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New to MS - how long is the treatment
Hi all,
Little Background:
About 2 months ago started to feel it's hard to use my left hand and left leg. I can walk, but it is hard, I can do things with my left hand, but I lost flexibility in my fingers. I visited neurologist, she send me to do MRI and she told me results are showing I have MS. I still in the process of other diagnostics to have confirmation of MS, but I've seen 2 diff. doctors and both are sure I have MS.
My Questions:
While during my research I can see it can't be cured, I saw a lot of articles saying that quality of life is not always changing, and this disease is at least controllable. I already can see that treatment depends on the particular case, however I was wondering those of you who are taking drugs -
1) For how long you have been taking them (months, years...) ?
2) Do you have to be in hospital for few days after you take drugs (can you go to work next day for example) ?
3) How often do you take them? (every week, every couple of months or it depends...)
My doctor told me it is possible to get me back to the state where I can normally use my hand and leg, but I would like to be prepared to "how often I will have to go thru the process of taking drugs" and if I will have to be in hospital for few days?
I would really appreciate your input, I'm 27 and would like to prepare myself mentally to what I can possibly go through.
Little Background:
About 2 months ago started to feel it's hard to use my left hand and left leg. I can walk, but it is hard, I can do things with my left hand, but I lost flexibility in my fingers. I visited neurologist, she send me to do MRI and she told me results are showing I have MS. I still in the process of other diagnostics to have confirmation of MS, but I've seen 2 diff. doctors and both are sure I have MS.
My Questions:
While during my research I can see it can't be cured, I saw a lot of articles saying that quality of life is not always changing, and this disease is at least controllable. I already can see that treatment depends on the particular case, however I was wondering those of you who are taking drugs -
1) For how long you have been taking them (months, years...) ?
2) Do you have to be in hospital for few days after you take drugs (can you go to work next day for example) ?
3) How often do you take them? (every week, every couple of months or it depends...)
My doctor told me it is possible to get me back to the state where I can normally use my hand and leg, but I would like to be prepared to "how often I will have to go thru the process of taking drugs" and if I will have to be in hospital for few days?
I would really appreciate your input, I'm 27 and would like to prepare myself mentally to what I can possibly go through.
I've been on Copaxone since 2010. When I started it was a daily injectable, subcutaneously. I am now taking essentially a double dose 3 times a week subcutaneously. So far no relapses.
I expect to be taking this drug for the rest of my life unless at some point it proves not to be working for me or something else better comes along.
I have never been hospitalized for my MS. When I had my last relapse in 2010 they did give me Solu-Metrol steroids but it was orally so no "infusion".
Sounds like you are on the right track. Good luck!
Julie
I expect to be taking this drug for the rest of my life unless at some point it proves not to be working for me or something else better comes along.
I have never been hospitalized for my MS. When I had my last relapse in 2010 they did give me Solu-Metrol steroids but it was orally so no "infusion".
Sounds like you are on the right track. Good luck!
Julie
Hi Kyle, thanks for your input. I've been told I'll be starting with steroids and then we will choose a DMD. Thanks for support!
Hi TLC, thank you for your answer, I'm really glad to see others with the same symptoms can even run 15K! Gives me hope it's really possible to continue living healthy life even with MS. Thanks for support!
Hi ess, thank you for your answer, makes me feel I'm really not alone in this, and glad to see it is possible to live normal life with MS. Thanks for support!
Hi MM-
As TLC and ess have mentioned, MS Disease Modifying Drugs (DMD's) come on many shapes and sizes. There are some that are injected, others are in pill form. Some are daily and others that are used every week or every other week. The two major infused meds are Tysabri and RItuxan. Tysabri is infused monthly and Rtuxan every 6-12 months. All of these drugs are designed to slow down the progression of MS. You and your doc will find the one that works best for you.
In addition to the DMD's, high dose steroids are often used to treat inflammation associated wih current relapses. When the inflammation is reduced symptoms are often relieved.
Kyle
As TLC and ess have mentioned, MS Disease Modifying Drugs (DMD's) come on many shapes and sizes. There are some that are injected, others are in pill form. Some are daily and others that are used every week or every other week. The two major infused meds are Tysabri and RItuxan. Tysabri is infused monthly and Rtuxan every 6-12 months. All of these drugs are designed to slow down the progression of MS. You and your doc will find the one that works best for you.
In addition to the DMD's, high dose steroids are often used to treat inflammation associated wih current relapses. When the inflammation is reduced symptoms are often relieved.
Kyle
I take Avonex, one of several disease-modifying drugs (DMDs), which I started after diagnosis in 2004 (I had symptoms like yours, although perhaps not as intense, as much as 10 years before diagnosis). I expect to take a DMD for many years to come. I hate it, but I’m still in relatively good health … I ran a 15K Sunday in 1:14:52.
I suggest that once you are diagnosed, you also start a DMD, which is designed to slow progression and reduce the incidence and intensity of relapses. Taking a DMD will not make you feel better; in fact, all of the DMDs have side effects, and some may make you feel worse in general. Side effects often lessen over time, however, and/or you will learn to tolerate and/or mitigate them.
Other drugs treat symptoms. Even with the IV steroids, which I’ve needed a couple times from an infusion center, I was in and out in 90 minutes. I’ve certainly felt crummy at work sometimes (I have a sedentary office job), but the most work I’ve missed was probably the day of my spinal tap.
Ask questions anytime!
I suggest that once you are diagnosed, you also start a DMD, which is designed to slow progression and reduce the incidence and intensity of relapses. Taking a DMD will not make you feel better; in fact, all of the DMDs have side effects, and some may make you feel worse in general. Side effects often lessen over time, however, and/or you will learn to tolerate and/or mitigate them.
Other drugs treat symptoms. Even with the IV steroids, which I’ve needed a couple times from an infusion center, I was in and out in 90 minutes. I’ve certainly felt crummy at work sometimes (I have a sedentary office job), but the most work I’ve missed was probably the day of my spinal tap.
Ask questions anytime!
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Please look at the web site of the National MS Society--
http://www.nationalmssociety.org/
You'll find, together with lots of other good and accurate information, a description of all the approved MS treatment medications.
The original ones all must be injected, because swallowing them in pill form destroys the active ingredients. These are all still available, though some have been reworked so that they are injected less often. During the last few years, though, new medications in pill form have become available. Usually these are taken twice a day, morning and evening. There are also infused drugs, ones that are given through an intravenous line, though in general these are used if and when the basic drugs become ineffective.
There is no one answer regarding how often the meds must be used, because each drug is different. The infused drugs are generally given once a month in a hospital setting, since that's where infusion centers are located, for the most part. But an overnight stay is not required, most infusions being done in an hour or so, at which point the patient simply continues with his or her day--no down time. Injected and pill drugs are managed totally at home by the patient.
MS is a life-long disease, so treatment will last for the rest of one's life. Most of us will be using different kinds of drugs over the years, as new ones are developed. There is no one type that is best, as everyone is different. Some people will get very unpleasant side effects from a given drug while someone else will get none. Also, some will do better than others on that or another drug. Fortunately it is always possible to try different things to find the best fit. A doctor is likely to keep the patient on the drug several months to a year or so before deciding it is not being effective and therefore making a change.
An ever-growing percentage of MSers continue with an almost normal life after diagnosis. I'm one, and I'm sure others here will say the same thing.
Good luck to you.
ess