I started Rebif December 2015. The whole year of 2016 I noticed a decline in my abilities. Of course we all face that dreaded fatigue monster. Gradually through 2016 I have been getting more and more tired - to the point of not being able to stay awake. I had my first relapse in like 8 years by experiencing the MS hug.
I came to the conclusion that after the MRI showed no new lesions that the MS therapy I have been taking must be the cause. I stopped taking the Rebif. My last injection was 12/12/2016 and in just this little bit of time I have noticed a difference in my abilities. I am not getting sleepy, I can walk from one room to the other without feeling like I have ran a marathon, and I am not experiencing the spasms as much in my legs. I know this may all be a coincidence but I am going to continue to go without the Rebif and see what happens.
Please respond with your thoughts on my choice. Thanks
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amyshif1
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Hi Amy, all I can say, is do what's best for you. If you think it was the medication that was making you feel so bad then don't have any more. We have to remember that even though we all have ms, we all react differently, what is good for one, may be horrible for someone else. So listen to what your body is telling you, blessings Jimeka
You could try to get on another therapy. Don't let silent damage happen. I couldn't tolerate B-Seron which made me feel much worse, but wish there were more effective treatments available at the time. There are some good ones available now with better on the way.
Good evening Amyshift1 this is Fancy1959 welcome you to this amazing chat room. You have found a safe place to come and ask questions, voice concerns, and find out information about MS in general. The people in this chat room are kind, considerate, and very compassionate. On top of all that there are extremely positive and are a great group to get to know. We call ourselves an extended family because we're there to support each other just like a family.
I have to agree with Tnolan2006. Getting off your therapies can have some severe ramifications. Once lesions pop become active they never completely go away. But they do leave you with issues depending on where they're at and what they are affecting. I was diagnosed about 4 years ago but when Ms filing not me down flat on my back and we started doing the MRIs we discovered considerable damage. I was in very good shape and very athletic and strong and I blew right through them it's. That was until it knocked me down. As a result my disability level just four years into my initial diagnosis is pretty severe. The neurologist actually thinks I've had my Ms for close to 20 years. Because it was unmedicated with no interferons 2 payments while swing down I have tons of issues. The MS has attacked my cerebellum. It has shrunk about 25% and has caused a lot of severe problems with my balance and other issues. I have little to no dexterity left in either hand. They're numb from the elbow down and they feel like the fingers are swollen at all times. Everything I touch feels like sandpaper. I have no tactile sensation left in my hands. My legs are weak. I have very limited endurance. And cognitive issues as well but I work on strengthening them. I also have incontinence problems that comes and goes in both my bladder in my bowel. I have fallen so often and I have fallen so hard that I have ripped my right shoulder apart since on right side and I try to catch myself there. There is nothing left save on it. I need a shoulder replacement but I'm too young so I now have to fight the severe pain basically a crippled or right shoulder, due to my MS and my lack of balance. I also have problems with my esophagus having spasms and trying to choke me. Do you want the list to go on?
I am not trying to scare you I'm just pointing out the facts of what I have to live with a mere four years after I was initially diagnosed. And this is like an iceberg what we feel and what we experience is only the tip of the iceberg. The rest of the damage is hidden within our bodies and can cause damage that is permanent but that is even knowing it until it becomes so severe it knocked us down. Perhaps you can talk to your neurologist if you're not happy with Rebif you could see about getting on a different therapy. There are absolutely tons of therapies out there right now with more being approved every year. But please don't give up on the therapies. Don't give MS a chance to run amok in your body simply because you did not notice the changes on the surface. I want you to remember one thing and that is that together we are stronger. Whatever your decision please take care of yourself. And I look forward to speaking to you again soon. Thanks, Fancy.
Fancy1959, Hello. Hope you are doing well and your Christmas was all you wished. I wanted to tell you thank you for being here and being you and for listening to me. Gentle hugs, Fancy. Mary
As one that is just getting diagnosed with the MS monster, I find your post very interesting. I haven't started any treatments yet and am trying to keep track of everyone's comments about how they are responding to the various meds. I suffer from fatigue daily, first 4-5 hrs of the day are pretty good, then the zombie in me comes out.. can't think straight, exhausted etc. thanks for your post!
The fatigue....I start my mess in two weeks. Newly diagnosed. But my lifestyle was always fatigue and in the last 4-6 months it’s so much worse. Once I wake up I’m up (stinks) and then by 3pm crashing fast and by 9pm I’m useless to my kids and husband. The fatigue is the worst part for me lately as I have a lot to do and try’s my to pass things where I can to others but when it’s hard to find help it’s hard to pass obligations. Good luck to you
I stopped copaxone after 1+ yrs. just didn't feel like my best. Fortunately, my MRIs have remained stable and no real relapses but I wonder if staying on DMT s would have slowed my progressive decline?
Neuro was ok with me stopping dt my age. As above, tho discuss with your doc.
Amyshif1, Dogmama here. I am a caregiver. My husband, diagnosed MS 2004. He started on COPAXON, then Neuro put him on Tyspri(not certain if spelling), after 18 months changed him to Rebif. He stayed on Rebif for about 6 years. January, 2015, he made decision to stop all MS therapies. We read article in MSAA that reported that after MS patient reaches a very age (60 and oder) MS therapy would no longer help. We discussed this decision with his Neuro. To inject here, I am not recommending this course of action for anyone. At time AJ was going through life changing back surgery. This was his decision to quit Rebif. He felt that it was making him feel sick more and more. Now, 2 years off MS therepy. He did, summer of 2015, try to go back on Rebif. Again, he started feeling sick, like flu all the time. Unfortunately, his long time Neuro left practice and that particular Neuro parctice was overwhelmed! My husband fell through the cracks. So no follow up. We have now assembled another Neuro team. I am talking to AJ about discussing with doctor about starting in another newer therapy. He is hesitant. But, That is my recommendation to you, check out other therapies, discuss with your doctor. Best of luck and blessing.
Best to you and the hubby. It’s less than 2 years since I went numb and was DX W with MS. I just turned 70 & was very active healthy before DX. I’m tired of symptomatic meds& asked doc about DMTs. I have to undergo Neuro psychological testing and depending on those results he will try and get me on a drug called Rituxan. He said he’d really have to pull strings, but feels it may slow or stop further progress. It’s all so confusing. Keep us posted, we are here for both of you. As his caregiver, MSAA also has areas of help for you.
Just remember that MS is a progressive disease... How lucky we all are that so many treatments are now available! When I was dx'ed in 1994, I had to go into a lottery system to get on Betaseron... With it, I tolerated open sores at shot spots for over 8 years, but it kept my MonSter stable. Then, I took 5 years off before starting Copaxone which I've been on for 9+ years--it works well for me with just a little progression with new lesions on my spine. Mind you, Cleveland Clinic dated my MS back to 1986 with my first optic neuritis...
You need to do what is right for you though subQ shots are easier than intermuscular... How lucky you are that there are pills available as well for MS therapy. Most definitely, talk to you doctor!!! If you don't have a trusted neuro, get one! If you do, she will know your case and be able to provide the best advice for YOU! When I quit BS after it ate my right thigh requiring surgery, I took 5 years off treatment (no pills were available for MS at the time). When I started having progression, my neuro recommended Copaxone. Because I really trusted him AND he respected me as a PERSON, I started Copaxone which I've been taking 9+ years with no problems or intolerable side effects. KNOWLEDGE is power! Be sure to educate yourself on the myriad choices we have available to us now... How LUCKY we MSers are that so many choices are reality now!!!
Good morning Amy and welcome to what I consider to be a safe place for you to ask questions vent and laugh with the monster we all deal with.
I do always say that this journey is different for everyone, however, I would be remissed if I didn't point out that ms progressively beats most of us down. While the decision is always yours to make, there are several different drugs out there that hopefully can keep you stable and not give you symptoms that make you feel as if you can't function. I would hate to see you come off meds and even if it's a yr or two later have a massive relapse that sets you back and causes damage that may not be repairable.
I have had ms for 16 going on 17 yrs and I understand wanting/needing the ability to not be held hostage to a medication that is supposed to help I have been on rebif, copaxone, Avonex, and ivig.
I wish you nothing but the best and I hope you and your neuro team can find what works for you.
Thank you all for your input. I was diagnosed in 2006. I started a MS treatment (Rebif) not long after being diagnosed. Then about a year later was put on Avonex. I had to stop working due to my disability in 2008 and at that time lost my insurance so I could not afford my meds. I stopped all therapy in early 2009. The MRIs from 2009 and the most recent MRIs 12/12/2016 were compared and they show no new lesions. Everything looks the same. I am not saying my choice to stop therapy is a good one but right now I feel it is the right choice for me. My neurologist and I have discussed the different treatments available, so I am knowledgeable in what is out there for RRMS and know the risk I am possibly taking by choosing not to be on treatment. I also think that from 2009 to 2015 (before starting Rebif 2015) I had had no relapses and my exacerbations were not enough to the point that I could not handle every day life. From 12/08/2015, my first Rebif injection, my health totally changed for the worse. I could not walk very far without feeling I had run a marathon. I honestly would get so tired I could not stand up straight and this would be just walking from one room to the other. I was having a hard time sweeping my floors, doing laundry, I was having trouble with doing so many things. By the time July 2016 came I might as well have stayed in bed all day because I could not be productive even with any small tasks. I love making dreamcatchers and photography and EVEN these became difficult. It may all be wishful thinking but my last injection was 12/12/2016 and today, 12/30/2016, I have done more this morning than I could have done earlier this month. Thank you all again for your input and I wish you all the best and pray that your days get better so you can enjoy life as much as possible.
I will keep posting my experiences with my choice and let you all know how things are going with me and MS.
I was diagnosed 1 and 1/2 yrs. ago and was put on rebif. At 10 wks. my blood work was off by quite a bit so I stopped the rebif and it was determined I had PPMS so no meds. were available. I am awaiting approval of the first med that will be for PPMS, and will give it a try if it becomes available (assuming insurance will help!)! I guess what I am saying is it is certainly your choice but I would recommend give another med a try because you are so lucky to have the option to do that!
amyshif1 I don't know your age, or symptoms. I can only tell you my experience. My primary care sent me to Neruologist for my Burning Tongue Syndrome back in 2010, Clinical tests showed i had no balance in walking (I had suffered several falls, that had been blamed on my fibromyalgia of 20 years). He did contrast MRI, said I had a few lesions, but at my age (64), it was too late for treatment, and symptoms would just go with old age up into my 80's. During the next 6 years, I had many unexplained symptoms, one being serious Syncope (unknown passing out) for 2 years. One cardiologist looked at that 2010 MRI, referred me to an MS specialist, and said I had MS, and needed meds. I went 6/6/16, had new contrast MRI, and at that time my lesions had increased 800%. If I had been put on medication to slow the progression of lesions, perhaps I would not have all the brain scarring I have now. Perhaps I would not have all the cognitive damage I have; perhaps I would not have all the balance problems I have now; perhaps I would not have all the PBA problems I have now; perhaps I would not have all the burn scars on my arm from numbness in right arm, etc., etc., etc., with all my other symptoms that have grown progressively worse in the past 6 years as the lesions silently spread in my brain and neck! I would like to sue that doctor who told me in 2010 that at my age I would not suffer serious symptoms til my 80s. I am 70 right now. At my age, my mother was working a full time job, with full time hobbies, traveling by herself, riding horses, etc, till her 80s when she got breast cancer. That may have been me if I had been on a preventive medicine. MS is a silent killer of the brain, the neck, the spine, but not our vital organs, so we do not know until the damage is done and the myelin in gone what havoc has been wrecked in our bodies. I am a stand-on-the-soap-box and shout it out supporter of any medicine that will slow the progression of those monsters lesions that destoyed who I was!!
Hi, I have to agree with being on one of the MS medicines. My son, who is only 28, got diagnosed when he was 25. He has been on Copaxone 40 mg for 2 years. His MRI's are stable and he does not any relapses anymore. This is amazing to me. He really doesn't have many side effect from Copaxone, He does have terrible migraines, but they have decreased, too. It is true, the journey is different for everyone, too. All the best to you
It is true that only you can make such a choice.I have had some other meds that when I stopped them I could tell the changes.Make sure you talk with your doc and keep on top of testing for new lesions etc.Keep check on levels of d etc as your doc recommends.You know in your heart what is right for you.I say my prayers for all and so know that we are all here for you.I know the fatigue can really be so difficult, frustrating etc.Some meds balance after awhile and some just don't.Best wishes...!
Talk to your doctor! I was told that the medicine will not cure MS but wil slow down the progression. And you might have been on the wrong meds. Just keep your neuro informed. Take care of you, Lisa
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