My daughter will start Copaxone soon. She was just diagnosed in June and I was wondering if anyone her age was on Copaxone too and how you're doing?
Anyone 18 yrs old and taking Copaxone? - My MSAA Community
Anyone 18 yrs old and taking Copaxone?
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Cathy616
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Never took Copaxone, however, I chose to take Avonex IM injections, for 12 years, due to the fact it was a once a week injection. I have not had an attack in 16 years. I no longer take it, because I have been on remission a long time & my neurologist said my body needed a break. I have an annual MRI. If there were to be any signs of new lesion activity I would need to take something again. I have now been off of medications for 4 years & doing well. During the 12 years I was on Avonex, I was unusually healthy! I was never sick, not even with a cold. Now I get a cold once a year.
Thank you for your reply. I guess you can say I'm terrified for her to start any of the medications but in the same turn I'm scared for her not to. She is very sensitive to most prescription medicines and started having daily headaches last summer which has led us to the MS diagnose along with heart palpitations and is easily fatigued I'm just worried. I'm glad you're doing well. We've just been through the ringer with neurologist and kinda feeling like we don't know what's the best thing to do. Do you take Vitamin D, my daughter's on her 7th week of 50,000 IU then she'll take a daily dose of 4,000 this was prescribed after she did 3 days of the IV steriods. Just a lot to sort through.
Hi! I'm 48 and was (finally!) diagnosed a little over a year ago. I understand your concern. I am also ridiculously sensitive to medication. I've been on Copaxone for a year and have had no problems with it at all. There is the initial burning sensation right after the shot, but it disappears quickly. Sometimes putting an ice pack on the site right after the shot helps, too.
This message board is fantastic! I've gotten much helpful advice here.
Good luck and best wishes!
Hi cindyrn68! Thank you for your reply. It's hard when you have a high sensitivity to medicine and I'm so glad your doing well with Copaxone. I'm hoping and praying my daughter does well. We just heard today that our insurance has approved it. Thanks also for the tips about putting ice on the injection site after. Did you experience any chest pain or heart palpitations?
Thanks and best wishes to you!!!
The only odd sensation I have ever had with Copaxone is a strange taste immediately following the injection. It's not unpleasant, just strange. I have a heart defect and fully expected to have the palpitations or pain, but I have never experienced it.
I would rather her just have a strange taste than some of the other side effects. I was wondering about the chest pain or palpitations bc she has something going on with rapid heart rate and palpitations that her cardiologist hasn't fully diagnosed yet. He thinks it's either POTS syndrome, Orthostatic intolerance and/or SVT. She was put on propranolol in February to hopefully prevent her migraines and to help with her heart rate but it hasn't helped yet. They've just slowly been increasing the dosage. So I'm hoping that she doesn't experience those side effects of Copaxone and I'm glad you didn't. 
I'd like to add to my reply below since I can't find a way to edit, that I did choose copaxone because I did not want to have those flu like symptoms that are frequent with other meds. I did have one attack of Atrial Fibrillation two years ago but not related far as i know to Copaxone. I have not had another incident yet since then.
What happened or what did you do when you had the Atrial Fibrillation attack?
My husband who was golfing at the time called a neighbor who was a cardiology fellow and also called an ambulance since I was hesitent to do so. The neighbor had a little ekg machine attached to his iPhone...He saw I had A-fib right away. I have since bought one of those little ekg devices--rather nifty! I spent the day in the ER. by noon, 3 hrs later, my body automaically reverted to normal so meds were withheld. I was dismissed later that night after several other tests were done. It has been 2 years since and I have not had another episode like that.I may have been a little dehydrated-that is my theory since I'm not a great drinker of water-but I don't know for sure what brought it on.
I have never had that reaction of palpitations or breathing effect which is a rare but known effect of Copaxone. Even if it happens it is usually not considered an effect worth worrying about but recommended to stop the med until contacting your neurologist. But as I said it is not something most people experience. The only SE I have as I mentioned is itching at the site for a day after the injection and the indentations that occur after many years on the drug.
I do rotate the sites regularly and mark my calendar carefully to be sure that I rotate them.
The shared solutions company does supply calendars and stickers and white boards to help with rotation schedules.
Thank you for your response. We too looked at the side effects with the other medications and even though I know my daughter isn't thrilled about an injection it seemed to be the best option and less monitoring. Plus she tested positive for the JC Virus so the PML risk (even if done meds carry a low risk) just didn't seem worth it. I just am praying that she does well on Copaxone bc she has been thru so much this past year. She graduated high school while suffering from everyday headaches/migraines and extreme fatigue. She as always worked so hard throughout school and received a scholarship but for now the college has been so understanding and has deferred her until the Spring semester.
I agree, Shared Solutions has been wonderful and everyone I've had to speak with have been so nice--took awhile for our insurance to approve her medication. We are scheduled to receive it this Tuesday and then we'll schedule the nurse visit for training. Fingers crossed!!! Again, thank you so much for feedback!!!!!
Yes, I do take Vit-D & calcium, but only within the last 5 years. I too, had the IV steroids, with my last attack, to help reduce the severity & duration. I've only had 2 attacks & both of them lasted 3-4 months & came on & went away, suddenly, in an instant! I know how scary you & she feels. I can only say, try to think positive & pray, that she may never have another attack. You're already doing everything possible to prevent this, & that is all you can do. The interferons help keep any future attacks @ bay, by 33%, which doesn't sound like much, but it's better than nothing.
Hi WendyMarie! Besides the vitamin D and calcium to you take any of the medications. I wish a supplement alone, even if it were more than D, could be enough to keep MS activity at bay. We are staying positive and praying and my daughter has been extremely brave through everything leading up to the diagnosis. She suffers daily with headaches which started this journey and nothing as helped on that end. We just want her to have the best quality of life possible as we do for anyone with MS. Not a straight forward disease to deal with but definitely positivity is the key even though the scary thoughts do creep in sometimes.
I think a lot depends on where those lesions are located. I had two on my spinal cord and the first major symptoms I had which led to diagnosis was Transverse Myelitis. I can't say I have had a major symptom like that since. I have some other common symptoms like OAb and urgency and constipation, but those symptoms also occur with aging and post pregnancies or which I had when I was in my late 20's and 30's. I don't no how many lesions I had in my brain but I know it was a few and none were active and may have been old ones. I had no idea I had any MS problems until the dx.
My daughter's first MRI showed about 7 lesions in the brain, second MRI no new lesions but in June her third MRI showed 2 new lesions with one being active. That's when they had her do the 3 days of IV steroids and shortly after prescribed the Vitamin D. Next week will be her last week of the 50,000 IU and then she's suppose to take OTC Vitamin D 5000 mg daily. I'm thinking about other supplements like C, E and a B.
LOOK into these vitamins. I take Ester C, E, Vit-12-sublingual. I take a lot of other ones as well. My neuro thinks I'm ridiculous, but because I limit a lot of foods on a lower carb lifestyle, I don't think I get the full compliment of vits. I need. I take D3-5000 units b/c I don't spend hardly any time in the sun.
In my latest readings I have seen reports that show that lesions come and go on MRIs. They're not static as one would believe at least that's what I think is what happens. Also there's not usually a great correlation between how one feels and symptoms or lack of as to what's on the MRI.I still haven't had an MRI since I was diagnosed 10 years ago. I see my neurologist next week for my yearly exam so who knows what he's gonna say. I guess it's possible he may want to get one after all these years as a comparison but I'm not sure and I'm not sure it is going to mean anything. Most important is how one feels
The more you read and learn about MS the better it will be for you when making decisions. I do know that the Copaxone distributer, Shared Solutions, is very proactive in helping you when on the medications- with nurse support and information. I'm sure others are as well but I am not familiar with the others as I haven't taken any other medication. I assume your daughter had a low D3 level. I have been taking between 4000 and 6000 IU D3 over the counter supplimentation many years now mainly because I don't go out in the sun most often and live in an area of high MS statistics and little sun. I take a LOT of other suppliments mostly because I keep my carb level low and I know I don't get all the vits and minerals, etc that most get from food. I had my D tested a few years ago when I was already taking it and it was normal.
Sorry. I meant to mention that her Vitamin D level wasn't low. Her neuro said it wasn't where he wanted it to be with MS. I guess her levels will be checked at her Sept. follow-up appointment. She's starting to have some burning sensations around her knees and sometimes her vision goes dim. I just hope these symptoms will go away when she starts her medicine but I don't know if that even happens. She keeps going and never complains, she's been a trooper.
Glad to year your response. My daugher was on Avonex for 13 years and doing so well her neuro took her off medications as well recently. I was surpised to here this. you are the first other person I've heard this situation from.. I'm on Copaxone 11 years now. Doing well. haven't had an MRI since dx 11+years ago.
I'm a lot older than my daughter and she is a lot more active than I am but who knows maybe I'll come off medications it at some point. I guess when I do get another MRI it may show if their are any significant changes.
My first attack was 11+ years ago with transverse myelitis. Since then I can't say I've had any other major attacks. My neuro thinks it is because the mediation is working and why he doesn't feel that MRI's are necessary since don't often reflect how the disease it really going. Little things bother me but I can't say for sure all of them are MS rather than aging symptoms. I do get Ms hugs now and then and sometimes sensory feelings that are hard to describe. but they are very mild. And my feet which have numbness resulted after the transverse myelitis. It does not hamper my walking ability.
Consider Protandim. It's herbal and was tested and found to be stronger than Tecfidera for fighting MS. Get it on amazon. Safer than Copaxone and you can tell quickly if it works or not. It can help the whole immune system function and protects the brain.
Hi katepoet! I've never heard of Protandim. Is this something you take in combination with a MS medication or alone. I've been thinking of having her take other supplements besides vitamin D which her neuro started her on after she did the IV steroid treatment.
I don't take it with anything else. I hated taking Copaxone. The shots made me bleed and I knew it was doing damage to my system even while it helped a bit.
The only DMD you cannot take Protandim with is Tefidera as they both work on the same Nrf2 pathway.
I never heard of Protandin so I did a quick search. I'd have to read more but it seem there is hardly if any human clinical research has been done on this. There is also LDN that many swear by as a medication that helps MS, although in this country a lot of neuros are skeptical. Prodantin is a suppliment of 5 other antioxident herbal suppliments. It is really logically not easy to know if you take this including any MS drugs if it is helping your MS. One article said protandin is supposedly natural but found out it probably isn't. If you take any suppliments (and I take a lot of them) and MS medications (or not) and you feel great and are walking around, that does not mean the MS medications are not working. There is a lot to say about antecdotal treatment that is definitely helpful, even psychologically, but feeling good may have something to do with where the lesions are and if the ms mediction is doing its job. I have a friend who was dx'd with ms and took meds then came off them. Then one day she had one sided facial numbness. she went back on MS meds and far as I know has not had the problem. My neurologist asks me why do I spend so much on suppliments? I know he feels it is unessessary, but I know I dont get a lot in my diet and I do feel pretty good. As long as I think they help then it is probably a positive effect. It isn't enough for me to come off my MS medication, however..
Do you mind me asking what supplements you take. We've been really working on how we all eat, trying to eat more vegetables and fruit and mainly chicken. She's also been making a lot of smoothies with fresh fruit.
Acetylcarnitine (acetyl L-Carnitine) po +Alpha lipoic acid. 500mg. Plus Ester C 500mg.
RE: antioxidant; anti cell aging nutrition;
cardio health; cog fx; fatigue; BP support
B-12-500mcg -1000 mcg✅ sublingual
Asa 40.5 +/-mg Qd new schedule ✅1/2 Qod -----prevention -not necessarily for A-fib-
Calcium citrate +D3,160mg. magnesium,B6,
Collagen -oral ✅ 6gms/day
Rx Premphase-progesterone,estrogen
RX-Copaxone. 40mg subQ 3x/wk
Cranberry caps qd
Curcumin (turmeric)450 to 1160 mg
Re: antioxidant; protects brain cells; 4 liver
health; inflammatory response
Ester C -500 mg
E 800 gd ✅
Ascorbic acid C-1000 sustained
Fish oil -omega3-1199 mg QD
Glucosamine/MSM + 1000 IU D3
Hair, nails, skin SUPPLIMENT- ✅has vit. A, and Colligen -& misc other supplements
Krill (oil)- 500 mg
L-Lysine--500mg✅-need to order
Lutein 40mg
Re: antioxidant for eye health. Protects from
free radicals; filters out blue light &
ultraviolet radiation
Magnesium-400 or 500 mg qd
Methylsulfonylmethane MSM oral
N-acetyl cysteine
PRN-Metoprolol 25mg (not used)
Probiotic-90 billion✅ PRN
Ubiquinol (coQ10) -100mg
RE: antioxidant- vs free radicals
RX---Vesicare 1/4 tab Qod ✅ ( new schedule)
10/30/15. Restarted then rescheduled
TOPICAL-dermatogical:
Clobetasol lotion .05% topical
.05% diflorazone ointment
With .5 %LCD compound
OTC antibiotic ointment
OTC for psoriasis
cortisone ointment 1.0%
for psoriasis
Sorr I didn't see your request. Most professionals will tell you to eat well and get necessary vitamins and supplements that way. But I've been living a low carb lifestyle so I dont know that I get everything I need. For example, I don't drink OJ, I don't drink milk (just half n half for coffee); I eat low car fruit but not everyday. I don't go out in the sun much.
The list below includes my prescription meds. which are not many.
It's hard in these types of online post to remember what and when I did post things but I think I did say today somewhere else maybe here yet I may have been taking too much D3 so for now I cut that Wayback and my internist wants to repeat the test in six months. I was feeling great however. This week I'm not feeling so great but it may have nothing to do with Changing my schedule. So right now after two weeks of having no vitamin D3 or calcium that contained vitamin D3 I am back on half the amount of calcium I was taking which means I have the amount of more than half the amount of Dh3 and will have it retested again in six months. I still think that there's a lot more to know about MS and we know so far and it is so individualize per person one advises me not be good for another. And although I think it's important to keep in touch which ones neurologist, they are not all on the same Page either. just as an example, the main organization so I've been told says if you have a mess you should have an MRI every year at least. But now I read that's not true for everyone or every neurologist. it probably is helpful and some conditions but it will not tell you the outcome of your disease or what's going to happen to you. It may or may not tell if your medication is working.
I took Copaxone for 6 months from 6 weeks after I was first diagnosed 4/23/2011. Then I switched to Protandim and I've taken it daily since then so since December 2011 or so. I was unable to sit up 5 years ago and I could not think. I was just waiting to die to let my family off the hook of caring for me. Now, I run a support group for people with MS and other diseases. I tutor. I write academic papers. I copyedit writing and teach people how to write.
Never had a relapse but June 2011, I fell getting out of the shower and landed in a wheelchair. I had 24/7 spasms in my legs - kicking non-stop. Now just a few minutes a day and not every day.
I eat a non-inflammatory diet. I take supplements that fight MS.
At the beginning I had one food. Now I have about 10 foods.
In 2 weeks I start a trial of medicinal mushroom tea that in mice stopped a lot of dysautonomia.
What else would you like to know?
You've done a lot of research and I appreciate your feedback and the links you provided. I've never had Facebook but when I do can I let you know. I did want to ask what other specific supplements you take that can be beneficial for MS?
Kit Minden supplements
Name Amount Reason
Iron18 mg dailyFatigue
D35000 IU daily, 50,000 IU once a weekFatigue, multiple sclerosis
Creatine2500 mg once dailyMuscle strength
Grape Seed Extract100 mg dailyLymphedema
Selenium200 mcg dailyLymphedema
Pyridoxine P5P (B6)50 mg dailyLymphedema
Essential Enzymes3 daily/ 1/mealDigestion/multiple sclerosis
Vitamin E400 mg dailyDeficiency due to MS, cardiac health
L-theanine200 mg/10 dailySleep, and for strengthening nerves to stop the incessant itch
Rhodiola500 mg dailyHerbal adaptogen for MS, and anti-depressive
Acetyl-l-carnitine arginate & alpha lipoic acid500/100 mg 1 with each meal Amino acid produces energy, counters nerve pain, muscle movement/antioxidant attacks free radicals fat and water soluble, aids brain function
Inosine500 mg, 1 with each mealStrengthens axons (nerves), fights MS
Evening Primrose Oil500 mg. mealAids digestion, fights inflammation of MS
DHA omega-3 fatty acid200 mg/1 with each mealAids digestion, fights inflammation of MS
B12Sublingual 2000 mg dailyDeficiency with MS, fatigue
D-mannose500 mg 3x dailyUTI prevention
N-acetyl glucosamine500 mg with each mealAids digestion, fights MS
Simethicone180 mg 2 per mealGas, aid digestion and minimize pain
Protandim5 herbs in one pill – curcumin, ashwaganda, bacopa, green tea extract, milk thistleTested stronger than Tecfidera in a clinical trial for fighting MS, protects oligodendrocytes
Calcium citrate250 mg, 1 each mealAbsorbs oxalic acid, puts lichen sclerosis into remission
Caffeine100 mg as neededFor alertness so I can tutor
BicarbSodium and potassium bicarbonateWith caffeine to prevent UTIs, absorbs acidity
RemagPico-ionic magnesiumStopped the hug, cut drop foot back, allows legs to get stronger
Biotin powder300 mg dailyClinical trial made 100% of people with MS stronger
Wow!! That's so helpful. Thanks for listing each one and what it's for. I've tried to read and read about different supplements and everything else I can find about MS but have just felt confused and overwhelmed so this helps so much!!!
I'll let you know when I set up a Facebook account. A lot going on not just with my daughter being diagnosed with MS recently but my mom has dementia and also trying to help my dad with caring for her. Just taking it day by day.
That's most or all - always working on it.
On facebook or google I am Kit Minden - be in touch anywhere. The groups is Living for a Cure an it is private on facebook. Rules are keep it private and be polite. We support folks with any diseases or supporting those struggling with disease. We also have doctors, nurse and other interested folks though they are not intrusive at all. Just good folks!
I bought and added one at a time, taking it for a couple of weeks to be sure it was all right. Then I'd see what I thought would help next.
I bought mostly from amazon so I would have a full refund if it didn't work right.
I have it as a document but I don't see a way to attach it here.
It's okay. The way you listed each supplement and what's it's for is wonderful. I really appreciate it!!
More info that might help-
Multiple sclerosis (MS) is a demyelinating disease. It destroys the myelin cover to nerve axons. This is what creates the lesions - bare spots. People with MS rebuild myelin at a slower rate than normal people. It's important to provide fuel for that process. That's one of the reasons that a person with MS needs to eat some fats. They provide fuel for myelin.
Some of the foods have choline in them which supports myelin production. Choline promotes nerve regeneration, too.
Foods that help include:
Eggs
Nuts
Sesame seeds
Flaxseeds
Oats
Fish oil
Avocado
Olive oil
Purple grapes contain resveratrol, a phytonutient, which is known to aid ciruclation. Grapes can help prevent dementia by increasing oxygen and nutrient supplies. They raise good cholesterol and lower bad cholesterol.
Eggs have been shown to increase myelin in people with MS in a clinical trial. However, they can also be an allergen and something one is sensitive to. Try not eating eggs for 10 days or more and then adding them back to your diet. See how you do.
Other sources of choline include beef liver, chicken, turkey, scallops, shrimp, salmon, collard greens, Swiss chard and cauliflower. Also sesame seeds, flax seeds, legumes, and a number of fruit.
If you are new to our group, you will find that we talk a lot about alternatives. Some of us would rather not use the medications doctors can provide as the side effects can be a problem or there are ways to get our bodies to do the work at getting well without them. However, that doesn't mean you will not be supported choosing any prescriptions you deem right for you. One thing learned early is that every chronic illness is personal and every person is unique. That's why I like the idea of a snowflake logo for us as each snowflake is different from every other one, and all are beautiful!
Fighting MS and most chronic illness usually starts with diet and nutrition. It's important to eat a diet that is not inflammatory. Diseases like MS are inflammatory diseases, and so stopping inflammation can slow them down or even stop the progression.
The first thing to consider is stopping gluten - wheat, rye, barley and triticale. These grains are inflammatory. It doesn't matter whether you have celiac disease or not. The gluten will make it easier for disease to thrive in your body.
Next, consider stopping dairy. Dairy is also inflammatory. Try replacing milk with almond or coconut milk.
Third, several foods contain a high quantity of lectins. Lectins are inflammatory. The good news is that most lectins can be destroyed by cooking a food in a pressure cooker for at least 20 minutes. (There are electric pressure cookers now with timers so it gets easier.)
Peanuts are high in lectins and cannot be corrected so consider giving them up.
Potatoes, tomatoes, eggplant, beans and peas are all high in lectins. Cooking them in a pressure cooker (20 min minimum) will destroy the lectins and make them non-inflammatory.
Adding supplements that compensate for deficiencies or help fuel the fight against disease can be important. Try one at a time and give it 4-7 days to see how it impacts you before adding another. Getting supplements from somewhere like amazon can be good since there is a 30 day money back guarantee on most purchases, even if the bottle is empty.
Evening primrose oil lowers inflammation. People do well on 3-4 grams a day. You might consider taking 1 gram with each meal.
Cod liver or krill or veggie DHA are other oils to consider. 500 mg with each meal of one of these can boost the immune system and make the gut work better.
Your information is so helpful and there is a lot that I thought I was doing, like foods, that was good but what you've shared with me regarding different types of inflammatory foods and good things to eat that reduce inflammation is helping me understand so much more and will help me research things better and make better choices which I can in turn use to help my daughter. Knowledge is power so THANK YOU!!!!! I just want to do the right things as her mom and help her all that I can
I worry about my son being diagnosed with MS eventually. When things impact our kids, we really need resources so we can do something to help them!
I know and I pray that he's doesn't as well. My daughter is my life and helping her get through this and being there for her is my main goal. I agree, support and resources are so important as individuals and/or as parents when we face difficult times.
Interesting! Most of the do not eat or cut down items you mention are also high carb items and those are the ones I avoid. I have been doing this for a number of years now. Eggs are a basic food for low carb diets. I never heard ths at they are not recommended in MS. I don't eat a lot but there are 0 carbs in eggs and very filling.
as for Copaxone, I have been on it for 16 years almost. It is the only one of all the drugs that for most people (not all) has the least side effects and does not require monitoring blood tests. I do have skin atrophy now on my thigh and I find the injections have become more painful. This is I am guessing because I have less fat layer from these years of injections. It would probably be better to not use the injector, but this is something I cannot bring myself to do. I can inject others (I have a degree in nursing but when it comes to myself that is a different pshchological matter! I faithfully rotate using the calendar and I now have started to use a warm compress before and a cold one after. This helps but it is still painful to inject.
My daughter was diagnosed about 13 years so ago when she was just almost 20. She has been on avonex all this time. She is doing well but we don't discuss her MS at her request. I know she has said her MRI's show little activities or less lesions. She did and maybe still does have weekly flu-like symptoms when she takes the medication. I was diagnosed 3 years after her. I have been on copaxone about 10 + years now. I do not have any symptoms of flu and I don't have to monitor my blood cells or worry about liver damage, etc. I do have some lipoatrophy shich isn't too bad and I didn't really notice it until recently.. Noe everone has this problem on Copaxone. I hear that Avonex uses a shorter needle now so that will make it much easier to comply. Copaxone is the only one of all the MS drugs that doesn't need to be monitoried. I have not had an MRI since my diagnoses 11 years ago. My neuro probably will get one one of these days, but he feels that as long as I am doing well if wouldn't matter what the MRI showed, so why change anything? I kind of agree with that philosophy although I bet most neurologists would not.Also it is known that what shows up on MRI may not translate to whether or not one has relapses. It is a risk to or not to take medication.. (and of course expensive) but it is a decision everyone has to make.. I keep hearing that the sooner Medication is started after diagnosis the better it will be for slowing the progression of MS.
Cathy, I was trying to reply to your post about your daughter's migraines, but I lost it. I was on Copaxone for 10 years and had to recently stop because I had 2 exacerbations in 1 year. I did have some trouble during the first 3 months after I began Copaxone. Seems like it was hives a few times and one bad night where I just shivered and shook uncontrollably. Thank God the neuro kept encouraging me to power through. Except for the injection site problems, I had virtually no side effects for 10 years. Now I have to worry about all the potential problems with Gileyna.
I too had migraines from the age of 15. Finally, after convincing the dr. that they were occurring daily, I was put on a migraine prevention med, Nortriptyline. The 2 main side effects for me were tmade me dopey and unable to think until about 3:00 pm each day.hat I was constantly thirsty, and I always craved sweets. The sister med, Elavil, made me dopey.
Hi Kathy, I'm wondering how your daughter is doing? Did she actually start on Copaxone and how is she doing?
Hi itasara, she did start Copaxone and took it for about a month but she isn't taking it anymore. She's just still overwhelmed with the diagnosis, the injections and everything. I worry everyday about her not taking something but she's just not ready to start again yet. All I can do is pray and turn it over to the Lord and hope that she'll be okay until she's ready. Thanks for asking about her though. I really appreciate it as well as your other posts. I'm glad your daughter did so well on her DMT and was able to stop. I hope your yearly exam went well.
I'm sure it must be very difficult and overwhelming for her especially at her age. What if anything does her doctor advise? We as she injecting herself? If so would it help if you injected for a while? Did she have any side effects and did she use an injector? I am no professional but I always feel that education about MS is very important. That isn't easy either when it comes to MS especially since everyone is different and consensus varies. There was a recent set of studies that came out and I'll post the link but The one section on a study about medications was interesting and I'll quote it here or I'll lose the post if I leave the site:
"Treatment Early in the Clinical Course
Researchers from Sweden presented a series of 639 individuals who were diagnosed with MS from 2001 to 2007 and followed on average for 8.25 years. They found that for every year of delay in starting treatment, these individuals had a 6.7-percent greater risk in developing neurological disability. Put another way, people who started treatment three years after MS onset, had an almost two-and-a-half-times risk of developing disability compared to those who started treatment within one year from when their symptoms began. This study highlights the importance of recognizing MS symptoms as soon as possible and starting treatment shortly afterwards."
This outcome may not be the case for everyone but it is something your daughter may realistically need to consider. if this study is legitimate then the question becomes is it worth the risk not to take medication as soon as possible after diagnosis? I have heard this in other articles. One very interesting group I belong to is a group called Rocky mountain multiple sclerosis center. They put out a bulletin quarterly and I believe it's online if you can get it or else maybe join the group. I know they do research and a lot of interest informative things. If I lived out in whatever this is I think Montana maybe I don't remember I know I would be part of their institution. Anyway is very past article it's in the fall 2016 addition I know they put it on the Klein if I can find it I will send to you but I can also get the snail mail version do you like so I can keep it you were a book study about MS and why females get it more than males. But it was a lot of interesting information in there about genetics and environmental triggers and drugs and treatment recommendations for people with relapsing types of MS. This would be interesting for you to read and they talked about medications and differences between them and causes, possible causes of MS etc. Anyway I think you would find it interesting maybe eventually daughter would also understand more about what is known as far. But the bottom line of this article says research is certainly more needed and it just isn't everything that we know about and research is certainly more needed and it just isn't everything that we know about MS but certainly still learning and it seems what is known so far is that it's better to take that medication. As I may have said not convinced taking my daughter off her medication was the best route today especially at her young age. As for me I asked my neurologist about this and in my case he said I have done so well and over the last 11 years things aren't worth and he feels I don't need to see him for another 18 months but he does not feel I should come off medication because I don't have any major problems with it and because I continue to do very well. I asked him about MRIs since I have not had one in 11 years and he said as long as I am doing well and I am taking the medication he doesn't feel the need to do it MRI because I very well. I asked him about MRIs since I have not had one in 11 years and he said as long as I am doing well and I am taking the medication he doesn't feel the need to do it MRI because he would not change anything. And as I may have said to you a lot of neurologists wouldn't feel that way because they have certain standards they go by, but I told this to my husband who is a radiologist who said my doctor is practicing good "old-fashioned" medicine using his experience with other MS patients and my overall history in the past 11 years, and he certainly couldn't take any issue with my doctor's line of thinking. I asked my doctor about the possibility of disability in the future and he said he did not think that would be the case for me. Now I have read other articles that said add older ages disability could come, and as I said not everyone is going to agree with everything. I can only play it by ear call him as he requested should anything worried me in the next 18 months until I see him.
I know this has been a long post which I didn't want to do but I tend to be a little wordy at times I just wanted to get back to you with your concerns and I feel your concerns are important. If there are any typos I probably won't be able to fix them but sometimes my phone just changes things that I write. If you have any questions be sure to write me back. Keep a positive outlook and try to keep communication open. Communication is One aspect of it I don't have as much as I would like with my daughter so while she's with you it's still young it would be good to keep the lines of communication about her MS as open as possible giving her as much help as possible that everything would be fine and looking at the priorities first would be important.
I think it is just the overwhelming fear of the injections and, of course, the unknown about how MS will affect her in the future. Getting the diagnosis when she did this summer also was kinda a relief but at the same time hard to accept. She had always worked so hard and had all her plans in line for college but after the extremely hard senior year she had and then the final diagnosis, it left her feeling like she just wasn't ready to go off to college yet bc it took from June to August to get approved and receive her medication. And like I said, she started out pretty good but she didn't like the auto injector so she started injecting manually and was so proud of herself until she suddenly hit a brick wall with it. It does worry me that she's not taking anything and we don't see her neuro until the end of this month for blood work but I know he's not going to be happy that she isn't taking her medication. I know some people don't take medication but bc everyone is different--some might do ok but I think overall they don't and she's my daughter and I don't want her to get worse quicker. I would like to read the information you mentioned if you can find it and send it to me. I'll look for it as well. If you need my email address just let me know, I don't know if that will be easier as far as forwarding anything to me. I've been at my parents house a lot the past couple of days helping my dad with my mom bc she has dementia. All of this is starting to take its toll but I just pray a lot and try to stay positive!!! Thank you again.
Cathy, I came in on the tail end of everything, but you have so much going on. I'll be keeping you, your daughter and parents in prayer.
Hi Cathy, I thought I put the link in, but must not have. This is a summary of the committee I mentioned. Not a lot of details. I usually go off on my own and google different topics to see what I can find. mymsaa.org/news/ectrims-201...
The section I mentioned was the whole summary but there are other sections of note. I also didn't mention that I belong to another group, Rocky Mountain Multiple sclerosis center. They do a lot it seems with research and information. mscenter.org I also get a quarterly bulletin which last month was very interesting.. about women and girls and hormones and the connection to MS. I didn't see the latest one online, but if you sign up for their emails you may get it.. here is the link and ther previous bulletins are at the bottom: mscenter.org/education/publ...
It is free to sign up. They do ask for donations, which I haven't done..maybe once a few years ago I sent them something. If I lived in the city in Montana?(not sure right now, )I'd certainly have hooked up with their clinic.
I give your daughter a lot of credit that she was able to just inject without the injector. My daughter to was on Avonex with a much longer needle that goes into muscle, not just subq. and she eventually did it on her own. I am more the chicken, even though I have a nursing degree and could inject others, not myself. So I have always used the injector. When I first found out it would be everyday, I immediately had a sense of panic.. I've never been much a needle person either (don't get flu shots either!) but the injector made it easier for me and now it is three time/week instead of everyday.
Maybe it would help to tell her that my daughter was in college when she had that first major exacerbation (transverse myelitis) and then later her second one (optic neuritis.) At first she had a nursing school friend to the injections. She took a very realistic point of view- that is how she is- and got thru it. As I said it was just before her 20th BD. She is now 33.
Do you think it might help if you called the neurologist ( or asked your daughter if she'd mind you call him) and told him about what it going on? could be he has a nurse practitioner who might be able to discuss the benefits and non -benefits of not taking the medication. The way I look at it is it is a lifestyle to maintain-- part of what I have to do to stay as healthy as possible.
Just got this new app update. Seems to be working. Anything new? I hope your daughter is doing well. I think she should go on with her life and try not to worry too much. Stress is not good, although we can't always dismiss it. She may have no major problems but if she does try to take them on at the time. Best wishes for holiday season ..
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