I recently commented that my rheumatologist said I’m in remission. After 6 weeks of my last infusion. I started to get dull headaches and ear pain. I waited the 8 weeks and my ESR had risen but was still in normal range. He still said I’m in remission because of the bloodwork. I got an Actemra infusion and felt better immediately. This time I didn’t last even 4 weeks before the pain started again. I messaged him and said I didn’t care what my bloodwork shows. I have a constant headache and ear pain. He reluctantly said to go back to 4 weeks. I’m actually getting confused about this. My pain is not severe but it’s definitely there and extra strength Tylenol doesn’t help. I took a walk today and worked outside in my yard. I’m not incapacitated in any way. I’m afraid of letting this go and possibly turning into a full relapse. Am I correct in wanting to continue on Actemra? Believe me, none of us want to be on these drugs but I’m not feeling normal with a headache always in the background.
Doctor reinstated infusions every 4 weeks instead... - PMRGCAuk
Doctor reinstated infusions every 4 weeks instead of 8
But you don't appear to be in remission - and since there is no way of assessing underlying disease activity, neither is your rheumatologist able to say that definitively. It seems strange to me to jump from 4 weekly to 8 weekly so suddenly - why not add a week (or less) at a time? There are follow-up studies that show relapses once patients are off Actemra. If the ESR is rising, then the Actemra effect is falling off. It doesn't matter it is still in normal range - it is rising. Normal range isn't a range for a single person, it is a range that covers 95% of a large population of nominally healthy subject, usually something like 10,000. Not the same thing at all.
I am so impressed with these rheumatologists who seem to have crystal balls. I wonder where they sell them?
Perhaps they get them at their degree ceremony😳…
With a big ribbon tied round them!
Better sue the Unis then ...
😉
To continue on this thread, the hospital called me today and scheduled an Actemra infusion for this coming Monday. My doctor changed my orders to every 4 weeks again. That’s such a relief to me.I can deal with the discomfort if blindness wasn’t a possibility. The stakes are too high for this illness.
Good to hear you are getting infusion next week….let’s hope it helps….but as the last one didn’t last as long as previously, suggest you Rheumy needs to think again about your so called ‘remission’.
I think some drs get their degrees & crystal balls via affirmative action &/or rheumy dr shortage in the USA. Hippocratic Oath is optional, nowadays.
My joint destruction is obvious - very visible on hands & feet & on X-rays (it continues) & I am told my inflammatory markers are normal, even though RF was initially >2000 (normal below 14).
I have been told everything is "under control". Rheumy just looks at my hands - I insist a look at my feet. So I'm to just accept the pain, discomfort, joint destruction & disability..,. 5 different rheums later.
Was sick & had to cancel appointment- now can't see me for 6 mths.
They couldn't care less. And I have excellent medical insurance. They're all about easy hours & big money. I give up.
It beggars belief… or not, unfortunately 🤨
I think there's a band of Rheumatologists that make and award them to themselves.......they are arrogant enough!
🏆🏆🏆🏵️🏵️🏵️
Think they will lead with AI........Arrogance/Ignorance......
I think a robot (AI) would have provided me with a better RA treatment plan. 😳
My sister has RA and is better than I am, have you tried different DMARDS?
(USA) Been on all dmards & 2 bios, & Rituxan infusion. Terrible side effects & no relief. I had asked for a JAK, early on & was told that $8,000-10,000/mth (30 tablets/mth) would leave me a $2,000/mth copay.
I have good medical & RX insurance. Rheumatologists never told me about JAK manufacturer co-pay assistance programs & so they did not prescribe me a JAK.
I was dying from severe RA, when a kind pharmacist intervened & got me into a program from JAK manufacturer. She saved my life, but severe damage already done.
The rheums did not put me into the JAK program because they were too lazy & cheap to take the time do the paperwork (or have a nurse do it). JAK manufacturer was glad to help because they still get $8,000/mth. The kind pharmacist was a Good Samaritan. Life is often a cruel teacher. Damage done. I could have been in remission 10 yrs ago. My life is ruined. I have given up.
P.S. There are specialty hospitals (like John Hopkins & UofM) in USA that treat severe RA & autoimmune diseases as priorities - not 1 rheumy referred me for treatment there.
l'm really sorry to hear your story, but please don't give up!If you were in this country we could suggest other Rheumatologists. This might be a silly suggestion, not being in USA, Is there no way you can go through to a speciality hospital yourself and see what they can suggest.....
Keep us posted....good luck.....
Thanks for your reply & caring. Now that I'm on the JAK, I can function again; but joint damage done; cannot be undone....
I am educated & polite; had a good career, when sudden onset RA hit me like a "sledgehammer". I posted my story to showcase what can happen to nice people, if they trust the "new breed" of medical professionals (that are very well-paid here (USA) for their expertise).
I even acquired MRSA while hospitalized for GCA- & the med staff - couldn't wait to get rid of me- because the hospital was being fined for hospital-acquired infections. So I was discharged half-dead.
P.S. We have CNAs here (USA) that get medical certificates in 4-8 weeks- who don't even know the metric system.
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