Had a planned, phone consultation with my rheumatologist today. This one is important because I have my Cimzia signed off for another year. I had a blood test 10 days ago so that my bloods were up-to-date.
Unfortunately, my inflammation markers have more than doubled since February, when they were already not at all great. I had to stop my meds (main ones: mtx, Cimzia and sulfasalazine) back last December, because I had a bad chest xray. I flared terribly over the next 3 months. I was able to start meds again mid -March. So the Feb ones were full mid-flare!
My ESR is now 120 and my CRP is 92.6. I am sore and swollen - that's for sure.
Consequently, I now have to have a face-to-face consultation asap at my hospital 😷before she will either continue my current meds or make a decision to change them 😒Can't say I'm looking forward to going into hospital or changing my meds.
My red blood count is on the low side too, which would explain my exhaustion.
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Moomin8
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Sorry you're having such a bad time. Hopefully your rheumy has a good plan for you. Its always very difficult when infections come on these drugs, same thing has happened to me so I've been on off on off treatment all this year. I've been left on profilactic treatment for 6 months to see if it does the trick.
When you go to the hospital everyone will be in Protective equipment (mask, gloves, apron) so try not to worry. Just keep washing your hands.
Let us know how you get on.
In the meantime try ice packs or very cold water for your joints. Take painkillers regularly to break the pain cycle and anti inflsmnatories if you tolerate them.
Thank you for your kind words Kikideelili 🥰I am on antiinflammatories (etoricoxib) and take paracetamol 4 times a day. You sort of get used to the pain tbh. I'm lucky to be at home -not at work - atm due to shielding, so I can fashion my day, depending on what I can do.
Sounds like you could be anaemic so you could be give some iron tablets. I take a thing called Spatone to try and keep my iron levels up. They are often borderline most of the time. Write down everything that hurts and all your other symptoms to show the rheumy when you do get to see them. Hugs.xxxx
It's likely that the inflammation is keeping your blood count lower as that happens commonly. But do pay attention to your diet at this difficult time for you and make sure it contains both vitamins and iron.
I do hope that they can help your body get to grips with it all!
It sounds as if you’ve been left too long with uncontrolled RD.
A proper consultation should get you started on a plan to address this and on the road to improvement.
I will have a face to face consultation soon too, although in the shielded group. I will wear a mask too. Both parties wearing a mask does help a lot with reducing inflection risks.
So sorry you are having such a awful time and for so long too. I hope your face to face appointment comes soon so you can have a way forward with your medications. Thinking of you. x
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Do I need to phone my consultant?
What a difference a phone call makes !!!
How often should I see my consultant rheumatologist? 
Telephone ‘consultation’
Advice on rheumatologist
