Hi all… im back again.
Having now been diagnosed with PPMS for nearly 3 years, and am still on no medication because i dont seem to be getting the medication answers i ask or being prescribed any that i mention at my MS clinics or to my MS nurse & GP… !
I suddenly (on friday), recieved a letter from my MS Nurse stating that:
It is with regret that Amantadine cannot be initiated in Primary Care.
My question is: Whats Amantadine & whats is its function as a medication?
Thanks
Wiki suggests it is an antiviral drug, also used in patients with Parkinson’s and used off-label to treat fatigue in MS patients.
When I was diagnosed in January my neuro said that there is nothing they can give to slow down or limit the effects of PPMS, the only medications he can prescribe are to treat specific symptoms and at present I don’t have any symptoms significant enough to merit treatment.
I’d get in touch with your MS nurse and ask why you have been sent that letter. If fatigue is a problem, the next question is what can she recommend? In my experience, doctors aren’t generally very keen on patients asking for particular meds, they want to make the decisions, or at least make suggestions for the patient to decide between. The same probably goes for nurses.
Hi Dave, I was prescribed Amantadine for fatigue. To the best of my knowledge this and Modafinol are the only two medications available for fatigue. Sadly neither of them helped me. I have heard of people who’ve been helped by Modafinol, however I’ve heard of no one who has been helped by Amantadine. I fully agree with Mitzi…my GP would react very badly if I were to ask for a particular medication but as far as my neuro and MS nurse are concerned, they understand that I read all MS Society and MS Trust information and on several occasions they’ve been happy to let me try different medications and they have also appeared to be very understanding when I’ve declined certain options…such as Botox injections into my bladder. It’s my understanding that the MS society encourage it’s members to be involved in any decision making with regard to their heath. Nice to see you back Dave, hope you’re keeping as well as possible. Nina x
Hi Dave, I have been on Amantadine since March or April this Year & they have helped me, I don’t need a 2-3 hour sleep in the afternoon anymore just an half hour rest. I have also received a questionairre from the fatigue clinic I’ve not looked at yet. Maybe you could ask if they run such a clinic at your neuro centre.
Pauline
I should do more reading. I didn’t know there were any drugs to help against fatigue. All I’ve been offered are baclofen and gabapentin for spasms and the ‘burning’ legs’. I’ve mentioned fatigue any number of times, but none of the neuros have said anything, neither has my GP. For a long time I thought my fatigue was the after effect of some pretty vicious chemotherapy, until my haematologist said I should be well over it. I’ve always said I could happily cope with life in a wheelchair if I didn’t feel so tired and drained all the time. I’m off to google manta dine and modafinol.
Kev, I’ve always interested in reading up about various medication that can help symptoms. Generally when I’ve asked my neuro or MS nurse about something they’ve offered to let me try it…if they’ve felt it was suitable. I’ve noticed over the years they seem to respond well I’ve researched something and then asked for their advice/opinion . As I mentioned in an earlier post neither Amantadine or Modafinol helped me but I know that Modafinol helps loads of people, and Amantadine is helping Pauline. Maybe worth considering? Nina
Definitely worth considering, thanks Nina. I’ll gently prod my medical team. Sunday morning we were having a cup of tea in bed with the sun streaming through the window, and I said,“we should go somewhere nice today.” We made plans, Ruth got all excited, but then by the time I had battled my way downstairs I really didn’t have enough left in the tank to want to go out. That’s the sort of thing which happens too often at the moment. Some chemical assistance might be good.
Hi everyone, I get up at 5 o’clock three mornings a week for work. I start work at 6.30. Funnily enough I am not too bad at that time of morning, just stiffness, but after a shower that seems to die down a bit. However when I come home from work all I want to do is flop on sofa but not for too long as I stiffen up terribly. On a Sunday we go and see my husbands elderly parents (his dad is in a care home with altsheimers) but I don’t seem to have any go about me at all and feel really guilty if I don’t go. I would just like something to give me just a bit more energy to have some social life. Trouble is I have heard these medications can make you drowsy in the morning and that is a no no for me as I need my wits about me. I am going to see the ms nurse next week so hopefully she can help with something. Sorry to ramble on. Another lovely day in Aberdeen. Whoo! Whoo! Mags xx
Sorry spelled Alzheimer’s wrong. Doh!!!
Hi Mags
You should be giving yourself a pat on the back instead of feeling guilty, it appears to me that you have a very busy life, so be kind to yourself a bit.
I hope you have a good appointment with your ms nurse, but please remember dont be too hard on yourself.
Pam x
Mags I also think you need a pat on the back. I get up at 7am five days a week as I like to see my daughter off to school and by the weekend I’m shattered. And I’m not working!!! Don’t beat yourself up, you’re doing really well. The only thing I’d say is that by cutting your hours a bit you might get quality time with your husband, family and friends. You might qualify for tax credits which will make the financial implications a bit easier.It’s not that you want benefits and don’t want to work but you have MS.
It might improve your symptoms and general health as you’re running your tanks down to empty three times a week so it’ll take more effort to fill them again than if you dropped your hours or even changed them. I know that it’s your private decision and personal implications but it’s just like us trying to pace ourselves. I think you’re doing very well but is it worth having no quality personal life?
You don’t have to give answers, it is just a suggestion, something to think about! I understand that it’s a very personal thing. I hope you all enjoy your day.
Cath xx
Hello Dave, I’ve been on amantadine for over 10 years. It’s hard to judge its affect as my condition has declined over that time. As it has no side effects I’ve carried on with it.
By the way, I’ve just had a fantastic down the coast from you just outside Bangor. Despite being a true southerner, my wife is hooked on North Wales.
Best wishes, Steve.