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DMT consent given

Hi all,

just been given the thumbs up to have DMT. Don’t know yet what Im going to get s my Neuro has to refer me to the MS nurses to discuss, so be prepred for many questions once they have given me some things to read. I know Neuro said it would be one of the old style drugs. waiting for my appointment.

Hi Jacky

Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid You seem to being offered one of the DMDs from the Moderately Effective, Category 1.1 drugs. Probably ignore Avonex as that’s more of less been replaced by Plegridy (it’s less frequent and subcutaneous rather than intramuscular). Some of the others don’t seem to be prescribed so often these days either, but it’s as well to have figured out some of the methods of using the drugs and famililiarise yourself with the name.

Hopefully it’ll happen soon.

Sue

thx Sue

Neuro has suggested interferon, ms nurses next month so reading upon these.thanks for think link.

well a mind boggling choice of drugs to take but im erring towards the tablets as I dont fancy injecting myself. Of the two tablet types wonders if any one is taking them Aubigio & Tecfidera and how they are doing. Swaying towards Tecfidera even with the PML side effect. Any one here recently started and how did you decide which dmt to take

Hi Jacky

Tecfidera has the best relapse reduction rate of the two drugs (50% on average). The PML thing isn’t a big issue with Tecfidera because it happens only if you are JCV positive and your lymphocytes are depleted by the drug. Lymphocytes are checked every month. They are the type of white blood cell that fights viruses (which is what PML is). So if your lymphocytes are below a certain level, you are taken off Tecfidera. And your lymphocytes recover.

Also, Tecfidera works best of all if it’s the first DMD a person has taken. See Multiple Sclerosis Research: #NeuroSpeak: DMF as a second-line agent or not for information on this. (DMF = Dimethyl Fumerate = Tecfidera.)

If you find either that you can’t take the side effects (usually stomach related but these can be managed by eating the right kind of food with the drug and introducing it slowly) or your lymphocytes make it impossible to stay on the drug, or you have some other reason to stop it, you can swap to a different DMD quite easily.

By contrast, Aubagio has a relapse reduction rate of only 30%, and has an impressive list of potential side effects. If it were me, I’d take Tecfidera. And I did until low lymphocytes took me off it.

Best of luck making your decision.

Sue

Hi Jacky. I’ve literally started Tecfidera this week, in fact just going to take my first tablet of the higher dose tonight. I was initially told I was not legible for DMT, then a couple of weeks after my last neuro appointment got a phone call saying they had reviewed my case and now I was. I had read all literature, including the link Sue has given you and I really lost sleep over making my decision. I was thinking of copoxone, but then I read the info in the link which Sue has also given about Tecfidera been better as a first line dmd. This coupled with the better relapse reduction rate swayed me. I think you need to think about your lifestyle and how things will fit in with you, only you know that. I also spoke to a few people I know now with ms about their experience. I wrote a list of questions for when I saw the ms nurse and after that thought about it and made my decision.

Thanks Sue

unfortunately the links info isn’t included any more. i like the increased reduction rate of 50%. I guess i will have to see what my blood test results show. I notice that the MS trust site is saying you should have an MRI scan within 3 months of taking this DMT.

PML is quite a scary disease,bit then again so is MS so its a weighting up of all positives and negatives, anything that can reduce relapses has gotta weigh heavily in favour. Its my fist drug so fingers crossed,

More readng to be done.

Hi Chatter

Appreciate your reply. I agree the reasons that r swaying you certainly are ticking my boxes. Have you had any of the symptoms they described,flushing,sickness etc.

I have been on Tecfidera for ~6 months and have found the side effects are manageable. Had flushes almost daily when I started, but they can be mitigated somewhat by eating a substantial meal alongside your dose (morning especially, for a while when I started I found it easiest to have a big breakfast and skip lunch.)

Still have occasional nausea, as well as flushes maybe a couple of times a week, but usually much less severe than they were when I started.

Still early days for me, but had no flushing. I would say that the only side effect I’ve had so far is that my stomach feels a little tense.

Thanks for your comments,Im looking at making sure i have a bowl of porridge and might make some boiled eggs to take to work. Was told by nurse that eating a protein rich meal is important to counteract the side effects. Not looking forward to feeling sick (fingers crossed I don’t get them) as 1 was out of action for a considerable time last year with nausea and vertigo.

Think i can cope with bit of nausea its the vertigo that knocked me for 6.

Good luck , any tips or hints on how too manage side effects much appreciated. Shame its not a one a day tablet as I could take at home Instead of going to work. Do the side effects last long?

The flushing for me can be anywhere between 20 minutes to a couple of hours, nausea a similar amount of time but will be v. mild if it’s for longer.

I would say that if you’re lucky the worst you have to look forward to is a bit of discomfort and occasional “you’re looking a bit red today” comments from co-workers.

great. looking forward to this.NOT. cn only hope this lasts for a few weeks months till body gets used to it.