Since my last infusion, I have to say my flares have disappeared, despite the fact that the daily stiffness and swellings remain, I am really happy at the progress.
The only cross has been my legs which keep swelling up from the knee to the toes. It is so painful and despite various steriod injections the problem remains the same. It took a worse in December 2019 where they nearly burst and I had to be hospitalized. Since then I continue to suffer and walking is just eye watering pain which I try to endure as sitting still is not an option. Finally saw the vascular surgeon who has suggested it is due to the infusions and steriods injections that have cause this build up of fluid and mild varicose veins. His solution: those lovely white compression stockings that I have to wear everyday, from the moment I rise until I go to sleep.
I thought okay well bang goes the pretty skirts for spring. He told me he would get the GP to prescribe another two pairs, and I will be reviewed in three months. Unfortunately, by the next week the Covid-19 took over. The GP closed and they are ignoring their patients and only dealing with Covid patients so I haven't received the other stockings as she says the pharmacist has to measure my legs and they say they don't, who knows. I have left it as there are bigger things going on in the world. I wear the stocking three days, then put them in the wash, leave them and then put them back on the next day. Missing some days as some days my hands are so swollen and stiff it is impossible for me to put them on. The pain in the day is not so bad it is actually bearable and the swelling is not so servere, but the cramping/spasms at night remain the same, disturbing my sleep due to the discomfort. Due to treatments, medication, diagnoisis, I am in the 'shielding' for 16wks is what our Rheumatology department told us; received a letter from them and one from the government. I have said I do have support, freeing up volunteers. My peeps to struggle to get what I need but because this is largely my norm I have a habit of stocking things up for when I can't leave the house for weeks at a time which has happened, so I am not currently struggling.
I do worry about people who are older and alone, I truly pray they are getting help as well as people who are unwell or living with underlying conditions and can't get out, I can only hope and pray those people are being helped. The NHS have been first class!!! I am sending everyone positive vibes and the very best wishes. LOts of LOVE
Tapering off Biologics two years later
Tocilizumab Infusions/Injhections
stopping humira after cancer
To Toc or not to Toc? That is the question 
when will this flare up calm down
