Hi. I am at a stage where I want to find some drug to help me with my symptoms. I think my ms has gone on to SP but I haven’t been told officially - I haven’t had a relapse for a couple of years but I have symptoms every day, good and bad days, and so on. My main problems are constant pins and needles, slow difficult walking, spasms in one leg that are sometimes very strong and almost make me fall as my leg gives way, and occasionally stiff ‘tin man’ legs that I believe is spasticity.
I deal with my MS largely on my own (as I know a lot of us do) as I see a neuro only once a year, and all he does is note down that I am still alive. My MS nurse is beyond awful. I have been going to the doctors over the last few weeks in an attempt to get a referral to a different neuro at a hospital closer to my home and also to try to get sativex as I am keen to try this. My doctor always says she is waiting for others to contact her before she can do much - the useless MS nurse who was supposed to sort out my drugs and neuro months ago, the neuro, the other docs at the practice.
Recently my doc has given me Baclofen for the spasms, but I found it made no difference to my symptoms but did make me incredibly tired, so I stopped it. She then gave me amitryptilene to try - I took it for a few weeks and built up to two tablets at night. It helped me sleep better (I wake up frequently) but it made no difference to my symptoms, and I found I was experiencing awful urinary retention. I stopped taking amytrip and my bladder got better.
I presently take tramadol every day, which makes me feel half human and I couldn’t do without, and ropinarole for restless legs, which has also been great. But I really want something to take during the day for my spasms and occasional spasticity.
What should I ask my doctor to try next? I would like to hear people’s opinions on whether pregablin, gabapentin, sativex etc would help me. I particularly want to try sativex as I believe I could take it for quick relief when the spasticity strikes rather than being dosed up constantly - is this right?
Also, does anyone buy sativex privately? I used to buy LDN this way, but gave it up as I was still getting worse. I live in the West Mids - does anyone know what sativex access is like in this area?
I’m wondering if you’re maybe not giving meds long enough to work? Baclofen dosage has to be built up slowly to the right level, so you wouldn’t necessarily get a lot of help for your spasticity straight away. Plus the side effects of most of these drugs wear off after a few weeks so it can sometimes be worthwhile persevering.
I believe that the main alternative to baclofen is tizanidine. Only after you’ve tried both of these will most PCTs allow you to have sativex (assuming that they OK it anyway - a lot don’t). I’ve read of someone buying sativex privately on here, so it can definitely be done, but it is pretty pricey I think.
Your sensory stuff would probably be helped with pregabalin or gabapentin, but these also cause side effects that can last several weeks. I nearly stopped pregabalin because of side effects, but my nurse persuaded me to persevere - I’m glad I did because the side effects wore off after about 4 weeks and it works really well for me.
I hope you find something that works for you soon.
Thanks Karen.On reflection, I probably didn’t give baclofen a fair try - but my doctor never said anything about giving it time to build up or the side effects wearing off! This is why we need RELIABLE MS NURSES! Sorry for shouting but I get so angry about how utterly rubbish mine is.
I think I will try for pregablin next time, and give it time and persevere with the side effects.
I looked into private prices of sativex and it seemed to be £450 for three 10ml doses! Which I would imagine wouldn’t last more than a few weeks surely?
l also live in the West Midlands - l have had SPMS for nearly 30yrs. Since diagnosis l have only seen a Neuro twice - and that was in the last 4yrs. l do not have access to a MS nurse - l live on the boundary of Worcs/Warks - and have been told l live too far from the MS nurse.
Luckily, l do have a helpful GP - and she does prescribe Sativex - and l know a lady in the next village whose GP also prescribes it.
l have been taking LDN for 3yrs - and l have had good results - no side effects - and my MS [fingers crossed] has not progressed in that time. l do take 20mg amitriptyline at night which helps me sleep. And l take 3/4 sprays of Sativex, to help with spasticity in my legs, at night.
Apart from lots of supplements - l do not take anything else. l find the ldn and Sativex quite a good ‘cocktail’. Before it became licenced for use for pwms in June 2010 - my GP did give me a private script for it - then it cost about £220 for 4 phials. l find the phials - that is 90 sprays - lasts along time-
so it is not that expensive for the pct - compared to many other drugs. lf you were on dmd’s it would be £30/£40.000 - Thats a fact that you can use to help with your bid to get it. Why should us SPMS - miss out!
l could not get on with Baclofen/Tizanidine - l did not like how weak and tired l felt - and it made me fall down so much that l was only safe in bed or sat in a w/chair.
l hope this has helped you - and l can understand your anger and frustration.
Hi, I am in Aberdeen, Scotland and I had to get Sativex privately. I got it from e-med , is that where you got your Ldn. If it is you should be a member and they should have a letter confirming your diagnosis of MS. Then it is easy to get Sativex. Just fill in the form, requesting Sativex and say they have previously received a letter from you confirming your diagnosis of MS. The price seems to vary quite a bit, so do shop around. The cheapest I could find was Dicksons in Glasgow, is this where you got your Ldn from? It cost £412 (this included sending it out to me) for 3 bottles. Each bottle contains 90 sprays so £412 for 270 sprays. It also costs £15 to get the private prescription for it. I am stiff and sound a bit like you. I couldn’t get on with baclofen or zanaflex . The Sativex takes the edge of my stiffness but doesn’t really help me walk much better. My walking and balance are very poor. Sometimes my legs feel tight and the Sativex really helps this. One spray and the tight feeling goes pretty quickly. I cant take more than 1 or 2 sprays a day because it makes me “high”. I kn ow they said they took out the stuff that makes you high. I don’t care, I am high on it! Obviously the more I take the higher I am so I can’t take any when I am going to be driving or going to work . This limits the amount I take so a bottle lasts me about 9 weeks. They say to discard an openen bottle after 6 weeks but I didn’t and it was ok. Cheryl:)
I agree with the last comment about Baclofen, when I first started taking it about 4 years ago, It made me very sleepy and not much else! I met another ms person who adviced me to stick with it and juggle the dosage around until It was right for me. I now find it helps a lot.