Multiple Sclerosis (MS) Support Group
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Meds no longer work or MS progressing
Tom1965
Can your body be on a med to long and stop working? Has anyone been on a med for years and start feeling tired and run down. Almost like it's not working anymore and it's time to move on to new meds. My last MRI should no new leisons and looked like the old ones were shrinking. Still not sure about this whole thing. Hope for a new tomorrow, change is good.
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Have a journal (easy for me to say, hard to do) helps when I actually do it.
Good luck. Your doctor will tell you how you are progressing. My doctor always does. Most of the time I am about the same.
This was actually the subject we discussed at my support group tonight, one of the hot shot MS specialists in Chicago was there. I was going to put a thread up, and since there was some other stuff to share as well, I still am going to, but I hope that if you read it, it will help to answer your question.
nikki
I was walking so stiffl because it hurt to flex my muscles to walk
sdo I would walk with as little mucle flexing as possible. I hurt.
Before I could move in the morning I would take some tylenol that was on my bedside table and wait 20 minutes for it to work and the return of the sorness would dictate when I took more tylenol; through out the day.
The sopreness would wake me up while I slept, so I woulfd take some more tylenol to get back to sleep.
My nruro thought it was less betaseron not working in me, but more likely I had developed a side affect to betaseron after 3 problem free years with it-that being woken up in the night with pain was her largest tip that it was a medication induced symptom. It improved much when I started tysabri but whether it was starting tysabri or stopping betaseron, I will not know.
It could be a side affect that has dewveloped from betaseron after years of using it.
I remeber reading a post from myMSBS were he wrote he was dragging and his neuro gave him some steroids and thgat perked him up.If I can find were he wrote that I will put a link to it.....how lomg have you been dragging? And is there any other reason you can think of for causing it.
My PA at one time told me to call whenever I am ver tired, which I thought was amusing how do I distinguish always tired from very tired?
Perhaps you should give the doc a call and getr streroids at least and see what that does in this instance....many people take betaseron with monthly pulse steroids.
A lot of steroids aren't good for you, but you copuld try them for a while to see if it helps.
I was think for your issues you could post another thread about how people knew when they needed to switch meds.
For me it was my gait had changed much then that new active lesion sealed the deal. Remember it takes about 30 days for a new lesion to form, so was your last MRI more than 30 days before this fatigue started?...if so it could be a new lesion.
And then post about pulse steroids, how the decision was made to go to them....although switching to tysabri sounds better than putting all that extra steroids in your body. but maybe to see if it will help?
I know of one person who uses betaseron & pulse steroids and she loves the combination. I will send a message to her to ask her to look at your post & contribute if she has expereience you can use.
I wonder if we get immune to our treatment drugs and would just fare better from switching them out every few years.
Tom, what kind of diet do you maintain? What sort of exercise do you do, if any?
Nikki - I can hardle wait to read your post! It sounds like you have interesting news to share.
NNYL1 - I can relate to taking he tylenol in order to function better - that's the only way I got through my day when i was working. I wish I'd have known more about diet and exercise a few years back. Hindsight is always a kick in the butt, lol. Loved your comment on the tired versus very tired. I think I'd ask, lol. Just what in the world is he talking about. Is it the daily misery type tired that I should overlook, or if I start to feel like I have mono or can't lift up my head - is that what he means, lol. We sure need to make them elaborate. Easy for them to know what htey mean and would be great if we could read their mind, lol.
I'll be watching this post. It's very interesting to me.