I do promise to be a fully functioning human being again. I have much catching up to do and writing letters. I will probably have some time this weekend to comment and correspond. I miss you guys!
Oh me oh my! Oh my oh me! Oy gevalt! and Hooo weee!
My brain is on overload. Too much to process.
I have many decisions to make it seems. To do nothing is also a decision.
I absolutely do need help and feedback. I will most likely end up doing all these things I will tell you about but I may wait on some.
I actually began to talk of one item on my list on an MS support group list and...I just had to take a break because some of the comments I received were not so supportive. So be gentle with me.
Ahhh the wide world of medication!
I am new to all of this. And make no mistake...I am afraid. I don't want to have MS. I am thinking some good old fashioned denial may be in order. But well...okay I have it. There is no going back. I even tried to shamelessly wheedle a different answer out of my neurologist today. The conversation went something like this.
Me: "So there is no way that my lesions could just go away?"
My doc: "Nope. Looks like they are are here to stay.
Me: "So there is no other cause for my symptoms and MRI findings?"
My doc: "Nope. Everything is indicative of MS. We have ruled everything else out. You get the official diagnostic #340 code."
Me: "You want to talk about meds again don't you?"
My doc: "Yes it is time to talk about treatment again."
See...thing is...I um...had put off the whole meds thing for some months. I wasn't ready. And now... I AM STILL NOT READY!
There...I said it. Please don't guilt or shame me. I know I am lucky to have a milder course of this right now than most folks. I know I am so terribly lucky to get an early diagnosis. Thank god I will not be kept in limbo about all this as some people have for months and years and even decades. I know I am fortunate to have drug choices that people didn't have in years past.
I know.
But this still is such a big decision and I do need to think about it and weigh all the pros and cons.
It is more than fear which is hindering my decison to take meds. It is also the rate of efficacy for any one of the drugs. Let's face it...the efficacy rate is low...30% for most of them. Those are not good odds in my book. Possible liver damage? Needles? Being sick all the time? And...oh by the way...it might work...it might not.
So basically I gotta be sick now in order to not be very sick in the future.
My tricky neuro got me to sign something to get the process started. My insurance needs to approve this very expensive med so we got that started. A nurse is supposed to show up to show me how to do the shot. I told my doc that I am still not at all sure about taking Rebif yet. I was re-assured that I can decline taking it but that of course, I would need to inform her.
She gave me this nifty cardboard Rebif suitcase of information. The picture on this rather tacky box shows a couple who are balancing on rocks and smiling into a sunset. Mmmmmhmmmm....yeah. Gee...that is exactly how I feel! I want to all of a sudden take up hang gliding, rock climbing, and jumping out of airplanes!
Oh...I...just really don't know what I will do.
Anyways....
Number two concerns my mood. This MS is kicking my ass in the mood department. I am normally a bit emotionally volatile. Those who know me are probably smiling...uh...yeah...just a bit. But the MS has made my moods fluctuate even more wildly. And I pride myself on being a fully funtional person who suffers from depression but lately...it has been very hard. To say the least.
I have only taken an anti-depressant once before...I was in my twenties...I had a miscarraige...was going to grad school...had a full time job...tons of pressures in addition to the biological/emotional depression caused by losing a baby and...I reluctantly agreed to taking an SSRI. I got off of it as soon as I could.
I am not anti-meds. I worked in the field of human services. There are times when such drugs save lives. I know that. Yet it has always been my own bias for myself and nobody else that...I could always handle whatever comes without using meds.
But now...knowing that between my own biological disposition towards depression with the addition of MS causing physical problems related to mood....AND if I do decide to choose to take Rebif...this medication also can cause depression....knowing all of this...
I am waving the flag of surrender.
Okay maybe it is time to try something.
Zoloft. I got a prescription for Zoloft today. We will see when and if I take it.
Add to all of this, I decided to take my youngest son who has autism to see a neurologist as well. He is nearing adolescence and he has been experincing his own rollercoaster of moods. I have never taken him to a neuro before. We left with a prescription for Prozac.
I am always a latecomer to everything. Now that I am finally receptive to thinking about meds...seems there is a backlash against them.
Okay...lay it on me. What are your thoughts, opinions, advice, and experiences?
In summary:
1. Should I try Rebif? Now or...maybe wait? My MS is not progressing so far. No new lesions and they have not grown in size these past months.
2. Should I try Zoloft or opt to find more natural treatments?
3. Should I try Prozac for my son?
Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
17 comments:
I remember being where you are when I was first diagnosed...it really really sucks and I empathize with you. Unfortunately, there are NO right or wrong answers and no suggestions I can give you to ease you through this tunnel. You know YOU better than anyone else on the planet and I would say to trust your GUT instincts and you'll make the best choices possible.
I am curious though why your neuro started out with the recommendation of REBIF? Just curiosity...
Linda D. in Seattle
is another drug more commonly suggested? she was fine about me taking any of the drugs. I was the one to choose Rebif and told her so the last time I saw her but..I wasn't ready to actually...take it. I chose Rebif mainly because this is one of the two my insurance will cover. and...in my limited research...it is more effective than avonex...it has thinner needle...less site injection reactions...better efficacy than...betaseron.
i am in research mode tonight.
i will tell you what all i find.
merelyme,
definitely research all the meds you are planning on taking. you can never have too much information. and why not try antidepressants? you have much on your plate ... why not have some help with depression? you can always stop those if you don't want to take them anymore.
xoxo
I'm with braincheese. We can't tell you what to do. With this disease what works for one doesn't work for the other. I'll tell you this, I felt exactly the same way you are now. Do your research about the different meds. I think one of the hardest things is we all just want an answer to what is best to handle this disease. There isn't an answer. I think it is more trial & error. You need to find what works for you and listen to your body.
Sharon
Yes do lots of research.
I put off putting my son on medication, and when eventually i did and saw the benifits i wish i had done it sooner. It made such a difference to his life. Sometimes they do need a bit of extra help, and it dosnt have to be for long.
xx
I had my autistic son started on Prozac 10mg. at age 12 to help with the depression (that flat look on his face and overall depressing spirit) and it was the best thing I ever did for him. I am on it too. Anyone with a life-changing diagnosis should consider it. We were both upped to 20mg/day Prozac after 10 years of taking it.
Zoloft was tried first and we opted to change to another drug because of the suicidal side effects. Just some FYI
RE- MS drugs. Think about it this way. You do not have any new lesions, no active lesions and no changes in your MRI's of late. It is a crap shoot which drugs are right for each person - either doctor preference or insurance preference or after trial and error - patient preference in regard to side effects.
Years ago, plasmapheresis was the school of thought and it only worked for me for about a week before I was back where I started.
Interferons came in one strength and it was enough to sterilize a horse.
Chemotherapy was another choice and it is my opinion that anything that makes me feel that sick cannot be good for me.
So after the first year, I chucked it all, and the only thing I held onto was Solu-Medrol IV's when I needed it and I stretched them out to once a year if I could help it.
I chose to go with supplements and diet with Solu Medrol IV for bad flares. Been doing it this way for most of the 30 years I've had MS. Now I am talking of supplements in mega doses for them to be effective.
You may need a few days of 5mg to 10mg of prednisone per month for those "out of sorts" days but for the most part this has been working for me.
With that said, I do not believe my protocol is right for everyone because everyone has different degrees of MS. Those with progressive should follow the CRAB drug protocol because Progressive is far more advanced than RRMS.
But I do believe one should try to forego the CRAB drugs and first try the supplements and diet way with Solu Medrol IV every 3 to 6 months for flares IF NEEDED.
My blog yesterday speaks to the types of supplements I take - but not the dosages because I was threatened before for saying how much I take, as it smacked of prescribing drugs.
Lastly, do not be forced into making a choice BETWEEN the CRAB drugs. Your choice should be - to take CRAB drugs OR not! Your neuro should be just as receptive to your decisions as you were to his advice. Don't let him push you into starting them if YOU do not feel comfortable taking the drugs.
Unlike other posters who feel they can't tell you what to do, I can't help myself from expressing my opinion!
I am available to you by email. adigeorge2@hotmail.com if you want to chat.
Anne
thank you thank you for these comments thus far. anne...yes i am very interested in what you have to say about supplements. it is going to take me awhile to process all the choices...research...weigh everything.
i just started my son on the prozac today. we shall see!
I, like you, have a milder case than most of the readers and caught it fairly early. I had bad results with Betaserson and Copaxone (I got all the "rare" side effects) and got no benefit from the drugs. I highly recommend reading about Low Dose Naltrexone. (lowdosenaltrexone.org) for M.S. I have had such great results and it has NO side effects whatsoever. You can even use it at the same time as Rebif or any of the other CRAB drugs. You really have nothing to lose. Remember, most doctors won't prescribe it because they know nothing about alternative treatments but you can get it if you want it. I know a few doctors who will prescribe it.
There is no way that I am going to tell you what to do on these issues. I can offer one piece of advice. Natural treatmens for depression do not work. I have tried them.
I was put on an anti-depressant that made me like a zombie. I told the doctor I didn't want it and he switched me to Zoloft.
Zoloft worked fine for me, no effects and eventually I weaned myself off of it, and haven't taken one for several years.
Your treatment may vary, but it sounds like yours may be the kind that the symptoms will go away eventually, and return on occasion.
Eventually you should be able to determine it is coming back by knowing how your body reacts before the relapse.
While you are researching which, if any, drugs for MS you might take, I don't see what harm it would do for both you and your son to take anti-depressant medications. It has to be your decision however.
If I ever have a really bad flare, I will start taking low dose Naltrexone. You might want to Google it before you make a decision. Other than that I've decided not to take any MS drugs and to go on the Best Bet diet instead. So far so good but I know that everyone's MS is different.
Just like MS affects each of us differently, so do medications.
I truly agree with the MS Society's position paper that people need to get on injection therapy as soon as they are diagnosed, even if the MS symptoms are mild. Let's keep them mild.
I like Copaxone. I have been on it since 1999 and it has dramatically reduced major attacks to zero. I have not had a relapse of optic neuritis, pins and needles, or the spasms that I have written about in my story on my blog. In eight years of injecting, I only had a bad reaction twice, both times experienced a real bad hot flushing which didn't last very long. I dislike injecting, but I hate blindness and pins and needles more that I hate the one needle every day.
Eight years later, I am finally starting to transition to progressive MS, but we think I've had MS for 20 years, and most people transition at about 10 years if they are not on meds. I credit the Copaxone for delaying my transition. But I no longer have those major attacks that rob me of two months of memories and functioning.
As far as meds for depression, prozac was too strong for me. I've tried paxil and effexor, both were successful. I am now weaning away from effexor. I found the natural treatments to be worthless - but that was me, and I have a history of depression from pre-MS days.
I'll keep you in my thoughts!
Joan (aka A Short in the Cord)
thank you for all your comments...i really like the diversity of views. i am continuing to think about all this.
I'll chime in. I agree with the others who said that you have to go with what feels right to you, and some trial and error. I can tell you my experiences, but it's not the same for everyone. I had no problems with copaxone. Well, site reactions, but that was a minor inconvenience. It just didn't "appear" to be working. I had more and more lesions and flare ups. Now I'm attempting to tolerate Rebiff and it isn't going well. I have ALL of the side effects and to a degree that I cannot see continuing it. After that...who knows. I wish I had been able to continue the copaxone, but we keep searching for something that at least "appears " to work.
In regards to being a mild case of MS now... I can certainly relate to that. But the one thing that tipped the decision in doing an MS med (or a clinical trial in my case) was that I could capitalize on doing treatment now to delay any further onset of those more invasive symptoms we see other MS'ers are dealing with.
If I can hold off the disease progression (and who knows when that could randomly change) then I'm going to take control of that fact and do what I know I can to effect it in some way. 30% is better than 0% right? Why not live for longer with a milder form of the disease so that when one day medication comes to fruition that will reverse any damage done, you're body will have less that needs reversing!
Anyways, those are my thoughts... I'm sure you'll make the right choice for your body. We're all so different when it comes to this disease.
What ever your decisions are, I'm thinking of ya. My thoughts and prayers with you.
Any time you want to talk, I would gladly be available. I don't have experience in MS other than one of my friends Karleen had MS.
And my Dad had Alzheimers.
Every year, San Diego has a Walk for MS! It's a great cause!
http://www.nationalmssociety.org/site/PageServer?pagename=HOM_EVENTS_challenge_socal
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