Firstly, I apologise if I am not updating often - I have been in extreme pain as RA now spread to both hands. It has been agonising those of you know who have it. This disease is relentless and cruel.
So here's whats been going on for those interested 😌
- finally had Kevzara - after incompetence of getting them in time. Markers CRP and ESR scaling to 100. Pain in hands 😩
- post injection still in pain, left hand so swollen. Had to travel to work too. Oh developed dry mouth and eyes, no saliva arghhh
- Decided to try Ayuverda medicine. Yes, getting desperate.
- Dont know what happened but my hand had swollen so badly and throbbing pain I phoned rheumy and begged for Prednisone.
- Rheumy called and said STOP ⛔ Kevzara! Blood. White blood cells dropped dangerously low. Despite ESR falling to 43 CRP 7.
- Next step: Need to see a haematologist, booked private next week. As my rheumy does not understand why my white blood cells are dropping so low. He said biologics may not be for me. So next biologic is Abercept! So my sixth 😕
I am back on Prednisone for 1 month! To be honest I am grateful somewhat as got a good night sleep with less pain 😌. Still feel achey and tender.
So my biologic journey continues - hoping I find one that works 🍀
Sending you all blessings and a pain free lifestyle. 🧘♀️🏾
Written by
Hessie5
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Big gentle hugs. I too have problems with white blood count dropping, lowest 1.2 so understand the frustration of that on biologics. I will be interested to hear what the haematologist says. Take care xx
Thanks Sheepish. Mine is at 0.4 (lowest 0.3) so my Rheumy panics and calls me straight away. I shall indeed feedback after visit to hematologist. All the best to you. x
Hi pd118. I tried the cold water, then hot water soak. Felt a tinge better - did not sustain things frustratingly. It appears to get worse bed times then when you awake. Shall give it a go now the Prednisone is kicking in! 😌. Thank you, hope all’s well for you.
Poor you Hessie having both your hands clobbered. My left hand and wrist and left elbow and shoulder are bad but thank God I’m right handed . Did ayurvedic med help at all?
Trying to keep the faith things i know things shall improve. Hope you have a cup of tea as here’s my update 😁
I visited the clinic last week, cost £120.00.
Very lovely lady and clinic. After my initial consultation i was presented with a list of foods I should and should not eat. Along with a set of herbs to be taken before and after eating and before bedtime as a drink.
I don't know what the ingredients were, potent and bitter.
Now she did ask that i don't have my steroid shot I was due the next day, to gauge if it worked.
Now, i don't know what happened or what caused a terrible surge in pain, but i was literally in so much pain all night long. I had to call my rheumatologist first thing - if he was not available was going to the hospital, that bad.
I know it was one day, but weighing the pain element which was on a scale of 100 😩 my hand was swollen up too, I regrettably opted not to pursue, perhaps at least not for now.
I am now back on the dreaded Prednisone. Still in pain but it has shaved off the intenseness! I am looking to acupuncture and yoga next 😌.
That's my experience, although long winded wanted you to get my true experience.
Hope you start feeling better soon hessie5. Big gentle hugs for you xx
I've been on enbrel, abatacept ,both worked for a time then stopped and now on kevzara since November last year and can honestly say it's the best injection for me. . Everything that was swollen and painful has gone, feet,knees,ankles,knuckles,elbows and shoulders are almost pain free and I don't limp anymore,had limp for 4 years .
I hope you get the injection that does the same for you x x x
So sorry to hear your pain and suffering, there’s just no words to say that will ease it. Every one is different, I still think we know what feels right and wrong when we start medications and they all just mask the problem not fix it. I’m sorry you had such a horrid time with alternate treatment, not for you now. Hugs and blessings to you Hessie and I hope you get a relatively restful and painfree sleep and start to feel better soon. Xx
Thanks Daisychain. Everyone is indeed different 😌 life goes on and trying to keep my mind stress free. Hope life is treating you kindly. Blessings always. Hessie x
Sorry you’re having a rough time of it. My hands / wrists are my main problem area so I know how you feel 🙁I have a 22 month old too 😖
I’m awaiting kevzara currently- flare up begun start of March after cimzia stopped working, here we are in July and I still haven’t got the new drug to begin yet ! Talk about slow ! Quarter of my year spent in pain and not feeling myself at all.
This is my concern it’s taken 4/5 months to get to the stage of trying kevzara, I worry should I have issues with it like yourself it’ll be another painful long wait for the next drug option or actions taken.
Sorry for the essay. I’m feeling at a huge loss with my disease and care atm.
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Hoping someone can recommend a rheumatologist who believes you can still have RA even though inflammatory markers are normal.
Help
Normal inflammation levels but still pain & fatigue.
Rituximab and blood test monitoring
