9 years PMR and counting!

[AussieKid]

Hello all, firstly, I cannot express my gratitude for this site well enough. It has educated me, waylaid my apprehensions and relieved my moments of aloneness - thank you all.

My background is ICU nursing and then psychologist in private practice specialising in aged competency issues, head injuries in younger trauma cases and providing legal reports to the courts.

In 2014 I was finally diagnosed with PMR and GCA in 2018 and shortly after I developed lung fibrosis around the time I was put on Actemra. The subsequent mucus in the lungs rapidly cleared when I adopted a gluten free diet and minimal wheat (which always did bind me up!).

My most compelling issues now are the fairly rapid deterioration in my joints, hip replacement 2014, fractured pelvis 2015, rotator cuff repair 2022 and now spinal fusion 2023 with bilateral knee replacements in the wind.

My younger sister was diagnosed with PMR 8 months ago and is struggling with rheumatoid like changes in one hand. Massaging a collegian type product into her hand has helped reduce the swelling but not stop it.

My pleasure pursuits are caring for grandchildren, gardening and lunching with friends.

[SheffieldJane]

Hello and a warm welcome to posting on the site. It is a good place for your specific questions. I haven’t looked but do ensure that your personal profile has lots of detail about your health concerns.

Has any medical connection been made between your lung fibrosis and Actemra, this would be my first question. Are you still taking it?

Jane x

[AussieKid in reply to SheffieldJane]

Hi SheffieldJane,

Re any connection between Actemra and Lung Fibrosis, the question was raised and discussed at a Melbourne Respiratory meeting. The pattern of Fibrosis was considered consistent with a toxic episode. The fact that I stayed on the drug for 12 months did not help despite the suddenness of severe SOB and continued lung congestion. Since then, there has been no progress of the Fibrosis condition and the congestion has all but cleared with a gluten free diet. At this point in time no one is prepared to say that Actemra and Lung Fibrosis are associated or causative so I suspect this will be the interpretation until more data comes to light.

Take care, thanks for your interest.

[PMRpro Ambassador]

Hi and welcome.

Obviously, given your post - are they SURE it is PMR and not LORA/EORA (late/elderly onset RA)? Not because of duration but the other bits,

And if you haven't already done so, do put a copy and paste of this post on your bio. All that detail really helps us.

[AussieKid in reply to PMRpro]

Hi PMRpro, I have been fully tested and X-rayed for rheumatoid indicators and all has been clear. The same result for my sister. This despite having had an aunt with late onset rheumatoid arthritis. Thanks for your interest.

Can you comment as to why some doctors fail to read or register pathology reports. This was the case for me. I have seen reports that 85% of doctors don’t read their reports! Some pathologists are requesting to be allowed to send reports directly to patients.

Thanks for your interest.

[k-pac in reply to AussieKid]

K-pac. I developed lung fibrosis after taking methotrexate for 2 years. No further progress with the fibrosis since I stopped it about 18 months ago.

[PMRpro Ambassador in reply to AussieKid]

No idea - depends on where they are probably. In the UK at least, lack of time and delays in receiving the reports would be likely excuses. Here where I live I am able to get the report myself and in a timely manner. In fact, I have to either collect it within 90 days or request it be sent to the doctor or I have to pay for it even if entitled to an exemption. I suspect that is to catch the Italians who like to get their holiday MOT while they are here!