Received a letter today from NHS that my appointment with my MS nurse has been cancelled because he has been called up to the front line to treat people with the virus.
I am on Tecfidera and have blood tests every 3 months.
I am due a delivery in May so no urgency.
Told in the letter to ring up for a blood form from the hospital and go to my local GP for blood test, not keen to do this as not been out of the house and concerned against going to GP as cases now rising rapidly and feel unsafe there.
Has anyone else had a letter and do you think the drug companies will accept a temporary amnesty, not ringing them till I get my delivery, do not want them to overreact.
How long have you been on Tecfidera David? If it’s longer than say 6 or 9 months, and your bloods have been fine every time, I’d risk staying on the drug without the blood test, as long as you are socially distancing/self isolating. But if your bloods have shown any decrease in white blood cells at all, then you need the test. Definitely.
The reason I say this is that the white blood cells show the level of Lymphocytes and Neutrophils in your system. The lymphocytes in particular are essential to fight against viruses (that’s their job) and Tecfidera can lower the level of lymphocytes, thus leaving you open to, for example, colds, flu and Covid19!
What you could do is phone your GP surgery, ask for a telephone consultation with a doctor and get their advice. They should have access to all the blood tests you’ve had while on Tecfidera so far, so would be able to advise professionally. It’s possible that a district nurse could come and take the blood in your home. This would reduce the risk.
On a positive note my local council opened a gym near me , well it is 1 mile away so I can get there on my scooter ( mobility one, I did have a real Lambretta one in my teenage days I was then a real mod with mirrors and a parker.
I got referred there by the NHS and a fantastic guy did my induction, as you know I cannot walk as my left leg will not lift off the ground.
So I concentrated on leg exercises like bike, leg lifts, leg pushes etc and arm exercises. Met lots of people even an old working colleague and my leg improved a bit .
Went every day took my lunch and had a coffee at lunch and watched tv, fantastic changed my life a little bit.
People are fed up. Just had a friend on the phone telling me she wants to die! She lives alone and a friend drops food off for her. She loves a daily mooch around Leeds markets. She is paraplegic and cant leave home now. She wont open her curtains to see sunshine she cant go out in. Hope I cheered her up.
I have recently changed DMT and have been on Tecfidera for one month. I need my bloods checked for the first time to see how my body is reacting to this new drug. I called the GP but the receptionist said she’s not allowed to book any blood tests. I tried to explain to her that this isn’t a routine thing and that I NEED them checked but she still wouldn’t let me book an appointment. I have emailed and called my MS nurse, but no reply I really don’t want to fall through the net and end up ill just because I couldn’t get a blood test
It was agreed in writing between the GP and the MS nurse that all my ongoing Tecfidera blood tests would be carried out at the GP surgery. The hospital where the neurologist is based, is too far away. The receptionist even said ‘yes I can see that in your notes’ and still wouldn’t let me book. So now I’m now stuck in this stupid position where I can’t get a blood test booked and I can’t get in touch with the MS nurse either
I went for my routine 3 month blood test at the local hospital on Tuesday this week.
I was contacted by the nurses twice before the appointment to advise me just how important this test was. All other routine testing for MS treatments had been suspended. I went and was surprised at how empty the hospital wa
s. It was a quick in and out - no social chit chat or anything like that.
I’ve been on Tecfidera for 18 months and was told that my next blood test will be in 4 months as (a) my blood tests had been within the designated range and (b) hopefully things will have started to return to normal by then.
I really don’t want to fall through the net and end up ill just because I couldn’t get a blood test