PMR/GCA and now Pulmonary Fibrosis

[alward]

I am looking for information/advice for my dad who was has had PMR and GCA for about a year. In he last 6 months, he started having a very hard time breathing and they recently diagnosed him with Pulmonary Fibrosis. This is a man who was never sick a day in his life and boom-- one day he's down and out and hasn't gotten back up since. He's been yoyo-ing on the prednisone from 60 down to 15 and then back up to 60 and is now at 30. When he got so low he experienced blindness and the doc jumped him back up.

I'm wondering here if others have experienced pulmonary comorbidities like pulmonary fibrosis as a result of the PMS/GCA and what have you done to improve the situation.

Thanks in advance.

[PMRpro Ambassador]

Strangely we had a brief discussion about pulmonary fibrosis linked to PMR/GCA just a few weeks ago but I think it was on another forum. Other than the person who initiated that and yourself I haven't heard anyone reporting the combination.

How old is your father? It must be very hard for you all to adjust to a suddenly unwell person when they have never had problems before. I do hope the visual problems were just temporary. I think that aspect is very common - most of us were active and fairly healthy until PMR or GCA raised their heads above the parapet!

[alward in reply to PMRpro]

Thank you for the kind words. Yes, it's been very hard...even more so because I don't live where he does. we are in the US and I'm about 600 miles from him. He was sick, very sick, for three months and they never thought about PMR, despite having ever classic symptom, because his ESR wasn't all that elevated. Finally, I got so frustrated I went and got him and brought him to Duke, where I work, and he got a propper diagnosis and treaent. But then he had to go back to take care of his wife with early onset Alzheimer's. He can barely take care himself, not to mention her. I go back and forth as much as I can to check on them and go to Dr visits, but I'm a single mom of a 5 year old and have my mom with me who has a whole different set of issues. Just don't really know what to do. I guess of course maybe one of my 4 siblings could help, but hell will likely freeze over first. Thanks for listening and the encouragement. If you can remember what forum that other post was on, I'd be interested in checking it out.

[PMRpro Ambassador in reply to alward]

patient.info/forums/discuss...

Pulmonary fibrosis gets a mention - but basically it sounds as if your dad may need a higher dose of pred than the PMR itself merits. Since you had to bring him to Duke to get a PMR diagnosis - do you think his current care team are also not so au fait with the problems of PMR and pred? Is it definitely fibrosis rather than any of the other possibilities?

Hmm - common complaint isn't it? The sibling who has the most responsibilities is the one who ends up carrying the burdens. But they'll all be there in the front row when the will is read...

[alward in reply to PMRpro]

Interestingly, he had lung tests done and then a follow up apt with the pulmonologist 2 months later (end of July). But at his last apt with the the rheumatolgist, the doc told him it was "a component of pulmonary fibrosis" but he'd have to talk to the pulmonologist about that. Really? You drop that bomb and that's it? Of course dad had no idea what that meant. But I do. I don't have the heart to tell him prior to the pulmonology apt. He's so depressed and overwhelmed and stressed... between his pain and total and complete exhaustion and then trying to care for my step mom.

[PMRpro Ambassador in reply to alward]

They drop that bomb like that because they assume that Joe Public patient doesn't understand so won't panic - and to be fair, if you had been the patient you would have immediately said whoa, just a minute, can we discuss this now please! He didn't - so their theory was right.

My husband has a bit of fibrosis - most of one lung was removed due to a teratoma 22 years ago (not in the lung, all tied up with it) and what's left is messed up with radiotherapy-induced fibrosis. This far he's doing not too badly, apart from sounding as bad in the mornings as his niece who has fairly advanced cystic fibrosis! But the local pulmonologist is obviously not too bothered so we'll carry on as we are. He's had an infection recently and even slight slopes were out of the question but he's back to "normal" again. If it gets significantly worse/lasts longer it'll be a scooter - maybe for both of us! I was at a rheumaotlogy conference a few weeks ago where one of the other patient reps trundled around with her oxygen set - didn't stop her from flying to the meeting and joining in a fully as the rest of us. And she shamed me by bringing us all glasses of water at one of the sessions - she was amazing.

The bottom line remains: life is a terminal disease. We all have a limited time allocation. Your dad may live many years more and reasonably well if it doesn't progress. Cross the bridges when you come to them - the path may take another direction.

[alward]

Thanks so much

[PMRpro Ambassador in reply to alward]

You look after yourself too - you are the filling in the sandwich and you have to be there for dad and daughter. It's hard - especially when you know as much as you do. Been there, done that 22 years ago with a husband with cancer, barely teenage daughters and a mother-in-law who lived with us. I didn't look after myself properly - don't you make the same mistake.

Good luck.

[alward in reply to PMRpro]

Yeah, I'm worried about that. I feel pretty confident that there's probably some genetic link and with the stress levels... already adrenal insufficiency... I'm a prime target!

Thanks again for chatting with me.

[PMRpro Ambassador in reply to alward]

You are young - you are very unlikely to get PMR or GCA for a very long time.

There's always someone around who'll reply - and we don't care if you are patient or carer - my pleasure.

[Slowdown in reply to PMRpro]

Alward

I echo PMRpro with vehemence - I cared full-time for my parents and aunts for 12 years who all lived into their 90s, two with dementia. You would think I would learn after that, but then a very close friend with oesophageal cancer really needed looking after - he died within a year. I was diagnosed with PMR 10 months later, and regret very much not taking care of myself during all the stress - there is always someone (usually siblings) you can either coerce or 'strong-arm' into helping, don't wait until you feel unable to cope any longer - my problem was feeling I was indispensable. Do take care of your health, I wish you the very best of luck.

[alward in reply to Slowdown]

Thank you. Balance is the key, although that's nearly impossible. I have to find some because I'm an older single parent of a 5 year old. I gotta be healthy enough to raise her as well. Ahhh, I AM the poster child for the "sandwich generation".

Thank you for the reminder and the encouragement. I am trying very hard to "coerce" my siblings into stepping up.

[30048]

I can only marvel at the advice and wisdom shared. It is better than going to a psychiatrist. We all benefit in many ways. Thank you

[alward]

Just a quick update that the stress has quickly gotten the best of me. Spent the weekend in the ER with zoster virus/shingles in my right eye. Unbelievable pain like someone poking me in the eye with an ice pick. Caught quickly enough with no significant eye damage at this point. On high dose pain meds for pain while antiviral kicks in so no work. Likely induced by stress. Perhaps most ironic part is I have to cancel trip to see dad and be at his Dr appointments because he's so immunocompromised he could easily get this. Now I'm no help.

Wake up call though. Gotta find some good stress management approaches. Given my personality and all the drama in y family, the stress won't go away, but, I must learn to manage it better.

Thanks for all the advice and encouragement.

[PMRpro Ambassador in reply to alward]

Didn't see this at the time because I was on holiday and have only just decided to sort these out.

So sorry to hear your woes - how are you now? Considerably better I hope - and that you have also found someone else to step up to the plate and help with stress management.

All the best.