desinitelife 10/04/17
Last reply 2 weeks ago
Alternative Medicine instead?

I have been suggested an herbalist (primarily suggests taking a shake each day and supplements made of Goat powder). I was on Copaxone previously but had a reaction after just after a year. It was great and didn’t have any other trouble with it previously and the nurse was amazing and did regular followups, and I had felt the care to want to continue, even after my reaction but my doctor had suggested not to. I was asked to select another medication but have been very very hesitant to select another one and not sure why but my doctor has suggested Plegridy. Any ups downs or other suggestions? Please advise because my doctor had suggested this over a year ago and seeing my doctor next month and had promised I would select something by my next appointment.

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californiadreamin
10 months ago

@desinitelife I can give you my opinion but its only that, my opinion. I have read through and watched everything on MS that I could that was reputible science and based on that my wife selected Tecfidera as her treatment of choice. Reading your note, the couple concerns I would call out (though everyone is different pepole arent in the same situation).

First, MS is a complicated diease and it is just as likely an herbalist could be doing harm as helping. Its really hard to study on something like MS beause of its relapsing nature to see how effective it is. I dont know what the purpose of the goat powder is, but I dont think its known to be helpful for MS. While my wife is using tecfidera, we are using other suppliments, dietary changes and lifestyle changes, so we are open to alternative options that at least show some sign of being more helpful that harmful.

Second, Since this is your situation, I wouldnt give to much weight to “pleasing” your dr. Its really about you. What do you want? Learning about the risks and tradeoffs can help you make an informed decision. Early treatment seems to show the most promise with MS with as effective as a medication that is worth the risk. Plegridy seems to be less effective at stopping relapses and even less effective at slowing diease progression then Tecfidera. So unless there is a reason you are avoiding a medication like Tec I would consider that before Plegridy personally. There are a number of reputable sites, blogs and discussions on the various DMT’s. Unless your dr has a good reason for not choosing something like Tec, I would worry that he might be a bit out of date with the latest research. However, I have no medical background, so his recommendation is obviously based on information and knowledge he has that I dont (how agressive your MS appears, what your MRI’s looks like etc). There are other medications that maybe even more appropriate then Tecfidera for your situation. I am only saying that given a similar choice, what our family decided to do so you have it for a reference.

Did you stop copaxane a year ago? Was your dr ok with you just waiting a year to choose something else? Are you doing ok so far?


desinitelife
10 months ago

Hi @californiadreamin I was also on Avonex for about a year but also had a reaction to that as well. So it’s been about a year now since I haven’t been on anything and I feel normal (well as normal as can be) with no signs that appeared aside from fatigue. But again, we all know that ms is one that will not tell you when it’s coming. I have altered a lot of my life by first and for most…making healthier eating choices and exercising a little more. I would appreciate any other other suggestions on blogs or reputable site from yourself or anybody else on here. I’m just looking for a second opinion from somebody other than a doctor and I really apprecI ate your help.

Also, another major reason tech wasn’t picked wad the cost of the oral. In Ontario, Canada and the private drug benefit system from work…the cost is still very high. Maybe that is what is holding me back but would definately apprecut any other recommendations but will look into tech as well.

As for the goat milk/ goat milk powder in a fruit shake, it gave me some eberg to get through the day but to be honest it could just be a belief in my head. Who knows.


californiadreamin
10 months ago

@desinitelife that makes more sense why Tec might not have been recommended, I didnt really understand that insurance aspect of it. Here in the US its about the same price for them (at least our portion of it).

My wife had some horrible GI issues with Tec in the beginning but we found a way aroud those by using Singulair. We almost gave up, but I think the second choice drug for us was between Gilyena and actually trying to use rituximab. Rituximab is offered at several clinics in the US but its not FDA approved for MS. However, its highly effective from the results I saw and countries like Sweden use it heavily. Roche was developing ocrelizumab and stopped pushing Rituximab. Is that available in Canada for MS? It has a long track record for use with RA. That was the drug we were going to use next.

In light of ocrelizumab not sure what we would use if we had to make the choice today. ocrelizumab is still so new and its unclear what unknown effects there might be.

We wanted to avoid Gilyena because of the heart issues and because of the 10% of people that have the rebound effect when they stop the drug.

Here is a video that I think is worth watching to compare some of the various medications. This is the rocky mountain MS center but it at least gives more data then your Dr might have done in the short time we see them:

My wife takes the following supplements and we follow OMS (overcomingms.org) pretty carefully.

D3
Alpha lipoic acid (the r type) not to be confused with the one from flaxseed (https://www.youtube.com/watch?v=JTGVHQt66YA&feature=share)
Biotin (its not high dose just the normal stuff you can buy)
B1
B12
Probotics
Turmeric
flaxseed oil (20ml a day)

Take a look at the above as a start and see if its helpful to you. I can post other items once you take a look and see what you think.


spunky
10 months ago

@desinitlife I too am from Ontario!
Be sure that you are seeing an MS specific neurologist. it is worth the wait (if you aren’t already) You could look into applying for the Trillium Drug Benefit and often the drug companies are willing to pay for some of the drug if your insurance doesn’t cover the cost.

I know the neuros here have a different philosophy of trying to use DMTs with the fewest side effects first rather than trying to hit the disease hard if you don’t have severe symptoms or progression.

If they want to keep you on a first line drug, I can recommend the oral drug Aubagio. The efficacy is similar to Avonex and Copaxone. The only side effect I experienced was from months 4-7 or 8 I experienced hair loss/shedding. It fell out evenly and not patchy just as the booklet said. It has all grown back in and I have been on it for over a year now.

Good luck


Anonymous
10 months ago

Hi @desinitlfe some great advice from the guys above. We are all different and our ms is different, you need to listen to your instinct and your body. I’m not on drugs and haven’t been since diagnosis 11 years ago, maybe one day I will, but right now I’m using diet and yoga and relaxation. I’m pretty stress free too. Currently I’m following a programme to clean up my gut and get rid of infection and inflammation in my gut which effects the whole body. It seems to be working as the fog is clearing, my brain is working better, the fatigue is reducing and I have more energy – but it’s early days and I’m not naive in thinking that this is a ‘cure’. I have a closed fb page for autoimmune disease which I post positive messages/links to pages/my own experiences about yoga, natural body & household products, food and gut, complimentary therapies and rest & relaxation. https://www.facebook.com/groups/Controlms/
Try and stay positive 😀


desinitelife
10 months ago

@spunky What is the cost on it after using Trillium? How have you felt since?


desinitelife
10 months ago

@californiadreamin Any further pieces? They are great thus far!

@Vickivictoria Thats great to hear. I just keep getting scared and have just started doing a lot more research. I have been diagnosed for a few years now but just not paying more attention. I have felt great, apart from the fatigue but all has been well thus far. I am very concerned about the future and what may come. Yes, nobody knows but I want to try and control it as much as possible.

To your comment, I was travelling and my medication was confiscated in France at the airport before I was able to board on my connecting flight. Although I had a doctors note and all the supporting evidence, they didn’t let me take it. And that was one of the turning points of taking my medication. I don’t know why but that was it.


spunky
10 months ago

@desinitelife I didn’t go through the Trillium program as my insurance pays for all my medication after $1500. I don’t pay anything because Genzyme (producer of Aubagio) covers the $1500 that my insurance doesn’t. I think they will pay up to $2600 a year.

My neurologist gave me all the paperwork for the Trillium Drug Benefit when he prescribed me Aubagio. I feel great on it and have no side effects (besides the hair thinning between 4-7 months). I take the small pill once a day (same time) and I have had no issues. I find it very easy and glad I picked it over a needle (bit of scardy cat when it come to needles). Although I do go for blood tests once a month for the first 6 months and every 3 months after that to check my liver. Liver problems is a potential side effect but they monitor you closely and won’t send you more medication if you don’t go for your blood testing. I have had no change in my liver and I have been on it for over a year. Good luck with what ever path you choose. Be sure to google Trillium Drg Benefit to get the details.

Best wishes


Anonymous
5 months ago

I was diagnosed in 2006 with multiple sclerosis, the only symptoms at that time were falling and legs hurting and moving all the time. I remember no symptoms at all until last year. I went into full seizure mode, I was put on Avonex. I had the symptoms of that medication every day for 13 weeks, I mean I was so sick every day. I stopped that medication and a few days later I was back to my normal self. Then a few weeks later I started having attacks every week and I was really bad. It’s like one long attack every day. My upstairs neighbors cause me great anxiety every day. I have gotten a new neurologist and she started me on the Copaxone and I didn’t know what to expect, I knew I hurt from when I wake up until I go to sleep.I lost touch with reality.I started on xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx in June 2017, i read alot of positive reviews from patients here in the United States on their success rate treating multiple sclerosis through their Herbal formula and i immediately started on the treatment. Just 7 weeks into the Herbal formula treatment I had great improvements with my Vision and coordination, my stiffed, rigid muscle had succumbed. I am unbelievably back on my feet again, this is a breakthrough for all multiple sclerosis sufferers, visit xxxxxxxxxxxxxxxxxxxxxxxxxx website xxxx.xxxxxxxxxx.xxx or email xxxx@ xxxxxxxxxxxxxxxx.xxx.

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chezy17
2 weeks ago

Hey.

I also started on Copaxone but my reactions to it wasn’t getting better with time. I was advised to either go on Tec or Plegridy but when the nurses mentioned it to the neurologist he thinks that I should avoid the Tec and start Plegridy which I did. His reasons for that was because my MS isn’t very active and I tend to get sensory relapses that leave no lasting damage so far…fingerscrossed 🤞.
I’ve had no problems with Plegridy and I’ve been on it for 4 months and so far it’s alot easier. Don’t get flu like symptoms as taking paracetamol for 3 days stops me feeling any side affects.

I didn’t have a relapse for over two years but catching the flu did trigger one which I think I’m starting to recover from now 😊. Hopefully, I’ll know if it’s working when I’ve been taking it alot longer 😊.

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