Phone call from the Doc!

LynneS · 31. Jul 2015, 04:25

Morning Guys

I've had a phone call from the Doctor this morning to say that my white cell count is 2.7, to not take any more meth until the issue is resolved, and to contact to the Rheumy support line. The line isn't open today so I'm feeling at a bit of a loss :?

I've been feeling shattered all week, and have been a bit light-headed too, is that because of the low count?

Can I do anything to help myself until I can speak to the Rheumy nurse next week?

Thanks
Lynne

barbara12 · 31. Jul 2015, 05:30

Hello Lynne..I am sorry to hear this..these meds are marvelous when they work, but sadly sometimes the side effects are not so good..sorry I cant advise but hopefully someone will be along soon..hope they get the bloods cells up soon and offer something more suitable...good luck

LynneS · 31. Jul 2015, 06:50

I'm a bit frightened now :-(

As I couldn't speak to the Rheumy nurse, I called the Doctor back to try and understand what the implications of the low count were. Apart from covering himself by saying that the consultant was responsible for the drug, he then went on to talk about 'catastrophic infections' leading to intensive care and sometimes death (but it's a Rheumatology problem)!!!!!

I'm sure this has happened to lots of other people, but I'm monitoring every sniffle at moment imagining the worst :island-shark:

One, feeling a bit worried, camper

L x

stickywicket · 31. Jul 2015, 07:30

I don't think you need to panic, Lynne. Your GP is doing his job well by monitoring your blood results carefully. This is why we have these blood tests so that potential problems can be identified and dealt with before they become serious.

According to my little blue book in which all my blood results are recorded, the white blood cells are important for fighting infections. The normal values for them are between 4.00 – 11.0 so yours are, indeed, low and, again according to my book, this means that the methotrexate might possibly be damaging the bone marrow.

Your GP has done the right thing. He's said no more meth until you've taken advice from the rheumatology team. They will probably want more blood tests to ensure the level is going up again before you resume the meth.

It's true that, as the white blood cells fight infections, you are more at risk than usual while yours are low and would be advised to avoid anyone with snuffles, sore throats etc even more than we meth heads normally do and to step up the hand washing and anti-bac wipes.

It's probably just a blip. These things happen. Leave a voice message with your rheumatology helpline telling them of the problem (Don't forget to leave your name and phone number) and follow it up with a phone call on Monday afternoon if they haven't got back to you by then. Meanwhile, avoid the bugs, wash and wipe frequently but don't worry.

LynneS · 31. Jul 2015, 08:30

Thank you Mrs SW, you were just the voice of reason I was looking for

x

stickywicket · 31. Jul 2015, 10:45

You're welcome, Lynne

I hope it all settles down quickly.

dreamdaisy · 31. Jul 2015, 13:39

These things can be alarming but in my experience only once was something going wrong, all the other occasions were blips, and pretty small ones too.

I sulked massively because I was contacted mid-holiday to go for an emergency blood test but I did discover the delightful term 'deranged liver' (mine was misbehaving) which was some compensation.

On returning and going to my rheumatology unit they explained they didn't use that tem because the public generally misunderstood what it meant. I'm not surprised about that! I hope all proves to be well, please let us know the outcome. DD

slomo · 31. Jul 2015, 14:11

Hi LynneS
I'm quite new to the forum having been diagnosed 3wks ago with inflammatory RA and vasculitis. I'm also seronegative and I had been taking Naproxen and Omeprazole until my rheumatology appt where I was offered a steroid injection and had the tests to check I was ok to go onto Methotrexate. I'll have been on it 3 full weeks this coming Monday. I'm still getting my weekly blood tests and am working on the no news is good news theory as I've heard nothing about them, although I do have a review appt with the GP on Monday morning.
I can easily understand your initial panic and it always seems to be the case that these things happen when the people you need to contact are not available.
I hope it turns out that its something that's easily resolved and that you'll not suffer too much without the mtx in the meantime.

all the best
slomo

LynneS · 3. Aug 2015, 07:30

A quick update (well not that quick!)

I've still not been able to speak to the Rheumy nurse (the support line doesn't support on a Friday or Monday

) but I do have news.

The plot thickened a bit on Friday afternoon when I had the brainwave of phoning the consultant's secretary in the absence of the helpline. The conversation didn't start well as her notes didn't show that I was taking meth, but to her credit she went off looking for some help. She came back and said that she'd spoken to my Consultant who'd said carry on taking the meth and by the way you can go to monthly blood tests :?

So.............. GP said stop taking the meth you're at risk of catastrophic infection and the Consultant said 'get on with it'!!

Anyway I'm pleased to report that I've got through the weekend with no catastrophic infection :swim-shark: (I love that icon!) and have been to see my own GP this morning.

She said that although my white cell count was low I shouldn't be overly worried (apparently it can be common to have issues when you start taking the drug). She sent me for another blood test and is going to phone me tomorrow with the results and decide whether I should miss a weeks meth, take a reduced dose or carry on as normal. So we'll see what tomorrow brings.

On a positive note, my liver function is good, so I can have that glass of rose that's been winking at me all weekend

Thanks for all the support, it really helps.

Lynne x

stickywicket · 3. Aug 2015, 10:52

Delighted to hear you made it through the weekend, Lynne

In my experience good GPs are always more cautious than consultants presumably because, not being the experts, they must err on the side of caution. I've been on meth for 15 years. My consultant is perfectly happy for me to have 3 monthly bloods but, despite more than one letter from her to that effect, my GPs still send me a reminder if I go over two months. At least I feel nothing will get past them.

Enjoy the rose. You've earned it

Phone call from the Doc!

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