Mum was diagnosed with Rhumatoid Arthritis approx 2.5-3 years ago. She is now treated by Retuximab Infusions, but previously had Methatrexate. Her breathing has been bad for many years but deteriorated since the RA, so she has been referred to a specialist at a Centre for Excellence - this appointment is in 10 days time.
In November last year Mum was hospitalised following flu like symptoms that left her breathless. During this stay her Dr said she had COPD/Fibrosis and discharged her after 10 days on 10litres of o2 for 4 hours a day. - no follow up care arranged.
She has continued to deteriorate and struggle with her breathing, so, concerned about her I brought her to stay with me. I was able to monitor her o2 levels on an oximeter after bringing one home and was horrified to learn her average was 84%. I phoned for advice and this led to her being admitted by ambulance. 4 days on she's still in hospital but this time we have been told that she has ILD, probably caused by the RA, and that this was diagnosed in Sept 2015, though this wasn't communicated to my Mum. She has a new o2 prescription of 4litres 24/7. Her typical stats are 80/65 BP, and 87% o2 levels.
Her breathing is not improving. When she's sat, it's manageable but as soon as she moves her hands go blue and her breathing is awful.
Is this atypical of a treatment pathway in your experience?
Written by
Cazchapp
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My question to the doctors is there any degree of heart failure? I have idiopathic pulmonary fibrosis and I am on oxygen 24/7 now I also drop in the upper 70% to lower 80% while I’m up and moving around however I recover in a reasonable amount of time once I’m sitting again.
I'm sorry to hear about your mum's situation. I also have Rhumatoid Arthritis, Sjogren syndrome and Raynaud's disease. All of these are related to each other. I was diagnosed with RA nine years ago. Three years ago I was diagnosed with Bronchiolitis Obliterns a rare lung disease caused by RA.
My current treatment for RA are Infliximab infusions and Methotrexate along with Loxonin for pain and inflammation. I am on the transplant list waiting for a new lung.
Your mum's oxygen level continues to be below 90%. Normal pulse oximeter readings usually range from 95 to 100 percent. Values under 90 percent are considered low. This may be something you should bring up when you meet with the specialist.
I have inhalers but I am not sure they help me much. I also get out of breath upon exertion. I am on steroids 24/7 (Predisone) , antibiotics, and anti viral medication because my immune system is very suppressed . Montelukast is a medication I take to prevent wheezing and shortness of breath . I am on ambulatory oxygen at two to three litres.
I must add that this time of year is typically harder for me and many of us with lung issues. Depending on what kind of lung disease your mother has, treatment may vary.
Please make a list of questions to ask the specialist. I hope they will run tests to find out more about the condition of your mum's lungs.
I must say I am surprised your mum wasn't informed of her RA diagnosis immediately. Usually, prompt and aggressive treatment is introduced early on to prevent bone deterioration and counter inflammation.
I am sorry if my message is rather disorganised. I am currently feverish and nothing I do seems to make any sense. 😊 In fact my whole day has been a debacle. 😂
Please do keep us informed. We would love to know how you and your mum are coping.
Thank you for taking the time to reply, especially as you’re feeling unwell. Mums RA was communicated to her it’s the ILD that wasn’t. Your response is very helpful in providing me with information and questions to take to consultant. I do hope you are feeling better soon & I will keep in touch .
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