We have recently been back with the consultant with my dad who is being treated for R/A / PMR. He would like my farther to go back on Humira & MTX and come off his current 30mg pred. We raised a concern with tis due to my dad being hospitalised twice with sepsis infection 12 days after his first trial of humira and 5 days after the second trial 2 month later.
Based on the fact that my farther has had no R/A - PMR pain for over 3 months (Only fatigue) we suggested that he reduces the pred without other treatment and see how he goes. Reluctantly the consultant agreed with this and proposed 30-20mg from Monday - 20-15mg 2 weeks later 15-10 2 weeks later 10-5 2 weeks later.
When we questioned the reason he would like us to go on with the Humira we were informed that his CRP rate dropped the first time he had Humira and since has raised back up.
My question is, obviously something is controlling the severe pain which he previously had for over 10 months until his pred went up to 50mg in July. If the pred was controlling the pain why would the CRP rate be so high when he has no pain (Could the ESR level be high for other reasons away from the R/A PMR) And would it be normal to use the CRP / ESR data over pain symptoms when analysing and implementing treatment plans.
Tanks again, massive support for our family
Ryan
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Sonofjimmy
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Good to hear you are finally getting some answers for your Dad.
The only thing I would say about the reduction plan is - it's obviously quick time-wise and big tapers so your Dad will have to expect steroid withdrawal symptoms at the very least, and if the PMR is still there(??) a return of some pain, and probably more fatigue...none of which is pleasant, but a means to the end of Pred maybe. Or is he intending staying at 5mg?
Unfortunately the CRP and the ESR (in particular) readings can be affected by inflammation caused by other things than PMR and/or RA, and sometimes not raised at all, which is why we always say that the symptoms are the key. I think the CRP readings can be affected by the liver as well, but I'm sure PMRpro who knows much more about this will advise idc.
They want to see him again in four weeks to analyse the reduction and see about the 5mg.
I asked a direct question in regards to what data he was evaluating that provided the outcome of Humira based on the fact that my farther has had no pain or visible R/A PMR symptoms since July. This was when he showed us a graph of the CRP rate which showed consistent improvement with the first Humira and also an ant biotic treatment for a stomach infection?
We are hoping that he can fight through the recent infections and blood clots without the pain and maybe whatever he had may have gone into remission!!
As all cases, very complicated and not easy to evaluate
Another positive, they performed a PET scan while he was in hospital last week and up to now the initial feed back has been good with no significant findings. (Would any PMR / GCA / R/A show on a PET scan
“This was when he showed us a graph of the CRP rate which showed consistent improvement with the first Humira and also an ant biotic treatment for a stomach infection?”
CRP would be expected to fall assuming the appropriate antibiotic to deal with bacterial infection. (I believe in neonates, leukaemia, and probably other stuff, a CRP is taken to check efficacy of AB therapy and judge when a course might safely be stopped.)
How can he state the lowered CRP was due to Humira and not AB?
I know nothing about Humira, my first google hit gave me “There is an increased risk for developing serious infections with Humira, including tuberculosis (TB), bacterial sepsis, ” from here rheumatoidarthritis.net/tre...
Oh and ESR can be high for many reasons (‘old age’, anaemia) and is a non specific test and can only be judged along with clinical exam and medical history.
The thing that worries me a bit is that Humira is an anti-TNF drug that has been shown not to help in GCA (hardly a high powered study though) and they are actively warned against in the most recent recommendations for management of PMR. The new recommendations for GCA still don't seem to have been published - but PMR and GCA are so closely related I would have thought it wasn't a good idea.
It seems ill advised to me to chuck in another unproven drug, which may or may not have been a cause of sepsis. Currently it appears a period of pain free stability has been reached, with blood markers not quite tallying with the clinical picture. (family see him a lot longer than the consultant visit, so their input is vital, as is the patient’s wish for aggressive treatment OR a period of peace! What does your Dad want?)
Has anyone suggested blood cultures to see if there’s a rumbling infection causing the blood results? Identify the REAL cause of CRP/ESR rise, don’t go blindly prescribing something with known increased infection rates. Sepsis is a killer, and you don’t recover from it after a few weeks! To have had it twice in such a short period of time and to have survived is quite something. I know I wouldn’t knowingly go back for a third try!!!!
Blood curing was carried out and identified salmonella as the bacteria causing infection. Without going through the full detail, since July (in order) he has had shingles, sepsis, pneumonia, blood clot in his lung and leg and sepsis again. Thankfully throughout this his R/A - PMR pain he had for the previous 10-12 months was not around and has made dealing with all this easier for him.
Obviously with all the above he has huge fatigue issues but is showing signs of improvement
He would normally do anything the consultant would advise us, however this time he reluctantly allowed us to question to instruction to start the humira and MXT again based on what we see as a concerning trend with Humira & infections
If he would be struggling with thee pain we would have no choice but seems he has non, it seems the most logic plan to try and drop the pred without supplementing
Just make sure of blood cell white count check it ~ there m ight be a case for an anti inflamitory shot ~ this is the reason PMR is misdiagnosed ESR test should be 30 - 40 in particular look at white cell count
Just a quick update, dropped from 30-20 on Monday morning so far no pain just the same fatigue. Noted everyone is different and pain could return any time, however what would be the common timescale for pain to return post reduction?
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