Chat Transcripts

Good evening, everyone. Thank you for joining us. We are very pleased to have with us tonight Ellen Guthrie, Pharm.D, a member of the MSF's Medical Advisory Board. She will be addressing the topic of Advances in Symptom Management for MS. Please welcome, Ellen Guthrie...

Answer: Hello, I am so excited to be here doing this again. Let's get started:-)

Any suggestions when 3600mg of neurontin per day does not stop the burning?

Probably try something else like zonegran, tegretol, etc.

Is there any word if Antigren will be approved by the FDA?

I am anxiously awaiting it also but no I have not heard yet.

what is antigren

It is a monoclonal antibody and is being tested in several autoimmune diseases and MS. The studies are very fascinating.

For those of you just joining us, please feel free to submit your questions for Ellen Guthrie.

How do you feel about DMA therapy with a PPMS dx?

Primary progressive MS (PPMS) can be quite a challenge for treating. The current 4 disease modifying drugs are all that we have so yes, I would suggest that they be considered.

Any advice regarding the burning of sub q interferon injections?

Ice the area before and after, massage the area before and after, make sure that the drug is at room or body temp, spray the skin before injecting with a numbing agent (i.e. ethyl chloride)

Is one CRAB better suited than others for a newly diagnosed person who has a very mild case of MS (only minor mostly visual flare ups)?

Although the case is mild you probably want to treat aggressively to prevent problems in the future. Studies with

Copaxone have a lot of good data and the high dose interferons (Rebif and Betaseron) have a lot of really good data.

are there any new meds coming soon

None that I know of specifically for MS

massage to the area before is new... thank you... also I appreciate your answer regarding the PPMS dx

That is what I am here for. Any more question that you have. If you have the question, I bet a ton of other folks do also

where can we read about this(antigren)

do a google search and check the msf website

Anyone curious about the statins?

For those of you new to moderated chat, when you send it is reviewed to make sure it isn't duplicating another question, the forwarded to our guest. This is the reason for the slight delay between questions. Keep those questions coming, and feel free to ask follow-up questions if you need to.

what is that

Answer: the statins are cholesterol lowering drugs (lipitor, zocor, etc). Early studies show that they may be beneficial to MS patients. I am currently working on an article for MS Focus Magazine about the statins and MS so be looking for more info in the future.

Do the statins have the potential to add to liver problems??

LIke anything, yes the statins do have some side effects. Liver problems can occur. Blood tests to monitor liver enzyme have to be done while on the statins.

ok.....u i have to ask. why isn't there any research being done on LDN for MS

I BET that research is being done somewhere...Good solid research taken takes times and does not occur over-night!

For those of you joining us late, click on the button on the upper right that looks like an ink bottle with a feather pen to view the transcript of our chat so far

Have you heard anthing positive regarding Campath? I would also like to hear about the statins, if you could answer that as well, thanks!

Campath is quite interesting. Basically you get an infusion of drug one or twice per year. The drug causes an immunocomprimised state. This drug really has some bad side effect. I causes Graves Disease (thyroid problems and patients have to take thyroid drugs for the rest of their life). However, preliminary data does look good for it also. AS YOU CAN SEE A LOT OF NEW AND EXCITING THINGS ARE ALWAYS HAPPENING IN MS RESEARCH.

Do you know where one can get help with increasingly high co-payments for RX's?

That is something to take up with your employeers. Remember however their costs are skyrocketing...more so that yours.

Guess I worry with the liver issues... we only have one and seem to be bombarding it with work. Yet, drugs to demish or halt progression are such advancements. A person honestly does not always know what is best for the long run.

As long as you see your MD regularily and have liver function tests done regularily, your liver should be just fine.

Y2ok, as to drug costs, there are also some assistance programs that might apply to your situation. Call the MSF's Program Services department tomorrow at 1-888-MSFocus to see if there is a program that might help you.

i was booted off my puter did i miss the answer about ldn and ms. why isn't more research being done on this

Jenn, you can check the transcript

Click the button on at the top right that looks like a feather pen and ink

Have you heard of any difficulty with the new pre-filled avonex? ie, the side effects were now worse..

Yes I have, the prefilled syringes have a preservative that typically can cause more of the flu like symptoms. It happens with rebif also.

What are the major differences between the ABCRs?

Avonex is low dose interferon. Rebif and Betaseron are high dose interferons. In head to head trials, the high dose interferons were "better" than the low dose interferons (EVIDENCE TRIAL AND INCOMIN trial). Copaxone is a non interferon and has the most long term data in MS. Call the MS Foundation and have them send you the article that I wrote on the disease modifying drugs. It is pretty good if I say so myself.

Do the flu like symptoms go away eventully?

They either go away or you get used to them and they do not bother you anymore. For folks who can't bear the flu-like symptoms, I like to suggest Copaxone for, it does not have them.

Thats good! I am indeed blessed with a Neurologist who see's pts every 3 months

Thank your neurologist and do what he says, you are lucky.

Is there hope of the companies changing the formula's and preservatives??? So many folks find these injections (rebif) so terribly painful.. during and after.

The FDA process to change the formulations is very expensive. Probably not any chance

For those of you joining us late, we're discussing drugs for the treatment of MS with Ellen Guthrie. Feel free to submit your questions.

If I were considering Rebif or Beta Seron, would you have a preference for either of these two?

I see them as being equal in terms of effectiveness. Rebif comes in prefilled syringes and has preservatives. It has to be kept in the refrigerator. Betaseron has to be mixed. It does not have preservatives but would not be good for someone with tremors, etc because mixing could be difficult. Betaseron does not have to be kept in the refrig. Basically which ever one works the best for your lifestyle.

I'm trying to get a diagnosis, but Im scared of injecting myself. How bad is it?

I am so happy that someone asked this questions. I do NOT have MS and have been giving advice for years on how to give injections. I am not having to temporarily give myself subcutaneous injections. I WAS SO SCARED AND ALMOST FELT LIKE A HYPOCRIT FOR IT SINCE I LECTURE AND TEACH SO MUCH WITH MS PATIENTS. Guess what, it is not are bad as you think. For me the 1st couple of shots were the worse and it is not big deal now. Luckily with the MS drugs, autojectors are available that make the injections very easy.

What are your thoughts on copaxone?

excellent drug

thank you! That's comforting

Now they ( the lifelines folks) that rebif can be at room temp for 30 days

Good news for those that travel.

Also, I have bad problems with thinking. Is there a drug for it

That is one of the hardest problems to treat. Ask your MD about Aricept. Also do things that are good for yourself: get a good nights sleep, eat right, exercise, do not drink excessively. These things to can help a bit.

Yes, thank you

Should I be worried that no one seems to know "how" copaxone works or that it's "synthetic?"

I am not. You would not believe how many drugs on the market are like that. We really do not know why they work!

Do all of you know about the on-line forum where you can post questions?

If they don't know how it works do they know it is safe?

Tons and tons and tons of data. Data has been collected for Copaxone for the last 10 years or so.

You can access the Ask the Doctor forum here on the MSF website. From the homepage, www.msfocus.org, click Forums.

How do feel about someone who is not definitely diagnosed with MS and then being prescribed Avonex? Is that safe?

In the past, the drugs were not started until a definate diagnosis was made. Now the drugs are being suggested for patients after one attack who are high risk. The sooner the drugs are started the better.

Please tell us... and any other good sites for information
Ellen Guthrie: Answer: The MSF website msfocus.org has amazing information. Start there. My favorite is the doctors forum...I answer questions there also. Tell your MS friends about the MSF website.

Can I ask you what you take the sub q injections for? Or is this too personal?

Pregnancy

Are any of the ABCR drugs safe for someone that may want to become pregnant?

Copaxone has the best pregnancy rating of B. (A is the best). The interferons are a C. Sorry to keep doing this but we are running out of time, call the MSF and ask for the article that I wrote on pregnancy and MS drugs.

HOw do you feel about providgil for fatique in MS? Do you feel that two 200mg tablets per day is excessive? And is it okay to take this drug every day?

The drug works for some folks very well. YOur dose is not excessive at all.

I'm late. Did you already talk about tegretol? are there side effects?

There are side effects like everything. This drug is amazing for neurogenic pain (burning pain). It is cheap also!!

What is considered a high risk?

women, aged 20-40, caucasian, relative with MS,

in addition to drugs is there anything a person should do to help with ms pain?

Physical therapy is a must, exercise, etc.

I am taking amentidine for fatigue and baclofen for spastisity it seems like the baclofen over rides the amentidine is this possible

Oh yes, baclofen is very sedating but it gets better with time.

Before you go... anti depressants? Any better for MS related or interferon related depression than otheres? Any that do not promote weight gain as a side effect?

Effexor is least associated with weight gain and Paxil probably the most.

Oh good... I was worried. But I think my fatigue is not only MS related.. but related to the neurontin that I take for TN. TN was my presenting symptoms which is rare.
Ellen Guthrie: Answer: Neurontin can make one drowsy but it gets better with time.

Can you describe the differences between amentidine and providgil?

Two totally different animals. Amantadine works on dopamine. It is actually an anti-flu drug but we discovered years ago that it helps with Parkinson disease and MS. Provigil is more centrally acting. It is for narcolepsy. With the anti-fatigue drugs, no one drugs works for everyone so that is why we have so many options.

comments between Welbutrin XL and Effexor??? One superior for MS depression???
Ellen Guthrie: Answer: Probably not. Different ones work better for different people.

Well... I guess you now know as you said the problems associated with self inject initially. I do find that EMLA cream which numbs the site keeps me from feeling the needle stick at all. If it weren't for the burn of the drug.. I would not know I was getting an injection at all.

Emla is great. YOu just have to remember to put it on 30mins or so ahead of time. For absentminded me, I would forgot. That is why I like the ethyl chloride. It works immediately. (Guys I am seeing a lot of my typos, sorry. I am typing fast so as to get all of the questions.)
denise> Question: I was on prozac a while back but it made my face twitch...will other anti-deps probably do the same?

I doubt.

regarding the combining question.. I was meaning the provigil and amenidine

MS folks are typically on a fair number of drugs so with fatigue we try to only use one drug. Antidepressants are good for fatigue also, especially Prozac, Zoloft, and Wellbutrin.

Do you apply ethyl cloride on the skin like EMLA?

It is a spray that goes on really cold.

totally numbing like emla?

Answer: Yes!!

How are dr's sure the 30% reduction in flare ups is drug related or just the course of the disease?

The goal of the drugs is to prevent problems in the future. Unfortunately, clinical trials cannot see into the future and know what would have happened if one had not been on a disease-modifying drug. Please use a disease-modifying drug.

that sounds good! do you have to have a rx?
Ellen Guthrie: Answer: I do not think so..

Sure will thank you... I don't know if I have fully examined the features on the MSF website. I will. Certainly love the Focus publication

The website has many unique features: a peer to peer website, and travel website, etc.

No where is that?

Explain please?

where do you get it
Ellen Guthrie: Answer: Pharmacies...

Everyone, it is a little past our ending time...

I'd like to thank you all for joining us, and a special thanks to Ellen Guthrie for answering all our questions -- while fighting a terrible cold!

Thanks So much for all the information!!!

This has been most informative!!! I don't think that I have ever had such an opportunity. Thank you very very much

Thank You

Goodnight, everyone, and I hope you'll join us for the rest of our chat series.