Search found 23 matches
- Wed Mar 01, 2017 4:25 pm
- Forum: Gilenya
- Topic: Coughing side effect?
- Replies: 2
- Views: 3887
Re: Coughing side effect?
I never had a cough as a side effect on G. However, when I did get a cough or bronchial issues, it would last much much longer than it did before G.
- Wed Mar 01, 2017 4:22 pm
- Forum: Gilenya
- Topic: Real risk of ‘rebound syndrome’ after stopping Gilenya...
- Replies: 4
- Views: 5188
Re: Real risk of ‘rebound syndrome’ after stopping Gilenya..
Yeah, there are always tradeoffs. I've used ativan off and on a lot in my life so I'm ok with it. thanks for the info.
- Tue Feb 28, 2017 8:17 pm
- Forum: Gilenya
- Topic: Real risk of ‘rebound syndrome’ after stopping Gilenya...
- Replies: 4
- Views: 5188
Re: Real risk of ‘rebound syndrome’ after stopping Gilenya..
went in to neuro today. Learned a few things. They are doing some case studies on Gilenya and HPV. 3 women in the clinic had it get reactivated after being dormant for years. she's using me as one of her case studies. This info needs to get out! according to me. I'm having trouble typing so keeping ...
- Sun Feb 26, 2017 11:50 am
- Forum: Gilenya
- Topic: Does gilenya stop pot from working?
- Replies: 1
- Views: 3601
Re: Does gilenya stop pot from working?
I've used cannabis while on Gilenya and when off of it, and I did not notice any different whatsoever. I also never had pain from the Gilenya. I wish you the best with your treatment.
- Sun Feb 26, 2017 10:25 am
- Forum: Gilenya
- Topic: Real risk of ‘rebound syndrome’ after stopping Gilenya...
- Replies: 4
- Views: 5188
Re: Real risk of ‘rebound syndrome’ after stopping Gilenya..
This just happened to me. I'd been on Gilenya for 5 years. I had a dormant case of HPV from back in my 20's and while on Gilenya, it got reactivated. I was getting CIN III level dysplasia, did a LEEP procedure but still couldn't clear the infection. My husband and I were using condoms, etc, to avoid...
- Sun Feb 26, 2017 9:57 am
- Forum: Gilenya
- Topic: Doubt about cannabinoids and fingolimod
- Replies: 2
- Views: 6325
Re: Doubt about cannabinoids and fingolimod
I was on Gilenya for 5 years and I use cannabis. I went off of it 5 months ago. I did not notice any difference in the effects of cannabis while on Gilenya or now that I am off of it. For what it's worth.
Trish
Trish
- Wed May 07, 2014 6:45 pm
- Forum: Drug Pipeline
- Topic: Has anyone here had BOTOX injections in the bladder ?
- Replies: 27
- Views: 23902
Re: Has anyone here had BOTOX injections in the bladder ?
Janet, I am not self-cathing. I thought that's what was next, but instead signed up for this study and increased my usage of D-Mannose. I used to take D-Mannose powder in water when I thought I was getting a UTI but now use it proactively. The urologist I saw for the Botox specializes in MS patients...
- Wed Apr 23, 2014 9:42 am
- Forum: Drug Pipeline
- Topic: Novartis Gilenya MS Pill to Cost $48,000 a Year
- Replies: 14
- Views: 7593
Re: Novartis Gilenya MS Pill to Cost $48,000 a Year
I agree that the cost is out of control. That's the model we are dealing with. And, I've been on it for three years and it works (for me.) I greatly appreciate having insurance that covers it. Gilenya changed my life. I've had MS for 20+ years. In three years, I have not had a relapse that's lasted ...
- Mon Apr 21, 2014 12:26 pm
- Forum: Drug Pipeline
- Topic: Has anyone here had BOTOX injections in the bladder ?
- Replies: 27
- Views: 23902
Re: Has anyone here had BOTOX injections in the bladder ?
I signed up for a trial for people w/MS and Botox. It's not making my face look any younger, but you should see my bladder. (My standard joke.) The trial is testing the dosage -- there is no question that Botox works for neurogenic bladders; it's just about how much you need. It has been life-changi...
- Sat Dec 05, 2009 12:17 pm
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: Too Early to Promote CCSVI
- Replies: 84
- Views: 15888
- Sat Dec 05, 2009 11:04 am
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: Too Early to Promote CCSVI
- Replies: 84
- Views: 15888
Re: Thank you so much for your post
mohzi, I really support what you said in your opening post. Which doesn't change the fact that I, like you, really look forward to finding out what happens with trials. I tend to be cautiously optimistic on MS stuff, probably because I've been disappointed a few times. I just stopped using Tysabri, ...
- Fri Dec 04, 2009 9:24 pm
- Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- Topic: Too Early to Promote CCSVI
- Replies: 84
- Views: 15888
Summary from Marie Rhodes at Stanford
This is a pretty helpful and balanced summary from the CCSVI Facebook page: "Hi My name is Marie Rhodes, I am an RN and was the second person treated for CCSVI by Mike Dake MD at Stanford. I have SPMS and got ill with MS in '91. I agreed to be co admin for this facebook page to assist in the ov...
- Sat Apr 05, 2008 9:50 am
- Forum: Regimens
- Topic: IV solumedrol as preventitive for relapses
- Replies: 6
- Views: 10871
just did three days of IV Solumedrol
I first did it was 6 years ago, for 5 days, and swore I'd never do them again either.I think maybe I did, though. In any case the three day version feels less harsh, so far. Had a rough first night but have kept inside and quite for the next couple of days and felt better. It remains to be seen how ...
- Fri Feb 29, 2008 12:28 pm
- Forum: General Discussion
- Topic: Im so confused, I need so direction
- Replies: 10
- Views: 2973
I say most certainly get a 2nd and 3rd opinion. You need to find the dr you have the most respect for, and who will give you the full range of options that you have if it is MS. Try not to be too scared - early awareness of MS and how it impacts *you* is the best way to deal with it. And you can lea...
- Fri Feb 29, 2008 12:20 pm
- Forum: General Discussion
- Topic: Multiple sclerosis drug linked to liver injury
- Replies: 8
- Views: 3557
I think it is easy to fear that. It's a new and powerful drug. Thought I can't imagine that most drugs don't cause some impact on the liver, actually. Because I'm on Tysabri, I choose not to be driven by fear about it. It has helped me immensely when none of the other drugs did. I am very aware, tho...