causes a huge amount of frustration for them. I've watched this for over 40 years and it certainly takes its toll on everyone associated with the disease.

Harry

Right on, Harry! You said it when you mentioned MS isn't just about relapses, especially after a number of years and it's progressed to the SPMS stage. There are no relapses but everyday is a struggle just to get up and dressed to carry on our "so called lives".......as you well know. Seems like some research should be going at this disease from a different perspective, but then what do I know other than living with it for 32 years. :(

(((((Barb)))) Many of us can relate to your frustration and questioning. We wouldn't be human if we didn't "vent" once-in-awhile. When I was first diagnosed, there weren't any DMD's, but when they came along I tried with no success. Horrible side effects with all of them. I have been taking LDN for around three years now with NO side effects and the neuro seems to think I've been fairly stable. Of course the damage is already done with wheels being my current feet!!! LOL!! Have you looked into this possibility? It's alot less expensive than the others too!

We're really good listeners, so vent away!!!! Take care......... :)

I am going to bring up LDN at my next appointment (June), but I do not expect him to be very receptive. My neuro will not prescribe anti depressants or stimulants for ms patients. I am switching insurance in July, and will also be looking for a new neuro.

Barb - I am almost in the same state as you. I want my next 3rd ty infusion, but I am not looking forward to it. My sides last mo were very bad. I never stated how very, very bad here. Just the min stuff. I was so scared till I called the neuro - he stated if I was this bad with TY then I would be much worse w/others. So, I do not think I'll try them when not if I get pulled.

I envy some too (most) - it is defined as " Envy may be defined as an emotion that "occurs when a person lacks another’s superior quality, achievement, or possession and either desires it or wishes that the other lacked it." I wish it, but like u I do not wish another did not lacked it nor do I ever wish it to stop.

I envy River and others who have done so well on Ty. I envy another B/c she has so much intelligence, and has had only 2 major attacks in 8 yrs w/no current sx. I envy almost everyone on this board in one way or other. I do not wish them harm; I just sometimes want to be like then in certain ways. :)

I was DX 11-07 w/COPD and tried to stop smoking - failed - weight gain, DX MS 2-08 MS tried to quit - weight gain - I've been on all the drugs... Determinded to stop this mo - 40lb up in freaking 1 mo - 240lbs from 150-160. around 11-07. I refuse to live at this weight - I envy those who did not gain - who took it off fast. That is my real envy.

Until we walk in ones shoes - we do not know them - we all envy.

I wish you the best - with all my love - Blessed Be

I'm another one that wishes everyone on the DMDs great success but I may be too early in the process of grieving because I am in the denial and anger stage of DMDs not working for me.

I am still on Copaxone but having some nasty IPIRs and find myself skipping way too many doses.

I am a cancer survivor, melanoma, and neuro wants me to go to a dermatologist for my first step towards Tysabri but the articles I read scare the heck out of me. Not for everyone does it scare me but with my history with melanoma it makes it much more of a risk factor for me than for others. The melanoma scared me much, much more than MS ever will.

I am truthfully glad that DMDs work for the majority but I am waiting for newest and greatest with bated breath. Thanks to all the people who are willing and able to be test subjects for these new drugs.

So, Barb, you are definitely not alone.

Barb, I think it's totally normal for you to be jealous :)! It rally isn't fair :( that these drugs are failing some people and not others. I keep waiting for something to go wrong with me and Ty. I'll be having my 4th infusion next week and it seems like before each one I'm thinking 'ok, is today the day I'll have a bad reaction?'. It's like I'm always waiting for the other shoe to drop. I think I need an attitude adjustment :)! I hope you get to a new neuro soon, somone who is more receptive to YOUR needs.

You know what, Harry? . . . I was facing this beast when there were no options what-so-ever available to us, and even though I still chose to fore-go using them, there is something reassuring about knowing there are options that may potentially help ME.

I don't think I'd want their job (our specialists) if I had NOTHING to offer my patients. The "over-sell" probably has a lot to do with "hope"; hope is important aspect with this disease. :hug:

Cherie

And that's why I am in a clinical trial!

The one thing that has really improved in my following MS for so many years is these very options you speak about. Marg was in the same situation that you were in....nothing to take and when in the early 90's the CRABs started to appear, she chose not to use them. But there is a number of medications that MS patients have today that allows them a better quality of life by reducing the intensity of their symptoms. For Marg, it was using Prokarin for 7 years and it certainly helped her a great deal.

Very interesting comment. Back in the summer of 2000, Marg had just finished getting an examine from her neuro at the MS clinic. Although she had SPMS at that time, her condition had stabilized (had been on the Prokarin for two months). The topic got around to the CRAB drugs and because Marg was a nurse and had known the doc for several years, he confided in her. He told Marg that in general, the MS docs were very disappointed in these CRAB drugs because they simply weren't doing what the drug companies told them they would do. The patients were unhappy, the docs were unhappy and the families were unhappy. Marg said to him that she couldn't imagine how difficult it was for him to come to work, day after day, and see virtually no progress being made in the fight against MS. He told her that yes, it was very difficult and he and the others just kept on pushing ahead in the hope that someting might change in the future. He told her to take two good vacations a year and that would do as much or more for her condition than any of the drugs would.

But yes, you have to keep on pushing ahead with this hope...it's important despite feeling how lousy one might feel in any given day.

Take care.

Harry