I know RA affects everyone differently and I am sure that I am one of the very lucky ones, however I wonder if you very experienced group would mind offering any words of wisdom you might have for me. Quite new to this world, so apols for asking so many questions.
For several years I have been creaking - feet hurting, osteo heberdens nodes on fingers, dodgy hip, knees not quite right... was discharged from rheumatology with a False positive rheumatoid factor of about 120 and all other bloods ok - no elevated CRP or PV etc . The overall issue was not great but not really ill either. I reached a point for 2 winters, periods of about 6 months, when I was hobbling about and not walking an inch more than essential. Went back to the GP and was referred to rheumatology in a neighbouring county and started again. This time the diagnosis was probably RA and I was put on hydroxy. This was in November and I had a winter when I could walk but was not 100%. Went back in February and was told they thought it was RA and that I should start MTX. Three doses of MTX and I decided the "illness" was preferable to the drug - caused the hangover from hell type symptoms. Went back a few months later and was told that I had probable RA, fibromyalgia and sjogrens was also mentioned.
I have a negative anti CCP, a CRP <1 consistently and recently have an elevated PV of 1.87 when it has been consistently around 1.5-1.6.
I have never felt convinced by the RA diagnosis - it came as a shock after being discharged by the first Rheumatologist, the text book symptoms of morning stiffness, flares, swollen inflamed joints etc I have never experienced and when I said this to the rheumatology nurse she said I must be seronegative and consider myself very fortunate. I have taken about 4 anti inflammatory pain killers in about 18 months.
I have taken hydroxy now for a year and the first hint of cold weather and I am creaking again - seems to be as if the "flares" come and go - sore foot for 2 days, hip not taking weight for a few days, knee not feeling right, legs a bit lead like etc.
Things have changed a bit this week - colasped on Friday, ambulance, high blood pressure, high heart rate, 4 days of lying down feeling wobbly/ unstable, very dry skin, bowels, bladder, digestion all not quite normal, fatigue and fluctuating weight. The GP has been looking for reasons and I have 10.9 TSH function which is an underactive thyroid but the GP thinks it is something which comes on slowly and would not be reason for the collapse followed by days of inactivity.
Dr google suggests that my age and profile (female mid 50s) has a 50% chance of thyroid problems on hydroxy after a year which is where I am now, however the rheumatology nurse says not and that I should start thyroid replacement hormones.
Sorry to ramble on for ages! Spent most of the day reading blogs, postings, drug known side affects, diets etc and just wondered if anyone reading might have had a similar experience or able to offer any suggestions.
In advance, many thanks and best wishes.
What do the figures mean on blood tests...get no help from understanding from GP they just say a 'bit' high.- see next blood test :( ?
Where would you say I'm at?
RA, PSA, lupus or what?!
Nodules growing & new ones appearing does this mean RA is still active do you know?
