Hello I live in the uk & have been diagnosed with R&R MS since 2011 and have done really well on Vumerity.
My concern is I have to go for blood tests every 3 months which I find difficult to fit in with shift work as a carer & time recuperating but if I miss my blood test my neurologist stops my Vumerity prescriptions and won’t start the prescription until she has seen me. I’m suffering with fatigue, depression & numbness and really do not think it is justified to withdraw my medication and let me suffer like this. Does anyone else struggle with appointments & working & then get their medication stopped?
Being retired I’m fortunate enough to be able to make appointments for blood tests and in fact these days the tests are taken on the same day as I have my 6 monthly appointment with the MS Nurse.
If you have appointments with an MS Nurse then could the blood test be arranged for the same day?
I have sometimes been able to arrange for the tests to be carried out at my GP surgery ( much closer than a trip to the hospital) but I think this messes with budgets and costs to the GP Practice.
I rather think that blood tests absolutely have to be taken. In my case (on Avonex) one of the side effects can be a reduced White blood cell count and quite rightly, the Hospital/ Neurology dept would be in serious trouble if they carried on prescribing without checking all is OK
Hello @justine_walker
When I was still working, it was generally accepted by my employer if I had to attend a medical appointment, then I was technically off-sick.
For me anyway, I would never compromise health for employment, hope you are able to find a resolution to the work-health balance.
Regards,
JP
Vumerity is very similar to Dimethyl Fumerate. It reduces Lymphocytes. If they are too low for an extended period you are at higher risk of a brain infection called PML which can kill you. I expect this is why she has stopped the treatment - because she has no reasurance from the blood tests. To me this makes sense. It’s a shame they can’t offer you a “walk in” blood test like they do at my hospital.
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Hi Hank_Dogs
You are fortunate to be retired and able to attend all your appointments.
I totally agree with you the tests are important and I wish wholeheartedly that I had not got into this situation.
Unfortunately withholding my MS meds does not help my situation, instead puts me at a higher risk of having an episode & permanent disability which statistically is more likely than a low white blood cell count. How ethical is this?
Hello muchthesamemuchness
Thank you for your reply.
When I was diagnosed 11 years ago I too got time off to go to my hospital appointments.
Over the years I have had to take jobs with less responsibility & ultimately less pay to enhance my work life balance. I am now on a zero hours contract so if I don’t work I don’t get paid also I don’t know if I will have any hours next week so if I take time off I don’t get paid I also run the risk of upsetting my employer & risking further hours.
I totally agree my health is more important than any employer/work, but if you were in the situation of not working and not having enough money to pay food/rent etc would you put the blood test off for a week or two?
Hi @justine_walker
Zero-hours working is such inconsiderate employment imo.
If it was me having to rely on it I would sign-on, you have a disability so you are permitted to work a limited number of hours per week, at least you have some income support to fall back on.
I myself am ill-health retired, so I just choose to volunteer some of my time to charity, when I can.
Kind regards,
JP
Everything about having MS makes life harder, and the burdens of ‘MS admin’ like fitting in appointments for tests and treatments and consultations is one aspect of it. It must be particularly hard if you are working nights at least part of the time and have to factor in the need daytime sleep as well. I am sorry that concerns about your treatment have been adding to your burden. It does seem that, if you want to continue the treatment, you’ll have to do your best to find a way to meet the test requirements. I wish that things were easier for you.
Trying to think of a solution to your predicament. Have you spoken with your MS Nurse ? She / he might be able to arrange things to help you: blood test at your GP Practice, blood test next time you see her , or on days that are suitable to you
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Coming in rather late on this one…
I can really sympathise. My current job is often 6 days a week and usually abroad, so fitting in medical appointments is a nightmare.
I have sometimes resorted to going private to get things done on my days off. So far I’ve managed to fit things in somehow so they haven’t threatened anything. I do get bolshy letters from NHS hospitals though - usually for “failing to attend” appointments I had in fact cancelled.
Your job also sounds physically demanding and you are doing really well to keep going.
How much flexibility is there on where you have the blood tests? Can a GP healthcare assistant do it? Can you choose any hospital - perhaps one with a walk-in service?
I looked up the instructions doctors are given when they prescribe Vumerity and it does actually say they have to do a blood test every 3 months… a safety thing given the potential side effects.
It sounds like Vumerity was working well for you, but the number of appointments is a problem. Would a different DMT avoid this problem? They don’t all have the same “burden” in terms of ongoing monitoring.
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I can really sympathise with this as I originally had to have blood tests every 3 months and now it’s every 6 and always struggle to fit them in. I also have received multiple nudges from my neuro team to get them done or the prescription won’t be renewed. As Hank said though, there is a risk with my meds ( and I imagine with yours) that the meds can potentially cause PML (I’m also on dimethyl fumerate) which would be infinitely worse. It’s not unethical for your neurologist to stop the prescription if she/he cannot be certain of what it is doing to your body. I know it’s frustrating, but might be worth checking if there’s a drop-in service for blood tests as my hospital recently started offering this and it’s made everything so much easier. I’d also speak to you MS nurse if possible about the struggle you’re having and see what she/he thinks. Hope it gets better.
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