Disclaimer
Disclaimer please read!
Please Note: Any advice given on OzMS must not be taken as medical advice, it's merely advice given by members from their own experiences of living with Multiple Sclerosis. Always check with your GP or Neurologist or other medical professionals, it's the smart thing to do and only logical! If you have something to contribute please do so, everybody has something to offer.
Carmy, glad that you did improve some, I'm sure they would never have sent you home unless they were sure you would manage
Hopefully the weekend ahead provides lots of rest.
Belind
Wow, Kimmi, the responses for your original post are amazing
What a fab mob you all are.
Glad you called your nurse, Kim. I did the same this afternoon. I explained that, although I was to start rebif with new electronic injector this month (Whizz-bang) I felt for myself that with how I was feeling, maybe I should go off the meds for a while. She stated that, although not ideal, I'm fine to stop & she'll have a chat with my neuro to see his opinion etc.
So I'm off them as of today, when my last script finished, and will hear from the neuro next week (Relief!!!!)Hope all pans out well for you Kim.
Helen, Denise, Bec your input has been very valuable to myself, and I'm sure for Kim too.
Take Care
Nikki
Yeah I've been released Belinda. They really don't know what the issue is.
They were supposed to send me home with some sort of heart monitor but it didn't happen, they seemed a bit all over the place at the hospital.
Anywya, heart rate is back up in the 50's which is beeter than the 40's.
Feeling really weak but I'm sure they know what they are doing.
Helen,
Put me down for something, just not Moderating as I'm not the most balanced individual.
Regards
Sean
Hi Nikki,
I was prescribed Copaxone because I DID have anxiety/depression issues. The neuro did not prescribe an interferon, (Rebif, Betaseron, Avonex) because they are known to aggravate or cause these conditions.
I take Vitamin D at 5000iu per day and fish oil . There is published research which says that for every 12 mmol level of Vitamin D the relapse rate decreases by an additional 10%, this study was done in Tasmania, and has just been confirmed with the exact same results in the US.
I found that when I upped my vitamin D level - 3 years ago, I have not had a relapse since. So - it's the least you can do to help yourself.
Helen.
Hi Carmy,
Sorry to hear you are having such a time of late. Have you been released from hospital? I'm surprised they didn't keep an eye on you for longer. Hopefully things are picking up now and you get some firm answers
Take care and go easy on yourself
Belinda
Thanks for all the replies.
Spoke to my ms nurse and she thinks it will be a good idea to stop the rebif but wants me to talk to my Neuro first which is next week.
Rebif is such a horrible drug for me anyway.
I will be glad to get rid of this anxiety.
Thanks again
Desu5095 needs to be deleted. he/she/it posted about 8 pages of spam advertising medications - everything from viagra to panadol... I have deleted the offending posts but think this 'member' should go to. The member has been one fro about 4 hours....
I have removed spam as posted by desu5095. If this 'member' returns - please think before you post - we don't need viagra. Thanks
I'm in too
Hi Nikki,
I was one of the naughty ones who just stopped the injections...but because Avonex is a weekly injection and I'd only been on it for 6 weeks I don't think it was a major issue. I did go and see my GP and told her what I'd done, and she told me to see my neuro asap. When I rang my neuro for an appointment, and told the receptionist I'd stopped taking my medication, I managed to get in quite soon!
I waited a couple of months before starting on Copaxone, just to get the Avonex out of my system.
Hope you find a medication that's right for you soon.
Take care
Denise
I took Rebif for three years. I was depressed, moody and not sleeping. I woke up one morning and decided I couldn't face the idea of another needle - so I stopped. I didn't seek medical advice I just stopped. I DO NOT recommend it. Talk to your doctor/nurse. before you decide anything. My neuro was really mad.
It takes about 6 weeks for the Rebif to be out of your system. I found that once I stopped the injections my depression slowly went away and (oddly) a lot of my MS problems reduced. I stopped falling down so much and the hugs reduced somewhat.
The thing with Interferons is that the only way you can tell if they work for you is when you stop taking them. Rebif works about 25% of the people taking it. It didn't work for me. By stopping it the way I did however (cold turkey) you can have major issues. I was lucky/stupid. I don't recommend it.
Having said that my life has dramatically improved since I stopped it.
Good luck! Let us know how it goes!
Bec
So sorry to hear you've had to have yet another operation. You certainly have had more than your fair share of problems.
Get well soon Sue.
Got it on bill received today.
With energy from 1kw solar my bill is only 24 this time but that includes deduction for medical rebate.
Nice surprise.
Barb
Denise, the things that help us may affect us in other ways
Great that you stopped taking the Avonex. Did you just stop taking it, or see your specialist first? They can take a while to get an appointment with. I'm glad the Copaxone is working wonders for you, I may have had my 'brands' mixed up on earlier post.
Take care
Nikki
I would be very willing to help if i can. I have no previous experience in anything like this so would need some instruction, but I'm a fast learner.
i would hate to see this site disappear.....
Denise
Not really sure what's next, I guess the chat with my nurse may give some direction. I'm also pretty sure Copaxone may affect people with anxiety/depression issues as well, so not to sure where to go. But alot of people on this site swear by Vit D, fish oil & flaxseed oil, so I guess these and a good diet, even without meds, would be beneficial.
I hope your neuro can help you out when you chat with him
Take care & enjoy the weekend
Nikki
Hi Kim,
I haven't been on Rebif before but I did take Avonex for 6 weeks earlier in the year and it had a dreadful effect on me. I could handle the flu-like symptoms ok, but the anxiety i experienced was awful. If I hadn't stopped when i did, I could imagine becoming suicidal.
I'm not sure if all the interferons have this effect on mood, but if you have had problems with anxiety i wouldn't recommend Avonex.
I am now on Copaxone - have been since May. It seems to have no bad effects at all on my mood. And you do get used to the daily injection - it just becomes another daily chore like brushing your teeth.
Take care
Denise
Hey,
Yeah i did suffer with a little depression when on betaferon but no where near the amount of anxiety that Rebif is causing me.
I think that the interferons are just not working for me anymore.
hope you dont get the dreaded answering machine when you call your nurse, can be so frustrating hey??
Do you know what your next plan of attack is with medication?? I really dont know what to do now. Have a great Neuro/specialist but just hope that he listens to what im saying here.
Kimmi
Hey Kim, I know how you feel, have felt much the same for a year now. Changed my Neuro and told him that I had been seing a councillor for anxiety (burn out?)but having probs with sleep as well. He changed me from betaferon to rebif around June last year.
Now from reading these pages, and a bit of research I've since learned that if you have any anxiety/depression issues to tell your doctor (that's what I did a year ago) I believe I should have been taken off the interferons last year. They may be contributing to these feelings.
I will be chatting to my MS Nurse today (If I don't get answering machine) to discuss stopping meds or alternatives.
Hope you get answers when you next see your specialist, or call MS society/ ms nurse in the mean time:)
Take Care
Nikki
I don’t have much time; stay at home dad & part time evening work, open to ideas though regarding how I could help..
I am a regular reader. Either via computer or phone.
Be happy to do the spam/tag thing since the typing isn't what it was.
For when my other personality kicks in!!!I don,t have many!!
This person's profile no longer exists, so assume that Darin has banned them and just delete your personal message.
I got one too and have just been trying to find it. Off to delete it now.