medication

I am currently taking the followings meds daily: 40mgs Baclofen (10mgs every four hours), 10mgs Solafenicin (1 tablet a day), 20mgs fluoxetine (one tablet a day) paracetemol and ibuprofen when needed. My OH came in last night and said that he wanted the old feisty me back as he felt that I had lost my fight.I was always quite assertive. This has only really been happening since I started this amount of meds. I’ve been reading with interest what various ms’rs have been saying about Baclofen. Luckily I don’t get much pain and the baclofen is for my spasms but my Neuro Physio keeps wanting to upthe dose which I’m not very happy about because it doesn’t seem to be helping anymore. I am extremely woblly even with the Baclofen and I know that the solafenicin has done what its supposed to do. I am now thinking of stopping everything and see what happens. Has anyone else tried this? Your thoughts would be very much appreciated. Linda

Linda, your post left me wondering whether what your OH really wants is for you not to have MS any more! Is this perfectly proper wish leaking out as grumpiness about the meds you need? Is his wish that you should beat MS by sheer force of will being translated into criticism of your ‘failure’ (!) to do this on account of your ‘not showing enough fight’? If so (and this would not be unusual, by the way) he might need some time and gentle help to understand that this is not the way it works… Poor chap, and poor you. It is a difficult business, this. Alison

Hi everyone, just to add to everything going on I’ve just had a major incident.Been in bed all day because the movement wasn’t good and decided to get up and have dinner. After the meal decided to go back to bed and on the way back to the bedroom both legs went absolutely rigid (mine go completely rigid, not go to jelly) and I ended up in a heap on the floor unable to move. My OH helped me to get upright and manouvred me back into bed. This is one of the worst episodes (it has really scared me)and I am now on the verge of giving up and retiring to bed and stay there for ever, as it is the only place I feel safe. My symptoms seem to be going haywire and I’ll be on the phone to my GP and my MS nurse tomorrow morning as this is a ridiculous situation. I know my original post was about meds but this is so unpredictable. I am now losing the will to deal with it.

Hello Linda

I’m sorry to hear about this latest episode…not surprised your feeling scared. Hopefully tomorrow your ms nurse will be able to help sort things out for you.

((((((hugs))))))

xxx

I am sorry that you are having a horrid day. It is such a blow when something goes badly awry and I hope you get the help you need and feel better and stronger soon. Hang on in there.

Alison

Hi, thank you Blossom and Alison. Spoke to the Dr this morning and have been told to rest and, surprise, surprise, up the Baclofen (MS nurse is in agreement). I know we are all different with this MS situation. I was dx’d in 2000 but in the last six months there has been a noticeable marked decline. I knew it was going to get me sooner or later I just didn’t think it was going to be so severe. Been off work since mid October and can see no likelihood of going back. My OH is supportive but I think this is now hitting him quite badly now. Yesterday was bad and today is not alot better. Does anyone else get rigidity instead of going to jelly? It is great that I can talk to people who understand this situation, so thank you to you all.

Hi Linda.

Although I dont have MS (I was mis-diagnosed with it for several years tho`) I am quite familiar with baclofen. I have just weaned myself off it, after about 13 years on it.

Initially I took it for very painful arm spasms. I began on 10mg 3 times a day. It got up to 70mg before it stopped the pain. I also had stiff legs and transfers were a nightmare. Hubby had to really force my legs to bend.

Also I found that the drug was making my legs weaker and I had many, many nasty falls. I think that`s what put me in a wheelchair very early on.

I`ve been a wheelchair user for 10 years full time and 2 years before that part time.

I recently had a higher than normal result in a liver function test and so decided, with my GP, to drop some drugs, incase they were causing the liver result.

Firstly I weaned off oxybutynin, as I had an spc fitted last July, so didnt need it, (is solafenicin for bladder calming?), then quinine, and lastly baclofen. I am okay with all that.

I dont think any of them were affecting my mood. I was always a very assertive person too, with a bubbly nature. Those 2 things wax and wane, but I blame that on being frustrated with being totally dependent on others for so many things. I have lost so many abilities, but have to accept that and do the best I can.

If you need the drugs, try to explain that to your hubby.

Incurable deseases, like ours, affect not only us, but our OHs too!

lots of luv Polly xx

ps never just stop any drugs, without talking to your GP/neuro about it first.

Hello,

I was in touch with MS nurse today - she told me to cut back on baclofen - I’m taking 70mgs - and see if the weakness/stiffness in my legs changes - I don’t really know how to describe it. Just seems a bit worse since I increased baclofen 6 weeks ago.

Maybe it’s a bad idea.

I’ll keep you updated on any changes

Marie

Good afternoon everyone, hope you’re keeping away from the bad weather. Polly, how do you stay so positive and upbeat? I have only been using this site for a short amount of time but saw that everyone is very knowledgable and helpful. Still digesting all the information but as this condition is very up and down everything in my life does not happen quickly. Will let you know how things go. Linda x

That seems to be the answer I get all the time - up the baclofen. I also suffer from rigitity. I nearly fell head first down the stairs because by quad was so rigid it wouldnt bend when I went down the stairs. I find baclofen does not reduce the extra tone but removes the feeling of stiffness only. I want to try sativex but they wont give it to me due to cost. Baclofen is the cheapest of those drugs which is why it is tried first.

Moyna xxx

That’s what I think too Moyna - baclofen doesn’t seem to reduce the extra tone - I’m wondering why I would go for the baclofer pump option if the oral isn’t doing much for me - or so it seems.

It’s hard when different health professionals have different opinions!

Marie x

Hi Linda, I firmly believe that MS patients need to manage their Neurologist, by all means take his advice, but you know your body and the effects that drugs are having on them, so stand ur ground, be firm and if u want to trial a stop of all meds then do so.

Are u taking the solifenacin for bladder problems?..I also go to my GP with Information printed by the MS society, and he acknowledges that MS is a drug lottery of what will or may work and and so prescribes what is written by consultants of course !.

After having this illness for 23 years, and now seperated after 25 years, its even more down to me to be a ballsy bird,

let me know how u get on, cheers Anna…

.ps…your boyfriends comments need to be considered as he can see changes which maybe others cant?