[SURVEY] What medication are you taking and for what symptoms?

[rolo]

I am on amtrpiline 25mg just had dosage changed was on 10mg but did not work very well sleep great now take ibuprofen 400mg for pain found if i take amtripiline at 7.30pm i am ready for bed at 10.30 and i wake at 7.30am after a relatively good night.

[mayb]

It is such a relief when you find a system that works for you isn't it rolo. I found that upping my gabapentin at night helped me to break the cycle of sleepless nights. Now a day with my grandchildren is all I need if I want to become unconscious as soon as I lie down!!

[anna derbyshire]

I know this is a very old post, but I just thought i'd stick in my 2 pennies worth!

 

I currently take:

 

Avonex (just started)

Pregabalin - for leg pain.

Tramadol - also for leg pain

senna - for the obvious!

cod liver oil

vitamin B12

omega 3, 6 & 9

 

also, am about to have a blood test to possibly start taking high dose vitamin D...

 

None of it seems to be doing me any good really!

 

Anna x

[linds]

Just started to take Lecithin hopefully to aid the fatty acid in the myelin sheath - and it suposed to be for lowering cholesterol. Lindsx

[zara]

Hey guys, nobody has mentioned Amitriptillin. I've been told it's all that I can take for the MS. It just helps with the pain. I'm suppoed to be taking 75mg but I only take 50mg as at 100mg it works as an antidepressant. I have some friends who say they get worse once they've stopped their antidepressants.

 

I've heard a lot of people use weed, I tired a little bit while my friend was smoking some, I've never ever tried it before so was worried it might make me worse. I was ok, just had a few puffs but as I was with this particular group of friends for nearly two weeks I'd have a little bit a few times a day. This completely took away my symptoms like twitching and jerky movements. I have stopped now though as it's bad for you even if you are 100% healthy and if I have MS I should be very careful. I don't drink or smoke anymore so why replace all that with weed?

 

Anyway, for the past week my twitches have gotten worse. The movements were quite obvious to others around me but this felt more than embarassing. I'm getting back to how I was but I would suggest to people not to try these things. I did enjoy the buzz he he but it only makes you less aware of things around you anyway and with my concentration and memory already affected, I don't want to make that worse. Other than that I have a pretty healthy diet and once I get a bit of strenght I'm going to try cooking fish, it's supposed to be really good for the MS.

 

Thank You everyone for your time

[mayb]

Hi Zara - I think that there is and will be other forms of hash that can be prescribed quite safely and legitimately if the need arises but it perhaps should be reserved for a time when real pain and debilitation becomes a way of life without it.

 

Having said that I do think I would prefer to leave drugs, whether prescribed or not, out of the equation if possible and explore all alternatives that are out there including hands on healing, which has helped me enormously.

 

Hand on heart I know I would use hash if nothing would work as well (as it does work very well for ms symptoms) as I believe that whether drugs are legitimate or not they all have side effects and some are far worse in this respect than hash and more addictive too.

 

I wonder why you have been told that amytryptyline is all you can take for ms as this is far from true. I take it in very low doses to see me through the night but I have other drugs I take as well and I don't have a diagnosis. If you are having problems maybe you should discuss this with your doctor/neuro again.

 

 

Interested in the leicithin linds - is that self prescribed and how exactly do you take it. I understand that is a derivitave from milk or am i barking up hte wrong tree. oops typing up the ssoout again I see.

[Ironie]

At present I take Betaferon.

From September on I'll take part in a clinical trial

at the Charit

[ptlike]

Hi Well I take oxbutynin and anti biotics bladder kidneys. citalopram mood, starflower trying it, oh and rebiff injections. Do they work erm I dunno. I do realise if I have many more blood test and other injections I wont hold water lol. Amazed some of you get diazipan you need a gun here to be prescribed it. Oh and tried baclofen tizanipan and dantrolene they either did nothing, I had to weld my bum to toilet seat or I just felt I could nothing. Oh have botox 3 monthly in legs and yes works well and wrinkle free young legs lol

 

Take care

 

Peter

[RNatHeart]

What medication are you taking and for what symptoms?

 

 

Let me first say I'm in the USA. .

I am taking Gabapentin/Neurontin 3/300mg cap 3 times a day =2700mg/day everyday, I would be in bed or a nursing home @ 39 y o without. It allows my unbearable pain & burning, to become bearable when I move. . . And I have a high pain tolarance. It also controls my spasms.

 

Rebif inj. since 4/09, 3 times a week. Delay any future disability. It's said (in the insert that comes with rebif) that you may not notice a change, until after your first year of taking it. . .

 

Trazadone 50mg one every night for sleep. .

 

And a fever reducer for the flu-like symptoms brought on by the Rebif. . .

 

I don't want to assume that anyone knows, so I will share this. . . Doctors have found that some medications made for one thing, will actually work great for others. .

 

Gabapentin/Neurontin used to prevent seizures, work also in patients with MS to help with nerve pain

 

Trazadone used to treat depression, works also for sleeplessness

 

Hope this helps

[polly]

Hi Marina

I am very new to this ms forum hope i am doing

it correctly. I have just recieved my first dosage of LDN.How

has this worked for you i have had prog ms for 14 years but

the last six months have been bad.So i am going to try the

LDN but i am quite worried about it.

Hope to hear from you Pauline (Polly)

[Marina]

Hi Pauline and welcome to our forum

 

You'd be best to ask questions about LDN in our LDN discussion area here:

http://ms-people.com/forum/index.php?showforum=101

as this topic is simply for people to say what medications they're on rather than for questions about medications

 

Re LDN for me personally, you can see my (and those of others) LDN "diary" here:

http://ms-people.com/forum/index.php?showforum=99

 

I hope this helps and that you will find our forum of some help and support to you

[Oops]

My post on here is waaaay out of date - hell, they actually thought I'd had a relapse in those days - so here's what I'm on now:

 

Fluoxetine - Depression (caused organically by the MS) and to help with fatigue. 20mg of a morning.

Paracetamol - At least twice a day, usually three times, occasionally four. Just to take the edge of stuff because I can't work on my other meds (long distance lorry driver).

Contraceptive Pill (Logynon) - Because all the other stuff is pretty toxic, so it'd be best not to have an "accident". I also find my symptoms are worse before my period, and my natural cycle is only 3 weeks, so it's good to stretch things out a bit!

Gabapentin - 600mg at night. Tried taking it during the day but it did too good a job and knocked out the spasticity that was holding me up, so we binned that idea for the time being. The "hangover effect" is just enough to make the days bearable, and at least my pain is good and low when it's time to sleep.

Baclofen - 10mg at night, for the same reasons as above. Mainly deals with spasticity in my legs, but now my hands are cramping more, too, so will be looking at a small daytime dose as well in the near future. Binned the ibuprofen when I started on this, as you can't take the two together.

Tramadol - 100mg at night. Bog standard pain relief.

Tolteradine - 2mg at night for nocturia.

 

No DMDs as I'm PPMS, and not convinced by LDN (especially in conjunction with Tramadol). Just physio and sleep rationing (to keep to good sleep hygiene and minimise fatigue) to help with what the meds can't.

[madderbat]

Hi all,

I'm a bit wary of resurrecting too many old threads, but thought I'd join in on this one to give you all some idea of where I'm at.

 

Prescribed I take

2.5mg oxybutinin up to 3x day to help with bladder control

25mg Nortiptyline 1 or 2 at night to help me sleep and with neuropathic pain

8/500mg cocodomol up to 8 a day for general pain

 

lipitor 10mg 1xday (cholesterol)

aspirin75mg 1xday (blood thinner)

persantiin retard (which I think is a blood thinner) 200mg 2xday

 

I also take

glucosamine 1500mgxday for joint pains (really notice it if I miss them for a day or two)

Cod Liver Oil 500mg (for Omega 3&6 and Vit D)

I also eat seeds and sunflower spread for omega 3&6

 

The oxybutinin, nortriptyline and cocodomal do help, but the cocod's cause constipation. I try to only have 2 doses a day of them.

 

I am highly dubious about the other three as some of the side-effects are muscle weakness/aches etc and I'm not convinced that the tia's I had were not MS connected as they couldn't find any reason for them at all.

I have become a 'good little patient' and take them all regularly now though LOL

[Michelle]

I personally stopped taking the statin that I was taking,and a blood thinner that they gave me at stroke clinnic.

 

No.1 the Statin was giving me bad headaches.

 

No 2 The other med was lowering my blood pressure to much, and causing me to feel dizzy all the time.

 

My g.p was more than helpful with this decision,and agreed that the meds were causing me too many problems. Not sure what stroke clinic are going to say,esp when they are not sure whether I have had tia's,or not

 

Regards

 

 

Michelle

[madderbat]

It's interesting to read that Michelle, good to know my 'definite' strokes might not have been, and that it's happened to someone else.

 

I've done a lot of reading about hormones in my time along the way, and have thyroid antibodies which are also autoimmune, along wih excema, and a thickened womb lining.

 

I'm beginning to wonder about an autoimmune/hormone (possible pituitary) connection, but who knows.

 

Now that I've got a decent gp I'll talk to her about the statins etc because I've never been happy about them. My previous gp was the practice senior and I know they get points for prizes for ticking boxes and putting folks on these things, so it was a no-brainer talking to her.

[Suzanne016]

I'm taking loads of medication I don't how I continue to function but some how I do

 

Here is my list:-

 

Gabapentin 3,600mg a day that's 1,200mg 3 times a day,

MST 40mg twice a day,

Amitriptiline 50mg at night,

metroclopramide 10mg 3 times a day,

Baclofen 10mg 3 times a day,

Loratadine 10mg once a day,

Paracetamol when needed.

 

I've also had two epidurals for back pain but hasn't made much difference.

I'm surprised I'm not asleep all time or

[mayb]

That is a fair old list you have there! I am sorry to hear that you have to live with pain. You would think with so many medications to chose from something would have been found to help. When I had severe pain I was given Tramadol and it was the only thing that worked. Trouble was it sent me doolally. I am fortunate not to be experiencing that sort of pain anymore and have stopped taking this.

 

In order to deal with burning sensations and other interfering nerve messages and pain I was on Neurontin (Gabapentin) at 2100 per day for quite some time, I have been told that I should try to cut this down as I would have had all benefits from that. Not sure what that meant but have cut down to 1500 with out experiencing anything too difficult to ignore. Balance is a big problem at times. I take up to 20mg amytriptylin at night - to help me sleep and deal with need to visit the loo too often in the night and 40 mg Sertraline during the day for general depression. I have Co-codamol from the GP for anything not covered by the rest but find I rarely need it lately.

 

I now attend a pain clinic and have to say that it has helped me a lot as nobody is particularly interested in why it hurts but they seek ways to help you cope with pain and find things that help you. Any chance you could go ask to be referred to something like that?

[Suzanne016]

Hi May, thanks for your advice but I am already under pain team it is the pain team that has put meon all this medication.

 

Thank you

[kooky]

BuTrans....for pain ( though I think my body is used to it now and its not that effective)

Diclofenac....for pain ( think it's the only pain relief that actually works)

Paracetamol....for pain ( just tops up when I need extra pain relief)

Alfacalcidol.....for low Vit D ( when I remember to take it.....got about an hours sunshine yesterday so thats probably boosted my levels !!!!)

Amitriptyline.....for pain ( though works more as a sleeping tab !)

 

All this is for ME ( not diagnosed MS....... yet !!)

[Marina]

Sorry everyone - this topic is intended purely for listing the medications we take, a bit like a poll, rather than for discussion of all the various medications and treatments.

 

If anybody has questions about any particular medications or treatments, would you please, pretty please, start a new topic on it

 

I'll therefore split into new topics those newer replies which aren't listing meds but are asking about them.

 

Thank you!

 

=====================================

 

The posts moved from here can now be found in the following topics:

 

Why stop Avonex if you took it?, And what DMD are you taking now?

http://ms-people.com/forum/index.php?showtopic=10075

 

Has anyone tried Chiropractic adjustments?

http://ms-people.com/forum/index.php?showtopic=10073

 

Meds for ME or for Fibromyalgia?

http://ms-people.com/forum/index.php?showtopic=10074

Edited 13 Apr 2010, 11:43 am by Marina
Added links to moved posts

[Gypsy-girl]

Tis my wife that has MS, but she takes:

fluoxetine

gabapentin

4.5LDN

Sorry but just reading the lists Im amazed that not many on LDN, this turned my wifes life around. It has stopped progression, plus extra benefits, sleeps 8/9 hours a night without jumping out for loo every half hour, nearly all fatigue has gone, not tired during daytime & she feels so much better. been on LDN nearly 3 years now & gets it on NHS for free.

 

 

Hi There,

 

I got DX in 2006 and have only just found out about LDN. I have been on Avonex for almost 4yrs and have just stopped it in favour of the LDN. I get my healthcare in Gibraltar, so I have to get the LDN privatly as they won't prescribe it for me!!!

 

I am the same, I can't believe how few people are on this treatment! It's a no brainer!

 

I hope you wife is stil doing well?

 

Take care, Karen

[baward]

Bit late on this one, but I'll jump in so to speak. I take the following:

 

Pregabalin (Lyrica) - 600-900mg at night time (intense neuropathic pain/peripheral neuropathy/cramps in my lower half)

Carbamazepine - 400mg at night time (ditto)

Quinine Sulphate - 400mg at night time (ditto)

Fluoxetine (Prozac) - 20mg in the morning (mood stabiliser)

Vitamin B12 - 20mg in the morning (general MS help)

Ibuprofen - 400mg as and when

 

To be honest, I'm not quite sure if/how any of them help me lol! As a result I am continually monitoring myself to see any positive/negative effects and feeding back to my lovely GP and my new neuro nurse and the new physio. The pain meds knock me out and help me sleep though, which is great.

 

As some will know, neuropathic pain/peripheral neuropathy are very hard to treat (some medicos have told me THE hardest thing) but I have recently joined the Neuropathy Trust website, which is great and I am going to give it a shameless plug : http://neurocentre.com

 

Ben

[Bernadette]

I'm not taking anything.

 

I'd consider LDN if I could get it, but I'm not motivated enough to leap through the relevant hoops at the moment.

 

Edit to add: I do have one or two cups of tea each day with a sprinkling of turmeric in, and I'm no worse for it!

Edited 22 Jul 2010, 7:32 pm by Bernadette

[baward]

Edit to add: I do have one or two cups of tea each day with a sprinkling of turmeric in, and I'm no worse for it!

 

Mmmmmm tea (said in a Homer Simpson voice) lol

 

Ben

[mustard]

I'm still in limbo land, but am just about to go and collect my first prescription of pregabalin for the pain between my shoulder blades (which is where the lesions are on my spine).

 

I was also discharged from the hospital with thiamine (vitamin B) which the doctor told me yesterday i didn't need to be on because my levels where fine when they took my bloods in July (so no idea why they gave me it in the first place really)

 

The GP also gave me diclofenac for pain but it hasn't really helped, hence why they are trying the pregabalin.