Newly Diagnoised and Confused about meds

[nicholeH87]

Hi everyone, I am 28 yrs old and I am newly diagnosed after 4 years of tests and confusion. My disease doesn't progress very fast right now, and over the past four years I only have 4 lesions and it has stayed confined to only on the left side of my brain, no affecting my right side of brain or my spinal cord.

My neuro says she is 80-90% sure this is MS based on the MRI findings, and my CSF results (9 OCB's in my spinal fluid and 0 in my serum) and my IGG index was elevated at 1.0

I'm having a difficult time deciding one, to go on medication or not and two, which one to go on.

I am terrified of needles, but all the other medications side effects scare me away from them, to where I am more inclined to go with the injections.  I was drawn to Copaxone, because of the seemingly lack of side affects and the fact that it has been around forever without PML, or other scary things.  My neuro suggested Copaxone, and also, Plegridy.   Any input on either of these?

I apologize if this is rambling on, but I'm confused.

Thanks for any input you might have!

-Nichole

[firerescue9]

Welcome, I have been on the Copaxone 40 since February 2015.  I have been very pleased so far.  New scans have showed No new lesions.  But I have had a relapse in May.  My Neuro suggested that I start with Copaxone 40 three times a week.  I have had no problem with the injections.  

I did not like the Auto Injector and have gone to manual injecting.  It for me personally is much easier and I have less sight reactions.

Not sure when the Copaxone 40 was first offered for use.  I choose the 40 over the 20 because 3 days seems better then doing it 7 days a week.

Leanne

[nicholeH87]

Thanks everyone for the feedback!  It definitely is going to be a tough decision, but it helps to hear about others' experiences. I just want to clarify that my neuro did make the "official" diagnosis after ruling everything else out. I saw 5 neuros and 2 MS specialist (which my current neuro is an MS specialist) and all of them thought it didn't fit the MS norm.  As far as only having it on one side of my brain, and it only progressing in 4 years from 2 lesions to 4. But I really find it helpful to know that a good place to begin is with the"CRAB" drugs. I found myself considering Copaxone the most seriously. They have the daily injection version, and now they have a 3x per week version. Does anyone know how long the 3x a week version has been out, and if it has different side effects than the daily? I liked the fact that Copaxone had been out for so long, which has given the most information on long term effects.

[HVAC]

MS progresses with or with out symptoms. No one not even a doctor knows when damage will be done. If you have damage you can't get on the meds and they will take you back to where you were before. The meds will only slow further damage. So if you wait til things get worse they may stay worse. It is important to get a MS drug early on. The shots really are not that bad. You get used to it. The needles are small and the auto injectors help a lot. The pill have more side effects.

Alex

[Corriel]

Hi Nichole, welcome to our group. As SC indicated there are some truly knowlegeable folks here.

Deciding on a disease modifying drug (DMD) is a very intense process as you have found out.

Most people start off with the CRAB drugs (Copaxone, Rebif, Avonex and Betaseron). They all require injections and have roughly the same effectiveness rate for slowing disease progression.

The oral drugs are newer and do have riskier side effects as you have found out. Because they are newer their effectiveness and consequences over the longterm are not known.

It is not unheard of for an MSer to need to try out a couple of meds to find one that can slow their MS progression and have side effects that you can live with.

My first DMD was Rebif. Doing injections scared me silly so I thought that injecting 3 times a week as opposed to daily Copaxone was easier for me to maintain a schedule with.

Weekly Avonex sounded good too until I found out it was injected into the muscle as opposed to subcutaneously like the others. I was too chicken to try. :-)

Plegridy was not available at the time I was choosing mine so I can't offer any thoughts on that one.

Rebif was good to me and I could live with the flu like side effects but I have arm issues and injection sites were getting hard to reach so I switched to Tecfidera (oral) after a year.

Essentially go with your gut and choose a drug that you can adhere to whether it is daily, weekly or otherwise. Once you choose a drug that fits your lifestyle, it is totally manageable.

This is one of the hardest questions to answer in your journey so good luck with your decision. On a side note if your neuro has not given you the official diagnosis yet, I would avoid the oral meds because they tend to be more aggressive and if your progression is slow, a CRAB drug is the best place to start in my opinion.

Others will chime in but weekends are a bit slower on here.

Corrie

[suspiciouscombo]

Hi Nichole and a sincere welcome.  Many brilliant minds are housed in this community and no doubt others more sophisticated and knowledgable than I will chime in with feedback.

I'm still in limbo confusion land so I understand your stating "confusion" with this subject.

Please know you have global support here and you did not ramble on at all. On the contrary, you provided enough info for others to understand your question.

Trust me, if anyone requests further information, they will not hesitate to ask .....

Ox