Last reply 1 week ago
What a day!!

Hi All

Well as far as Mondays go this one has been pretty rubbish!

My Dad saw someone at local memory clinic and they think he may have the start of Alzheimers. I then saw Specialist for annual check up and my lymph count has dropped to 0.4. I have another blood test in a month and if hasn’t increased I will be taken off Tecfidera. I have been on it for 2 years having swapped from Avonex and I really don’t want to go back to injecting.

Selfish I know!

Trace

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vixen
2 weeks ago

Well, @tantar, at least you know that your tomorrow is more likely to be better than your today! All the best, The force is with you……x


stumbler
2 weeks ago

@tantar, sorry to hear about your Father.

As for you, your bloods should be monitored three monthly, with urine tests 6/12 monthly.

https://www.mstrust.org.uk/a-z/tecfidera-dimethyl-fumarate

A lymphocyte reading of less than 0.5 for six months would necessitate a treatment review.


tantar
2 weeks ago

@stumbler I have been on Tecfidera for just over 2 years and can’t remember having urine tested. I had bloods done every 3 months for first year now not as frequent. My lymph count was not high before starting Tecfidera I think around 0.9 just over 1.0.

We don’t have a Neurologist locally, I see a Specialist. Neuro’s come over to us or we get referred to Uk.


stumbler
2 weeks ago

@tantar, Ah, you’re based in the Channel Islands. Lucky you.

OK, I can see that no local Neuro does cause its own set of problems. But, in this case, you need to become your own advocate to get the monitoring and treatment you need.

Your Doctor should be able to arrange the required blood and urine test for you, to monitor for the risks outlined in the article I posted before. Read that and refer your Doctor to it, so he understands the required monitoring too.

A low lymphocyte count is to be expected on an immune-suppressant therapy. But, it should be higher than 0.5, possibly around 0.9 – 1.0. Now, this figure can go up and down, which is why the regular blood tests are needed, to spot any trends.

Do you know what your previous results were? and when?


tantar
2 weeks ago

Oh yes CI, we are lucky, but I don’t know anyone with MS locally. So when I have days like today you guys to the rescue 😀

I can ask for blood test results. Normally I am very much in control but I guess I trusted it was being done as it should be and eased off.


stumbler
2 weeks ago

@tantar , never delegate your health to anyone else. The best person to look after number one is…………………number one!

By the way, @gardenpotterer is another Channel Islander…………….


tantar
2 weeks ago

I think @gardenpotterer is one of the other islands but not too far away


stumbler
2 weeks ago

@tantar , I only said a “Channel Islander”, but a bit more local to you than most. 😉


tantar
2 weeks ago

Being a “Channel Islander” we tend to know people who know people 😉


stumbler
2 weeks ago

@tantar , us “grockles” also know people. You do still call us mainlanders Grockles, do you? 😉


niccis
2 weeks ago

@tantar Try not to worry. I was taken off Tecfidera as it wasn’t really working for me. My count was low and MRI showed several new lesions. I’m on Gilenya now which is one pill instead of two and i feel 100% better in myself. More energy and much more positive. My count is down to 0.2/0.3 but Gilenya works in a different way so theyre not too worried about the low count. Switching from Tec turned out to be a good thing for me- all is not lost!


gardenpotterer
2 weeks ago

I have just seen this thread, I am presuming you are on one of the other islands as I have access to an MS nurse which is great, any chance you can hook in with them? Not sure how it works inter Island.
Nice to know that there is someone a little closer that uses this forum. I have been a bit slack at writing anything though, must try harder :). Hope you are having a better day today.


tantar
1 week ago

@ gardenpotterer I am in Gsy. Our MS Nurse is execellent so we are v lucky.

I spoke to her and got my lymph results. 0.7 is my highest with Liver and Kidney all fine by lowest before this one was 0.5 and my normal is 0.6. I last had an MRI in 2015 which showed no new or active lesions.

I guess it’s just a waiting game until next month.

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