I must have missed a lot here..
Rebif hurts liver in some patients.. Most patients will get better eventually. Less than 1 % had serious enough liver problems to stop the medication, while most patients on rebif will have transient elevation in liver enzymes.
Remember one thing: there is only so much you can do, Things will look better if you remind yourself that youre doing what you can :)
I tried Rebif several years ago, was on it til the first test then off. Nurse called and said to stop it, stop it now. We retested and my liver was off the charts. I noticed severe weakness and began dragging one leg as I walked. I went off it a week and then tried again. It only took 2 days to crash me. What I mean by crash, is I was so weak and sick I had to use a cane to walk. Nuero finally told me that I could not take interferons. I went over 3 years w.o drugs and did the best I have in years. I am back on copaxone as I am progressing in the cognitive regions. I do not tolerate alot of meds and he is threatening to pull me off the copaxone too...so I understand how you feel..If I am allergic to all the drugs for MS..where do we go from here??? Take care
Nobody, not one single dr., has commented on it. I thought for sure when they saw the dx of IC, then how it -ahem- disappeared, they'd flag that piece of info.
Nope.
Suzanne
I was also told I have hyper reflexes. Forgot abut that one. So many symptoms to try to keep track of.
What did your neuro say about your urinary and bowel issues? Does he think these are related to your other symptoms?
db1
I have been told that I have hyperreflexes. I went to google this and found the info on urinary and fecal incontinence, which I do not have. I was really confused.
So I realized that I had typed in hyperrefleXIA, not hyperrefleXES..........
and is there a difference?!
I have had bladder issues, was told I had Interstitial Cystitis. Then it disappeared!
I also have had constipation/slow bowel issues. Modifications to diet and patience in the bathroom have helped.
So, I have had/do have urinary and bowel issues, but not incontinence. Oh, except the time I was jumping rope with my girls, and sadly had to stop, fight back the tears, and go change my jeans. And there I was, creating memories for my kids, and coming up with more laundry instead.
And this is not about liver enzymes and Rebif now is it?
Suzanne
My understanding is that my acute "MS Hug" sensatiion around my rib cage was considered to be my thoracic symptoms. Double vision was attributed to the lesion on my brain stem. Not sure where the numbness originates from and I'm not sure the docs know either.
My c-spine symptom preseented a year earlier than the above, in the form of Lhermitte's.
I have not spoken with my neuro since receiving a copy of his report so I plan to review it in detail with him in a couple of weeks.
In the meantime I will have the follow up MRI done and have all of the above imaged, in order to have the most complete picture of what's going on.
Other symptoms I believe may be attributed to t-spine lesions may be urinary and fecal incontinence. I do not have these symptoms but seem to recall having come across this point in some of the literature.
db1
Would you be able to expand on what you said here:
"I asked my GP to ensure this time they do brain, c-spine AND t-spine (since my t-spine has never been imaged and my neuro said my last relapse was in part thoracic, based on symptoms)....."
I haven't had a t-spine yet, am wondering what symptoms you are referring to? (have had brain and c-spine, both w/ & w/out contrast)
Thanks,
Suzanne
What a dear, sweet person you are, to offer to go sit with 'deb' while she has her IV. What a precious thing to take time to offer help to someone in need. You are a true treasure, girlfriend. How glad I am that this Forum has you as one of it's members. We are all blessed because of it.
Hats off to ya sweetheart. You make us ALL proud...
Heather
Actually you should try fruit skittles to get rid of that taste...they work really well...the nurses gave them to me at Halloween last year and they made a big difference!
SL: funny you would say that about maybe the test being a fluke because I just this moment got an email from the nurse and she suggested possibly the same thing. She listed a bunch of reasons that could account for the result; and said for now they will just monitor; maybe take me off the meds for a while and then go back on and try again; maybe stay at 22 mcg as you mentioned; maybe switch meds entirely. I'm clearly going to have to develop a mindset of patience. Hopefully my next labs come back as promptly as usual and I will have a better idea of whether fluke or pattern.
She said my levels are:
ALT – H 157 – reference range (<50) U/L liver enzyme
AST – H 51 – reference range (<40) U/L liver enzyme
The first one seems really high?? I have no idea of the significance of this but I will be researching thoroughly.
Ada: thanks for the hugs and thoughts. I didn't even know I needed them, but I did.
Rena: Sounds wonderful. Killing time in outpatients with you would be a treat. I'll bring the peppermints.
db1
Those nurses at UofA Outpatient are fabulous aren't they!?! I have had a few incidents of emotion there as well and they are soooo supportive! I don't know if it's actually having the IV or what's in it but it's easy to lose it in there so you are not alone honey.
If you had pm'd me and my hubby wasn't working I would have gone down and sat with you at least while you were getting the IV honey! I could've at least gotten you something to take away that horrible taste and we could have giggled our way through the whole thing. Next time you are coming, I will do what I can to see you if you feel up to it even if it just means killing time in outpatient ok? Our time will come yet you will see!
Loves ya,
Rena
Obviously in the second paragraph I meant to say I hope this disease is NOT turning me into an emotionally manipulative person. Such a long post and I still managed to mis-convey my message.
Oy!
db1
Rena: I was in Edmonton this weekend where I had my treatment at U of A outpatients; I would've pm'ed you to go for coffee but just felt so terrible, and I know you have feeling lousy too. I didn't need to go all that distance to be treated, but we happened to be going that way anyway when the decision was made to do the steroids.
The good news is that as usual, the nurses in Edmonton were angels to me. The Admitting office was closed on Sat. when I got there and the nurse said I needed to register thru Emerg. With half the left half of my body numb and totally exhausted, my bottom lip started to quiver. She said "uh oh, you're not going to cry are you?" AND I DID!!! Right then and there. Thankfully there was only 1 other patient and I don't think she noticed. The nurse had me sit, started my drip, and had the other nurse come in while she personally walked over to Emerg to do my paperwork for me. What a sweetheart. I am not normally an emotional person, esp. in public, and as I sat there I hoped that this disease is turning me into an emotionally manipulative person. I have seen that tendency in others (in my family) and would be horrified to become like that. It was such a spontaneous reaction and I was not expecting it.
Amy: Yes I am starting to read up on Copaxone again. It may turn out that this is what I will need to be on. Interesting about your t-spine; this only reinforces what I know I need to do as well with the next MRI. Thanks for sharing that.
Ess: Liver stuff can be a side effect; I'm not sure everyone who experiences this must necessarily stop, I guess it depends on how high the levels get. The only time I apparently had a problem with my liver was about 18 years ago when I had mono. I remember my doc saying my enzymes were high and to avoid alcohol for a long time after my mono cleared up. I wasn't hospitalized or medicated, just told to be careful. Since then no probs and I am an occasional drinker only. Until dx'ed with MS I have never taken regular medications so there's no other reason my liver that I'm aware of for my liver to be taxed. No genetic issues: I had a relative who died of a failed liver transplant years ago however his problems were self-induced through very excessive alcohol abuse.
Re: why is my GP ordering this MRI; it was really just to expedite the process (or so I hoped) since I don't have another neuro appt till later in April but wanted another MRI done at the start of my Rebif in March. My neuro has a MS nurse is a good resource, but who acts as somewhat of a gatekeeper to the neuro; actually she has been helpful with a lot of stuff but I just figured I'd get my MRI easily here in town thru my GP. We have the luxury of a finally having a MRI in our community and not as long of a wait as in larger cities it seems. My neuro is cc'ed on all reports and I plan to bring my CD's to my next visit so he can evaluate and review with me.
My GP did ask for brain and c-spine, specified MS; so I don't know why they only did brain w/o contrast. Given the suspicious stuff, I was quite emphatic with GP on Friday about getting it all done this time, and thoracic too, and she agreed. My neuro noted the thoracic involvement on his last report but did not suggest at that time having the area imaged, and I did not think to ask for it.
Of course it is now that I am in this current relapse, and with everything else going on, that's got me back in investigative mode again, and I sure know a lot more than I did 6 months ago in terms of what to expect/request/demand.
Sorry to be so wordy here. Having trouble being succinct today!
db1
Hey Sweetie, I don't know what to say here, I don't have any answers for you, but I am here for you if you need to talk. You can always p.m. me. I will be thinking of you Honey.
Sending Many, Many Cyber Hugs,
Ada
Aw Man - Durn it!!!!!!!!
I wish this weren't happening. I pray that the high liver enzyme test was a fluke! I really hope this isn't another set back for you. Sorry I'm unable to offer much comfort, just want you to know that I'm thinking about you, and hope you don't have to stop the treatment. I'm glad they are keeping you at the 1/2 dose for now, and re-testing.
There are people that stay at the 22's. I've read that.
Hang in there the best you can,
SL
Gosh, this isn't good. Is liver stuff a common side effect of Rebif? Have you ever had elevated liver enzymes from some other cause? If you do have to change meds, at least there's still Copaxone for you.
Absolutely do whatever is necessary that you get the full monte of MRIs, done right this time. Why is it the GP who is ordering them? I'd rather you have an MS specialist evaluating them. Not just the GP, and not just the radiologist.
Let us know,
ess
I'm really sorry for this frustration for you. I don't take rebif, but do take copaxone. I know they work differently, but is there any chance you could take copaxone instead? It does not affect the liver. Love, Amy P.S. I'm glad you are getting your t-spine looked at; I had two lesions show up on mine and it was only until my third neuro requested a t-spine mri that they were found. Take care.
I don't have any answers for you honey but I just wanted to offer my support. I can hear in your words how worried you are and I am as well to be honest with you! However, remember that we have to stick together and please pm me if you need to talk ok? I am here for you!
Lots and Lots of Alberta Hugs,
Rena