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Medication advice please

Hello everyone hope you are coping with the heat.

About a year ago my MS Nurse recommended meds for tingling, buzzing, uncomfortable arms, hands and legs. I have resisted starting them but now feel I need to try something. She suggested Amitriptyline 10 mg increasing at four weekly intervals to 30mg subject to response and tolerance or Gabapentin starting at 300mg once daily increasing by 300mg weekly until I am on 300mg three times daily. Other alternatives include Pregabalin or Carbamazepine.

Can anyone tell me of their experience using these Meds also I am going on holiday at towards the end of August for two weeks should I hold off starting them till I return from holiday.

The meds i do take are Baclofen and Propranalol.

Thanks

Jan x

Hi Jan

With regard to the heat, I am struggling and so want it to cool, sorry to those who are enjoying it.

Strangely enough I take the same as you, baclofen for spasms and stiffness, and propranalol for tremor and high blood pressure. I also take amitriptyline for pain, burning, vibrating and jerks etc and find it helps.

I don’t tolerate meds very well, but started on a very low dose and increased very gradually. I find it best to take it about 7pm, so that it wears off for the morning. Any later than that I feel like a zombie mornings. The only thing I find with it, is that it gives me a dry mouth, so am always drinking water, but other than that, I am happy with it.

Hope this helps somewhat, and whatever you decide, I wish you all the best, and hope you have a lovely holiday.

Pam x

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Thanks For replying its a massive help.

Will I only have to take Amitriptyline once a day? I take the Baclofen twice, second one at about 7.00pm so would fit in if I took it the same way you do.

What do you think about waiting till after my holiday? or is that just me holding off a little bit longer…

I also struggle with the heat, I coped on holiday last year by spending most of my time sat in the pool. I’m not giving up my holidays till I have to!

Jan x

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Hi Jan

I have been told I can take mornings as well, but that makes me too sleepy, so I keep to taking at night.

As your holiday is still a few weeks away, you could try it, by that time you would know if it is helping or not, but I know exactly what you mean about putting trying new medication off till later.

If you decide to go ahead before your holiday, let us know how it goes.

Pam x

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I will Pam and thanks again for your input.

I have a phone appointment with GP on Tuesday, unfortunately she is new but I have faith.

Jan x

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Hi Jan

I take both Amitriptyline and Gabapentin. The Gabapentin I take three times a day and the amitriptyline is only at night. I take them both for nerve pain and they do help. Both drugs are started on a low dose and increased gradually to a level that works for you. I did feel very drowsy in the beginning and with each change in dosage but that was preferable to suffering as I had been doing. I would decide whether you’d rather be a bit drowsy during your holiday but get treatment started and hopefully symptoms under control or wait until later. Only you can make that decision.

Like Pam I take my Amitriptyline at 7pm so I can get up in the morning without feeling hung over, but as you know, we’re all different in our tolerance, symptoms, and lives so what suits us might not work for you. I do find that this drug helps me sleep, both to doze off and stay asleep and it can be used as an anti depressant and feel that it could be helping me cope with this illness too. The fact that I sleep well can only be positive for my mood so I’m happy to remain on it.

Please let us know what you decide and how you get on and if you need any more info just give us a shout.

Cath xx

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I had that dry mouth VERY DRY MOUTH my MS nurse said chew gum and I did and it worked stopped me drinking gallons and gallons and still having a dry mouth

Don

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I’m leaning towards the Amitriptyline and it’s a bonus if I can get away with taking it once a day. My memory is shocking I have to set the alarm on my phone to remind me when my next dose of meds are due!

I have no problem sleeping in fact I sleep too much so that could be a problem if it makes me sleep even more. Does Gabapentin also make you drowsy?

Maybe I’ll wake in 100 years to Prince Charming presenting me with a cure

Thanks for taking the time to reply.

Jan x

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Thanks Don about the tip using chewing gum, I will try that, but will have to be discreet, due to the amount of times I have moaned at my grandchildren for doing it.

It will have to be a case to “do what I say” and not “do as I do” lol

Pam x

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Hi Jan,

I tried amytriptaline and unfortunately it didn’t help me at all, I now take gabapentin which I adjust to my needs, I take it daily for nerve pain but up the dose if I start having too much itching or burning. I was also once given Carbamazepine for sensory skin problems, when they became particularly bad. I now take LDN which has helped quite a lot with skin problems as well as bowel and bladder.

Gabapentin does make some people sleepy, but not me! I would have thought that whichever you and your GP decide on you will know in a week or so if it doesn’t suit you and it would be so good for you to be free of those problems for your holiday

Be good to know how you get on but in the meantime, have a great holiday!

Nina x

Hi Jan

I take gabapentin , 200mg three times daily, which is a light dose but just about works for me. I take them first once I’m up and dressed and downstairs maybe 10am or so. Not sooner while I’m still in bed- I’d never get up then!

second, around 5pm when I’m well awake from any afternoon nap.

third at bedtime, to help me get to sleep.

So it does make me a bit drowsy, but it’s not unpleasant, and I can override it if I need to. It does work for the nerve pain. If I find my legs are burning in the early evening it’s usually a reminder that I haven’t taken them. But still sometimes they burn anyway and I have to ride it out.

Kev x

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When I was doing chemo I was given some nice little lozenges which helped the dry mouth. I can’t remember what they were called, but will try to find out.

Frozen fruit drink ice lolly things were good, too. You know the ones in the pyramid packaging? Can’t remember their name either.

not much help really, am I?

K x

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Jan I was one of those feeble people who got drunk on 2 glasses of wine, fell asleep on 2 paracetamol and hallucinated on cough syrup so had no tolerance to any drugs but now I take Gabapentin 1200mg three times a day and amitriptyline 50mg at night along with loads of other drugs including morphine and even my Neuro was surprised when he met me at how awake and alert I am, writing to DVLA telling them he thought I was capable of driving. All the drugs made me drowsy at first but as he said, I obviously need them and function as well as most other ms patients with the usual brain fog etc.

The body is an amazing thing and will cope with meds etc if they’re needed. I hate my dependence on drugs but my quality of life has improved so much that it’s worth it. I must admit that I don’t drive if I’ve had my morphine syrup or at night after my Amitriptyline as they both affect my concentration and make me drowsy but I’m usually fine through the day.

I do believe that you have to decide whether the drugs will alter your quality of life, I was in agony and couldn’t function until my pain was controlled but everyone’s different, I have a spinal cord injury in my neck which severely restricted movement and caused a lot of discomfort and neurological symptoms. There’s no harm in trying to improve your symptoms, you aren’t making a decision that can’t be stopped or altered.

Take care and let us know what you decide to do please.

Cath xx

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I can picture the ones you mean and can’t remember what they’re called. As an alternative, you could try Calippo? They come in various flavours. There is also a Ribena vesion - similar shape but very obviously the Ribena brand! They are also frozen fruit drink - Ribena, unsurprisinly, blackcurrant flavour, Callipos come in various flavours, orange is the one I like best.

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Thank you all for your comments, they are all very helpful. Sometimes I overthink things and something easy ends up difficult.

I will let you know what i decide after phone appointment at lunchtime and keep you updated as to how I progress.

Its going to be another hot one so keep the fans turned up high.

Jan x

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Decision make, starting Amitriptyline tonight 10mg once daily. Assuming I don’t have any adverse reactions I will stay on 10mg till after my holiday. GP thinks I should be used to them by then and any grogginess should have gone.

I’m such a wuss where medication is concerned, thanks for listening.

Jan x

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Good for you Jan, and you definitely are not a wuss, I think sometimes most of us have pondered over taking more medication, I for one have.

Hope it all goes well and helps you to enjoy your holiday even more.

Pam x

PS take it early on, not at bedtime.

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I agree with Pam… I take mine at 6.30pm (moblie alarm goes off) otherwise I’m a zombie next morning.

Pat x

Planning on 7.30 same time as I take Baclofen…except directions say tell Doc or Pharmacist if you take Baclofen!

I’m taking it regardless they both know what I take so I imagine they have both discounted any problems.

Jan x

PS as does my MS nurse who recommended it…loving the edit button. x

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Hi Jan,

when I used to take baclofen I did try amytrytaline for a while, had no ill effects taking the both together.

good luck,

nina x

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