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hello.....any advice please ???

HI all

Hope everyone is good :slight_smile:

Haven’t posted for a few weeks ( tho been cyber stalking ) but been a bit cup half empty …had ear infection which led to a pseudo relapse ( I hope ) and got the pissed crab wobble on again, been dealing with the emotional impact of break up with the bloke and scattered granddad ashes today :frowning: and didn,t want to do a negative woe is me rant …:-…and its not all been pants had nice things have happened too ) …

The most frustrating thing has been the wait for appointments ( so lucky to have nhs …but grrr…been off work for nearly 3 months …longest time off since I had my boy …he,s 20 now ! ) .i,m a solution focussed person …bury my head in vat of wine and duvet for a few days but then have need to take the can,t change it but can I get over ,under or around it and do something to help approach …so have joined geriatric Toning tables ( love it ) …pilates at home with Darcy Bussel( want to poke her in eye by time I,'ve got to end ) and am 6 days post cig ( gagging for roll up ) …but looking cup half full…Can still drink wine , get full sick pay at mo and relapse has speeded things up …physio starts next week and had call today to say Neuro can squeeze me in Saturday to discuss dmds :slight_smile:

Which leads me on to my question '…any tips please …so far ( mainly based on Paulo posts …v err helpful btw ) given choice would lean towards tec …but last time saw Neuro ( not ms …mainstream ) …mentioned tysabri ( seems hard-core for first treatment ) ???

Any advice for managing appointment / dmd experiences much appreciated

Many thanks Izzy x

Paolo, go get her me ole cama cama cama cama cama camaeleon…

Ha ha Andy …and if MS bought me anything it got me back on the train lol x

Loving Picasso now…

Good taste …it’s one of my faves

Tysabri is basically ‘Tecfidera Extreme’.

The same company makes both. Both drugs list the ultimate side effect: a risk of developing PML.

Unlike tecfidera, a fatality has been directly attributed to a user of Tysabri. In fact, Tysabri was withdrawn from US markets until Biogen Idec reworded the advice sheet, to address this very real brain infection risk. Of course perspective is needed: Tysabri has been available for a lot longer and to far more people than Tecfidera.

But with that said, administration of both drugs is carefully monitored. And even if the worst happened and you contracted PML, all is not lost.

For me, a self administered oral drug was preferred to an intravenous hospital based infusion.

Ultimately both do the same sort of thing; both have the same sort of risks; but one is significantly more effective than the other when providing pros and cons. ‘Extreme!!!’ ™

I think if my circumstances or apparent progression of illness were adequately severe, i would want an equally as potent DMD to combat it. Currently i am grateful to be popping pills. There is also some comfort from knowing that i have a ‘Tysabri safety net’ (even if only in theory,) should the Tec be found to be inadequate for my needs.

good luck. weigh up your status and any decline, and act accordingly.

HI

thanks for this Paolo …I didn,t realise they were made by same company and are so similar

Have to say I am thinking along same lines as you …my symptoms are thankfully nowhere near as disabling as many …and am still hopeful wobbly legs , stiffness and balance will improve with physio ., as for pins and needles and vibrating I,m so used to that now think I,d miss it if it stopped …though have to say the fatigue is a bugger …but guess I will have to get used to pacing myself and “spending” my energy wisely… ( easier said than done…especially when I go back to work full time ! )

I want the most effective drug to hopefully keep the bugger at bay …but want to balance that with risks / potential side effects and impact upon day to day life of taking the dmd …i can,t see the point of taking a drug that impacts more on daily life than the MS currently does …in the hope that it may or may not prevent a serious life changing relapse…that may or may not happen ( if that makes sense ??? ) .

popping a pill twice a day is preferable to monthly infusions in hospital …and although I know a bad relapse could change things at any time do feel hitting it with the big guns at this stage is not for me ( hope I don,t live to regret saying that ) …but anything in life carries a degree of risk combined with chance , it’s a question of balance ( not that I,m great at balancing at mo ! )

From what I read tecfidera side affects, in the main , can be managed and after all though they are listed that does not mean everyone will experience them …you seem to have managed well and your posts about the drug very positive and helpful .

No idea what I,'ll be offered tomorrow and will of course consider the advice of the Neuro, but am not leaning towards rebif e.t.c …lowest relapse reduction rate ( so stats say ) and injections …plus my daughter has diabetes so would need to get new fridge to store if both of us were jabbing ourselves…she has already taken over top shelf bless her …besides knowing us one of us would end up picking up wrong drug if stored together …

So fingers crossed they,'ll offer me tecfidera , it will be effective and I can get back to work

Spent my lunch listening to My private nation… Good luck with Neuro tomorrow…

in my opinion (and that is all) it sounds as though your MS is of the type where you could reasonably expect the ‘mild’ tecfidera to be the appropriate dietary supplement.

the ease of taking it, combined with the brief period of time you may need to manage very slight side effects, are proportional to the state of your disease and the symptoms it creates.

if over time, it is found to be too little, you still have the option of upping to Tysabri.

beta-ferons are bollocks. frankly, if a neuro wants to palm you off with a packet of syringes, you should stick 'em in their bum!

good luck and demand the best (appropriate) therapy for your set of needs and preferences.

Thanks for good luck wishes

…fingers crossed I,'ll get a step closer today and won,t have to chase Neuro with syringe

Maybe he’ll embrace his inner hedgehog…

Grr…appointment cancelled as Neuro not well …know it can,t be helped …but selfish part of me is …argggggg !!!

Feels like for every ( wobbly ) step forward I take 2 back at moment

Is it too early for wine ???

According to my wife, it’s never too early !!! Wine. Train. Cheesecake. Sorted. :smiley:

Your wife sounds very sensible …decided on some retail therapy first …followed by wine and night with the gals …which will involve wine and plenty of cheese …of the 80,s music variety