jp
New Member
Posts: 40 
|
Post by jp on Aug 3, 2016 13:11:42 GMT -8
Feel free to write about drug treatments and supplements.
|
|
jp
New Member
Posts: 40
|
Post by jp on Aug 3, 2016 13:14:21 GMT -8
What has your doctor prescribed for your type of MS? How do you think it's going? What have you previously taken? Why did you change? Are you taking supplements such as vitamin D, fish oil, etc? Want to try new drugs?
|
|
jp
New Member
Posts: 40
|
Post by jp on Aug 4, 2016 1:21:41 GMT -8
What has your doctor prescribed for your type of MS? Gilenya tablets after 2 years on Tecfidera tablets after 3 years on Copaxone injections after 4.5 years on Avonex injections after 1 year on Rebif injections. How do you think it's going? Tablets are certainly preferable to injections or going to hospital for infusions. Why did you change? Relapses and lesions appearing on MRI of brain. Are you taking supplements such as vitamin D, fish oil, etc? Daily tablets of Vitamin D and Omega 3 (fish or krill oil) have proven benefits for PwMS. Always have at least one blood test every 6 months to ensure chemical levels are not deficient and if for example need more vitamin C take required tablet. Want to try new drugs or treatments? Yes since MS is a degenerative disease it requires new actions to optimise my body's health. There are more exciting things to try continually being tried with medical progress such as CCSVI which Lauren seems to be the expert on and can helpfully copy her previous email onto this thread. Also stem cells could be used to cure us; www.telegraph.co.uk/science/2016/06/09/multiple-sclerosis-patients-walking-working-and-skiing-after-gro/ |
|
linda
New Member
Posts: 2 
|
Post by linda on Aug 5, 2016 6:34:55 GMT -8
Hello JP and all,
I am very interested in medications and going through a changing time at the moment. Trouble is, I am changing a few things at the same time. I know I shouldn't but as I stop one drug I seem to be more aware of problems with another!
I have a question for anyone using Fampridine (Fampyra). I have been on it for a number of years. When I started, I started to walk to the shops one day a week. (One Kilometer!) It really made a difference to my walking and I am happy to continue with it. Things went wrong last year. I went of Gilenya, did Mioxantrone, stopped the 1Km walk. Now stumbling badly even around the house. But when I started to go off the Fampridine, I had three falls in a couple of weeks. (Had had none for a year). Went back on (the two a day) and touch wood, no falls since.
My question is how long has the good effect lasted for other people? What happens when you stop? What happens if you start up again?
I am now going off Fluoxetine (Prozac). Neuro said go cold turkey! Pharmacist gave me a very slow regime to stop. After I am stopped for two weeks I will go back onto Tranylcypromine (Parnate). It is a dangerous drug (an MAO inhibitor) but has an 'amphetamine like' effect. I was on it for nine years from 1995. It certainly gave me a boost, and when I started, I was walking more than I had ever done. I will wait to see what happens!
Another big question for me is about Baclofen. Various physios have found some spasticity sometimes... The spasms seem to come when taking the drug! But before I took Baclofen I had spasms when sitting quietly in concerts, once when driving (I had to pull over) and generally. Now as I take a little less, the spasms haven't been too bad. But when they are bad, they are painful! I wonder if they started during an exacerbation and if they have perhaps gone quiet. I had bad spasms last year and Colin Andrews prescribed six 10mgs baclofen a day. That really wasn't good! I quickly got back to the four a day, and now am going down to three.... (while going off fluoxetine at the same time...duh!)
That is a lot for a "quick reply". other drugs I take are for continence (Oxybutinin) and pain management. and then of course there are the supplements...
thank you Lauren and JP for setting up this forum! Linda
|
|
jp
New Member
Posts: 40
|
Post by jp on Aug 6, 2016 4:31:04 GMT -8
Hi Linda and all, I had a very bad reaction taking Avonex and antidepressant Lexapro together after about a year for two months which occurred a few years ago leading to much disorientation. Sorry to read about your stumbling and hopefully someone here has experience/knowledge on either drug or can relate. In addition to your neurologist's advice I assume the new nurses at Msact would help and know some other places on the internet. Typing into Google: What happens when you stop Fampyra? Results in a overwhelming amount of information for me but perhaps someone else has the ability to answer. My experience with Gilenya has been positive thus far. Still take the same dose of Efexor since changing from Lexapro. Some exercise moving is beneficial for all stages of MS and hope you can resume sometime. Thanks for sharing your experiences since we might have to go through the same/similar in the future. All the best 🍀 |
|
janec
New Member
Posts: 25
|
Post by janec on Oct 31, 2016 18:31:02 GMT -8
Hi folks, this isn't a reply - I just wasn't given a 'new thread' option.
Does anyone know of any infusion options other than something like a medical day unit?
I have heard of people getting them at home and also wondered about general ward admission. Has anyone had any other option? And how has it been authorised?
Best wishes to all.
|
|
jp
New Member
Posts: 40
|
Post by jp on Nov 1, 2016 15:36:23 GMT -8
Hi Janec, Does anyone know of any infusion options other than something like a medical day unit? The only option Canberra Hospital gave me during MS relapses was hospital at home which meant driving far to get there for infusions. I haven't heard of people getting them at home and assume it would be difficult to get general ward admission, but hopefully others here will have information. Best wishes to all. |
|
jp
New Member
Posts: 40
|
Post by jp on Nov 1, 2016 15:38:28 GMT -8
|
|
annie
New Member
Posts: 1
|
Post by annie on Nov 1, 2016 22:18:54 GMT -8
Biotin - this has been recommended for my primary progressive MS. I need to take 300mg per day. Looking online I can find sources in the US for about $60 for 90 x 100mg capsules ie about a month's worth. Does anyone have any advice about this treatment, sources, price etc? Thanks.
|
|
janec
New Member
Posts: 25
|
Post by janec on Nov 6, 2016 2:32:43 GMT -8
Hi Annie, sorry I really don't know much about this supplement. Other than it is mentioned by a fellow PwMS here: overcomingms.org/watching-dust-settle/Perhaps you could get in touch with her somehow??? Otherwise, I buy my stuff from iHerb.com. I wish you the best. |
|
|
|
Post by weirdeb on Nov 9, 2016 13:08:30 GMT -8
When diagnosed 2014 was given Gilenya. Had a relapse with many new lesions. Have been on Tecfidera for the past 3 months or so. MRI scheduled for January.
Taking 4000IU vitamin D plus flaxseed oil.
|
|
|
|
Post by flower on Nov 9, 2016 18:47:38 GMT -8
Hi Janec, Does anyone know of any infusion options other than something like a medical day unit? The only option Canberra Hospital gave me during MS relapses was hospital at home which meant driving far to get there for infusions. I haven't heard of people getting them at home and assume it would be difficult to get general ward admission, but hopefully others here will have information. Best wishes to all. Hi Janec, Last year I had 2 infusions at my home. I had the first at the Hospital at Home in the Canberra Hospital and the staff offered to come to my home the following 2 days. It was a lot easier than travelling to the day unit. |
|
janec
New Member
Posts: 25
|
Post by janec on Dec 3, 2016 20:39:38 GMT -8
|
|
janec
New Member
Posts: 25
|
Post by janec on Mar 24, 2017 0:50:51 GMT -8
I have two boxes (one full the other nearly full) of Copaxone 40mg/ml - the newer version.
Contact me at jane_crawford_@hotmail.com.
|
|
janec
New Member
Posts: 25
|
Post by janec on Sept 6, 2017 4:14:25 GMT -8
Hello, I don't suppose anyone has a probiotic by BioCeuticals called 'SB Floractiv' (white plastic bottle with dark blue label)?
Since my dreadful reaction to my MS steroids my body doesn't tolerate probiotics and I'm hoping this one might be OK. I'm hoping I could buy a few tablets from someone to test before buying a whole bottle.
|
|
