Just Diagnosed! Need advice on treatments and what questions to ask?

[TheMisses]

Hello,

I posted a while back about possibly having MS and I just got my MRI results and it turns out I have 3 lesions on my brain one large active one that is placed where it is effecting my eyesight (double vision). Dr. said that he wants me to start steroid treatments via IV daily. I also have to start taking one of 3 recommended drugs. Does anyone know anything about the following drugs and pro's and con's to them?
- Copaxone
- Rebif
- Beta-Seron

Also, what should I be asking my doctor? Is there a way for him to tell what type of MS/stage of MS I have? What should I ask at my next appointment?

Thanks,
Anne

[Alicious]

Oh, Anne! I am so sorry to hear about your diagnosis. Having answers is great, but I wish there had been a more boring reason for your issues. Medicines get debated here left and right, but I'll tell you what I did. I looked at the side effects, since the efficacy of the three meds you listed is pretty much the same.

Copaxone: shot reactions--stings a bit and itches. Daily injection. No other common dangerous side effects, although there are always people on any med who don't tolerate it for one reason or another.

Rebif/Betaseron: Shots are painless as shots can be. Three times a week/every other day injection. Side effects can include flu like symptoms (fever, chills, aches), depression, thyroid, liver, white blood cell count.

Nothing is ever this easy, though. Most people on Rebif and Betaseron never have the thyroid, depression, liver, or WBC issues, but they are common enough to require regular blood testing. Most *do* have the flu like side effects, although those can be mitigated with ibuprofen and get better over time. I am personally switching from Copaxone to Rebif, and I have to say the aches are awful all the next day. Some people, however, never feel a thing.

So, which is more worrisome, injecting or potential side effects? For me, side effects were the deciding factor, but some people have real issues with needles, and that's important, too. Also, what do you do day to day? Rebif and Betaseron may make you feel flu-ish the day after the shots. They may not, but it's definitely something to factor into the decision making process. Copaxone is unlikely to make you feel unwell after the shot is done, but again, it's a daily injection.

Good luck to you as you make your decision. It's a personal one, and remember, if it doesn't work out, you can always switch--your decision isn't set in stone.

[techie]

Might also consider price too and insurance. These are all expensive.
techie

[Alicious]

Might also consider price too and insurance. These are all expensive.
techie

Details.

(Great point!)

[rdmc]

If you check in over at the Medications Forum, there are lots of threads on each of the meds you've mentioned.

You can also use the Search function at the blue bar on the top of the page. Use the advanced search, and plug in the name of each drug and do a title search. That way you won't have to hunt through the Med Forum for threads.

I've been on Beta for years. From the start I never had side effects. In the last year (my 7th year on Beta) I seem to have developed some side effects, headache the morning after, and some aches, but they seem to subside by midday.

Just remember whatever you choose, you don't have to stick with forever, you can always change. So just make the best decision you can, based on the info you get, and give it a go.

[TheMisses]

Thanks everyone!

Are there any questions I should ask my doctor about the diagnosis in general on my next visit?

[Mynamegoeshere1]

IMO

Between my diagnosis and appt to go back to discuss treatment, I bought multiple sclerosis for dummies and read it front to back. I bought a journal alongside it asking questions in it as I researched. It had ms complications to medications to their side effects in there and helped me a whole lot. Might be an idea if you have time or if someone can help since your vision is blurred. Best of luck and know this place is an awesome support system!

I started off on copaxone but couldn't tolerate it and am now on Betaseron, but a big decision maker for me was:
1) side effects
2) costs

I called my insurance and got copay amounts for all of the medications. Some of the medications also offer copay assistance. For Betaseron, they pay my copay every month and I pay nothing. They still make almost 3k each month from my insurance though.

[ru4cats]

RMMS videos

Since you are newly diagnosed, I'd recommend you watch the Timothy Vollmer video section of the following link:

http://www.mscenter.org/videos

He goes through all the current and future MS treatments. He is an expert in the field and provides good information. As for me, I have been on Ty as my only DMD since being diagnosed 18 months ago. Good luck!

[Redwings]

Are there any questions I should ask my doctor about the diagnosis in general on my next visit?

Hi Anne:
Questions for your doctor about diagnosis in general are "generally" pretty basic questions. Things like:

1) Why do you think this is MS and not something else?
2) Why did you choose these medications for me instead of something else?
3) Are there any other specialists you think I should see for any other condition? Can you refer me to a neuro-ophthalmologist if my double vision doesn't clear up or returns later? (Having a neuro-ophth who knows you might come in really handy later.)
4) What kinds of problems do you want me to call you about between appointments? How soon should I call you and how soon should I expect to hear back from you?
5) What is considered to be an MS emergency? What should I do if that happens?
6) When do you want to see me again for my next routine appointment? What should I be doing until then? What kinds of information should I bring with me to that next visit?

The best questions to ask your doctor are those that apply to your case and your working relationship with him and his office.

Doctors don't have the time to teach patients about diseases, so general questions about MS are more efficiently -- and maybe better -- answered elsewhere. Fortunately, the Internet is a vast source of information. You just have to be careful about where you learn the facts and how to interpret them.

There is so much to know about MS that it's impossible to learn everything in the beginning, all at once. In some ways, an informed patient has to become a student of their condition, and a Master's degree isn't obtained on the first day, or even in the first year. I think that probably everyone has felt at least once, "Gee, I wish I knew that at the beginning." It's just not possible for that to happen. There aren't enough hours in the day, and it often takes the passage of time for someone to realize the significance of something in order to appreciate how important it would have been to know it earlier.

The downside to the Internet is that folks too easily accept something as fact just because they read it online. So if there's one piece of advice I can give you up front it's this: Learn all of your medical and scientific facts from reliable medical sources. NEVER, EVER use forums or chatrooms as your primary source of medical/scientific information. Misinformation runs rampant online, and there are far too many well-meaning people who have no idea what they're talking about but, in their zeal to be helpful, all-too-enthusiastically share their misinterpretations of "facts."

If you want to learn about MS in general, the National Multiple Sclerosis Society is a great place to start, especially their online section for people who are newly diagnosed: http://www.nationalmssociety.org/abo...sed/index.aspx.

There are sections about the medications used to treat MS and those used to manage symptoms. There are also sections about MS in general and living with MS, with numerous brochures and publications for you and your family available online and by mail.

Then you can search other reputable foundations and medical sites for more information. As you read more about research and the future of MS treatments, bear in mind that you can't properly interpret that information or fully appreciate it until you have the basics down first. There aren't any shortcuts. The better informed you are, the less likely you'll be to fall under the influence of enthusiastic misinformers, whether that's a poster on a forum or a scam marketer touting a "simple miracle cure."

Remember, you can't possibly know everything all at once. It's normal to feel overwhelmed by the changes in your life and how much there is to learn. But do know that, if you stay focused and work step by step, you'll get through it all. MSWorld is a great place to come to ask questions (about what you've learned from reputable sources), share experiences and get support.

[onlyairfare]

I chose Copaxone for treatment because I have a demanding full-time job and couldn't take the chance of feeling like I had the flu 3 days a week.

I quit only because my insurance changed to a plan where "Tier 4" drugs had a co-pay equal to 25% of the list price instead of a flat $5 or $20 or even $100. That meant $800 per month which I couldn't afford, and because my husband and I earn a good income we weren't eligible for any support programs.

If not for that, I'd still be on Copaxone. Fortunately I have done well despite not being on DMD's and I am still at work full-time.

[0485c10]

Is there a way for him to tell what type of MS/stage of MS I have?

not really--its more through observation. You are RR. 85% of MS people RR. SP the other stage you are concerned about would be decline without lesion/relapse. you have three of those that puts you firmly in the RR category. There is a transition period between RR & SP where it is a little of both for a while decline with decreasing frequncy oft relapse/lesions. Not to discourage you from asking questions of your doc, that is always a good thing. The stages of MS:
asymptomatic(lesions without symptoms)->RRMS->worsening RRMS-> SP with relapses still present->Sp with Relapses no longer present.

the video ru4cats found is a very good one. In it one of the docs describes SP as needing a cane to ambulate as when it becomes progressive.

if you go to my home page the very first link is 'how does ms does its damage' If yo go to that website, there is a page for Explaining MS then Prognosis: whats it doing to me it has an explanation of EDSS levels and how lesions/ relapses become less frequent as the disease goes from one stage to the next..how at first there are no symptoms only silent asymptomatic lesions.(lesions below the green clinical threshold line)

that link that ru4cats recommended...it was Dr Augusto Marravalle who went over the basics of treatment thast have prevented any decrease in life span, how once a person gets to progressive they all behave the same--

[0485c10]

The stages of MS:
asymptomatic(lesions without symptoms)->RRMS->worsening RRMS-> SP with relapses still present->Sp with Relapses no longer present.

if you go to my home page the very first link is 'how does ms does its damage' If yo go to that website, there is a page for Explaining MS then Prognosis: whats it doing to me it has an explanation of EDSS levels and how lesions/ relapses become less frequent as the disease goes from one stage to the next..how at first there are no symptoms only silent asymptomatic lesions.(lesions below the green clinical threshold line)

PS. I printed out that graph showing lesion activities with the different stages of MS--then i brought that in with me to an appointment and asked my doc to tell me where I am at on the graph. She told me i am at least worsening MS or early SP but after that its difficult to tell what it is.....you can bring that chart in with you to ask the question gives a visual aid to use for the answer of the detail you expect.

[KyleW]

Between my diagnosis and appt to go back to discuss treatment, I bought multiple sclerosis for dummies and read it front to back. I bought a journal alongside it asking questions in it as I researched.

I agree wholeheartedly! I did the same thing and found this book to be very helpful. I also wrote everything down. There is so much information coming at you when you're first diagnosed that I knew I couldn't possibly remember it all. Having a notebook made it much easier

Kyle

[Lexie]

Redwings said it all! Great reply!