Lynn has started a new MS medication–at least new for him. It’s Rebif, an interferon beta-1a therapy that is supposed to slow disease progression, reduce the development of lesions, and reduce exacerbation occurrences. Sounds like a good drug but it’s also used primarily for relapsing-remitting forms of MS and Lynn maybe into secondary progression now, so we’ll see… What I do like about it is that he only gets it three times a week instead of every day. That’s a nice difference from Copaxone.
Now, for the other side of the coin and why I want to give HIM away to a good home! Due to the side-effects of the medication, the dosage is titrated upward (i.e., gradually increased over time so that the body has time to adjust to it before increasing the dosage). He just finished the 8.8 mcg dose and will begin the 22 mcg dose tonight. So far side-effects for the flu-like symptoms have been minimal. However, Lynn is VERY sensitive to any change in medication routine and he’s been feeling miserable all week.
Primarily he has been feeling tired and irritable…nothing seems to make him comfortable. He has a brief period when he first wakes up in the morning when he feels half-human but by the time he takes his morning medications, completes his morning bathroom routine, and does a few exercises, he’s “done in.” He then has nothing left for the day. I put him on his peddler and start the process of my dual life. I work maybe 15 minutes, then, “Hey, sweetie,” is heard from down the hall, and I go (pick one or more: give him nose spray, get him cold water or hot tea, adjust his clothing, fix the peddler, scratch an itch, change the TV channel, help him with the computer, …). He just can’t get comfortable.
Then there’s the irritability… I have a baby monitor that sits beside my work computer so I can hear what he needs. His “comments” generally indicate a great deal of frustration. I know he has absolutely no patience right now and I usually get a string of commands/requests rather than one or two. He apologizes all day because he hates to be this way but he’s so miserable he just can’t help it.
He has also gotten depressed. That is one of the major side-effects of this drug. In fact, it can lead to suicide. He’s not there or even close but he was nearly in tears this afternoon talking about being afraid. Whenever he starts feeling this bad, he becomes afraid that it won’t end…that life going forward will always be this way. That’s pretty common for anyone who feels bad but I especially think it’s difficult for those with a medical condition that often DOES get worse and stay bad. He used to not share these concerns with me but he’s learned that if he does, I can usually help him see that there is a temporary reason for why he feels so lousy. I expect though that he may need a lot more support while on this medication and maybe even an increase in the anti-depressant he’s on. I’ll keep a close watch out for how he is doing for sure.
The hard part for me now is that I’m so conflicted. My job needs my attention more these days. My daughter’s baby is due June 3 and I’m planning a baby shower for her on April 28…that’s fun but it also takes time and a lot of work to put it together. (it’s not so much work if you don’t already have too much to do but in my small world right now, ANYTHING extra, good or bad, is a lot of work!) I want to be there for him but he’s wearing me out. Last night I had to get up to either cath him or help him get comfortable literally every hour and a half. I’ve been miserable myself all day (I did take a nap for an hour this afternoon so that helped a great deal).
He’s napping right now so that’s why I have time to write this. I dread the next two months as his medication titrates upward and he will most likely get more side effects. I really pray (literally) that the medication will help him and that his system will adapt soon.
If any of you use or have a family member who uses Rebif, can you let me know how long it takes for the side effects to settle and become manageable? Thanks
I’m confused as to why Lynn is considered relapsing remitting if he has a cath and seems quite incapacitated. Is he ever out of the wheel chair at this point? I know every case is unique but it frightens me as I have RRMS and take Copaxone and fear for the future when I read about Lynn and others who have progressed to this point.
MS is called the relapsing remitting type when exacerations make the condition worse but then the symptoms go away or decrease. Secondary progressive occurs after RRMS exacerbations stop going back to baseline but instead remain or only slightly get better. It’s not about the level of disability but instead about the recovery from the exacerbation that determines the catergory. With Lynn’s sever spasticity and then the deconditioning that occurred after the series of hospitalizations in 2010, the doctors are not sure if his type has progressed completely to SP or if it’s still RRMS with symptoms that are related to spasticity effects. He’s getting strong and some function is returning gradually so it’s possible it’s not actually SP now. Keep in mind each person’s condition is unique and the effects of MS are directly related to where the lesions are. Many people have minimal effects throughout their life; others progress more quickly. Lynn’s father had a faster progressing type so I suspect Lynn’s is more in line with what his father had. There is no reason to believe that yours will progress like his. You could easily be in the group that has more “inconvienent” symptoms rather than “disabling.” Keep the faith that will be the case.
Thanks. My husbands friend has a pump that automatically releases an anti spasm medication. I don’t know if you have heard of such a thing but he used to have a cane and now doesn’t but again II know everyone is unique. It’s just scary and sometimes I feel like reading blogs just makes me even more afraid. I’ve also started a monthly solumed infusion that I haven’t decided if its worth the risk as it didn’t change the minor symptoms I have in the least bit and the side effects are not great. The doctor wanted me on it because I keep having new active lesions. Who knows? Good luck and I hope Lynn feels better with the rebif soon.
Donna I am worried about you. Can you guys get a caregiver for at least 4 hours two days a week? I think you would be amazed at how much that will revive you. My doctor pushed me to get one for Tom and when I told him Doc said I NEEDED to have a break he said “Let’s DO IT” About the REBIF Tom’s nero suggested it then said Tom for the little bit I think it may help you I don’t think it is worth the risk. Tom said if it is only going to keep me out of a wheelchair for an extra year , I’d rather go into the chair and feel good. Now the doc just say if he was to prescribe anything it would be to make him feel better not Tom. He says I am sorry but there is just nothing out there for you at this point.
I have seriously thought about it but it’s the guilt thing more than anything else. I’m afraid if I get him a caregiver other than myself, he will see that as a sign that I don’t think he will improve. I’ve got some feelers out about help though and using my need to get back to work as the reason. Rationally Lynn knows I need help but he’s so dependent on me that he has a lot of separation anxiety and depression to combat about it.
Donna don’t let the guilt rob you of quality time with Lynn. You can’t be a good wife if you are exhausted. I know the guilt I felt the same way but I kept asking mysefl where will we be if I get sick? HUMMM I went to a caregiver support group once and they said 1 out of 5 caregivers die before the person they are caring for….yeeeks. Maybe we all need to think about that fact and realize we do deserve some break, if not for us but to be a better caregiver, no one can do 24/7 . Please think about it and talk to Lynn , he may supprise you.
Donna,
I’ve been following you for a little bit now and want you to know that you are touching people you don’t even know. I am the caregiver to my sister who has (depending on which neuro you ask) either PPMS or SPMS.We live together (along with my husband, son & other sister) and, for the most part, I provide most of her care.
We recently made the decision to bring an aide in to help us. It was hard because my sister can be very demanding and I have high expectations but it was the best thing I ever did. A lot of the resentment and anger I was feeling about caring for her has waned and I’m not totally exhausted all the time. When we made the decision to do it, I told her it was because I wanted to stay her sister and not be her aide. It takes a HUGE toll on your mind,body and soul caring for someone with an illness like MS…and I guarantee that your husband hates you doing it almost as much as you do. Seriously consider getting help ….from one Donna to another, it will be worth itin the end.
Donna
PS We were able to get my sister approved for the PA Independence Waiver program. The program promotes independence for the disabled with things like aides and home modifications. Definitely saved us!
Thanks Donna for your encouragement. I’ve been thinking about it a lot but just can’t bring myself to do it yet; though I know it’s what I need to do for both of us. It’s a hard step to take…letting go any of the control for his care but definitely something I need to do if I can find a way to afford it and can get someone to who is good. Thanks and good luck with your new arrangement!
Donna
We are new to the MS world. My wife was diagnosed just about a year ago and the disease hasn’t progressed a lot as in the symptoms themselves. They come and go as you know. She was on Rebif for about 4 or 5 months and we stopped it because she was always feeling the flu like symptom that comes with it. It was the flue like symptoms where you don’t want to get out of bed. We waited it out, hoping it would go away and it never did. She felt like she would rather face the MS symptoms for a week here or there then feel sick all the time.
They are getting ready to try Copaxone. They don’t like more lesions that have shown up in her recent MRI. I realize Lynn and my wife are different and that MS treats everyone differently. You have to be a lot more of a caregiver than I have to be at this point. But if you don’t mind sharing the problems you had with Copaxone, I would appreciate it. Obviously the once a day is a huge negative. My wife hated the 3 times a week so she is definitely not looking forward to daily ones.
As far as what’s above, I agree with you getting someone to help for a little bit of time so you can have you time. I understand how you feel, and I understand how you think it will make him feel. But in my opinion, you have to take care of yourself before you can take care of him. I think you could be a better caregiver if you take a little time for yourself. And I hope you understand I’m not saying your doing a bad job, but I think your happiness has to be included in your caregiving.
Thanks for your kind comments, Jeff. Lynn was on Copaxone for five years and the only side effects he had was itching and redness at the injection site. It never bothered him otherwise. As far as taking it every day, there is an injector they give you to use and it’s very easy to manage so it’s really no different than taking allergy shots every day. He did very well on it. His doctor didn’t want to keep him on it since he has progressed so far but Lynn was all prepared to stay with it if that had not been the case. In fact, if Rebif doesn’t get better, he may go back anyway! Best wishes to you and your wife.
Donna
Yes getting yourself help would be like giving yourself oxygen on the plane before administering to others Donna. And Jeff I’ve been on Copaxone for a year with no side effects. I am so used to the daily injection I think of it like brushing my teeth. Good luck.
Multiple sclerosis (MS) is a disease in which the nerves of the central nervous system (brain and spinal cord) to degenerate. Myelin, which provides a covering or insulation for nerves, improves the conduction of impulses along the nerves and also is important for maintaining the health of the nerves. In multiple sclerosis, inflammation causes the myelin to disappear. Consequently, the electrical impulses that travel along the nerves decelerate, that is, become slower. In addition, the nerves themselves are damaged. As more and more nerves are affected, a person experiences a progressive interference with functions that are controlled by the nervous system .
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