Mixing Meds ?

Everyday living
1

Hi there,

I’ve had relapse & remitting MS for the last 4 years and have been taking 5000iu of D3 along with magnesium (chelated) daily since being diagnosed.

18 months ago I started getting surge like sensations in my thighs when walking which would throw my walking out, I also found that both legs were getting very restless and twitching at night when resting, so I discussed this with my MS nurse who prescribed carbamazepine, which I took for around 6 months, unfortunately this did not seem to have any affect on me so I stopped taking it.

For the next 12 months or so I just got on with things, but recently these symptoms have increased,so again I spoke to the MS nurse who this time prescribed Gabapentin, which I’ve just started, even though some of the side affects of taking Gabapentin can be very very similar to actual MS symptoms !

I sometime think what are these “professionals” thinking when prescribing meds ?

Now then, because of the meds I’m currently taking, D3, Magnesium, Gabapentin & Omeprazole I’m trying to find out if its ok to take these with each other ?

One of the things that seems to stand out when looking this up on the web is that Magnesium can actually stop meds from being absorbed so can Omeprazole.

Oddly my D3 levels have not raised that much over the 4 years that I’ve been taking it, so I’m now wondering is it the Magnesium that could be affecting absorption, and perhaps this is why the carbamazepine did not work ?

As for the Omeprazole I’ve only recently been put on that so I cant blame it for any meds I was previously taking.

I think one of the biggest hurdles MS sufferers have is that the MS consultant/nurse will advise something and the GP just goes along with as they are not that clued up on MS.

I really do feel sometimes left out in the dark when it comes to getting advice from the MS clinic, the ONLY time theres any contact is if I ring them with a concern, other that that theres no follow up appointments or reviews, I have to do all the chasing up.

Whats more annoying is that apparently my MS consultant and his team here in Swansea are supposed to be one of the best in their field !!!

Anyway rant over, basically what I’m seeking is advice on mixing meds, particularly the ones mentioned.

Thanks.

2

Hello from another Jack :wink:

I wouldn’t like to advise on meds in any way because it’s a minefield, but it does appear that I have the same Neurologist and MS Team as you.

Contrary to how you find them, I can’t fault them myself. You’re quite correct that the Neurologist is the best in the field of MS throughout the whole of Wales.

If you’d like to share your experiences with fellow MSers, and see what they have to say about the issue , why not pop along to this …

https://www.mssociety.org.uk/near-me/localservices/swansea-young-or-newly-diagnosed-support-group

We meet every fourth Tuesday of the month, so the next one is November 25th . We’re a friendly bunch of people of all ages as we encourage people to bring along friends, partners, mums or dads (they need support too)

If you do attend already I’ll feel embarrassed that I’ve mention this lol! then again, I’ve gone past being embarrassed about anything MS related :slight_smile:

1 Like
3

Not being a pharmacist, I have nothing to suggest on that front.

Personally, I don’t bother with meds for MS symptoms unless I am in such trouble that I couldn’t care less about side effects. Not very scientific, but it does keep life simple!

Alison

1 Like
4

My understanding is that D3 & Magnesium need to be taken together to aid absorption, so that should be fine, particularly as you get both from diet anyway. Incidentally, Magnesium can help ease problems with spasm & cramp and restless legs.

No idea about the drugs though, but this site might be useful.

2 Likes
5

Sorry, that’s unhelpful and does not address the issue of mixing meds (beyond the obvious point about keeping potential interactions to a minimum by taking as few of them as possible).

The more stuff a person has the matter, the more the potential drug (and indeed health condition) interactions ramify. When people ask me what MS is like, I often reply that it is like getting old a bit early, and that goes with bells on here. We all know old people with repeat prescriptions lists of 25 items, the purpose of most of these being lost in the mists of time and the potential interactions now pushing on for infinite. Having a chronic progressive neuro condition can be a bit like that, particularly when there are a couple of other ailments thrown into the mix. Hence the importance, in my view, of keeping a beady eye on the relentless tendency for the meds list to grow ever longer.

Alison

6

I too was under the impression that D3 & Mag should be a good combination, hence taking both for the last 4 years, in fact my consultant advised the D3, but oddly snuffed away the Mag saying “you’d be peeing more of it out than than benefiting from it”, his exact words !

I stuck with the Mag purely through reading the apparent benefits from it online.

1 Like
7

Hi.

Maybe its just me, but I would of thought that follow up appointments or reviews of your condition would be a normal thing having MS, but I find that unless I make contact with the team then theres nothing coming back from them ?

I did go to a few meets earlier in the year in Cwmbwrla, I think it was organised by the MS team in Morriston ?

Not sure if this is the same place as your meets but the fourth Tuesday thing does sound familiar ?

8

Take a look at some of the MS facebook groups for more of an insight into latest ‘global’ MS treatment.

Vitamin D Protocol North America - is a very friendly group - all about the Dr Coimbra Vitamin D3 for Autoimmune diseases.

High Dose Vitamin D MS is another.

Read Ana Claudia Domene 's book or download [amazon] Multiple Sclerosis and lots of Vitamin D.

This will open your mind to what can be done - especially when we can get so bogged down with our NHS - and Neuro’s with lack of knowledge of MS. All they want to do is load us with prescription drugs that do us no good at all.

You could double your vit d to 10,000ius daily - as this is the OK amount - now for anyone who is fit and well - whereas us with MS will need a higher amount. Magnesiuim Glycinate or Malate or L-Threonate is essential with vitd3 - l take Vitk2 as well.

All the B vits are good for us as we do not absorb enough. B Complex,Riboflavin,Thiamine,Biotin, B12 [which omeprazole destroys] Alpha lipoic acid and omega 3.

Neuro’s and doctors trained by Dr Coimbra are more and more available now. They all can be contacted by skype for consultation. Some people l know are off to ~Portugal this weekend to see a Coimbra Protocol doctor. But now there is one in Dublin - Dr M Cawley - Nutritionist -[ who also has MS] - Many of the doctors who have trained also suffer with MS. The treatment worked for them - so they want to spread the word.

9

@ Amethystina,

Not sure if the details in the link are yours, but if so I’m sure I may of spoken to you briefly in a meet at Cwmbwrla ?

We briefly spoke about fatigue and how you were setting your self up to train for a marathon ?

10

Hi again

Maybe its just me, but I would of thought that follow up appointments or reviews of your condition would be a normal thing having MS, but I find that unless I make contact with the team then theres nothing coming back from them ?

I can’t really answer that sorry unless it’s because you’re so newly diagnosed that you don’t yet qualify for DMT treatment - I’ve known that to happen.

I did go to a few meets earlier in the year in Cwmbwrla, I think it was organised by the MS team in Morriston ?

Not sure if this is the same place as your meets but the fourth Tuesday thing does sound familiar ?

No. That would be the Mary Cave Centre, used mostly for respite, a day care centre and it’s the official Swansea Branch of the MS Society .

However TwoCann Tuesdays is funded by them, but it’s more of a place to meet and have a coffee/tea or any other kind of drink (soft or alcoholic) It’s far more laid back, a chance to socialise with others in a non clinical environment, a chance to chat about anything you like with other people affected by MS

You may have heard of it because all our MS Nurses suggest to their newer patients that they drop in. If you’re interested in joining us then feel free to send me a Private Message and I can arrange to put you on our mailing list re forthcoming events e.g. usually have a ‘birthday’ party each February to celebrate the number of years we’ve been running at no charge either.

Or if you’re on Facebook, we have a Closed Group (called simply TwoCann Tuesdays) You’d have to search for us and ask to be added - we never refuse requests and anything posted is naturally confidential :slight_smile:

11

No not me - in my dreams :wink: That would be the person in the link I expect. I just happen to have MS myself, go along to socialise, althpugh my husband and the person in the link, run or manage the group :slight_smile:

12

Yeah a marathon WOW !.

The person I spoke to did in fact have MS, he spoke about fatigue and how he manages it, and how he was preparing for this marathon.

13

So what are differences between Magnesiuim Glycinate and Chelated Magnesium ?

I’ve read that Chelated Mag is the better one to take ?

Then again I’ve read so much info on Mag, D3 and almost every other vitamin and drug that is good or bad for MS that after a while you can find another bit of info that contradicts the previous info.

Its a minefield of contradictions.

14

Hi,yet another Jack here ha ha. i switched on to ask if anybody taking pregablin suffers from restless legs at night and saw your post.

I was persuaded to try pregablin as i didn’t like amitryptiline.

Restless legs is a horrible sensation and im seriously considering stopping the meds.

I agree that GPs are a little in the dark about finding solutions.

Also the stiffness and neck pain are getting worse…meds??? x

15

The person I spoke to did in fact have MS, he spoke about fatigue and how he manages it, and how he was preparing for this marathon.

Yep - inspirational to say the least and all of us who have been attending fo a long time are sympathetic to everyone’s needs and problems. We also like to prove that there is life after MS whilst at the same time getting support from each other. :slight_smile:

16

If I’m honest I’m seriously thinking of stopping everything, purging my system of everything and see how I feel.

Over the last few months I’ve increased and decreased different doses of different meds and I think my body is just “confused”.

My MS symptoms definitely felt worse on carbamazepine, the Gabapentin doesn’t seem to make my MS symptoms any worse or better,so I cant see the point of taking a med if theres no benefit.

I think starting from basics with a flushed out system is the way to go.

I’m also seeking another consultant to give a second opinion on my current symptoms and the meds I’ve been put on, and more importantly the ones perhaps I should of been put on.

I’m losing faith in my local MS team very quickly, in particular my so called “specialist nurse”, like I’ve already mentioned, it really does seem like that once your diagnosed your just sent away with leaflets to read up on your condition, after that theres no follow up appointments or yearly reviews unless I contact them with a concern.

17

Hi jac

If you do stop all meds, it’s maybe an idea to tell your GP you’re doing it and get them to test your D3 and magnesium levels after a few weeks, see if they’ve dropped by too much.

Obviously stopping drugs that are supposed to help with symptom management could have effects that are more obvious to you.

Also, some drugs should only be stopped gradually, so getting a doctors view on that might be a good idea too.

Sue

1 Like
18

hi

i have reduced my meds successfully and now only take my tecfidera, 1 x amitriptyline and 1 x trimethoprim (a maintenance dose which has kept UTIs away) and betmiga.

i’m happy with this.

i take a multi vitamamin/mineral when i remember which is not often.

i’ll ask my gp for my D3 and B12 levels, hopefully they’ll be fine.

i use a magnesium spray to rub into my legs when i get a spasm.

carole x