MS for at least 36 years: My MS was... - My MSAA Community

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MS for at least 36 years

agate profile image

My MS was diagnosed in 1980 after several years of symptoms. I was on Avonex for 3 years (2001-2004) and then Copaxone (2006-2009) but currently am taking no MS drugs, though I do take 5,000 IU of vitamin D3 daily.

I taught in the Chicago City College system for several years and have a Ph.D. I also worked as a freelance translator for many years.

One of my pastimes is keeping up with MS news. I subscribe to many medical e-mail newsletters and tables of contents from medical journals. In 2006 I started a message board for people with MS. As the years passed it evolved into something more like a blog, where I post something daily, usually material that might interest people with MS. You're welcome to drop in at MS Speaks at any time:

I've been living in the Pacific Northwest since 1983. I live alone in a HUD-subsidized rental apartment.

28 Replies
Jesmcd2 profile image

If you don't mind me asking, why did you stop taking meds?

agate profile image
agate in reply to Jesmcd2

I don't mind at all. I stopped Avonex because one night a few hours after the shot I passed out and fell. As I live alone and could have been injured far worse than I was, I told the neuro that I didn't want to continue. There was no proof that the Avonex is what caused the blackout but I know of nothing else that could have caused it. Since I have had SPMS for many years, there isn't much evidence that Avonex would have been helping me.

I stopped the Copaxone because I was getting too many lipoatrophy patches on my body and might have run out of injection sites. I was having bowel problems that the Copaxone might have been causing as well. Again, since these drugs aren't known to be helpful in SPMS, I opted to stop taking them.

itasara profile image
itasara in reply to agate

I think it is all about risk vs no risk. I have been on copaxone for almost 10 years.. I too have some lipoatrophy sites especially since the first 9 years it was an everyday injection, but at least now it is every other day. The patchess are not all that bad but I am trying to avoid them for now. I ask myself all the time, since I have so far a rather mild case of MS, do I really need to take these drugs? I was 57 when I was dx'd and now I am 68+ years. However, I don't know for sure if I would be doing well without the drug as with it. As I have read and I do read a lot of MS info and belong to a lot of groups like this that many MS patients are still walking around without help and the question becomes is that because of medication? I would assume based on what I have heard and read that most if not all neurologists would agree that medication is the reason why so many MS patients are doing well compared to before the advent MS medications. Of course before the advent of MRI we don't know how many people had MS and were walking around just fine. I don't know the answer. For now, I guess I'll take the odds and continue the medication. I would love to go on the pill variety, but copaxone is the only drug that does not have the same side effects requiring blood test monitoring and other effects on the liver or flu like symptoms which I did not want to deal with. I am glad you are doing well. Let us know how things continue for you...

agate profile image
agate in reply to itasara

Ten years on Copaxone--that's a really good track record. When I was on it, and on Avonex before that, I was over 60 and knew that with SPMS those drugs weren't known to be helpful--but mainly because they hadn't been tested. Since the neuros were quite willing to prescribe them for me, I took them--I figured I had nothing to lose and maybe something to gain. I'd still be on Copaxone if I hadn't chickened out on it a while back, as more and more evidence was coming in that the drugs don't work with SPMS. Living alone, I didn't want to pass out with one of the IPIR's (immediate post-injection reactions) I'd been hearing about even if people do come back to consciousness after a while, and don't die of it.

They've tested people taking these drugs compared with people not taking them and found that the drugs are (probably) effective for about 1/3 of the people, but the way they figured this has been open to question. Some say that the drugs were tested on people who were healthier to start out with and therefore they might have done well anyway.

At my age I just go with whatever is most comfortable for me. I didn't mind doing the daily shot and could have put up with more lipoatrophy. I just might go back on Copaxone some day but I hate to add anything to my body at this point because I overreact to quite a few medicines. Older people (over 70, say) have different reactions to any medicine, and need to be very careful. Maybe I'm being too cautious. I don't know. But it's encouraging to know about your experience.

Thanks for your reply.. Yes I think it is possible that those who were healthier to begin with may do well with or without medication. But I don't think most neurologists will say that. What I read is the sooner you start on medication the better. My daughter was told by her neurologist way out West in California that her MRIs are so good, hardly evidence she even has MS that he took her off all medications and she has to follow up with MRI's every 6-12 months. I was very surprised to here that, Since I haven't had an MRI in almost 11 years, I'm curious to see when I do get one if anything would suggest that I too may not need medication. I've read that over age 70+ some people may not need to stay on the medication if they are doing well. My daughter is in much better physical health than I am because she is still mid thirty and does a lot of exercise which I know I should but don't.

in reply to itasara

Itasara, it's MSFIGHTER weighing in on the conversation in progress. I was diagnosed when I was 53. At the time we were doing diagnostic tests to figure out exactly what had turned my world upside down. My new Neurologist opened up the MRI he done of head, thorax, and spine and pointed out over a dozen lesions he accredited to MS. At this points I had limited use of my right hand and arm, couldn't run at all, walked like a drunken sailor, and have the balance of a 12 month old toddler. My neurologist estimated at this point due to the sheer volume of lesions both old and new that I have had MS for at least 10 to 12 years.

When I was in my forties I manage a thoroughbred breeding operation. There was myself and one full-time employee that ran the 28-acre facility. Without the shadow of a doubt I was in the best shape of my life. Between handling horses, mowing and weed-eating, cleaning stalls, and doing all the mundane tasks of keeping a farm up I typically put in 12 to14-hour days, 6 to 7 days a week.

Looking at my MRI that day with all the damage MS had already sneaked in and done to my body, I became furious with myself. You see, I had blown off symptoms and blamed them as part of the natural aging process. If I had been diagnosed sooner, I do not believe I would be dealing with as much disability as I am today.

Itasara, what I hope you consider from my reply is that I firmly believed that because I was in such good shape and so physically strong I was able to plow through my symptoms. This did me a lot of physical harm. If I had started on a therapy sooner, I would not have let MS run amok over my central nervous system. When making a decision of this importance please review all the aternatives and speak to your doctor at length before you allow damage to be done that cannot be undone to your body.

I also wanted to address Agate for a moment. Remember MS therapies have come a long way since you took your Therapies in the 2003 - 2009 range. There is a brand new therapy coming out on the market that is designed for secondary progressive MS. It should be on the market sometime early next year. I know I have secondary progressive MS and I'm so excited about it and I pray everyday that it gets on the market as soon as possible.

As always information is our friend and make sure you stay current on all the therapies that are offered because they change what seems like almost monthly right now. Don't give up on the new ones without talking to your doctors because an old therapy let you down. There are a lot to choose from today. MS is like an iceberg. The tip of it you see above the water is what you realize is happening to your body. The huge hunk of it under water is what is happening internally to your body. The damage can be monsterous before you realize it's even been done. Please be careful.

You are right--most neurologists are now recommending having a patient with MS on one of the disease-modifying treatments as soon as possible after diagnosis.

They just don't know that much about MS in people over about 60-65. They haven't tested most of the drugs in that age group. You do reach a point where you just want to be as comfortable as possible for the rest of your life, and if the shots are too inconvenient or uncomfortable, there might be good reasons just to stop taking them.

The risk of an immediate post-injection reaction is one thing that keeps me from going back on Copaxone. I never had that reaction but understand it can happen at any time--and can be fairly severe. Living alone, I hesitate to do anything that might cause me to pass out. But I might decide to take that risk again, anyway, just to do what I can to keep the MS from worsening.

SepFromWisco profile image
SepFromWisco in reply to agate

Im mid 20s with moderate disease activity and I chose to get on DMTs right away. Started with Copaxone then Plegridy (basically long lasting Avonex), because of the good safety profile, but ended up doing terrible. Looked up a lot of the same info you looked up about injectables and saw that they are not effective for ppl with anything more than mild disease and they dont even know the mechanism of action, so then I had a choice to move to the stronger oral medications.

Im fully against putting foreign substances in our body so this was a very tough decision for me. Finally, I came to the conclusion that the side effects and monitoring are worth me continuing to be able to live my normal life. I started Gilenya, and have been doing great ever since. I have 30+ lesions in my brain with many enhancing and one large one in my c-spine but I have no visible disability to the human eye. I have no doubt in my mind that my decision to get on a strong med has saved me from functional decline. Gotta outweigh the benefits vs the risks and use the scientific research & evidence to make an educated decision.

Anyhow, I hope you continue to live a stable life without meds but take a look at Siponimod which is an oral med which showed efficacy in SPMS and has a similar side effect profile to other S1P oral meds such as Gilenya, which we now have 10 years of research on, dating back to clinical trials.

agate profile image
agate in reply to SepFromWisco

I share your hesitation about putting foreign substances into the body but, like you, I did go ahead with Avonex and later Copaxone in the hope that they might somehow help. I'm keeping an eye on siponimod as a definite possibility.

itasara profile image
itasara in reply to agate

I had a nice conversation yesterday with my internist at my regular physical. I have a much better relationship with him I think that my neurologist. But I mentioned about my daughter coming off of meds because your neurologist that she didn't need it. His opinion was if I'm getting along OK it's not worth the risk of coming off Copaxone, but still it is something I need to talk over with my neurologist. I also read an older article by Stuart Schlossman who is a big advocate for MS and has his own site at Stu's MS news and views and keeps up with a lot of the information going on with MS and MS research. He also speaks at different conventions that he hosts about MS mostly in the south. He is I find very Knowledgeable. if you haven't found him yet he's on the web and He's also on Facebook. He wrote this personal blog about how he stopped taking his meds for whatever reason( I think it had to do was side effect I can't remember for sure ) and he felt better and things we're going great and his cognitive situation was better until a certain amount of time later he started having significant relapses. And he decided to eventually go back on his meds and would not go off them again. We just don't know what's going to happen And it could be risky either way. It is not a cure, for sure but I like to head to my bets against things getting worse. I guess somethings are worth making decision to stay on it instead of coming off it. As far as the one major side effect reaction which sounds major with Copaxone, I've never had it personally, but all the info says it is not harmful and probably scarier than harmful. If it lasts more than I think 15 minutes or so then you do have to call someone and stop the medication until you have further notice from the neurologist. What scares me more are all the other medications which all have possible more serious side effects that need to be monitored or they may cause you to feel ill. It is not true for everybody I know, and it works for many people.I don't like to see doctors and get tested anymore than I have to so that's One major reason why I have stuck with Copaxone, because I'd be really happy to take the pills. The worst effect for me is some of the pitting on my thighs, but it's more noticeable by me And I am covered up most of the time anyway. I suppose it's still working as I've never had any major relapses that I know of. Maybe little ones but as I said most of it has to do with aging I think but it's hard to prove either way.

agate profile image
agate in reply to itasara

I've been a subscriber to MS News and Views for a long time and am glad you found useful information there. --As for the lipoatrophy or pitting at the injection sites, I was getting that too. I didn't really mind it as I'm not likely to care what I look like in a swimsuit any more, but I did raise the question with the people at Shared Solutions: Won't I run out of injection sites if these dents keep showing up? Couldn't I just inject there anyway?

The answer was to advise me NOT to inject in the dented areas. I was told that that is "damaged tissue." I didn't like the sound of that, but it's not really a reason why I stopped taking Copaxone. Yes, I might indeed go back to it.

itasara profile image
itasara in reply to agate

I ask myself the same question.I have been trying to avoid the dented areas, but it is is difficult! I read in some article that it was better to inject deeper than not. I have been using the least depth because I am thin, but have increased the depth a bit and I think it is less painful in most spots now.

agate profile image
agate in reply to itasara

I've noticed some people say that the injection is harder in the dented areas because the skin seems tougher.

By the way, I love your site. Just registered for the forum! Any place where we can share and disseminate information with each other is all the more valuable for making educated decisions about our care!

agate profile image
agate in reply to SepFromWisco

Thank you for joining! It's not a very active forum just now but anyone is welcome to post--or just to join and drop by and read.

I tried to register several times. It keeps saying the words don't match the picture. Well there was no picture. I checked off "I'm not a robot." I'm on my phone maybe I need to b on computer?

@itasara, I'm not sure what's happening. Someone else just registered as usual. I should have had an e-mail letting me know you were trying to register. I didn't get an e-mail yet. The problem might be that you're on your phone. I'll be looking into this a bit later. Sorry I can't be of more help.

I was prescribed 50,000IUs of Vitamin D by my neurologist and the results were incredible! I haven't looked back at Copaxone in 9 years and haven't felt better.

agate profile image
agate in reply to Fuzzman

Fuzzman, that 50.000 IUs of vitamin D wasn't a daily dose, I hope? I've heard of people taking that much but not daily.

Fuzzman profile image
Fuzzman in reply to agate

50,000IUs was one pill per week for 7 weeks..I felt soooooo good!

Ashirva profile image
Ashirva in reply to Fuzzman

Didn't know you could get vitamin D in 50,000 IU! Does it have to be prescribed? Why take 50,000 once a week - wouldn't 7,000 per day be better?

itasara profile image
itasara in reply to Ashirva

In the past couple days I've done a lot more reading and see some videos put out I'm vitamin D and what I did there and I think that it is that vitamin D3 that you get over the counter has a long half life somewhere I think up to three or four weeks. Vitamin D2 is prescribed at 50,000 international units at one shot has a very short half-life and within seven days it's totally gone. So that is why it's recommended for those who need it at one week intervals. So my blood test results came back toohigh for my internists. Liking.Calcium was normal but on the higher side and my vitamin D levels were very high according to the chart they go with. So he told me to go off it for two weeks which I did. Retested then. Calcium came back normal again this time on the lower side. My vitamin D levels are lower but not low enough. The long half-life may have accounted for that but I don't know if everybody in the medical profession understands that. Anyway we agreed that I should cut it down so I'm taking just half my calcium that I was taking which means I'm taking a total of 800 IU of vitamin D3/day. It's possible I was taking too much. Now for the past three days I haven't been feeling well at all but it could be unrelated to this sudden change in my routine. . I was feeling great before! For years, although it's only in the past several months that I've started taking a higher amount of D3 because I added a new supplement that contained 1000 IU per day Plus the D3 capsule that contained 5000 IU. I have been taking that for quite some time maybe a year? But it is possible that I don't need it at all but considering thr greatest source of vitamin D is a few hours of sun every day ( and not diet)or at least a few times a week it's hard to believe since I really ever do get out in the sun. And there isn't much sun where I live specially this time of year and throughout the winter and when it's freezing cold I'm certainly not gonna spend time outside and if I do I'm going to be well covered believe me.

itasara profile image
itasara in reply to Fuzzman

So I'm just curious, Fuzzman, do you know if you had low or deficiency vitamin D levels to begin with? I started taking vitamin D many years ago when I saw there was a connection between vitamin D and MS. It was a very early years when I was diagnosed. – 11 years ago. I don't go out all that much especially in the winter which here are long and often dark, and I thought I should take it. Then I added some other supplements with vitamin D including calcium which already had D3 in it and didn't realize I was taking vitamin D supplement totaling 7600 IU. I just was tested recently and my doctor called and said I was at dangerous levels of vitamin D at 104 ng/ml. So for two weeks I have been off any thing with vitamin D in it. Repeated test for calcium and D. Calcium came back lower normal (it was higher than normal before) and I have not heard back yet about the vitamin D level. Still waiting after a week.I've heard and read many different opinions on how much is too much vitamin D. And whether one needs to have a deficiency before one treated with any vitamin D! Very confusing. I don't know if anyone is sure about MS patients on vitamin D versus non-MS patients on vitamin D as to how safe it is.

Fuzzman profile image
Fuzzman in reply to itasara

That is weird as my DR prescribed 50,000ius per pill. One pill per week for 7 weeks and WOW did I feel like a million bucks.

But yes please use caution. My vit D was at 120...I stopped for 2 weeks and went back on Vit D without issues.

itasara profile image
itasara in reply to Fuzzman

I've been doing some more reading and watching videos about vitamin D and it turns out that D3 has a half-life of about four weeks maybe but vitamin D2 which is the one prescribed by physician ( which is probably what you have in the 50,000 IU prescription ) has a very short half-life and within six or seven days and it's totally gone. That is why it's often prescribed for one week if taking 50,000 IU. But the more I read and hear the more indefinite it all becomes. So right now I cut calcium down to One half which brings down the vitamin D to 800 iu a day. And I stopped the other supplements I was taking for now. My vitamin D had dropped not far enough to 96 and Mg/ML which is still too high for my doctor. But we agreed The lesser amount. Then I'm to retest in six months. Meanwhile I'm not feeling well today or yesterday, but it could be something else. I restarted the calcium and vitamin D3 only yesterday. I have abdominal cramps, headache etc.but it's a little bit better tonight. I haven't been this sick in a long time. I wonder if it connected to the sudden drop in my intake of calcium and vitamin D? It's possible, But I don't know. From what I read I don't need either of those and maybe overkill. But I don't know and I don't think anyone knows. I know I was feeling really well taking the 7600 I use a day but maybe it really was too much. It may not be necessary to take vitamin D3 every day. I heard more about this in the video today

Hi 'agate'!

I registered on MS Speaks but every time I try to log in, it says my username doesn't exist!

Anne :-(

agate profile image
agate in reply to Ashirva

I have no record of your registration. If you tried to register, I should have received a notification so I could approve the registration. I've had a few registrations recently but nobody with your user name. You could try registering again. Thank you for trying! You're welcome to read there in any case.

I think I finally was able to register for your blog at MSspeaks. I belong so many organizations to do with MS now it's getting very hard to keep track of them! But I do find them including this one very interesting and informative.

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