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Motherly Advice from MS MOMS
Steroid
Weight Gain
Bad reaction to Copaxone
Starting Copaxone.
Does Avonex
cause hair loss?
Can you tell me if you like Copaxone?
Does everyone who has
MS, get shots?
Betaseron, pain at shot site.
Doctor
says my MS doesn't need one of the ABC medications
Steroid Weight Gain
Question: After completing several rounds of steroids, I have put on 40
lbs that I cannot take off. Does anyone have any suggestions? Along with the fatigue
of MS and the extra pounds it makes it very difficult to exercise.
Response:
I can certainly relate to your frustration. When I was
initially diagnosed I also experienced about a 20lb. weight gain. It does seem
like a vicious cycle: gain weight due to treatment but can't exercise due to
fatigue. Start small with exercises. Nothing strenuous - just something as
simple as sitting in a chair and doing small leg lifts or arm lifts. The NMSS
has a video that you can rent which shows you how to exercise in small
increments while recovering from an exacerbation. You may want to talk with your
doctor about some physical therapy or a consult with a PT. They can generally
give you guidance on strengthening your muscles without taxing yourself. Talk
with a nutritionist about your diet and ask for suggestions on how to lose
weight safely. It's hard work to get that steroid weight off but it can be done
and it's really worth it in the long run, because as you pointed out it makes
exercise or just everyday walking much more difficult. Good luck to you! Deb
Doctor
says my MS doesn't need one of the ABC medications
Question: Hi! I need some advice. My neuro has recently told me I
don't have "full blown" MS and therefore don't need to be on one of
the "ABC" drugs. This after he told me I had MS more than 9 months
ago. Most of my symptoms are of the invisible variety. Dizziness, numbness,
chest pressure etc. I am beginning to think he does not truly believe what he
cannot "measure" in some way. I am also wondering if he is working
more for my insurance company than me. From everything I have read, NMSS and
many other MS web sites I thought the purpose of the drugs was to keep it from
getting worse! the way he is talking I would have to be in a wheelchair first.
Any advice?
Responses:
YES!!! Find a new Neuro QUICK!!! I don't know what "Full
blown MS" is & I'm not going to wait around for it to get here either.
I have always heard when MS is suspected get on an ABC immediately, the sooner
the better. Good Luck to you, FIND a new Neuro ASAP.
MSDeb: Walk, don't run to the nearest MS Society Chapter and ask for a
referral to another neurologist. These doctors who don't take MS seriously and
want to play the wait and see game or actually playing with your health. You are
so smart to seek answers from other sources and educate yourself on the most
effective way to manage your MS. You might want to give him one more chance and
take some educational material to him from the websites for the ABC drugs:
www.copaxone.com www.avonex.com www.betaseron.com
Also, please don't let your doctor only give you one choice. You do the
research and then go in with some suggestions of your own as to which drug you
think is best for you. Best of luck to you!
STACY: I have RRMS and my symptoms are like your invisible ( Fatigue,
tremors etc.) I was diagnosed in January 0f 2000 and started taking Betaseron in
March of 2000. The purpose of this and other ABC drugs is to slow or stop the
progression of the disease and the earlier we get on the medication the better
our long term outlook will be. My doctor always used the example that instead of
having 20 attacks over the next 25 years ranging from minimal to severe we could
hope that I would only have 10 mild to moderate attacks. Push to get on one of
the ABC's so you can stay on your feet dealing with the invisible symptoms.
Bad reaction to Copaxone
Question: I STARTED ON COPAXONE LAST NOVEMBER AND WAS DOING VERY GOOD
HANDLING IT UNTIL RECENTLY. SINCE APRIL I'VE HAD A TOTAL OF SIX BAD REACTIONS TO
THE MEDICATION AS SOON AS I INJECT. I KNOW POST REACTION OCCURS BUT IT HAS
GOTTEN TO THE POINT THAT IN THE LAST THREE WEEKS I'VE HAD FOUR REACTIONS AND NOW
MY VISION GETS EFFECTED BY IT. I DECIDED TO TAKE A BREAK UNTIL I GET THE GUTS TO
INJECT AGAIN. I GET REALLY SWEATY AND MY HEART HURTS SO BAD AND DOESN'T STOP. I
TEND TO HAVE SHARP CHEST PAINS ALL DAY ON AND OFF. MY DOCTOR DID AN EKG AND SAID
MY HEART WAS IN GREAT SHAPE. SO I BELIEVE THE COPAXONE HAS A LOT TO DO WITH HOW
I FEEL. CAN YOU WRITE ME AND LET ME KNOW WHAT YOU THINK? I'M TO THE POINT WHERE
I DON'T WANT ANY OF THE ABC DRUGS.
Responses:
MARY: Quick dear call your Dr & tell him about your reactions. I don't
know any thing about "b" or "c", as I am on Avonex. But if I
was having that kind of reaction I would not be taking it. I will be praying for
you. Take care. God bless. Mary
STACY: I take Betaseron and my doctor routinely does a blood test to
check and see if anti-bodies have built up in my blood. You may want to talk to
your doctor and see if it is the same with Copaxone.
PAT: Hi, I don't know if this is an answer for you but I had been put
on this supposedly 'great' new drugs. My husband did all the injections cause I
have very bad tremors. I had the Betaseron shots and nothing happened so the Dr.
tried Avonex and WOW into the hospital I went with all sorts of weird side
effects. I was in the hospital for close to a month to clear my system from all
of this drugs. I am 55 and have had MS since 18 and the Dr. feels that the new
ABC drugs are primarily for people who are just diagnosed. So here I am getting
worse with no known course of treatment for me. Oh and did I mention that I am
allergic to most medications. But, with Gods help, and prayer and a lot of
family who care, Here come SMILEY me. God Bless.
DEB: You really should be consulting your neuro. about your symptoms.
They may or may not be related to the medication. At any rate, it's unwise to
discontinue any prescribed medication without consulting your physician. I hope
you will do so immediately.
Betaseron, pain at shot site.
Question: I am currently on Betaseron every other day. When I inject
myself with the needle I get great pain at the injection site, is there any tip
you can give me to stop this from happening? It really does hurt and taking the
needle is bad enough. Thank you for your time.
Answers:
Mary C.: For pain with your shot I have heard use ICE on the site before
shot for about 5min. They say it works, I take Avonex & I have not
tried Ice. Good luck with your showers. May God Bless you
MSDEB:For the shot site, you might try ice before and after
the shot to see if it helps. If you continue to have a site reaction, you may
want to talk with you doctor about switching meds. Betaseron and Avonex are
interferons and some people build up an intolerance to the interferon. I
personally did not tolerate either drug. Once I switched to Copaxone (the 3rd
ABC drug), a non-interferon, I no longer had site reactions. One of the more
noted side effects of Betaseron is necrosis of the skin (deterioration). Hope
this is helpful.
Cindi: If you're having difficulty with the Betaseron injections, you
need to contact Berlex, the mfg. of the medication. Perhaps you are injecting
into an area that is not healed from a previous injection, or into the muscle.
If you hit the muscle, you're more likely to get an immediate painful reaction
and a knot or lump in the muscle that lasts for up to a week or longer and is
painful to the touch. If you're not using the automatic injection device you may
want to consider getting one out of a magazine or off of a site such as
www.erasems.com it enables you to give the shot with the push of a button and
control the depth of the needle. This will help prevent the injection into a
muscle. Be sure you are also rotating the inj. sites, especially with Betaseron
and allowing adequate time for the tissues to heal. If this problem persists,
you'll need to contact your physician.
Staring Copaxone.
Question: I am going to be started on Copaxone (as soon as it is
delivered) Can some one please tell me how I am going to feel? I know a few of
the side effects but I want to know more. and any other advice any one may have.
Thanks
Cindi: How wonderful that you'll be able to start on a medication to help
control the MS. Each of the ABC's has a web site available. Copaxone has an
informative site as well as their interactive site at www.mswatch.com
There is tons of info available on their discussion boards, they have a good
library, availability of experts that will answer questions from you, several
different kinds of chats, including one for new users to the site and one for
the newly diagnosed with MS. All sorts of people visit the site, those who use
Copaxone and those who don't. I've used it for a year and a half. Previously was
on Betaseron, however, I'll just say we didn't agree with each other. I've had
no big side effects from the Copaxone, other than some injection site
irritations, swelling and itch. But this did go away over the first two months
or so. I was having 5-6 exacerbations a year, prior to starting on the Copaxone,
last year, I had only 2. So, in my opinion, that's a major improvement. I have
never experienced any of the flu like symptoms that some people get with the
interferons and that I got with the Betaseron. Setting up a schedule and
sticking to it is the most important thing. I feel that once you're on a
schedule, you'll be able to incorporate the Copaxone into your daily routine and
won't give it a second thought. Check out their web site, I've found it to be a
friendly place and there's always someone to answer any question you have about
the med.
Mom2All: I am taking Avonex .I am not personally familiar with Copaxone
but will be soo because I am switching. Many of my friends how ever ,are on
Copaxone and they have NO side affect at all. The only things I have heard that
people (some) experience is some burning and itching at the site that goes away
or get less with each day. A few have headaches. Some people get welts at the
site ,but not any that I know. You might experience either a really nice up or
might be a down thing going on there. Sorry I couldn't help more but like I said
I am on Avonex. Hugs and Good Luck with your treatment! Mom2All
Lorna: I am only speaking from personal experience. I must be one of
those people who Copaxone just doesn't work for. I get an increase in the amount
of headaches I get and due to my sensitive skin, I get large itchy welts at the
shot site. I have continued to take it until my Dr. switches me. I have been
very pleased with the amount of help the people at Copaxone give. I have written
for MSXpress a wonderful little newsletter on MSWatch. I have chatted on MSWatch
and made a few friends. Plus the personal nurses at Shared Solutions are always
there to help if you have questions or concerns. One of these lovely ladies
helped me when I quit taking my shots after my legs gave out on me for the first
time. I was so angry at the drug for not working, as this was a new symptom and
that meant progression to me. This lady was very helpful in giving me very good
reasons to get back on my shot regime. To sum it up , I have heard wonderful
things about all of the ABC's, but I will sure be glad when they hurry up and
come out with pill versions of these medicines! (Copaxone is currently working
on one called Coral.)
Does Avonex cause hair loss?
Question: I have been on Avonex therapy since November 1999. Within
the last few months I have noticed that I am loosing my hair. I would say
that I have lost 50% of what I used to have. When I questioned Avonex and
my neurologist they basically said that Avonex does not cause hair loss.
Has anyone else experienced this? All I want to know is am I am going to
continue to loose all my hair? No one can answer that for me. I'd
love to know if there was anyone else out there experiencing this.
Advice Panel Answers:
Nurse Gwen L.P.N.: The medical term for hair loss is called Alopecia. the loss
doesn't have to be restricted to the hair on the head. In each shipment of
Avonex that you receive there is a very detailed drug profile. Referring to
table 3 of the drug profile " Adverse Events and selected laboratory
abnormalities" in the placebo-controlled study, alopecia is listed as 1% of
the placebo subjects and 4% in the Avonex group. what this means is hair loss
was reported by both groups of people in the Avonex study 15 in the placebo
group, 4% in the people that were actually taking Avonex. This would be a
very small percentage of people that experienced the side effect. however, it
was reported or it would not be mentioned in the literature.
Alopecia, or hair loss, can be caused by many , many and I
stress MANY different causes. Something as simple as stress or as complex as a
combination of drug therapies can cause it. Nutrition may also play a part. some
Alopecia is also normal after giving birth. I personally have experienced hair
loss while on a combination of medications one of which hair loss was a side
effect. I have never experienced it from Avonex, myself.
My advice would be to go back to your doctor and express your
concern regarding the alopecia and perhaps ask for a referral to a
dermatologist. This specialized doctor deals with hair loss and may be able to
give you the answers you need.
Mom2All says: To Michele and her question about Avonex
and hair loss... I was on Avonex from 7-99 until 6-00. I have had and continue
to have hair loss. Major hair loss to me. And yes I called Avonex about it and
got the same response you did from them. However I have been off of it for a
couple of months now and am still filling my hands with my hair in the shower, filling
my hairbrush, picking hair out of food I have cooked, stopping up my vacuums on
a weekly basis and my swimming pool filter ,all the drains in the sinks, you
name it my hair is in it in this house I feel like a cat....HAIR IS EVERYWHERE
BUT ON MY HEAD! But. I do still have a good bit left or it wouldn't still be
coming out by the millions of strands. I am not advised as to what other meds
you are taking along with the Avonex but I do know that ANY, Meds a change in
your hormones a change in your diet will cause hair loss .Hair is a very
delicate thing pH balance is very important. Oh my ,I forgot to mention
stress...causes hair loss ,and hair loss causes stress. Viscous cycle eh? I
myself am going on Copaxone in a few months. I myself am also in the process of
buying some Rogaine for women. Not to use on a daily basis maybe just 2 times a
week .It is very expensive , but on a day to day basis try some Biologé® or
Herbal Essence by Clairol®. Don't put a lot of heat to it and use as little
hairspray and gook as possible :)
Cindi Adds: I visited the web site for Avonex (www.avonex.com)
Listed in the prescribing information, under adverse reactions they cite that 4%
of patients complained of hair loss, some severe. While this may not seem like a
large percentage, it is if you're in it. I experienced some hair loss from the
Copaxone I'm on, so it may be just one of the side effects of any of the
"Big 3". It did however markedly slow down after about 6 months. I did
start taking a good multivitamin daily and at my neuros suggestion some
Selenium. Not exactly sure if it was the time, or the vitamins/minerals, but was
glad to see it stopping never the less. If you're not taking vitamins already,
I'd start that. If the problem is severe, then you might want to consider an OTC
(over the counter) product such as Rogaine or equivalent after you talked with
your doc. I sure do hope things get better.
Can
you tell me if you like Copaxone?
Question: I was just wondering if anyone is taking or knows someone who
is taking Copaxone?? I am going to be starting on it and I was just wondering if
there was anything I could find out about it? And also if I made the right
decision with this drug choice?
Advice Panel Answers:
Cindi says: Dawn, You can find out just about everything you want to
know about Copaxone from their website at www.mswatch.com
It's more than just an informational drug site, it also houses a community of
those with MS, a chat room, discussion group boards, newsletters, as well as a plethora
of other info. I personally use the Copaxone, for about a year and a half now. I
don't have any problems with it. I did try the Betaseron in the past, and it
just had way too many side effects for me personally. The number of
exacerbations I've had has decreased and I do feel that overall I've felt better
than I have for a number of years. I've heard very few complaints from people
overall about the Copaxone, and know that if I had to choose again today, I
would still pick the Copaxone. I do feel that it is worth your effort to check
into this. (and to start on it as soon as possible) As a nurse, that is my
personal and professional opinion.
Kookcow offers: I am on
Copaxone and have been for 19 months. I have had no side effects and truly
have made it part of my daily routine. I do my injections in the evening
(9pm) and everyone in my family can do the injections if I have a site that is
tough for me to reach. I travel and enjoy the easy way that Copaxone has
fit into my life. I just had my first MRI since my diagnosis 20 months ago
and there has been no progression of the disease in my brain. I have been so
pleased that I made this choice. Also I have lots of written material that
I can send you if you would like.
J.V. Williams adds: Dawn I was on Avonex for a year. I stopped about 5
weeks ago. I still have four months of Avonex left and will be starting up again
today. After this next four months, I am switching to Copaxone. I think to be on
any one of the ABC's is a good choice. I have heard lots of good things about
Copaxone and not too many bad things at all. in the need, your body tells you
what is the best for you. Everybody is different. I am lucky. I am one of the
people who doesn't get side effects!
Lorna says: I do not have such
wonderful praise for Copaxone but it is not the fault of the drug. I just have
not seen any improvement. I can be on the shots or off of them and there is no
difference. I can be on the Copaxone and have a relapse and off of the Copaxone
and be in remission. I have heard that it is wonderful but hate shots and have a
hard time believing a bunch of statistics when I have not seen any improvement
in myself. However, I do stress that EVERYONE reacts DIFFERENTLY to the ABC
medications. So maybe Copaxone just isn't for me. Copaxone is doing a study
called the Coral study of an oral form of Copaxone. ( Trust me I was first in
line to be a guinea pig, but I didn't qualify.) I will be glad when they come
out with the pill version and will probably have more faith in a painless pill
than a painful needle.
Does everyone who has MS get
shots?
Question: Does everyone who has MS get shots?
Answers:
MARY C: Actually NO they don't but it is highly recommended that they
should get on 1 of the ABC's as soon as possible, the sooner the better. I am on
Avonex and doing very good. There is Betaseron & Copaxone, your local NMSS
can give you info on each of them then you can read up on all 3 of them. Have
you been Dx with MS? Or a loved one? Or just curious? Let us know we can give
better answers when we have more facts. Until then God Bless.
MSDEB: No one has to be on medication, but it's now strongly
recommended, based on medical research which is fully endorsed by the NMSS. You
should be able to obtain info. on the ABC drugs from your neurologist or the
NMSS. You can also research it on your own at each of the drugs' websites: www.copaxone.com,
www.betaseron.com, and www.avonex.com
It's important that you receive as much information as possible about each
drug and make an informed decision on what's best for you. Too many doctors
today are just giving out information on one drug based on its convenience
instead of really exploring the patient's needs. Good luck with your decision
Cindi: Not everyone who has MS gets shots, it is of course a personal
choice. It is however suggested by the NMSS that everyone be started on
some treatment as soon as possible. The development of the ABC meds,
Avonex, Betaseron, and Copaxone has changed the course of MS for so many
people. The meds are designed to slow the progression of the disease and
to decrease the frequency, severity, and duration of the exacerbations. I
know personally that I would not want to take the risk of NOT using one of
the meds available. I know the thought of a shot on a regular basis can be
intimidating, but one exacerbation can be intimidating as well. | 
