2013 without medication??

Everyday living
1

Hello everybody

After a year on Gilenya and not really seeing any changes - my walking is still gradually deteriorating and I am now using a wheelchair to see the Christmas market, go to the concert hall etc. - I was just discussing with my wife the idea of a year without any medication. This sounds pretty dramatic and I am not sure if this is really an option. I was wondering if anyone had actually tried this. You could also see this an experiment, just like a year taking new medication. I have also been following the alternative medicine path and it would be interesting to see how this performs without a prescribed MS drug. I would really appreciate your comments before I even dare mention this idea to my neurologist :slight_smile:

I hope everyone is feeling well enough to enjoy the festive period.

Best wishes

Richard S.

2

Hi Richard,

Do you mean without ANY medication, or just without DMDs?

By no means everyone with MS is on DMDs - some because they never qualified in the first place, and others (like me) who declined.

Over two years down the line, I’m still happy with my decision, and feeling it was the right one for me (this is not a recommendation).

However, I think a big factor in the equation, for anyone, is how aggressive your MS has been, or appears to be. I was in the fortunate position of having only infrequent relapses, from which I’d recovered well (albeit recovery was slow). I took a gamble (and I admit it was a gamble) that relapses would continue to be infrequent, with OR without treatment - so I opted for without.

And yes, so far, no clinically significant relapses in over two years. Occasional periods of feeling bleuuurrggh, which might or might not have been relapses, but none I could definitely say for sure, and none I went to the doctor or hospital about.

However, if I’d been having much more frequent and/or severe relapses, and particularly if my walking was compromised, it almost certainly would have tipped the balance the other way.

Quite independent of the DMD decision, I certainly wouldn’t be without prescription medication for symptom relief (pain, spasticity etc.) So basically, you can pick and mix your medications: you do not have to accept all, or reject all. Saying no to DMDs should not have any bearing whatsoever on your access to other prescription medication.

Although you seem reluctant, I think you do need to talk to your neuro about the perceived lack of success with Gilenya. Is this a view he shares? Is it possible you are now secondary progressive, and don’t have relapses any more anyway? If you are deteriorating without relapses, you may be correct that DMDs are of limited value for you personally.

On the other hand, Gilenya is more easily administered and seems to have relatively few side-effects in comparison with traditional injectables. Is it disagreeing with you to the extent you feel you’d have a better quality of life without it? If you’re not getting side-effects, and you don’t have to inject, I’d be inclined to think it’s no big deal to stay on it, just in case it’s helping.

Tina

3

Hi Richard, Happy Christmas to you and your`s too.

Well now, I recently found out I dont have MS anymore (?) but have been taking some meds which MSers also take.

DMDs never came into the equation for me, so i cant offer any comments on that score.

But my other meds, including amitriptyline for excrutiating nerve pain, and baclofen for painful spams and spasticity, will remain my life long saviours…providing my docs keep prescribing them of course!

I`d be a bit careful about ditching your drugs, as you may come unstuck…hope not though.

luv Pollx

4

Hello Richard,

I have got spms and am taking Keppra and Clonazepam plus Pregabalin. The Pregabalin is for the nerve pain but I have found that when I try to increase the dosage as prescribed I find the side effects worse than the nerve pain, so I stay on the lowest dose I can and would rather have some of the pain and get on with it. I am more alert, not so dizzy etc, etc. So if you do decide to go drug free I wish you the very best of luck but be prepared for the pain. Do hope it works for you.

Janet

x

6

I came off all my meds, but Im not on DMD’s, just gastric meds, baclofen, irritable bowel meds and vit.d3. I wanted to see if they really worked, hence all my symptoms came back.

Symptom relief is pretty good, as well as taking vit.d3, especially as Ive found out I now suffer osteoporosis. I have also been advised by gp to take Evening primrose oil, at first I thought it wouldnt make any difference, but now my skin is better, so expect my insides are appreciating my intake too, after all our insides must be suffering as our outsides. Since my vit.d3 increased, my health did (no proof) but I generally feel more able to cope and havent had cold for well over a year now (touch wood).

Its not daunting, sometimes we have no choice but to seek advice for our symptoms and try medication and add complimentary additions where we see fit. Ive used a trial and error system and have reduced my intake by 3 scrips without any effect as yet.

I wish you well in the New Year, we do our best in the hope our ms stays in the background. Its hard to say but we are people before a person with ms, and the brute needs to be told every now and then.

take care,

bren

x

7

DMD’s don’t make you better, I think this is a big thing for people to understand. Wether you do or do not take a DMD you will not improve from your current state. Steroids can improve you but not DMDs.

DMDs are invisible, they work by doing the one thing you can’t tell until it’s too late. Maybe you won’t have any relapses this year, maybe next year you’ll have one or three and it will permanently leave you unable to speak properly or wipe your own bottom…it’s all maybes.

What DMDs try to do is to take those “maybes” and push them way over there in the future, instead of right now.

You aren’t gambling on if the DMDs do nothing, you gamble on if you get a relapse next year or later.

In 2011/2012 in a period of 6 months I had three relapses which almost left me unable to enjoy life in any way…Fortunately Steroids helped me recover all but the strength in my legs and I was able to go back to having some form of life I could enjoy.

I don’t take DMDs to stop me having relapses, I take DMDs to stop me having them now, because no matter how bad the side effects might make me feel, they are temporary and a relapse might not be.

While I’m sure there are people who have very bad side effects to DMDs, I’m sure there are people who just don’t really appreciate the difference between “feeling a bit bad” and permanently losing body control. Perspective is vital to an informed decision, you’ll have relapses either way, the only gamble you make is how soon and how often.

8

This is just my experience and we are all different. I would do anything to never again have a break from a DMD.

I was on Copaxone from 2006-2010. I did really well on it - a couple of mild blips (not worthy of being called relapses) and only one new lesion in all that time. But when I started a proper relapse, my neuro took me off Copaxone. That was April 2010 and I was maybe 1-1.5 on the EDSS - no one would ever have guessed I had MS and I was a very active and successful martial artist also starting out in a new academic career. The plan was to go onto Tysabri or “one of the new oral DMDs”, but I didn’t qualify for Tysabri and the NICE decision on cladribine and fingolimod kept being delayed. I kept phoning and asking about Rebif. My neuro kept saying, “Wait for the pills.” And I kept relapsing - as soon as one started to improve, another started. Finally, my neuro agreed to me not waiting any longer and I started on Rebif in June 2011. I was 6 on the EDSS. I have had no relapses since I started on Rebif, but I am still a 6 on the EDSS, I use a stick and sometimes a wheelchair and I had to give up my new career and my taekwondo.

If I could go back in time to April 2010, I would have refused to leave that office until my neuro had signed a prescription for Rebif.

Please talk to your neuro. Perhaps there is a better option for you than Gilenya or perhaps some time off is actually a good option? Whatever you decide, please consider it very very carefully.

Karen x

9

Hiya Richard

I agree everyone is different and everyone has different choices, ‘offers’ and experiences but I know where you are coming from.

In my situtation I have never been offered any meds or even involved in a discussed about it apart from Amitriptyline & Pregabalin late last year - which I tried for a few months. I have also ‘dabbled’ and bumbled along in my own way with LDN, vitamins, diet, Sativex and the ‘official’ Pregabalin and Ami. So I am ‘med free’. Still here. But I don’t really know any different.

Oh and enjoy your Chrimbo…

Marty

10

Hi everyone

As usual many many thanks for your interesting and insightful comments. Frostpaw mentioned that the DMDs don’t actually improve our health, and I think this is the thing that is sometimes hard to get your head round. My thoughts yesterday were definitely triggered by another year on a new medication that hasn’t prevented my walking getting worse. But maybe my other symptoms would be worse without the Gilenya. We never really know this! I am with my neurologist on Thursday and I hope she has time to listen to my thoughts.

On another subject - I really miss having a shower with loud music on just before getting my gladrags on and going out. These days a shower is so demanding that I have it have it six hours before I am actually going out!! Long gone are the days of jumping up and down in front of the bathroom mirror to Adam and the Ants - perhaps a good thing really :slight_smile:

Thanks again and have a positive week

Richard

11

My wife decided to come off Copaxone after she felt it really wasn’t doing anything for her, in so much as there seemed to be no noticeable difference from the period before it was being taken to over a year afer injecting every day.

We’d gone through the same thought process as you really, plus she’d also got thoroughly fed up with feeling like a pin cushion.

For my wife there was no noticeable difference, in fact she’s not relapsed since coming off and seeking other forms of treatment for a period of two years now.

Like others are suggesting, what works for one doesn’t necessarily work for others. I also understand that for some a DMD is actually a comfort blanket, letting go of that blanket is a big deal.

Good luck which ever way route you choose.

12

[quote=EJC]

My wife decided to come off Copaxone after she felt it really wasn’t doing anything for her, in so much as there seemed to be no noticeable difference from the period before it was being taken to over a year afer injecting every day.

We’d gone through the same thought process as you really, plus she’d also got thoroughly fed up with feeling like a pin cushion.

For my wife there was no noticeable difference, in fact she’s not relapsed since coming off and seeking other forms of treatment for a period of two years now.

Like others are suggesting, what works for one doesn’t necessarily work for others. I also understand that for some a DMD is actually a comfort blanket, letting go of that blanket is a big deal.

Good luck which ever way route you choose.

Can i ask you please what noticeable difference were you and your wife expecting?

Dmd’s are to help reduce relapses in frequency and severity therefore not expected to show noticeable difference

Was she relapsing on copaxone? If she was then she should have been offered an alternative.

If there were no relapses but no improvement then that is to be expected as dmd’s do not improve disability but will help to slow down the process.

It is also possible that she has not had a relapse since stopping copaxone as she could now be SPMS. If she has gone into secondary with no relapses but still progressing then the dmd would not work anyway as they are only for RRMS.

Apologies yet again to the origional poster . Can i ask if Tysabri has been discussed at all? I’ve heard that it is getting really good results for some. I have no personal experience of this myself though but i would want to throw as much as i possibly could at the ms. Perhaps it will be discussed with the neuro.

Teresa.x

13

I have just come home from a routine review appointment with the consultant neurologist. It is the first time I have seen him since I started Tysabri 20 months ago. This is nice in itself, because my MS had gone aggressive (hence the Tysabri) and I had been a rather frequent visitor to his clinic before that. I would feel ashamed, and would regard myself as deeply stupid, if I was taking this drug (and expecting the taxpayer to pay for it) in order to give me a warm, fuzzy, secure feeling. I have Meursault for that.

I admit that I am committing the egocentric fallacy of writing as if the whole world’s behaviour should be measured against my personal experience and views. My apologies. But you will admit, I hope, that there is a lot of it about.

Alison

15

i was on Rebif for a year, but when i was it it my relapses doubled, my nero took me off it. saying it was the rebif that brought on more relapses. i have now been off dmd for 2 years and not one relapse.

But everyone is different and everyone reacts different

16

Hello EJC,

I’ve been absent from the forum for a little while but your post caught my eye.

Why? Because we have another user who doesn’t have MS & speaks for his wife & has a penchant for lobbing in deliberately incendiary comments just like you.

I expect you will be throwing your hands up in horror & looking all wide eyed & innocent now, but a word to the wise…we’ve seen just your type before & we know your game.

Go and play it somewhere else.

17

DMD’s have a protective effect when you stop, in my case for over a year when I stopped with Betaferon, despite 6 more or less relapse years. I started relapsing was after the oral drugs, but sense overcame hope and I’m now on copaxone. I’m still relapsing abet at a less frequent and milder way. I have no doubt that it is DMD’s that have kept me so relatively well. Ten years on, 8 of that on DMD’s and I still work as a nurse.

18

I am grossly offended by this statement. I imagine many others feel the same.

You’ve been asked for apologies before and failed to provide them so I can’t imagine we’ll get one this time either, but I’ll ask nonetheless: EJC, please apologise for the upset that this statement has caused.

19

Several people have lept on the post that suggested that a DMD was like a comfort blanket - and found it offensive.

Personally, I consider it is more the case that the poster is trying to be offensive - like a small child that has just heard a “naughty” word, and wants to see what will happen when it is repeated at home, or in infant school.

Geoff

20

Sinkers,

I am i the difficult position that I am allergic to all 4 of the injectable DMDs and have had to come off each of them after a very short time due to anaphylaxsis in the case of the Interferons (very, very, very rare) and unblievably enourmous, dinner plate sized welts which I perservered with in the case of Copaxone until that too turned into ananphylaxsis (again unblievably rare).

I was then one of the 2000 world wide cohort that was started on Cladribine which was fantastic for me and resulted in me going from monthly back to back relapses to none in the year since having my first treatment with Cladribine. Sadly it was pulled from the market before I could have my second and final dose of it and I am now waiting for BG12 to come on the market and I (and the other Cladribiners) will be the first cabs off the rank to get it as we can’t take anythinng else because of the way Cladribine works.

Because of the fact I haven’t been able to be treated with DMDs in the9 years of having MS I am now at 6.5 on the EDSS. I often wonder how different my life would be if I has been able to take DMDs successfully and hadn’t therefore had so many severe relapses and accumulated so many permanent deficits.

The thing with DMDs is that they work as a preventative medicine. They slow down the rate of relapses and the severity of each on you do have thus reducing the overall burden of permanent deificit. They won’t make any existing symptoms get better and if you are slowly getting worse rather than having definite relapses you may be going Secondary Progresive in which case the DMDs won’t be of as much enefit either.

I would defitely talk your thoughts over with your neuro before making any decison about going off them all together. It would be a tragedy if by stopping the Gilenya you were leaving yourself open to the chance of having a whammy of a massive relapse with resultant permanent deficits.

All the best with your decison and have a great Festive Season.

B

PS EJC, as for your “comfort blanket” as you term it, had I been able to take DMDs, it would have meant the difference between an independent life for me, a more normal life for my daughter and my life as it actually is which means needing a carer every day of the week to simply manage basic things such as showering and cooking. I nearly died TWICE this year due to complications of MS so you can take your patronising, condescending phrase and stick it where the sun don’t shine you sanctimonious cretin. You have NO idea what you are talking about and how DARE you preach to people who really DO have MS… Go to HELL

B

21

Those who post here who don’t have MS, don’t understand how important drug therapies are to us. There’s no emotional connection, so they feel free to write what they like - whether it’s accurate or not.

It’s terribly upsetting to lots of us. I’d have become disabled years ago, had I not been fortunate - lucky that the DMD I take, stopped my relapses - or slowed them down from every 8 weeks to 1 in every 3 years.

Rebif isn’t my comfort blanket. I had an 8 month gap in 08 when I moved here to northwest Spain. I didn’t think I needed Rebif anymore as I was so well. I started LDN which made me feel great - but then disaster struck and I spent 2 weeks in hospital.

My new neuro got me back on Rebif and I carried on with LDN as well, as it was a great help with my bladder problems.

I’ve had one relapse since 09 - this year, but again, like all other relapses, there’s been a price to pay. I’m only just recovering now from the damage done. It is not a comfort blanket. It’s a lifeline.

Yes, I prefer to have Campath treatment as I’ve restarted my musical activities and I’d like to be able to plan ahead. I dont’ qualify for it though - nor Tysabri, or Gilenya.

Sinkers, I hope your appointment goes well with the neuro. If you are offered something else, do keep us informed on how you are doing. I’m sorry that I’ve spent most of this answer responding to that ‘comfort blanket’ poster. He has no idea how badly he affects us. It’s time he learned some empathy.

22

I definitely used up any NI I had paid many years ago - but I’m not too fond of Mersault. Don’t drink much but go for the best [IMO] - a decent chanpagne, Bombay or Hendricks gin,

Tysabri has been a life-saver for me. My comfort blanket is one of the above and a ratty old rugby sweat-shirt I paid a fiver for in 1990

Liz