Neutrophils down again...: Same old story, body just... - NRAS

NRAS

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Neutrophils down again...

15 Replies

Same old story, body just does not cope for long on Metaject or oral MTX.

After calling for blood test result last Thursday, and being told it was fine, I did my injection on Friday.

Then went to pick up a repeat prescription forceye drops at GP practice yesterday, only to be told I was to get repeat test in two weeks instead of one month.

Today, because they could not tell me why, GP called me to tell me ‘biochemistry part of test is fine but blood count a bit down; test again next week. Save bothering Rheumatology Dept.’

Well that last bit stunk of cover up.. I know from experience that if it is neutrophils dropping, as before, not only do I have to get tested again in a short time but also stop MTX.

So, Rheumatology nurse did confirm my suspicions after I called the helpline; quit MTX, retest and get back to her before restarting MTX.

Meantime, hope to fight off the virus and am annoyed with GP practice for not being more careful!

Best to check my blood via RA helpline instead, in future.

GP practice staff just do not see the serious consequences of neutrophils dropping and the corresponding need to stop MTX.

How about your GP practice staff?

15 Replies
LizzieR profile image
LizzieR

Hi,

This has happened to me so many times. I've now had to stop mthx and Benepali. I'm about to try Humira. I'm hoping for a miracle;-)

My docs get worried and ask for extra blood tests- but don't act on them- they just ask for continuous repeats. Rheumy nurses seem to be less worried, but they do act!

I think you are right to manage it yourself- they are all just so busy.

Sorry you're going through it though

L x

in reply to LizzieR

Just had fresh call back from nurse; get tested again Thursday as viral infection can bring down white cell counts... oh well, meantime just fighting virus and hoping to beat it!

LizzieR profile image
LizzieR in reply to

Oh, the endless testing...

Damaged profile image
Damaged

I am Canadian so here I get lab results sent to me directly. I learned to interpret the test myself. I also know when to call doctor or usually they will call me. For other CDN myehealth is how I keep track. I have been doing this for years. It also provides trends over time. I also keep copies of all tests, procedures and drugs. Recent addition is biometric data. Fitbit allows me to track heart rate and sleep.

in reply to Damaged

That is good! I miss that aspect of healthcare from my years as LPR in WV, USA.

It was good to have the results in front of me.

Damaged profile image
Damaged in reply to

I am an academic at heart. Knowledge at least provides the illusion of control lol

I have left it in the hands of my GP until 2015. Now I am the team leader. I will review any recommendation but ultimately it is my body. Doctors have hundreds of patients and illnesses to deal with but I only need to become an expert with one, me. They have no time or interest in genetic data or best doctors report. I am on CPP disability now so nothing but time to study. So I research daily. The body is amazing. I believe that the right approach is out there I just need to find what works for me. I just no longer look outside for the answer. My next goal is learning effective meditation. I want to try and guide my body to self correct. At least no side effects lol

in reply to Damaged

That’s good, being able to think and research.

I have been so brain fogged that I feel brain dead!

Good luck with that approach. The body is indeed an amazing organism, worthy of respect and working with its innate ability to maximise health.

Damaged profile image
Damaged in reply to

Plenty of brain fog but mostly in the mornings. I do a lot of memory games and puzzles which do help. Mostly I just do not fight it. Try to schedule everything for late afternoon lol

in reply to Damaged

I was doing the Lumosity brain games for a while but quit when brain fog kept lowering my performance... too depressing!

I now have several open tabs on my browser, awaiting my attention.. all stuff that interests me but that I can only concentrate on for rather short periods.

Eventually..!

Damaged profile image
Damaged in reply to

It is 3:17 am here so insomnia allows for a lot of study time rofl

in reply to Damaged

Eight hours behind us..

My eldest lives and works in Thailand, almost 5.30pm there! LOL

Lyneal profile image
Lyneal

Hi all, I was told by my surgery that I would be eligible for a Shingles inoculation, that it was ok to have on Mxt. I thought I would just check with my Rheumatology helpline nurse, she in turn asked the consultant, he said no I mustn’t have it. If I was to have I should stop MTX for 9 weeks beforehand, but best not to have it. So thank goodness I checked, I have had the same problem with antibiotics. Antoine else had similar.

in reply to Lyneal

Hi Lyneal

It’s a live vaccine for shingles, hence special guidelines.

I would like to get it but obviously can’t either.

OH has been on Benepali for 4 weeks now (added to the MTX he's been on for almost a year) and had exactly this from the GP a fortnight ago. A letter saying can he come for a repeat blood test. When he called to book it the practice receptionist said she thought it was because of a low result but wasn't sure. Cue very anxious few days but turned out that WBC and neutrophils were both 0.1 below the threshold. Rheumy said he wasn't worried. The repeat test was now last Thursday and we haven't heard back from the GP so assume all is well now. I wish they'd let us know though.

in reply to Chickenkeeper2015

Just call for the results. I called Rheumatology Nurse helpline.

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