My mind is made up! I do not want to start another treatment to slow the progression of multiple sclerosis right now. Give me a break, I was the one who felt like I was dying when Copaxone crushed my chest, took my breath away, and blotted my body with hives that itch I was living in an ant hole.
Doctor “"D", you need to get started on another treatment right away."
Me “I do not want to start another treatment right now, I need a break from injecting myself, and I do not feel my body can handle starting a new treatment right now."
Husband “Have you ever known me lost for words"
Me “No"
Husband "For the first time in my life I was lost for words, seeing you holding your chest and trying to breathe. It hurt me to see you like that and I could not do anything for you. I was scared of the thought of being without you."
Me "I did notice something different about you when I was in crisis, I was glad you were home because when you are near I feel safe whenever I am feeling bad. I am sorry I scared you, but I decided not to take another treatment to slow the progression of my MS."
Husband "You can't do that, at least we know Copaxone has been working. You have not had any new lesions since you have been taking it. What about me? Okay, I can understand why you feel that way, but take a few days to think about this some more."
Nurse calling for the doctor again Tuesday, Doctor, "D, have you decided what you are going to do, you really need to start a new treatment right away. You have been doing so well and I do not want you not be on a treatment. You have been on Copaxone for about five years and it did prove to work when you were on it. That is the purpose of being on a treatment to slow the progression of the disease."
Me "Dr. "P", I do not want to start another treatment right now; I am shell shock over what happened last week. I can tell you this, I definitely do not want to take the treatments that require me injecting myself, therefore, the only choice I have is Tysabri. When I am ready again, I will take Tysabri".
Doctor "Good, come into my office this week so we can start the process."
Me "I have an appointment already for May 2; we can do all that then."
Doctor “We should not wait until then because we have to ask you a series of question to start Tysabri (I wonder what that is about) and file insurance papers. Approval can take up to five weeks if we wait until your May appoint, it would be around June before you can have your first infusion."
Me “I have no problem with that."
She was soo insistent, I gave in and my appointment is this morning. I do not like the feeling of being pressured and that is how I feel right now. I know my doctor means well, but she did pressure me into this appointment. I am going with how I feel and I will not be making that appointment this morning. I will see her on my original scheduled appointment...this is my life not hers.
At least my husband is no longer pressuring me; he is willing to accept whatever decision I make. He has been helpful with a suggestion that I am thinking about trying before starting a new treatment.
14 comments:
You do need to regain some feeling of control over your existence and maybe for you, that means doing the appointments when you decide to do so. Your suggestion for Tysabri is an intellegent one, given what we know most people's response is to that drug. I hope Tysabri continues the process of keeping the lesions from your brain as it appears Copaxone did successfully. So, take a breather, and maybe a compromise position will seem reasonable and right to you. You can always decide to call your dr. nrxt week to schedule an appointment inbetween the one too soon and the June one. Of course, that is entirely up to you and how YOU are feeling about your health. I wish you well no matter what you decide!
There are other ways the doctor can work this out ... they 'practice' medicine and should be open to this paradigm shift.
Hi D:
Well you already know where I stand on most MS meds, so I won't repeat here.
I'm proud of you for sticking to your guns with your decision. It is hard enough to GET TO the decision process, harder still to stick to it.
Regarding your doc, I feel badly that she was pressuring you to jump into yet another regimen so quickly, even after you told her your decision.
IMHO, it was rather unprofessional of her to badger you verbally into making an appointment with the mindset to get onto another drug.
I cannot imagine how your husband felt, to witness your reaction to the Copaxone recently. It must have been devastating for him.
Re: Tysabri -- Although many MSers who are on Tysabri have mostly positive things to say about it, I am still not sure about it. My doc pushed me w/ info on it, even after I told him where I stand, saying he just wanted me to be aware of what was available. He's a doctor - he has to say that!! LOL
So, after researching it and polling MSers online, I decided against it. There are some videos on YouTube regarding Tysabri that are very positive, but it didn't sway me.
No one knows your body better than you do. And that's how I feel about mine.
My November bloodwork showed a rather high (ahem) cholesterol and I had to add another pill to the list of daily meds.
The cholesterol drug I take is Pravachol, which has built-in anti-inflammatory properties and the last 3 months have been better than average for my MS for this time of the year.
My cholesterol is slowly coming down (from 400 to hovering now at 190)- hard to maintain with the diet that I have, because of swallowing problems (mostly blenderized food).
My MS doc says my experiences on the cholesterol drug echo what he has been hearing from his other MS patients.
So if you take any anti-inflammatory drug for cholesterol, or any other ailment, you are probably doing better than you think.
I have sixteen brain lesions and three cervical. My last MRI (June 2007)showed no new or active lesions. I am going for another one in two months (its an annual event!) and expect a good report.
Bubbie (http://bubbiesblog.blogspot.com/) has just made a decision to stop her MS injections and she has blogged on how well she is doing. As far as I know, she has remained MS drug-free to date.
Please forgive this long comment - you know I am wordy! But I have been following your blog for a while now and I have been empathizing with you all along.
Feel well,
Hugs, Anne
it certainly IS your life and you should be able to choose what happens next. there is no real reason i can think of that you can't wait a little just to get your body and mind settled.
i like the neurologist that i have as she has never pressured me about the drugs...i am not on any yet. i simply do not buy into the fact that it is the drugs which are always responsible for no further lesions as most of them are only 30% effective.
anyways...take your time and do what you want and need to do.
Anonymous,
Thanks for your thoughtful comment.
It has now been over a week that I have not injected myself with Copaxone. This might sound strange to you and others, but I feel like a death has occurred. Every night I go to retrieve a vial of Copaxone out the refrigerator and it is not there, when I do that a feeling of lose overwhelm me.
My mind is definitely made up to take Tysabri as my next DMD treatment once I and not anyone else decide to go back on a treatment.
Mdmhvonpa,
The key word is "practice" and we need to remember as patients we are being practiced on to further the advances of medicine. Nothing is absolute; I have a post about stem cells I am thinking about writing.
I personally know someone who had a form of incurable cancer. She went through the process of harvesting her own stem cells. I could not believe my eyes when I saw her the other day. She is cancer free and looks fantastic.
Anne,
No comments are to short or long; at this time of transition in my life viewpoints are helpful whether you agree or disagree about what I write on my blog.
I honestly believe there is a reason for everything and people are the vessel of higher existence.
For those who has been reading my blog for a while including the post that were deleted, knows how I feel about Tysabri. Before I can start Tysabri, I need to work through my fear of it. It is my choice because it does not involve injecting myself, after years of daily injections I finally had enough of the adverse reactions.
Thanks for the new blog site, I will check it out.
Merelyme,
I did not keep that open Friday morning. The more I thought about it I was actually pissed for her pressuring me into it. I will address that issue when I see her May 2.
Getting my mind and body right is what I am trying to do (with little success right now). I believe once I take my mammogram and stress test and get the results back during the first week of May. I will be more focused to develop the best plan that works for me.
Hi D...
I received your e-mail and want to point you to the following which was just released this week at the American Academy of Neurology:
http://www.elan.com/News/full.asp?ID=1129853
Here is only a small snippet of what the data shows:
"Biogen Idec and Elan Present New TYSABRI® Data at the 60th Annual Meeting of the American Academy of Neurology
Approximately 26,000 Patients on Commercial and Clinical Therapy Worldwide
Additional Analyses Show TYSABRI Significantly Increased the Proportion of Multiple Sclerosis (MS) Patients Who are Considered Disease Free for Over Two Years
These data suggest that neurologists and patients are increasingly choosing TYSABRI for the treatment of their disease. The significant clinical benefits are established and TYSABRI continues to offer the potential for compelling efficacy and hope for those patients living with MS, said Michael Panzara, MD, MPH, Vice President and Chief Medical Officer, Neurology Strategic Business Unit, Biogen Idec."
You can read more about the data by following the link above.
There is even more data being released about plasmapheresis exchange for anyone who has fears of PML, and that data can be found at the same link.
Okay now I feel the need to tease you about your procrastination, and this is only to get a chuckle out of you (it is not meant to pressure you in any way)...I thought that my caregiver was the worst procrastinator I ever met, but you take the cake D...I believe that you would probably be late to your own funeral! (Decades and decades away, I'm sure) heehee.
Now go enjoy your weekend!
(((((Many supportive hugs)))))
Lauren :)
I just want you to know I relate. i did go off ALL my meds for a little over one year. I felt toxic and needed to re-evaluate. I don't regret it but I do think I waited too long to go back on a treatment. i am on Tysabri now, having my 2nd infusion on Monday and tolerating it well.
Deep breath in & out...take some time if you need to, just don't wait too long. It's your body.
Hugs,
Ammey
lauren, I don't trust data done and presented by the drug co. that profits from it. Even their wording is protective, two years, big deal. Lesions come and go on their own. I have taken mny drug breaks over 11 yrs, improved my QUALITY OF LIFE very time. That Copaxone side effect IS scary and if you are white as me (French genes) you turn RED as RED can be---increasing the scare factor for spouse. Pushy docs would lose me fast, but I live in big city FULL of docs. We are all test subjects for these drugs---we just have to follow our hearts, accept the outcome of our choices and move ahead in peace. I support anyone's choice, just don't fool yourself, 99% of us will progress. And even that is not the end of the world.
Diane,
Tysabri (formally known as Antegren) has been in human clinical trials from as early as 1999, with the Affirm trials starting as early as 2003. The results from the trials have been peer-reviewed by some of the most expert objective authors of the New England Journal of Medicine. Some of the experts were not involved in the trials.
Trials come and trials go..only trials that show efficacy, safety, etc., proceed to FDA filing for approval in order for them to benefit the general patient population suffering from MS. Additionally, I have friends that have had over 61 Tysabri infusions and had been in the trials since 2002. They have remained relapse free for over six years while on Tysabri therapy.
You are certainly entitled to your opinions, and I respect you for same, however you should probably research the NEJM for unbiased findings with regard to the different DMDs. Therefore, your statement "only two years, big deal" holds no merit.
While it is true that relapses come and go, I would rather be on a 67% efficacious MS medication which helps prevent further relapses and that has proven superiority over the other DMDs, including the placebo (or doing nothing, as you suggest having gone off your MS medications intermittently over the past 11 years). This is my personal choice as I do not enjoy progressing in my disease.
I have had MS for 32 plus years, I'm not sure how long you have had MS, 11 years?
I have been on both Avonex and Copaxone before, I am very light-skinned as I am 1/4 French and 1/4 Irish... so you don't need to educate me on the RED factor.
In addition, I choose not to risk having additional silent lesions forming while I feel that my QoL is improving during any "medication break".
Last but not least Diane,you state, "just don't fool yourself, 99% of us will progress" ... having this disease probably more than twice as long as you, and probably suffering the ravages of relapses, their gaccumulating disabilities and disease progression for probably the same amount of time as indicated above...for you to suggest that I might be "fooling myself", only leads to one conclusion, that I am more informed about my disease and which DMDs are effective in slowing the disease process down, than you care to admit to either me or to yourself, take your pick.
I choose to fight my disease with the best MS medication we have available to date, and not just let it progress on its own... I value my life and all I have accomplished to date, with hopefully more to come in the future.
I wish you well Diane.
Lauren
HI D, I understand how you must feel. I have been off all my injections since last December. It's a personal choice and not without pressure from my neuro. The thing is, I don't advise anyone to do the same. Everyone is different, and the disease itself manifests differently and progresses differently in everyone. Looking back I've had MS for at least 15 years prior to my dx.When I started my treatments my EDS score was 6. Copaxone didn't have bad side effects for me but I was told that it wasn't working due to increased lesions and that I needed to treat more aggresively with interferons. Interferons and I didn't get along. I had every side effect mentioned including high fevers and anxiety (no wonder). Not being ready to consider Tysabri (my own bias and cynicism) my neuro told me to go back on the very injectable he said was doing me absolutely no good previously. (and they wonder why I roll my eyes and shake my head) So, to date, I've had no new lesions, still an EDS of 6, and I feel pretty damned good considering. I've been more active, less anxious, more involved in my life than in my disease.
BUT, I admit..this is subject to change. I could and very well may change my mind. Maybe giving into pressure, or maybe just the fear that they seem to be selling, but for now I'm very happy where I am.
Good luck on your journey.
Beingammey and Bubbie thanks for dropping in. Life as an MS’ers is definitely a rollercoaster :( and we all can relate one way or another.
Having that IPIR and coming off Copaxone has been rewarding. I think my body was sending me warning signs because I was experiencing deep fatigue and having to take Lortab too often for breakthrough pain while wearing a morphine patch.
Since that episode, my body feels better than it has in a long time. Regardless of feeling better, I still choose to be on some sort of treatment again. My reasoning is that I believe being on a treatment to slow the progression of MS is better (for my piece of mind) than not being on a treatment.
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