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Christoff
12th November 2015, 13:47
Hi There, is anyone else on Riluzole and have there been any side effects?

I was prescribed on 14th October 2015 and subsequently have been taking it twice a day and as far as I am aware I do not feel any different.

I went for the first of 3 monthly blood tests yesterday where the nurse stated that this particular drug is a high risk one!!

The consultant subscribed it to me and I have the utmost confidence in her so will continue to take until otherwise told.

John14
12th November 2015, 14:28
Hello Christoff,

Yes I am since about April 2015, I have not noticed any side effects, I've had two blood tests and my Liver readings were a bit higher than normal at first but have improved. I think it's a no brainer really Riluzole is shown to have a beneficial effect although only marginal. How are you getting on? I've noticed that since you got back from Turkey you've not posted anything very much I guess that means you've been busy doing other things.

John

Christoff
12th November 2015, 14:39
Hey John

Yes back at work full time so everything is really hectic not enough hours in the day really as one just blends into the other sometimes. It will be Xmas before we know it!!

mags55
12th November 2015, 15:26
Hi Christof
I have taken rilizole since diagnosed in June this year.
I feel no,different must it's supposed to slow progression by around three months.
To me, I think if everyone of us are different, how would they know? But I take it anyway.
Mags x

Terry
12th November 2015, 16:42
Hi Christof;

Don't worry too much, just make sure the liver and kidney function bloods are OK. Like a few other here, I've taken them for six years.

Love Terry

Dude
12th November 2015, 17:09
Hi Christoff I have take Riluziole since diagnosis in 08 and because I never came off it I had no benchmark to work from. I gave up taking Riluzole 6 weeks ago and have noticed I don't nap as much. Nobody knows how long it extends life by but would still reccomend new members taking it and then form their own opinion in due course. Dude.

kevin
12th November 2015, 18:44
just a bit of nothing . When i was on the drug trial there was lots of detail of how the drug would work if it was sucessfull . i asked how dose riluzole work . suprising answer not how we thought and we dont know

JAN Q
15th November 2015, 15:58
Hi ,I was prescribed rilozole 3 months ago too and have not noticed any improvement, but was told that it may only add few months to your life but not make you feel better. I went ahead with it anyway and two liver tests showed ok ,but this last couple weeks I have been feeling a little sickly and noticed change in bowel habits like tummy upset. Has anyone else had any side effects. X JAN Q.

Dude
15th November 2015, 16:58
Hi Jan Nobody knows what it adds to your life. I believe it is worth taking. I suffered no side effects over 7 years. Dude x

JAN Q
15th November 2015, 17:06
Thanks Dude, I am just a bit down at moment, beginning to deteriorate a lot with my mobility,weakness and speech,it's all happening together it seems, then started to feel this sickly feeling and tummy upset just don't seem to be coping as well as I have been. X JAN Q.

Dude
15th November 2015, 17:31
Hi Jan I too, have been at my lowest ebb since diagnosis, had problems with flu & pneumonia jabs and meds change and family and work. It's just a phase, be ok tomorrow. Dude x

Candle
15th November 2015, 20:34
Jan. Mum had a similar spell to what you describe - most meds seemed to disagree with her. On the brighter side they did all pass. Fingers crossed for you that this spell passes quickly and you're feeling better soon.

JAN Q
16th November 2015, 10:31
Hi Candle, thanks for your reply, I hope that it is not the drugs because as I am deteriorating rapidly I was hoping that they would slow it down a little. I have lost the ability to walk now and my speech is deteriorating fast along with dexterity in my hands, I am still trying to cope on my own though with just a little domestic help twice a week. Was very down over weekend shouldn't be I know but actually feeling bit sorry for myself, picked up a bit today as I slept better, that always seems to help, nice of you to reply it certainly helps to chat. Kindest regards Jan Q. X

Terry
16th November 2015, 10:51
Hi Jan;

Sleep is so important and makes us all feel so much better but is not easy for us to get.

Most medications affect me, any relaxants, antibiotics and pain killers seem to make my mobility worst. I do still like always take riluzole.

Do you get advice from anyone like a hospice etc. You might be able to get more help.

Love Terry

JAN Q
16th November 2015, 11:31
Hi Terry, I will carry on with the rilozole ,only other drug I take is carbocistein to help with the mucus, still trying to get the dose right with that. I do have contact with my local hospice, am having visit today from nurse and then they have arranged for me to visit the day centre there on Wednesday, all new to me but feel the time is right now. Thanks for chat it all helps , X love Jan Q.

JAN Q
17th November 2015, 07:57
Hi Terry, I will carry on with the rilozole ,only other drug I take is carbocistein to help with the mucus, still trying to get the dose right with that. I do have contact with my local hospice, am having visit today from nurse and then they have arranged for me to visit the day centre there on Wednesday, all new to me but feel the time is right now. Thanks for chat it all helps , X love Jan Q.

Hi Terry nurse came yesterday and we discussed mucus problem again, she mentioned trying patches which dry it up,my sleeping is being disturbed just with having to remove mucus during night, do you know anything about these patches? X JAN Q.

Ellie
17th November 2015, 11:59
Hi Jan,

The patches are probably Hyoscine, a drug that reduces saliva production but I don't know how effective it'd be for mucus.

Ask the nurse about a suction machine which will clear the mucus, the hospice probably has one. And there are things you can do to lessen the production of mucus, which I'm sure you already know! Ensure you get lots of fluids and avoid too much dairy foods.

Sipping pineapple juice, hot lemon tea or cold fizzy drinks can help thin the mucus, while some people find an anti-allergen medicine, such as Zyrtec, effective.(ask GP/nurse first)

Take care,
Ellie x.

JAN Q
17th November 2015, 16:37
Hi Ellie,thanks for your reply,yes it was hyocine now you have said it,I couldn't remember the name,but will speak to her again on Thursday she thought it may help although she said it does dry you up. I don't know of anything I can do to lessen the mucus have just been told it is part and parcel of the disease. I'm still not sure the carbocistein helps me it seems to make more mucus after i have taken it. Just trying what is recommended. X Jan Q.

Candle
17th November 2015, 17:32
Ray provided threads on how to prevent and treat mucus. Search Fishmate 12 on this forum. RIP Ray

Dude
17th November 2015, 19:18
http://www.boots.com/en/NeilMed-Sinus-Rinse-Kit_121768/

I've had thick mucus, caused by post nasal drip for a long time.
I've recently had great success with a 3 pronged attack consisting
of above irrigation kit, nebuliser and full fat Coke (Thanks Steve).
On a scale of 1 to 10. 8 being before and 3 being now. Dude

JAN Q
20th November 2015, 07:41
Hi Dude, the sinus irrigation sounds very interesting as I have suffered post nasal drip for years Will consider trying this as can't seem to control this mucus problem yet , thanks as always for information on this site .more than from anyone at moment. X JAN Q.

Dude
20th November 2015, 10:32
Another important thing to mention is oral hygiene. Brush teeth 3 times per day. I have
a top denture with a few teeth on (rugby) and I keep on my desk if nobody about. lol Dude x

JAY TEE
21st November 2015, 22:58
Hi all been on riluzole since formal diagnosis in May 2014. Blood tests been ok. Do feel a bit drowsy and have a cat nap most days. My mobility and speech have reduced a bit. Still manage to walk around the house with Zimmer frame.

Dude
22nd November 2015, 08:03
Cat naps are good JT. Have you considered a rollator with seat on. They are good cos you can sit down when you get tired like waiting for a bus etc. Have you got, or planned for when you can't walk, downstairs wetroom & bedroom. Dude

Terry
22nd November 2015, 09:59
Hi Jay;

A rollator is generally better than a zimmer but does need a bit more room. Not all Mnd people lose the ability to walk but most do.

Love Terry

Barry52
22nd November 2015, 10:47
I was glad of my rollator yesterday at our daughter's graduation ceremony. There was a lot of hanging around but I had my mobile seat and it also secured us front row seats.

Barry

GrannieAnnie
22nd November 2015, 12:32
What a lovely day you must have had. Graduation Days are one proud moment for us parents and how nice to have a front row seat. Congratulations all round. Ann

John14
22nd November 2015, 13:39
I've memories of my daughter's graduation at Cambridge, after the ceremony we went for a meal and bumped into Rory McGrath who was very amusing. And to Sheffield for my son's graduation during a heat wave. That's were I met my wife, when we were both at Uni so many happy memories. Must look into a Rollator can you get them for nothing from OT or do you need to buy them on E Bay, are you comfortable with image?

At the moment I'm with a stick which I think looks quite distinguished somehow. Anyway happy days & congratulations!

Cheers,

John x

Barry52
22nd November 2015, 13:53
Thanks Ann. All three of our children graduated. Our son conventionally via uni post school but the 2 girls did it the hard way whilst still working and raising family. My next challenge is to see the grandchildren graduate. Only another 8 years to keep going.

John,
The local MNDA branch paid for mine but the OT can apply on your behalf. I am very comfortable with the image as it is the Ferrari of rollators. 0-60 paces in about 10 minutes lol. Good luck with your application.

Barry

Terry
22nd November 2015, 17:19
Rollators are great if you have a self service restaurant or to put drinks on whilst moving back to your seat. I have a plain old OT model but you're right, there are some very stylish models.

Love Terry

Capri
10th February 2016, 17:55
hi dude I started it yesterday and feel awful all my joints hurt don't know ifits the cause, maybe! why did you stop please?

Dude
10th February 2016, 18:07
Hi Capri I stopped after 7 years. 2 reason, getting difficult to swallow and to see if it reduced napping - it didn't. Stick with it is my unmedical advice. Google side effects,. Dude.

GrannieAnnie
10th February 2016, 18:21
Dude apparently it has just been produced in liquid form, however my GP couldn't find it on her website. Ann

Dude
10th February 2016, 18:54
http://www.mims.co.uk/als-treatment-available-liquid-formulation/neurology/article/1373701

Hi GA I did hear it was going to be available in liquid, also Neuro said I could break tablet up. I may restart it again. Dude x

Terry
10th February 2016, 19:23
Hi Capri;

I would think that is too soon to have a reaction and would perhaps try it for a bit longer. But if you are concerned have a word with your GP and consider stopping it for two weeks and then try again.

I thought that the liquid Riluzole has been available for a couple of years.

Here are some details from Dude's link:-

ALS (Mnd) treatment now available in liquid formulation manufactures are Martindale Pharmaceuticals
Teglutik is a new liquid formulation of riluzole that can be prescribed to extend life or the time to mechanical ventilation for patients with amyotrophic lateral sclerosis.

Love Terry

Susan
10th February 2016, 20:03
I delayed starting until my mother had been to stay in case I had side effects. It turned out I don't! Then I assumed the blood test would bring bad news. It didn't. So I seem to be fine taking it. It does seem really quick to have aching joints though. I would read the leaflet in the pack and see what it says about possible side effects. I assumed sickness and things rather than joint problems.

I had no idea there was a liquid form either but when I was given it I was told that if it gets hard to swallow it could be crushed and mixed with a teaspoon of yogurt and then taken quickly. A liquid form would definitely be easier though.

Luckily I can swallow it at the moment anyway. Good Luck with taking it Capri.

Dvd
10th February 2016, 20:34
Hi Capri .. My friend is going into his 3rd month on Riuzole with no side effects and his bloods ( LFT and FBC ) are fine .. dvd

GrannieAnnie
11th February 2016, 01:08
Hi, I've been on it now for two and a half years and have no side effects that I know if. I had the regular bloods taken and all has been well. I really do think it helps with everyday living. However one would never know for sure unless one stopped taking it and I am never going to risk it.

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