Which drugs can help my mam?

[fenxiang]

My mather is MSed woman and she is in China. Now,my mother uses β interferon and she feels it is useful for her. But Bayer that make drugs company doesn't provide β interferon to Chinese patients by August 31st. I want to konw what drugs you use and you continue to use β interferon? And if anyone know that why Bayer doesn't provide drugs to China, you can tell me. I really want to know the reasons. Thanks!

[jreagan70]

Hi fenxiang:

You are asking good questions. But you will get better answers if you ask them of the direct sources of information.

Your mother's doctor knows what MS drugs are available in China that are available to replace the medication made by Bayer. Your mother's doctor is the best person to ask.

Most of the members of MSWorld live in the United States, and we have many members from Canada and Australia. We all have many choices for MS medicines. It will not be helpful for us to be telling you about our medicines if your mother cannot get them in China. That's why she and you must get information from her doctor.

As for why Bayer has decided to stop supplying their MS medicine in China, you can ask them directly. You can get the contact information for Bayer's Chinese office by doing an Internet search for Bayer's China website. Companies don't stop selling products that make money, so obviously something happened that made it no longer financially worthwhile for Bayer to continue selling their medicine in China.

There are more than one beta interferon medicines available for MS. There is beta interferon 1a and beta interferon 1b. The medicine made by Bayer is beta interferon 1b. In the United States it is called Betaseron. That is most likely the medicine that will no longer be available in China.

A few years ago, Bayer licensed another company to sell an exact copy of Betaseron, called Extavia in the US. Your mother's doctor should know whether Extavia is, or will be, available in China to replace Betaseron.

There are three beta interferon 1a medicines available in the United States: Rebif, Avonex and Plegridy. They are chemically a little different than beta interferon 1b, but they work similarly. If one of those is available in China, your mother's doctor might prescribe one for her.

With one exception, the other MS medicines have statistically better success rates for slowing relapses, brain lesions and disease progression. When you are able to find out what medicines are available in China, the members here at MSWorld can direct you to information about them and answer your questions about their personal experiences with them.

[fenxiang]

Thank you very much! Thank you for paying so much time to reply me. I feel very honour. I ask a lot of people in China for the information of the medicines. But I feel very sad , all the drugs didn't appear in China. Several years ago, Rebif can be bought in China. But it exited the market of China in 2014. Avonex just do clinical experiment. And Plegridy doesn't come to China. So my feel is very bad. I can't do noting for my mam. The Chinese MSed manbe the unlucky people in the world. Scientists find the way to treat the illness. But we can't share the happiness.

[palmtree]

It's too bad you can't go to the US. There really are a lot of options here. There are also many options in Europe and Australia.

One thing you could do is find out all the names of the treatments available in China. Then, write us back and we can give you guidance. The brand names are often different in different countries but the generic names are usually universal.

Shortly before my diagnosis, I had a Chinese friend who had MS. She did not use any western treatment but relied on Chinese remedies.

Sadly, I can't ask her what she used because she is no longer with us.

It's wonderful you have found this website. There are many things your mother can do besides take medicine to fight MS. Chinese food is very very healthy so she is already ahead of the rest of us. Exercise is also one of the most proven ways to keep the disease from getting worse. Another thing is to stay cool. Don't go outside when the sun is outside and it's hot.

Your English is very good. Write us again and tell us how she is doing.

[fenxiang]

Thank you! I feel very sorry to hear that your friend go away. I can become your next Chinese friend. I am studying in Shanghai now. I will stay here for three years. If you have a chance of coming here, you can contact me. It is an honor to be your tour guide.
I always think if my mother was American what would happen. I accompanied my mother Peking Union Medical College Hospital in this summer vacation. And my mother's doctor talk me that my mother only has to use immunosuppressive agents. The drug name is Mycophenolate Mofetil Dispersible Tablets. If we want to use other mendicants to treat, we have to go to Hong Kong or other countries.
I feel very regretful. Today, there are more than 20000 patients to use Betaseron to treat their MS in China. But now, we have to wait, wait and wait.

[fenxiang]

It's too bad you can't go to the US. There really are a lot of options here. There are also many options in Europe and Australia.

One thing you could do is find out all the names of the treatments available in China. Then, write us back and we can give you guidance. The brand names are often different in different countries but the generic names are usually universal.

Shortly before my diagnosis, I had a Chinese friend who had MS. She did not use any western treatment but relied on Chinese remedies.

Sadly, I can't ask her what she used because she is no longer with us.

It's wonderful you have found this website. There are many things your mother can do besides take medicine to fight MS. Chinese food is very very healthy so she is already ahead of the rest of us. Exercise is also one of the most proven ways to keep the disease from getting worse. Another thing is to stay cool. Don't go outside when the sun is outside and it's hot.

Your English is very good. Write us again and tell us how she is doing.

Thank you! I feel very sorry to hear that your friend go away. I can become your next Chinese friend. I am studying in Shanghai now. I will stay here for three years. If you have a chance of coming here, you can contact me. It is an honor to be your tour guide.
I always think if my mother was American what would happen. I accompanied my mother Peking Union Medical College Hospital in this summer vacation. And my mother's doctor talk me that my mother only has to use immunosuppressive agents. The drug name is Mycophenolate Mofetil Dispersible Tablets. If we want to use other mendicants to treat, we have to go to Hong Kong or other countries.
I feel very regretful. Today, there are more than 20000 patients to use Betaseron to treat their MS in China. But now, we have to wait, wait and wait.

[jreagan70]

And my mother's doctor talk me that my mother only has to use immunosuppressive agents. The drug name is Mycophenolate Mofetil Dispersible Tablets.

Hi fenxiang:

If your mother isn't able to get Betaseron or one of the low-risk MS medicines, an immunosuppressant medicine can be a good option. Mycophenolate mofetril is prescribed by some neurologists here in the US to treat MS, with success.

I took mycophenolate for 10 months several years ago. Of all of the many medicines I have taken for MS, mycophenolate worked the best to control my relapses. I was having frequent relapses before that, and didn't have any relapses while taking it.

I wish I could still be taking it, but it gave me stomach and intestinal side effects that could not be controlled with simple drug store medicines. I decided not to try to add more medicines just to control side effects, so I stopped taking it.

If your mother is willing to take on the risks of an immunosuppressant, if she isn't taking any other medicines that can't be used with mycophenolate, and she doesn't get any unbearable side effects (most people don't), it might be a good medicine for her to try. She will have to have blood tests every one or two months to make sure her liver and kidneys are not having any trouble with the medicine. But if she feels good while taking it, it might help her treat her MS when she can't get another medicine.

[Kimba22]

Hi fenxiang,

Mycophenolate mofetil is commonly known as Cellcept, and considered an off-label treatment in for MS. (I was on a different one, Cyclophosphamide). There is a generic version of the drug (By Teva Pharmaceuticals), making the cost of this drug relatively inexpensive.

An off-label treatment means that the drug has not been officially approved by the FDA for a particular disease, but there is evidence and experience to support the use of that drug for the treatment of that disease. Off-label treatments are very common in medical practice and usually are the result of years of experience and research carried out by doctors and scientists. However, since these drugs have not been formally tested in phase III trials with successful results presented to the FDA, they are considered “off-label”. Nonetheless, from small scale studies, there is reasonable evidence to support their use based on their ability to reduce the frequency of relapses or slow the disease progression or both. (Source: Wayne State University MS Clinic and Research Center)

I hope this drug helps your mom and she tolerates it well. Thanks for caring so much about her, and I'm so sorry to learn none of the MS Disease Modifying Drugs are available in China anymore. That's just sad.

And if anyone know that why Bayer doesn't provide drugs to China, you can tell me. I really want to know the reasons.

(Beijing) – German drugs and pesticides maker Bayer AG will stop selling a type of medicine to treat multiple sclerosis in mid-2016 due to "supply problems," a government-backed charity warned.

The drug maker confirmed that it will stop selling the drug, known by its trade name Betaferon, in the domestic market in August. It was tight-lipped about why it plans to cut supplies in China. http://m.english.caixin.com/m/2016-03-09/100918261.html

"Tight lipped". It's about money. Pharmaceutical companies are pressured to curb their prices by the Chinese government. Sadly, our MS therapies are very, very expensive drugs.

Both Chinese and foreign companies have been hurt as all drug manufacturers must compete in local bidding to sell their medicines in public hospitals. Some like the Eastern Zhejiang province have asked for cuts of 10 to 20 percent as a requirement to participate in local tenders, according to consultancy McKinsey & Co. Companies can decide to take the cuts or drop their bids, essentially stopping sales of certain drugs in parts of the country.

"The tenders are indeed relatively chaotic,"*said Ding Lieming, chairman and chief executive officer of Betta Pharmaceuticals Co., a local drugmaker. "Once isn’t enough, after the provincial tenders, cities also have one round of price negotiations, and then another round at hospitals." http://www.bloomberg.com/news/articl...tting-campaign

Thanks for reminding us how very fortunate we are of all the options available in our country.

Best wishes in your studies, and also to your mom. Please keep us updated.

[jreagan70]

Hi fenxiang:

There was a study published in 2014 in the Journal of Neurology, Neurosurgery, and Psychiatryabout the use of mycophenolate as a treatment for MS. It's called "Mycophenolate mofetil in multiple sclerosis: a multicentre retrospective study on 344 patients," and the abstract is online here: http://www.ncbi.nlm.nih.gov/pubmed/23704316.

The results of the study suggest that mycophenolate can improve or stabilize MS patients and can be used as an alternative therapy. It worked very well for me, but I was one of the few people who had digestive side effects that made me have to stop taking it. It sounds like most people don't have bad side effects.

There may be other scientific articles about it online. I hope this study gives your mother and you some confidence about trying mycophenolate to treat her MS, and gives you some information to talk with her neurologist about.

Please come back and tell us how your mother is doing.