LizzieR5 years ago

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

Hidden in reply to LizzieR5 years ago

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!

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LizzieR in reply to Hidden5 years ago

Oh, the endless testing...

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Damaged5 years ago

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.

Hidden in reply to Damaged5 years ago

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.

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Damaged in reply to Hidden5 years ago

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

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Hidden in reply to Damaged5 years ago

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.

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Damaged in reply to Hidden5 years ago

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

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Hidden in reply to Damaged5 years ago

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..!

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Damaged in reply to Hidden5 years ago

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

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Hidden in reply to Damaged5 years ago

Eight hours behind us..

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

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Lyneal5 years ago

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.

Hidden in reply to Lyneal5 years ago

Hi Lyneal

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

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

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Chickenkeeper20155 years ago

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.

Hidden in reply to Chickenkeeper20155 years ago

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

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