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hands up who cant cope with MS medications

or is it just me, that cant cope and even coming off them ain’t fun.

trish

Hi Trisha,

Do you mean just DMDs, or symptom relief as well?

I’m not on any DMDs, so can’t comment. But re the symptom relief, I cope well enough physically, in the sense I’ve not had a really horrendous reaction to anything, BUT my life is getting very complicated, with so many medications.

Organisation has never really been my strong point, so I’m finding it tough with so many different medications (I can count eight, at the moment), all running out at different times, and having to keep a constant eye, to see if I’m getting low on anything, and remember to re-order.

By and large, I do remember to take them, although there has been the occasional time I couldn’t remember if I’d taken them or not. Don’t want to risk accidentally taking two lots, so if in doubt, have to wait to see if my body starts moaning about anything, as that usually confirms I’ve missed a tablet!

I do worry that if I get any significant cognitive symptoms - other than forgetting the odd word - I will no longer be able to manage my own meds, as at the moment, every so often I have to sit down and do a stock take of everything I’ve got, as that is the only way to find out what needs re-ordering. As more and more gets added to the list, it becomes increasingly complex to manage, and I am more at risk of overlooking something - some of which can’t be stopped suddenly!

Tina

x

Hi Trish

I’ll be holding my hands up to this one I’m SP so not on any dmd’s and haven’t been for well over 15 yrs I was having more relapses on them than off think I’ve tried every drug on the market to relieve the symptoms I have with no joy, both my MS nurse and my GP have come to the conclusion that I’m drug intollerant. Oh the joys!!

Sue

Tina

Im PPMS, pain had got bad recently so thought i would try the pain relief meds again, will not go near the spermatic ones now as they actually made me fall, didn’t need the help of MS.

Saying that i believe the pain is due to me hurting my Sciatica nerve, so have an appointment in the new year to see the physio as this has been going on for months now.But just wanted to see if it is just me who is med intolerant.

trish

Hi, I stopped my DMD’s .as well I was so ill on them, I have lots of symtoms but take magnesium for leg spasms which as made sure a different I can now sleep at night and the leg pain is very low.

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I’m on 9 lot’s of medication a day for various things and I am sick of taking them I use a dosett box now because I am so forgetful

xx

So I’m on a load of pills to keep the heart condition at bay, and aload of Gabapentin each day to keep the neuropathic pain in its place, and the prospect of something quite soon to keep the bladder in line, and I gave up Copaxone in May.

So far I have not noticed any real difference from the last.

Geoff

yes, help help help! can’t cope with timetables, meds ar anything like it … my mind is like a tea strainer, everything is labelled, but where did I put it ???

I often couldn’t remember if I’d taken a dose of pills or not, so bought myself a small diary to enter the time of each drug as I took it. Foolproof I thought, if I can’t remember if I’ve taken the five o’clock pills, I just consult the diary; if there’s no entry, then I didn’t take them.

…or did I take them and forget to write it down?

Bloody MS!

I now count out the right number of pills each morning to last the day, it really does work better that way.

As for side-effects, well yes, I’ve stopped three drugs because of them; however, my doc usually has an alternative up his sleeve.

Ben

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I have always (so far) tolerated all sorts of meds pretty well, but that is sheer good luck, and I just hope that my luck holds!

Sorry to hear that you are having difficulties.

Alison

I know that feeling so well!

That is such a good idea - thank you. Just keeping it simple.

Alison

l am sure you can get the pharmacy to sort out your meds - put them into a box where they are arranged for different times of the day. And you can ask for them to be delivered. l re-order my meds via Patient Access - online. lt is a good system - now l have learnt how to use it. You can see all the meds you have had - and just tick the box next to what you need to order. The prescription is sent to the pharmacy for collecting or delivering.

Ask at your pharmacy for help.

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Not sure if you were responding to me or the OP.

If to me, then the pharmacy couldn’t “sort out” a you-know-what in a brewery. They are definitely part of the problem, not the solution. If it was left to them, I’d be left forgotten, out of meds, crying and unable to walk.

This is the second lot I’ve tried - they’re all as useless as each other.

My previous pharmacy was Boots. I put up with the mistakes for quite some time - things being ordered that weren’t due or wanted - but more seriously, things NOT being ordered that were needed, and outright lying about when I’d put in the request. I was already noting things down in a diary, but was getting to the point I was seriously thinking of recording telephone conversations, so I’d have an exact record they’d be unable to deny!

But the final straw came when they tried to palm me off with a total stranger’s meds, claiming I lived with him, and had agreed to collect them! When I denied it, they acted as if the mistake couldn’t possibly be at their end, and I must have mental health issues.

I am occasionally absent-minded, even eccentric, but there’s no way I could possibly have agreed to collect a complete stranger’s meds - not even by some very bizarre and unlikely chain of misunderstandings. My usual reaction to such things is to apologise and say I’m sure it must have been my fault, but I tried and tried to think of some plausible scenario whereby I might “accidentally” have agreed to pick up a stranger’s meds, but there just isn’t one! If he’d shared the same surname or even been living in the same street, it might have been more understandable, but there was no connection at all between us.

I’ve always wondered if they were urgent medicines, and if he ever got them, since the pharmacy didn’t seem to know who was coming for them, and were all too eager to hand them out to anyone. I’m sure if I’d been seized with some malicious impulse, and said: “Oh yes, of course, that’s right!”, I could have walked away with them.

Tina

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Hi I’m thinking of coming off my meds but it’s such a scary choice will I get worse will I stay the same!? My body just seems to hurt at the thought of jabbing myself with another needle and I only take it once a week!!

I have had my dx for just over 8 months and I’m still hating it how long did you guys take to accept you had Ms? I still feel funny every time I think that I have it or tell people I have it

Try a dosette box Tina, they are not expensive to buy. Mine is a week one, with all the days of the week on. Each day of the week is separate so that you can pop one in your bag if you are going off for the day.

Hope I explained that clearly, only on my second cuppa

xx

Thanks Noreen, but it isn’t that I’m having the problem with. I rarely forget to take them. Once in a blue moon - but I’m fairly sure everyone does that, even with a dosette box.

It’s the damn re-ordering: eight things all running out at different times, so I’ve got to be constantly vigilant I’m not getting low on anything. I normally try to order at least a fortnight in advance, and if a few things are not quite due, but will come up in a week or two anyway, I usually add those to the list, so I won’t have to place two separate orders just days apart.

But the pharmacy have been an absolute nightmare. The theoretical turnaround is five (working) days, but I’ve lost count of how many times they’ve managed to take the full fortnight, leaving me sweating about running out.

Once I phoned after a full week to check on progress, only to find my order was still lying on the counter, where it had first been taken. Nobody had put it in the “to do” box, or whatever it is they use. If I hadn’t rung, or more frighteningly, if I hadn’t been well enough to ring, it would probably just have sat there still, and I would have run out of tablets.

But I’m sure, one day, it will be me that forgets. With eight different things to monitor - some I take continually, some only as needed - I’m sure the day will come when I don’t notice that I’m almost out of something, and get caught out. The pharmacy certainly can’t be relied upon to act fast in an emergency. As I say, they often manage to go right to the line, even when given a full fortnight’s notice. So if I rang to say: “I’ve messed up and need them today/tomorrow”, I don’t fancy my chances.

Tina

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I would set an alarm on my phone for each of the times i needed to take the medication.

Hi Tina

Worrying about running out of medication is a continuing problem for me and my husband. I must say since we’ve been able to order our own online from gp we have become a bit more organised. Husband is worse than me. He is always borrowing my codeine and leaving IOU

He came with me on a visit to the gp to support ME yesterday and he had the cheek to ask doc at the end if she would write him a repeat. Luckily she’s lovely

I am worrying about the Christmas holiday…hoping my maths don’t let me down

xx

Yep, absolutely - it’s the constant counting and doing the maths, then realising you’ve got to allow for things like the forthcoming holidays, when surgery and pharmacies alike will be closed. It is my nightmare too, to run out over Christmas!

Hopefully, I’m all fixed up now, but it’s a constant worry, isn’t it? What will I do if I realise I forgot something, or miscounted?

I have been caught out before, assuming I had a full box of something, then realising it was just one card left (out of three). I’ve been through all the boxes recently, checking all the ones I thought were full really are. But I worry what will happen if I ever get too ill or confused to keep on top of it.

T.

x

EM3a

If your meds don’t give you the side effects they are working, mine made my legs and stomach worse, and now that i have stopped have nausea and the headache from hell.

so just wanted to see if i am the only sensitive soul alcohol is the same