Hi All,
I have previously posted and discussed my farthers condition over the last 12-18 months. From my posts my family and I have been provided some priceless information and experience of the horrible condition R/A / PMR. After another failed attempt of Humeria @ the turn of the year, he was admitted to hospital by his GP for presenting as very unwell again, minimal body movement, CP 140, high temps, severe pain & sweats. At this point his rhummy was aiming of getting him off the pred and he was down @ low dose 12.5.
Based on the ambiguous outcome of his previous four admittance to hospital we requested that he was admitted to a different hospital that had a R/A ward, this meant that we could be cross reviewed between disciplines as an inpatient instead of being discharged for follow up as we have in the past.
After six weeks in hospital, following extensive investigations between R/A - Neurological & many others he was discharged with a working diagnosis Vasculitis responsible for Neuropathy secondary to R/A. We are waiting on a follow up for then outcome of a nerve biopsy and PET scan evaluation. The tactic they used was different to the previous hospital, they decided to reduce steroid from 12.5 – 10 – 7.5 to see how he presented daily and did not intervene with anti-biotic until his knee swelled up with infection on week four of the six
The outcome:
Treatment:
For immediate boost 500mlg Steroid intrusion, worked fantastic for 3 days & then he was back to default (Bed bound, poor movements & pain, is it good to have a high and low so soon?
For working diagnosis Rituximab intrusion (8 hours) spared with 250mlg of steroid intrusion (New dug to us, any comments welcome)?
Continue with 10mlg of Pred
After three days he was again back to default mode and after calling the hospital they advised to up pred to 20mlg which has slightly improved his position although not to a point that we know the steroid can get him
He has the next infusion Rituximab planned for tomorrow, at this appointment we will be requesting that we up his pred to a quantity that provides a good standard of life (From past data we think this is around 35-40) and then reduce in a month when the Rituximab may have strted. If we don’t do this then he may lose another 12 months of his life hoping something works like we have done with the Metex & Humeria.
Personally, I believe that this latest admission has identified that his condition is still very complex, his treatment plan may or may not works and that steroid gives him his life back when he has the right levels. Unfortunately he has only been on this level for around one month in the last 16-18 months and this has meant that his, and our lives have not been at the standard that you normally take for granted !! Without sounding selfish, I think five years on steroids living your life is much better that 10 years of living in your bedroom?
Again appreciate you comments and support, not sure on my focal point to this, maybe steroid + -
Ryan