Just diagnosed, need advice on medication

[krp2ten]

I was just diagnosed 2 days ago & my doctor said I have 4 medications to choose from. I'd like advice from people who are actually taking them. I'm a 41 year old female with psoriasis.

My choices:
Avonex
Betaseron
Copaxone
Rebif

Any helpful info would be greatly appreciated.

[sexygatubela]

Copaxone

Dear krp2ten:

Sorry to hear about your diagnosis.

I was also recently diagnosed. I have been taking Copaxone for 2 months. I like that it doesn't cause flu-like symptoms like the interferons. The down side is that injections are daily. I still have injection site reactions, especially in my arms and legs, but I think that is better than feeling ill for several days after one injection. I have 3 children under the age of 4.

Good luck with your decision. Be sure to check Tara's forum for alternative medicine/diet to help you feel better.

God bless.

[Alicious]

I'm in the same boat--newly diagnosed, choosing between those four. I don't have experience with the meds, but I have decided on Copaxone and thought I'd share my thought process.

At 15 years, all have about equal rates of reducing relapses and incidences of new lesions. In this sense, the meds are all equal in terms of their ability to delay disease progression statistically.

They do not all have the same side effects, however. Betaseron, Avonex, and Rebif are all interferons. They come with risks of depression, liver issues, thyroid issues, and white blood cell count issues. They also have flu-like side effects in most people for the first few months.

Copaxone is (I believe) a synthetic myelin, and it operates differently. While it has side effects too, they aren't as significant as the depression, liver, thyroid, and WBC count with the interferons. As I see it, if I'm going to be injecting meds and they all give me about the same prognosis, this one seems the least risky for dangerous side effects.

Copaxone, however, has to be injected daily subcutaneously. The interferons are either once a week intramuscular (Avonex) or basically every other day subcutaneously (Rebif and Betaseron). I've injected myself before; I will take subQ any day of the week.

So, I looked at fewer large side effects with daily injections or greater risk of side effects with every other day injections, and for me, the choice is the drug without as many large side effects. (How risky a drug is for an individual should of course be answered by your doctor.)

This is only how I came to the decision, and I may very well be leaving something out that is critical to your own needs or sense of well being. The fact of the matter is that all four drugs are used by many people, tolerated well, and recommended, so you have to figure out what is most important to you. For me it was side effects. For others it is injection style or another factor.

If you do some searches on this forum you'll see lots of people asking the same thing and getting a variety of answers, but the answers definitely point the way to some good research and information.

Good luck!

I agree with sexygatubela...I was dx recently and started copaxone 3 months ago.

Same with sexy, daily shots but only 15 - 20 minutes of my night is given up dealing with the shots.

So far it is good and I am in remission, hope to stay there.

Do a lot of reading and research before you choose. I chose based on side effects and for me the Copaxone won.

[Sunshyne]

Hi,


I'm 49 ~~ also with psoriasis ~~ugh.

My doctor more or less chose for me ~~ went with Copaxone. In my case, it was because I also had thyroid disease and the interferons can alter thyroid function.

I've been on C for a little over three years now. The site reactions are quite minimal now.

I've been fortunate in my disease course so far. I have documented symptoms going back 20 years. I just had an MRI which is stable from my initial one three years ago. My psoriasis bothers me more than the MS at this point and copaxone has not caused any changes. In fact I'm looking forward to the day when BG12 is approved. Maybe I'll be able to kill two birds with one stone!

Between the MS, Psoriasis and thyroid issues, I'm just an autoimmune mess!

Take care

[colleflower13]

First of all, I know there is a lot going through your head right now, there was when I was diagnosed, but it will be okay. It is very manageable. I was diagnosed about two and a half years ago. I started off on Betaseron, but the every other day shot was too much for me and the flu-like symptoms were too. I am taking Avonex now and although it was a difficult transition and I still experience flu-like symptoms, the once-a-week shot is so much better. I almost forget I have MS until the night of the shot and except for when I am really tired.
Good luck to you!

[Toomnyhats]

Krp2ten, one thing to keep in mind is that the list is POSSIBLE - not guarenteed - side effects. I'm weird - only had/have site reactions.

When I had to chose my options were R & B. I read all of their literature, sounded pretty much the same to me. I asked my neuro the difference, he said "none really" so I chose the one with a lower co-pay. I know, I know - what a way to make such an important decision. But God protected me from my ignorance.

Just as MS is a highly individualized disease, everyone's reaction/tolerance to DMD is different.

[Tomjadg]

meds

Alicious said it well.

Educate yourself on each type, and choose from there. Everyone has different reactions, and you might even have to change.
I've been on Rebif for 5 months, and I've been lucky with no injection problems, and no adverse reactions to the shots. Well, except for the day I decided not to premedicate, and woke up with chills!

Make an educated decision, and join the crowd!

Good luck

[phoebe.]

Hi krp2ten,

I'm newly diagnosed too (about 2 months ago).

For me, one of the big factors was being able to travel for extended periods without needing refrigeration for the meds. I also was more concerned about burning sensation when injecting than the possible flu-side effects.

I chose Betaseron. I've been on it now for 6 weeks and am doing well. I've had just one day with rather bad flu-effects. I take my ibuprofen before each shot and also the morning after.

So far I've been happy with this choice.

Good luck!

phoebe.

[CrazyCatLady]

Sorry about your MS dx and your psoriasis, I have seborrehic dermitis (kinds like psoriasis but only on the scalp.)
My question for you would be how bad is your psoriasis and where do you usually get your lesions? I would think it would be harder to find good injection sites if you have bad psoriasis. With that thought a med that you have to inject less often might work better for you?

I was dx'd on June 30th this year, I choose Avonex the once a week med but after being on it for a month I still couldn't get past the needle (it has a long needle because you inject it into the muscle.) So after about a month of Avonex I changed to Betaseron. Doing really well on the Betaseron, no burning, haven't had any flu like symptoms (I did with the Avonex) and the injection is really easy to do.

Of course everyone is different. On a side note since I have been on the DMD my seborrehic dermatitis has totally cleared up! It is also an immune issue so in my little head the DMD helps it also...who knows? LOL!

[akafearless]

which to choose

i choose the avonex because it is only once a week. You can use a needle which is one inch long.

The side effects can be managed with aleve, etc. and will lesson with time.

Needles only hurt the first eighth or fourth of an inch, so it doesn't hurt anymore than the others because of the length. I don't get site reactions and have only hit a blood vessel one time.

I found some long term users on the MS FB page this week that were using a 27 gauge needle - they said it just glides in - i'm trying to get ahold of my neuro for a script to try it

Good luck, choose the med that fits into your life style.

[CocoH]

Rebif for me

I was dx'd in Feb & started Rebif in June. Yes, I took my sweet time deciding. I was SO AFRAID to start a DMD! The first couple of months were a little rough, but certainly not as bad as I had envisioned. It's hard to realize that for most people, the side effects that you experience (& they can be different for everyone) typcially disapate over time. Now, I experience very, very minimal things. I'm slightly tired the next day & have a slight headache. I always pre-medicate..........I made the mistake of not medicating ONCE. What I experienced in the beginning were: extreme fatigue & headaches & a couple nights of the chills. I also learned that for me, taking the shot RIGHT before bed wasn't a good idea. I do my shot between 5-6 p.m. now & that works much better for me.
Best of luck to you with your decision. Remember, nothing is set in stone. You can always switch if whatever you first choose is not working for you.

[Alicious]

Remember, nothing is set in stone. You can always switch if whatever you first choose is not working for you.

So important it bears repeating--you can switch to another drug if the one you choose isn't the best fit for you.

[knuckle]

I've had MS for about 20 years and have taken Avonex, Rebif, Copaxone, Novatrone and Tysabri. This is what I would do:

I would take Low Dose Naltrexone (LDN - a pill) for six months and see how you feel. If you feel your symptoms have not improved, then start Copaxone, which you can take in combination with LDN if you want. Many neuros prescribe the two together but some won't prescribe just LDN upon disease onset because LDN is an off-label use for MS and there are no FDA studies to reference. There will most likely never be as LDN is a generic drug and no one can make piles of money from it.

I would not take any of the interferons as the data that they are effective beyond three years is suspect. For that matter. so is Copaxone's. This is an interesting website comparing CRAB drug effectiveness:

www.themcfox.com

In my experience, the CRAB drugs did not prevent disease progression. I thought they were effective in the first five years or so but by year 10 I was reliant on a cane, and now use a walker, scooter and wheelchair. Most MS comes and goes in the early years so it is hard to really know if the drugs are working and their FDA clinical efficacy is only based on two years of data on RRMS patients recently diagnosed.

While your neuro may know little about LDN, 1000s of MSers take it with excellent results. LDN is most effective when you take it early upon diagnosis, not after you have exhausted all the immuno-suppressant drugs and permanent damage to your myelin sheath has occurred.

Go to these websites to start your research on LDN:

www.LDNaware.org
www.lowdosenaltrexone.org
www.LDNscience.org
www.LDNers.org

It has always made sense to me to start with the least toxic therapy first and work your way up from there. That would be LDN and next Copaxone. If you decide to give LDN a try, but your neuro resists writing you a script, find another neuro or GP who will as plenty do. My neuro prescribes my LDN and you get it filled by a compounding pharmacy.

Make sure to take the following supplements as well:

Vitamin D (5000iu daily)
Alpha Lipoic Acid (300mg daily)
Curcumin (500mg daily)
Magnesium (600mg daily)
Fish Oil / Flax Oil

Google each supplement with the term "multiple sclerosis" to find research and studies. For instance, Alpha Lipoic Acid has been found to inhibit T-cell migration across the blood brain barrier (just like Tysabri) and is being considered as an MS trreatment. You can take the stuff today.

That's my advice.

[knuckle]

krp2ten,

Another thing...google "low dose naltrexone psoriasis"

Lot's of people report great results. I just saw a presentation from the 2nd LDN Aware Conference in the UK last week where a woman saw her psoriasis clear-up after six months on LDN.

The video will be posted on YouTube in the next couple weeks along with others from the conference.

MS, Psoriasis, Rheumatoid Arthritis, Fibromyalagia, Crohns, Lupus...all autoimmune diseases...all documented user experiences where LDN helped correct the underlying immune system dysfunction.