منتديات حبة البركة - تجارب مرضى استخدموا حبوب جيلينيا

منذ أكثر من شهر
وأنا أراسل مرضى مرضى حول العالم
ومعظمهم من أوروبا لمعرفة نتائج استخدام حبوب الجيلينيا
أرفق لحضراتكم ردهم على رسائلي
ولكنها باللغة الإنكليزية بحكم كونهم غير عرب
ووضعت خطاً بين كل رسالة وأخرى للتفرقة بينهم

In my case, that works well now. Of course, no relapse.

But I was suffered from side effect of Gilenya before.
After using it, my lymph cell was declining. At last the number of lymph cell had become 0.
So, my doctor advised me that stop taking it over a period of time. Probably it was a month.
Then my doctor changed my prescription. So now I take a pill once a week.

Hope you succeed !!

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I have ppms , So I have no relapses
This pill made me sick for a year
while I was on it.
I'm a bit better now

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Hi, I have stopped using Gilenya as it was not working for me. I have found reading the forums and asking people there for their experience had helped me a lot.

As I understand, medication does not work the same for everybody. It depends on the person taking it and how their body reacts to it.

It reacted badly with me as did Avonex injections. The reaction occurred straight away. However, this time I was able to recognize that the medication was not working this time and I stopped it after a week.

Gilenya is definitely convenient in that you only have to take a tablet and not injections.

You may want to consider taking it if Rebif is not working and you are still getting relapses.

The only medication that has worked for me is Tysabri. It has certainly stopped the relapses and even given my body an opportunity to repair the damage. But as it is quite dangerous, my neurologist made sure I had been off medication for 3 months before starting me on it again. I also tested negative for the JCV virus.

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I took Gilenya for almost 4 months. During that time I was put on 4 rounds of antibiotics for 3 different problems.
My liver numbers were really high, but I expected that with Gilenya.
I decided that I knew I would not comfortable taking a round of antibiotics for some new problem every month for the rest of my life so I stopped it.
I did not notice improvements in any area of my disability, but then I didn't take it for very long.
I'm back to Tysabri. Never used Rebif, I started with Copaxone when diagnosed.
I can't recommend Gilenya, nor can I not recommend it. It just didn't work out for me. That's the one thing I can always rely on with this disease: Its complete unreliability. You'll never know unless you try Soufi and it might work great for you.
Best wishes whatever you choose,

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I saw my neurologist yesterday and will go back onto Gilenya as advised. You had asked of this a few days ago.
I was also told there is a (two new) drugs coming on the market soon. I will be doing a case study on them when they hit the market in a month or two.
I did mention to him about you and he advised me to say that if you can get the chance to be on Gilenya, most surly do so.
The new trend is to follow the format of how Gilenya works. It blocks the lymph gland from excreting the wbc's from entering into the brain.
Hope I have helped you,

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I know how you feel, when the Doctors was telling me that I needed to start Gilenya I fought them tooth and nail. It's been over a year now and I can honestly tell you that I've have been happy with taking it. I had taken Copaxon and Avonex , but my body wasn't able to handle them, with Gilenya I haven't had to many side effects. At the start my stomache was a little upset, but that was all. I just have a low white blood cell count, but that is nomal. I feel that it has worked for me and others have seen a huge diffrents in me. I'm not going to tell you that I don't have my bad day, because I still do. It doesn't take away what is already there, but it has helped. I hope that this has aswered some of you question and if you have anymore feel free to ask more. I'm more than willing to help.

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Hi Soufi
I am only on trial for Gilenya i have foung it is very helpful, I haven't had any attacks please talk to your doctor about this Take care Paul

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I was on Gilenya for a little over a year and while I didn't have any side effects, it didn't work for me. I developed 6 new lesions during that time and I just got my first dose of Tysabri two days ago.

I didn't have a relapse while I was on it, but it obviously didn't do the trick.

I have also tried Extavia (interferon beta 1b) and that didn't work either. The good thing about Gilenya is that there are no needles. I hated giving myself a shot every other day. I don't mind the infusion of Tysabri as it's IV and done by a nurse at an infusion center once a month. It's supposed to have a better efficacy rate than Gilenya, so we will see.

Good luck in your attempt at Gilenya. The only way you can find out if it works for you is to try it. I don't regret giving it a try

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well the truth it has been working from me i haven't had a fare up in 10 month. this the longest i gone without having one. only thing being on gilenya is that i have to be checking your eyes, lung and blood, every 3months. honestly i saw this medicine has a small risk to it. also i am taking the pill every other day.

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So I don't have any experience with other meds... since my diagnose I've been taking Gilenya.... and I'm feeling pretty good with the treatment... i've been on for about 4 months now and I haven't have any relapses since....

I'm very happy with it because I don't have any side effect, and I don't have to pinch myself everyday.... but as I said... I don't have any other experience to compare to!

You have to monthly draw blood, but that is not a big deal for me, besides that... life feels pretty normal! I'm not sure how I can help you... all I can say that it works for me!

If I can help you with anything else let me know!
Best wishes

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I stopped taking Gilenya after having 3 exacerbations in less than 6 months. I felt like it just wasn't working and I had trouble regulating my heart beat while on it. I am now taking Rebif and have been free from further attacks since January.

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I had checked on your charts that you are relapsing/remitting. If I were you, having been given the chance to be on Gelenya, yes, I highly recommend it. There are virtually no side effects. Since I am progressive MS, I do not believe that any medicines can help me much anymore..
That point of view comes not only from me , but also the medical profession. I have hundreds of lesions and losing my legs once again. This time most surly for good. Most of the damage that will happen to me now is permanent.

For you, there is a great deal of hope. You may even see a cure in your lifetime. Not so for me. I welcome anything that comes my way with MS. I still see it as a divine blessing and character builder. MS still never wins the battle, I just have to face the facts. That's all.
I still consider myself the luckiest and happiest man ever. What MS takes away , is given back so much more, that is, in the realm of the soul.

Now about you; you have the rare chance of getting onto Gilenya. Very few do. By all means, go for it. I was in a study group, so the co-pay was waived for the first year. I hope for you that still applies. Otherwise it is $50.00 per month. Keep in mind, though, the benefits are greater than a monetary figure. Right now, it is the best thing on the market.
I am seeing my neurologist tomorrow (Friday) and will ask him for you what he thinks.
The whole concept of Gilenya differs from all those*&^#interferon drugs. It inhibits the white blood ceels from attacking the brain myelin sheath in a different way.

My hopes and prayers for you, and if I do not get back to you (very forgetful) send me another post so I can tell you what my doctor says.
I do not intend to continue Gilenya anymore. I figure I did my part to help research. That was the only reason I agreed to it anyway. Note: I have not had any major set-back while on the drug though.
Regards'

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I am not sure how it works for others this is something you have to decide on your own.. This is my story.
Good luck and God bless
Sue

http://chris-myjourneywithms.

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First of all what state do you live in? I have been on gilenya for 3 months now. I feel it working pretty good. I am walking better and feeling better. I have problems with my memory but I stay active physically and mentally. I was on Rebif and it didn't help me. Everyone is different. If you have more questions, feel free to write.

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I can't tell you to take or not take Gilenya. It is totally up to you and your doctor. All I can tell you is that it didn't work for me and was very expensive.

I recently found out that I no longer have relapsing-remitting form but am now secondary progressive. I don't really have "attacks" then get better, it's more like I slowly get worse without getting better.

Hope you can find a doctor that you like and trust so you can make an informed decision and feel comfortable with it.

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I will be glad to,I started Gilenya in April of 2010 after being on Betaseron,and copaxone injection that both failed me,since being on Gilenya have not had a flare up causing me to be put in the hospital in almost 3 years come Jan 2013. I would tell you yes to Gilenya,and I pray if you do decide to start it,that it does the same for you God bless you

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Everyone reacts differently to each medication. I know a couple people who are succeeding on Gllenya. I had a flare on Gilenya so my Doctor took me off it. I am now on a Rheumatoid Arthritis drug that they are using for MS patients who have failed on three or more mainstream MS drugs.

I wish I could be more of a help! I did not have any side effects while on Gilenya though!

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I am doing great on Gilenya . We are all different and some things work for some and some things don't. Since I have been on Gilenya(09/01/2011) I have not had any new things going on. I am also on Ampyra so I can't say for sure which one or is it the combination of both making me do so well. The doctors I have had in the past have been confusing to me also. I have found one now that is wonderful.
If you have any other questions please feel free to ask.I will answer as soon as I can.

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I was on Rebif before and I had too many bruises so my Dr and me talked then tried 2 more waiting for Gilenya (a pill not shots)to get on the market.

So far it is working, but you have to have your eyes, blood, MRI done first before they can start. If you have any heart problems I would really talk with the Dr first.

I haven't had any attacks though so yes it is working in my opinion.

Just remember the first pill you take you have to stay in the Dr.s office for 6 hours so that they can monitor your B/P to make sure there is no problems but it goes fast wasn't bad at all.

Also there is a another one on the market now with less side effects.

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I saw my neurologist yesterday and will go back onto Gilenya as advised. You had asked of this a few days ago.

I was also told there is a (two new) drugs coming on the market soon. I will be doing a case study on them when they hit the market in a month or two.

I did mention to him about you and he advised me to say that if you can get the chance to be on Gilenya, most surly do so.

The new trend is to follow the format of how Gilenya works. It blocks the lymph gland from excreting the wbc's from entering into the brain.

Hope I have helped you,