Last reply 1 month ago
Having a moan & seeking advice!!

Sorry….this is a long post!

I have RRMS, diagnosed 2006. I had 2&1/2 years of Rebif, from 2008, stopped due to bad side effects. I then started daily copaxone injections from 2011. Following a relapse (my first since starting copaxone) in 2016, I switched to 3x week copaxone injections. Neuro wanted me to start Tecfidera instead (mainly due to bad lipoatrophy) but I declined. The possible side effects (I know not everybody gets them) really scared me and put me off changing. I am self employed on a part time basis, as that is all I can manage and work one to one with young clients in schools. I cannot face the gastro side effects for many reasons, as I already have issues, and flushes in front of small children may worry them etc!!

I also have hypothyroidism, a pituitary tumour, anx/dep & bad IBS (mainly stress related) all of which I take meds for. I struggle on a daily basis with fatigue, IBS and anxiety but over several years I have managed to get my work life balance sorted to minimise the effects of these on my work. A combination of money earnt, working tax credits & DLA low rate enable me to do so.

I saw my Neuro at the end of June & it was an awful appt. I hadn’t seen him since before my relapse in 2016 and he didn’t seem to know why, blamed the MS nurse, was flicking backwards and forwards through my notes, took a personal phone call and had his next patient sat outside (when does he ake notes? Patient confidentiality?!) I got frustrated and ended up in tears as he was ‘grumpy’ that I hadn’t changed to Tecfidera! I explained I had only had one relapse in 7 years, only side effect of copaxone is the lipoatrophy…..and I don’t want to change to something with potentially bad side effects as it will massively affect my day to day life etc and that is a huge risk for me. So, unless I HAVE to change I don’t want to! We talked about possibly having a total break from meds to see how I am…..I am trying to cut down the amount of meds I take and manage my stress as all meds have their side effects and I want to be on as few as is possible.

He agreed I could stops DMTs and he will continue to see me annually. Based on my relapse rate (very few) he said if I need to restart in future, we would discuss best options then. He told me he wouldn’t advise it but it would be ok to have a break. I am seeing MS nurse on Monday to discuss this further…..and to ask all my questions so I can make an informed decision as to whether I come off DMTs or not. My gut feeling is, I don’t want to start Tec and I do want a complete break to see how I am. BUT my fear is whether that would be a bad thing?!

To add to it all and increase my stress…..this week I have received my letter from DWP to say my lifetime award of DLA is stopping and I have to apply for PIP and have a face to face assessment. If I lose this, I’m not sure I can manage on the small wage I earn and WTC 🙁 I will also talk to MS nurse about this but am feeling so anxious and stressed with everything.

Any advise about stopping DMTs, applying for PIP etc much appreciated, thanks in advance

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grandma
1 month ago

Was assessed early on this year. It was a joke, was assessed by Capita, a private company. See the secret filming from Panorama, in the classroom where they have to spend 2 weeks before they are allowed out on Joe public, if they see 10 people a day, they are ‘encouraged’ to only pass 8. I don’t know what area of the country you live in but be very careful. Capita have offices in the middle of my city, there are no parking spaces, disabled or otherwise, when you make your way in, on foot, they ask whether you can walk more than 20 yds (if you have a mobility car) if you say no, they say, with great relish, that you must be able to because they have you on film doing just that! (They gave cameras at their entrance for just this purpose). A few people have had good experiences with being assessed, they have even been given higher rates of PIP than they were on before, perhaps I was just unlucky. My mobility car was taken away in February, I have had one for 19 years, I don’t walk, have an electric wheelchair, had all the adaptions on my car so I could drive anywhere, I now have to go to court to get my car back. They said it would take 6-8 months, I called the other day and was told it will be after Christmas! MS nurse is arranging a Neurologist home for 12 was, Dec,Jan,Feb, because my electric wheelchair does not work in the snow, so if we have any I need to be looked after in one cos I can’t even go to the co-op for a loaf and a pint of milk! If this happens the home costs £3000 a week, and the tribunal about £20k, so the governments cost saving exercise is going to cost far more than the cost of my mobility car.

Answer the questions honestly not forgetting to base them on your worst day when you can’t do things. Don’t be lulled into a false sense of security, most of them are out to catch you out so be very careful.Good luck😍


stumbler
1 month ago

@jules71 , first things first, anxiety and stress will be bad for you. It may also be responsible for any MS activity whilst these stressful situations exist.

You need to ensure that you have enough information to make informed decisions and prepare your application for PIP.

The following document provides detail of the present Disease Modifying Therapies (DMTs) :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf

The following tool may help you decide about DMTs:-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

The following website will explain all about the PIP process and how to prepare:-

https://www.benefitsandwork.co.uk/


jules71
1 month ago

@grandma

Hello

I am so sorry that you lost your motability car. Seems the assessors are causing untold amounts of damage to people who really need the help. I saw the Panorama documentary a long while ago and experienced a face to face assessment with Atos (I think) a few years ago…that too was a joke. I felt degraded, not listened too and the person assessing me seemed to know very little about any of my health issues. I walk, slower than I used to but ok, and often use a stick since my last relapse. I only get the lowest rates and was granted a lifetime award. This was mainly based on MS but took into account my other issues, such as IBS, that can often be more debilitating than my MS. I worry this will get taken from me due to all the horror stories I hear about the assessments 🙁 I will speak with my MS nurse on Monday and ask for her help as I am stressing about everything.

I really hope you get your car back…..it seems they are turning people down on the hope they won’t bother appealing and give up, hence – money saved!? It is an awful situation for so many and seems so unfair that with a life long degenerative illness, and a life time award of DLA, they now aim to take that away from many people. Our situation will at best be the same as when we were initially granted that lifetime award so it makes little sense. BUT we all know its not getting better, why does that not matter?! Take care and thank you for your response


jules71
1 month ago

@stumbler
Hello, thanks for your reply. I know of all the DMTs and have used the msdecisions site each time I’ve had to decide….but my neuro thinks Tec is THE only one for me to try next, as does nurse! I don’t want to, unless I absolutely have to, at this moment in time. Call me stubborn, but I have very good reasons. I will have a look at the PIP link, I just dread the face to face assessment part more than anything. Stress we could do without hey?!


nutshell88
1 month ago

I was diagnosed 2005 had rebef from 2010 to 2011
Still off all types of treatment
I get relapses once a year or several years
Om not disabled at all still rrms

After i stopped rebef i got several relapses repeatedly but then everything stopped for years
I hope you find the most suitable option for you


jules71
1 month ago

@nutshell88
Thanks…..its a tricky decision isn’t it! I’m pleased after making your decision, you feel you made the right decision for you. I often wonder what my MS would have been like had I never taken any DMTs and as it has been really well behaved, in general relapse wise, I do think…..even if the DMTs have stopped some, I probably wasn’t due a massive amount anyway…..as ones I’ve been on are apparently around 30% effective as reducing relapse rate and associated disability! So it’s not a huge success rate and as I’ve only had a few, even if I WAS due more…..it still wouldn’t have been a large amount over all these years? But nobody can tell us what the future may hold, or if the drugs have had great effect, not for certain?! No two the same etc etc!! I don’t want to come off all DMTs and then regret it BUT I also feel I want to give my body a rest from all meds, if able to see how I am? I really don’t know what to do! I am also around 4 stone heavier than I was pre copaxone and wonder if that drug may be a reason? I’ve heard contradictory things on copaxone and weight gain so unsure. Will see how it goes with Nurse on Monday and try to reach a decision then 🙂


stumbler
1 month ago

@jules71, in this life, you have to fight for everything you get. As far as DMTs are concerned, if there is a treatment that you feel you prefer, then note down your reasoning, in bullet points. Then you can “negotiate” with your Neuro and MS Nurse.

After all, it’s our body!

The same attitude has to be applied to the PIP application process. Prepare studiously and go in for a fight!


jules71
1 month ago

@stumbler problem is that we have to fight, which can simply be exhausting 🙁


vixen
1 month ago

Hi @jules71, it’s not the fight that is always the most exhausting, it’s often realising that we have to fight that’s the worst! It can be very isolating too, even with lots of support around you. The decision about DMDs is ultimately one that only you can make. As with most things in life, there are good and bad stories for each side of the fence. At the end of the day, I guess you can only do what you think feels right for you. Good luck with PIP, there are lots on here who have gone through it………x


nutshell88
1 month ago

Of course you worry for your other organs
MS treatments has to be for life time
Or so they say

My neuro said i must start gelinya he says we prefer rebef but you refuse it Reem

Thatsvwhy next week i’ll be giving up to the doctors orders hehe and take gelinya

Im extremly thin by nature i got it from my dad’s side one meal a day is enough
I dont like to be thus thin it even worries me how im gonna take meds while im this thin 😞

I hope your MS nurse is fair and tell you whats best for you x


jules71
1 month ago

@vixen
Thanks for your reply…..It seems so unfair we have to fight for something we were initially given for life (much like MS!!) but they make their changes and so we have to find courage to fight from somewhere, which is hard. It can be very isolating, I’m sure I will be back for more PIP help along the way!


jules71
1 month ago

@nutshell88
Good luck going against uour neuro too!! Mine said he would support my decsion to have a total break from DMTs, and will continue to monitor me annually….but he said it with a certain ‘look’ on his face! (non complient patient!!) But I am the one living with all the meds, side effects etc. See how appt with nurse goes, take it from there. As for PIP……!

I hope all goes well for you too


nutshell88
1 month ago

Lol i feel as a kid
Now im under observation after gelinea first does
Didnt feel anything at all
._.

3 hrs to go


jules71
1 month ago

@nutshell88
Hope all goes well!


nutshell88
1 month ago

@jules71 hehe it was nothing
Didnt feel a thing lets hope it keeps on this way


jules71
1 month ago

Thank you for all of your replies! I saw my MS nurse yesterday and after lots of research, weighing up pros and cons etc I will be staying on Copaxone for the foreseeable future. MRI next June/July to see how brain is, whether more new lesions and so on and then review the situation again.

I am going to start a new thread regarding PIP…..with a much shorter post!!

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