Choices - thoughts very welcome

[sarahb83]

Right I’m back! Seriously had to get a grip took a few months but I think I’m nearly there

Would love your opinions on the biggest decision I’ve had to make so far in my life I know none of us are professionals it’s just opinions as we’re all in that diabetic boat although with differences.

So after being diagnosed with type 2 in September 2021 and lowering my hba1c with diet, exercise and huge weight loss I achieved remission everything in my world was going great until last October when my vision went fuzzy fast forward to last December when I got smacked down with the you’ve got multiple sclerosis Sarah conversation. Spiralled in dispair for a couple of months but have now turned that page - yea it’s not good but there are people much worse off than I am and I’m not dying! In December was told by my consultant it’s the best I could hope for having been diagnosed with this because it’s a lesser form and no meds but after having my full spinal mri completed he’s changed his mind and wrote to tell me as a form of insurance for the future (to minimise or stop disability in later life) he wants my to start a dmt (disease modifying therapy) so here goes this is what I’m thinking and would like your thoughts on

He has written to me to say I can have any of the treatments they are all open to me but he would rather I took one of the b cell depleting therapies these are the most modern with the greatest efficacy and I’ve been sent all the literature for each of the 3 which I’ve read cover to cover. One is a tablet daily, one is an injection done at home once a month the other is an infusion done in hospital as a day patient 6 monthly. Now he’s written to say the tablet one is not affected to diabetic patients due to contraindications but because I’m in remission it’s open to me and he’s happy for me to take that one if I choose. My thinking though is surely is if I’m in remission from type 2 I’ve still got kind of a weakness in my body to dealing with glucose? And why take that risk of pushing up my sugar after working so hard to get it down? So I’m thinking no to that and my husband agrees would you be thinking along similar kind of lines? It’s all a bit overwhelming and it’s so alien not to be just put on a medication by a doctor but with ms they won’t tell you what to take it’s always your choice from a few different drugs depending on what you feel you personally can cope with and I don’t see my consultant again for another 6 months and I’m due to go to hospital for the screening for the drug of my choice in 2 weeks so running out of time to make up my mind. I need to be able to deal with the ms whilst at the same time keeping my sugars in check I definitely don’t want to be fighting on 2 fronts at the same time if I can help it.

Thank you so much for reading my giant post lol apart from this - my life is good I’m 39 I’ve got an amazing husband, 3 great kids and 2 naughty dogs what more could you want?! Apart from that 1 hour personal trainer session I do every week at my local ms centre squats are definitely not my idea of fun, I do them none the less though so that I can get my massage therapy afterwards

 

[42istheanswer]

I can understand that thinking. It might be worth asking him what happens if you choose it and your blood sugars do go up - how easy would it be to switch to one of the others? As you say, we can't give you medical advice, but I think that if you were 100% sure you probably wouldn't have posted, so if you are considering it even a little then I would want to have as much information as possible, including what the possibilities are for switching if you try it and get the unwanted side effects.

If you go for the injection at home would you be giving it yourself? How do you feel about that? I'm guessing with the infusion that may be a prolonged hospital day visit (i.e. sitting around for half a day or full day?) each time? Though every 6 months isn't too bad.

 

[sarahb83]

I can understand that thinking. It might be worth asking him what happens if you choose it and your blood sugars do go up - how easy would it be to switch to one of the others? As you say, we can't give you medical advice, but I think that if you were 100% sure you probably wouldn't have posted, so if you are considering it even a little then I would want to have as much information as possible, including what the possibilities are for switching if you try it and get the unwanted side effects.

If you go for the injection at home would you be giving it yourself? How do you feel about that? I'm guessing with the infusion that may be a prolonged hospital day visit (i.e. sitting around for half a day or full day?) each time? Though every 6 months isn't too bad.

Yeah I’d be doing it myself a little apprehensive but also slightly reassured in that it’s a single doses pen where the needle is concealed and it clicks to let you know it’s started and clicks again to let you know the dose in complete it’s the option of the 3 I’m leaning towards because of the sugar issues with the tablet and the infusion is minimum 6 hours but often longer you have a rounds of meds before it’s started each time to try and lesson the body’s allergic response to it and you’ve got to be closely monitored for a few hours afterwards x

 

[LydiaDustbin]

Hmm. I know we can't give medical advice here but if it were me, I'd go for the weekly injections. The 6-monthly infusion sounds not ideal, plus you have to take extra meds to make it tolerable which could be a whole other minefield, and the daily tablet mucks up your blood glucose. A weekly jab sounds much more convenient, especially if the needle is hidden in a pen (I can't inject myself if I can see the needle - I managed IVF years ago when I had to inject myself because it was a pen device, but last year, following a minor op, I had to have a daily Heparin jab at home but it was 'proper' syringes and I had to get my husband to do it!). If you find it stings then ask the hospital if you can chill the site first and if they're ok with that, hold an ice pack against the site for a few minutes beforehand (it's what I did with the Heparin jab, aka 'the bee-sting') and you won't feel it at all.

 

[Lucyr]

Obviously can’t give advice but if it was me a less frequent jab would be easier than daily tablets to fit into my life, less time spent thinking about it etc, and if the injections don’t have the blood sugar side effects then another benefit.

 

[Eddy Edson]

Which one is most effective as an MRI modifier? I'd start with that, unless the BG effects were potentially large.

FWIW!

 

[sarahb83]

Which one is most effective as an MRI modifier? I'd start with that, unless the BG effects were potentially large.

FWIW!

All 3 of the first line b cell depleting therapies he’s recommending are in the highly effective category (the best there is) the older therapies are in the moderately or even lower categories for effectiveness I’m assuming that’s why he prefers the b cell depleting rather than the older interferon 1a ones x

 

[sarahb83]

Hmm. I know we can't give medical advice here but if it were me, I'd go for the weekly injections. The 6-monthly infusion sounds not ideal, plus you have to take extra meds to make it tolerable which could be a whole other minefield, and the daily tablet mucks up your blood glucose. A weekly jab sounds much more convenient, especially if the needle is hidden in a pen (I can't inject myself if I can see the needle - I managed IVF years ago when I had to inject myself because it was a pen device, but last year, following a minor op, I had to have a daily Heparin jab at home but it was 'proper' syringes and I had to get my husband to do it!). If you find it stings then ask the hospital if you can chill the site first and if they're ok with that, hold an ice pack against the site for a few minutes beforehand (it's what I did with the Heparin jab, aka 'the bee-sting') and you won't feel it at all.

Yeah I had to have those after c sections and David had to do it for me he said he’d do this every month to if I need him to but I think I’d like to try it on my own if I can x

 

[Tdm]

Yeah I had to have those after c sections and David had to do it for me he said he’d do this every month to if I need him to but I think I’d like to try it on my own if I can x

I can't say which would be the best but after a year of 4 injections a day, really, you do get used to injection yourself, its no biggy

 

[Tdm]

I can't say which would be the best but after a year of 4 injections a day, really, you do get used to injection yourself, its no biggy

I mean, injections are no biggy, you soon get used to them. Wouldn't like you to think i was diminsishing the rest of your situation

 

[Deb_l]

Personally I would be tempted by the monthly injection and if it’s already pre-loaded in a pen, you won’t have any stress delivering it other than actually pressing ‘go’.

The active ingredients in the tablet could be glucose or some other BG contra indicator. I’ve just started on Crohns meds and lactose is an ingredient in those for some reason.

Best wishes with the MS. I can’t imagine what thoughts have gone through your head following your diagnosis but you sound very positive which is fantastic. Your medical team also sounds very supportive and progressive which is fantastic. Take care xx

 

[42istheanswer]

Yes, with the further info I think I would be going for the monthly home injection too if it was me. (That's partly also because I would have more chance of remembering once a week than daily medication at first, it takes me quite a long time to remember to take something every day when I start)

 

[Docb]

@sarab83 - I have been monitored for the last 10 years or so since I developed symptoms which, when a brain tumour had been eliminated, were most likely to be the onset of MS. For me, scans nerve studies, and lumbar punctures have not shown any of the recognised signs of MS so I am in the category of somebody with neurological deterioration of unknown cause. In the MS community, it is known as being in limbo. I say this because I have looked into MS periodically and one thing for sure is that the idea that its onset was diet related and could be treated by dietary changes has never arisen.

It seems like you have a very switched on neurologist. I would suggest you listen to and be guided by him and don't go chasing stuff published by somebody simply trying to sell a book.

PS... Good luck with working your way through things. You might find the MS society forum useful, it has a similar general atmosphere to this one.

 

[Leadinglights]

It is brilliant you have been offered the opportunity of treatment options at a point that has promise of being successful. I remember hearing something about it a few years ago and asked a colleague if it would help her but sadly she said her condition was too far advanced.
You have a lot to think about but be guided by the specialists but ultimately as they say the decision is yours.

 

[sarahb83]

@sarab83 - I have been monitored for the last 10 years or so since I developed symptoms which, when a brain tumour had been eliminated, were most likely to be the onset of MS. For me, scans nerve studies, and lumbar punctures have not shown any of the recognised signs of MS so I am in the category of somebody with neurological deterioration of unknown cause. In the MS community, it is known as being in limbo. I say this because I have looked into MS periodically and one thing for sure is that the idea that its onset was diet related and could be treated by dietary changes has never arisen.

It seems like you have a very switched on neurologist. I would suggest you listen to and be guided by him and don't go chasing stuff published by somebody simply trying to sell a book.

PS... Good luck with working your way through things. You might find the MS society forum useful, it has a similar general atmosphere to this o

@sarab83 - I have been monitored for the last 10 years or so since I developed symptoms which, when a brain tumour had been eliminated, were most likely to be the onset of MS. For me, scans nerve studies, and lumbar punctures have not shown any of the recognised signs of MS so I am in the category of somebody with neurological deterioration of unknown cause. In the MS community, it is known as being in limbo. I say this because I have looked into MS periodically and one thing for sure is that the idea that its onset was diet related and could be treated by dietary changes has never arisen.

It seems like you have a very switched on neurologist. I would suggest you listen to and be guided by him and don't go chasing stuff published by somebody simply trying to sell a book.

PS... Good luck with working your way through things. You might find the MS society forum useful, it has a similar general atmosphere to this one.

Yeah unfortunately within a few weeks of the onset of the optic neuritis brain scan alone was enough to diagnose me - I’ve got seven lesions on my brain (called a low lesion load) and had a 2 hour complete spinal mri in January and that has showed various patches of inflammation at different levels in my cervical and thoracic spine from previous years but nothing either new or active and I was told I didn’t qualify for any treatment as I don’t meet the current criteria for Newcastle which is 2 relapses in 2 consecutive years (I’ve had 7 years between my 2 relapses 1st was misdiagnosed by gp as a migraine) and neither of my mri’s showed anything active - but aparantly the guidelines are currently under review as if you’ve had just once relapse affecting the optic nerve you should be put in treatment so that’s what he’s doing with me. He seems to know his stuff and is at the cutting edge of every new development so I have to be as positive as I can and go with whatever he suggests he terms it in me as a benign form of relapsing remitting due to the length of time he thinks I’ve had it (since I was - teenager) and how few relapses I’ve had the amount of damage I have in my brain and spinal cord and the speed of my recovery’s after relapse. Trying to see all the positives that I can x

 

[sarahb83]

It is brilliant you have been offered the opportunity of treatment options at a point that has promise of being successful. I remember hearing something about it a few years ago and asked a colleague if it would help her but sadly she said her condition was too far advanced.
You have a lot to think about but be guided by the specialists but ultimately as they say the decision is yours.

Yes you’re right I think I’m very fortunate to be termed by the consultant as a benign form of relapsing remitting and to be given the chance to start a disease modifying therapy x

 

[Pumper_Sue]

MS is autoimmune, so more than likely you will end up with other conditions as you go along which could/might include type1 diabetes.
All the drugs on offer will give you side effects of some sort.

My advice would be to have a look at MS forums and see what the users have to say about treatments available.
I have the progressive form of MS, which I'm thankful to say is very slow in it's progression and even if I was offered any of the drugs I wouldn't touch with a barge pole due to the potential side effects.
My neurologist told me the key to keeping it at bay as much as possible is to make sure I keep myself as active as I can with gentle exercise. Dog walking is my exercise plus getting out of bed in the morning 🙂
Obviously everyone's symptoms are different as it's a very individual condition.

If you haven't done so and you are a driver do make sure you inform the DVLA and your ins company of your diagnoses.
Good luck in what you decide to do.

 

[sarahb83]

MS is autoimmune, so more than likely you will end up with other conditions as you go along which could/might include type1 diabetes.
All the drugs on offer will give you side effects of some sort.

My advice would be to have a look at MS forums and see what the users have to say about treatments available.
I have the progressive form of MS, which I'm thankful to say is very slow in it's progression and even if I was offered any of the drugs I wouldn't touch with a barge pole due to the potential side effects.
My neurologist told me the key to keeping it at bay as much as possible is to make sure I keep myself as active as I can with gentle exercise. Dog walking is my exercise plus getting out of bed in the morning 🙂
Obviously everyone's symptoms are different as it's a very individual condition.

If you haven't done so and you are a driver do make sure you inform the DVLA and your ins company of your diagnoses.
Good luck in what you decide to do.

I think currently unfortunately there’s only one drug for progressive ms and it’s given right at the start that’s the ocrevus the infusion one it’s given for primary progressive but only if you’ve recently been diagnosed or like me for relapsing remitting. yes I was told straight away about that but I’m not a driver so that’s one thing I didn’t have to do lol sad to say I’m probly not ever going to be now as my eyesight has ongoing issues following the damage I’ve sustained to my optic nerve, optic disc and pupil oh goodness I seriously hope I don’t end up with type 1 diabetes too! yeah the side effects are very nice but if it can push back the amount and severity of relapses and push back and lessen any disability later in life I think it’s worth the side effects in the long run - I really hope so anyway x