Forum

no dmds

hi all,

short and sweet but does everyone take dmd’s. is anyone choosing to do it without them.

regards kim

Kim, a lot of people on here take DMDs, don’t mind me saying but have a look at the post currently hot topic, DMDs verses healthy eating Tracey x

Doing without them Kim - BUT with my neuro’s full backing, I hasten to add. In other words, I’ve never gone against his advice.

I don’t do the healthy eating thing either - beyond trying to maintain a normal varied and balanced diet, that is.

I’m just deliberating whether to have chocolate pudding and custard!

Declining DMDs doesn’t mean you must adopt alternative therapies instead - especially if you don’t believe in them!

Tina

x

Bit late Tina, but my vote would be yes ! Chocolate pudding AND custard. Is there any other way ??? Enjoy. :wink:

Hi,

I’ve not been taking any dmd’s now for the last 13 months having discussed options with ms nurse and neuro. I have tried copaxone, rebif and gilenya. Copaxone was ok for a few months but then I had several allergic reactions to it which caused breathing probs. Then went onto rebif for 10 months, worst decision ever…awful stuff, felt like a zombie all the time and the jabs were exceedingly painful no matter what i did. Felt absolutely fine on Gilenya but unfortunately started to develop macular edema so had to stop that. I then decided I’d had enough, was really fed up, neuro gave me choice of tecfidera or aubagio BUT because my latest mri had shown very little progression, we mutually agreed to stop meds. Since then I have had urinary and bowel issues but I’ve felt so much better in myself, I have more energy and no brain fog. I know I maybe taking a big risk with no meds but they make me feel so awful. Seeing my neuro again at the end of the year and I don’t know which path to take, I’ll just see what he suggests.

I do not believe my mother was fortunate in time, to have the potential benefit of DMDs offered to her. I do recall she received a plethora of pills to manage her symptoms though.

Whilst her diet was of a healthy bias, she certainly wasn’t excluded any of the major ‘pudding food groups’.

None of this did her any favours. Her MS was cruel and brutal.

Whether she was a victim of poor luck or her own negligence, it left me with absolutely no doubt, when i received my own diagnosis, i was going to do every last damned thing available to fight this.

MS won’t be defeated, but i hope to keep the wolves from the door for a few years longer than had i simply carried on as per before diagnosis.

Whether fit or not, taking appropriate meds and having a balanced diet of all things is an investment in a healthier future. Those with MS simply have to set this bar a little higher than most people.

We all need to do what gives greatest contentment, whether in the form of delusional reassurance and / or an extra slice of cheesecake cake :slight_smile:

Yours was indeed a tough introduction to the brutal realities of MS, Paulo. I think your philosophy is a good one.

Alison

Back in 1999/2000 when I was dx with alarmingly active rrms, it was touch and go whether DMDs would be available at all to me or anyone else - so I did indeed come close to having to do without, but it sure as heck wasn’t my choice! Fortunately for me, the neurologist where I am secured funding for Avonex for us. I was, and remain, very glad he did.

Alison

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I’m another who’s doing without DMDs. I was on Rebif for a while, but suffered severe headaches almost every day, so came off it. I have my annual consultation soon, so maybe we’ll discuss another DMD, but I lack enthusiasm.

I’ve suffered unpleasant side-effects from several other drugs (not DMDs) over the years, so am a bit shy of the things, but am doing fairly OK on Gabapentin at the moment.

Hi Kim

I too have used 2 DMDs (Copaxone and Rebif) and because relapses were still going on while on Rebif I stopped it. No difference being on them to be honest. I know some get a drastic cut in relapse rate while being on DMDs but not me unfortunately. I am doing ok without them though.

Shazzie xx

The MS Trust publication “Open Door” had a good article concerning proactive treatment this month and it starts on page 11.

http://www.mstrust.org.uk/information/opendoor/

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hi and thanks for all your thoughts xx

Its too late for me, older when diagnosed couldnt even have I.V. steroids.

BUT I belong to several MS groups and from what i read now there are so many choices now out there in the form of DMD. Surely one should suit somebody. I know a few people say this didnt work, so i tried that and now its working etc etc et el.

I am wondering if DMD does slow down progression if your young its worth trying a few?

A healthy life style will not cure MS or any other disease. For me its just cutting down on the things that aggravate inflammation, but i still have my treats.