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
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Sonofjimmy
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Your father’s treatment and condition is fiendish to follow and interpret. Well done for doing just that. I agree with your interpretations. I hope to goodness that the infusion of Rituximab is the right thing for his poor body. The stress on you all must be unendurable. One longs to simplify all of this. I have nothing to offer by way of advice. Just my sympathy and try all of you to have days when your dad’s state of health is not on top for everyone. A pleasant little mental break for you all is called for. Try to have it, in the free fresh air and sunshine. 🌸
Wow! What a nightmare... I am so sorry to hear that your Dad and your entire family has had to endure this. I echo SheffieldJane's comment; you all need a "break." Physical, mental, emotional... all three sounds ideal! I will keep all of you in my thought and prayers and know that things will get better!
What a nightmare you’ve all been through...I do hope you get some positive results from now on.
And yes I quite agree 5 years on steroids living life is better than 10 years in your bedroom!
It’s the quality of life that counts!
Best wishes to all of you.
Hi Ryan
Your families determination to get your dad a fulsome DX and effective treatment is to be admired. I know it is soooo wearing for everyone and frustrating to be back at square 1 so many times. I hope there is some stability soon.
I totally agree with the idea of quality over quantity. I work on the basis that for all its POTENTIAL faults, pred gives me a life. Being housebound isn't fun and bedbound even worse. I will be keeping my fingers crossed that you all have a rest and some quality family time. 🌻🌻
P.S. re neuropathy if in feet. Nice sheepskin slippers a size larger helps around the house, but obviously check not too big- afraid you will have to check that sizing as feet not good at feeling if correct if you have neuropathy. I have got faux ones and very comfy (am veggie) and cushion sore toes.
Try and get socks without toe seams and cream feet regularly if touching them is ok. Makes a big difference.
Oh my goodness, Ryan - I had 4 months in my bedroom so just can’t imagine what 10 years must be like. Your father’s poor body is taking a battering and what a horrid knock-on effect this must have on all of you. Let’s hope the nerve biopsy and PET scan lead to a definitive diagnosis and positive treatment. Meanwhile, with the vasculitis element, have you tried posting on the Vasculitis Forum - some very helpful people there? Your Dad is blessed to have you - hang in there just a bit longer for those latest results and, hopefully, your Dad will be out of that bedroom soon.
Well 12-18 months being left with an uncertain diagnosis or a treatment regime that works is bad enough! Heaven help anyone who was ever left like it for 10 years!
"I think five years on steroids living your life is much better that 10 years of living in your bedroom?"
Absolutely. QOL is all.
If you want to know more about Rituximab in vasculitis try the VasculitisUK forum - it is commonly used in vasculitis of various sorts i think and also has beneficial effects for some patients with other a/i disorders.
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