I really don't know where to start

[Amkoffee]

My PMR is back and as bad as can be. I started out at 15mg and am taking methotrexate too. I've tapered to 14mg and I'm now unwilling to budge from this because I've been hit with a list of things that are making it hard. My husband has been diagnosed with stage 3b lung cancer and is not doing well at all. My iron level are so low that I need some infusions which I've had to do before but I'm in my 2nd month of waiting for my appointment. With my husband so sick we've had to close our business so money is tight. I haven't got enough energy to do much more then getting up and dressed. I also suffer from chronic pain in my spine and several joints. I'm seeing a psychiatrist who's got me on 2 anti depressants and even diazepam. I also see a counselor. But I still break down and cry multiple times a day. I know there really isn't anything any of you can say that will fix me but I thought this was a safe place to just vent.

[Amkoffee]

I forgot to mention that due to all this stress my alepecia areata is out of control and I'm losing hair and my husband who is getting chemo hasn't yet lost any!

[Merryfield in reply to Amkoffee]

ok. that hair loss thing isn’t fair. jeez, have you had a rough, rough row to hoe. so very sorry about this fearsome time with your husband’s illness complicated by financial issues. i have found a really big sobbing cry complete with yelling once a day has helped me through hellish — i mean hellish— times…more efficient than frequent weeping, showers can be a bother. i just throw on yesterday’s clothes if I am not going out and sometimes if i am. skipping the bra saves time, too. just wear two shirts and a thick sweater. it sounds like the best thing to do is follow the advice of Dorsett and Pro//that is, take the amt of pred you need to avoid pmr pain, and i add ditto the psychopharmacology meds. lean on friends, ask for help. i can now see my scalp, my hair has turned into floaty cotton candy, and yet my arm hair (not underarm) is more profuse than ever and black. i am 74. it’s supposed to be sparse. only have about four hairs on my legs, and i just let them grow. i tweeze daily. i find hairs growing actually on lip corners and eyelids. when you are on steroids, it’s always a hairy story. the only way to survive these times is hope and humor. hugs.

[random901 in reply to Merryfield]

totally agree re ditching bra and wearing yesterday's clothes! Hairs around corners of mouth particularly painful to remove. Shouting and swearing in the confines of my own home can be a wonderful release. It startles the dog, and the neighbours have been forewarned. Happy New Year!

[Amkoffee in reply to random901]

I did this the other day but didn't realize my husband had come home. He can barely talk and I didn't hear the door. Scared him for sure!

[Bcol]

Hi there, so sorry to read of your problems and not really surprised that all that stress has made the PMR worse. This is certainly not the time to be thinking about tapering and you might even need to think about going up a mg or two if it helps you to cope with all that is going on. I can't comment or help with the medical side but sending lots of hugs and best wishes to you and your husband. No problem with venting here and someone will always be here to listen, reply and help where we can. Take care. 🫂🫂❤️

[DorsetLady PMRGCAuk volunteer]

So sorry to hear about your husband - all my best wishes for him - and agree that no reducing Pred for now. In fact you may need a little more, that’s for you and your doctor to consider, but there are plenty on here that have been similar situations with loved ones- so if a temporary increase is needed then take it.

Always a safe place to rant, and although we cannot help physically we can listen, sympathise and send virtual hugs..🤗

[Amkoffee in reply to DorsetLady]

I see my rheumatologist on Tuesday and I'm going to talk to her about bumping up my pred. She is a great Dr and really listens to me.

[DorsetLady PMRGCAuk volunteer in reply to Amkoffee]

Good, and with your situation hopefully she will agree…

[Amkoffee in reply to DorsetLady]

She wants me to try the drug recently approved for treating recurring PMR. Kevzara.

[DorsetLady PMRGCAuk volunteer in reply to Amkoffee]

Okay… hope that helps..

[suzy1959]

wow! You really do have a lot to deal with. I find myself crying a lot more these days too and actually crying does really help! I do tend to feel better afterwards, I just think we have to get away from believing it makes things worse.

It also sometimes helps to remember that nothing stays the same for long.

I am sending you sympathetic healing thoughts.

[PMRpro Ambassador]

So sorry to hear that - and no, not a lot we can do but a few of us have been there and no exactly how you are feeling if that helps. How unfair - hair loss on top of PMR is unkind and him not losing hair just rubs it in doesn't it!

I needed MORE than 14mg to cope when my husband was so ill. And frankly - I didn't particularly care if it was bad for me. I had to function. These are one-off events you hope and you have to get to the other side of it as best you can whatever transpires.

[Whippetygirl]

Thinking of you at this very difficult time.x

[Amkoffee]

I love the ladies on here talking about going without a bra. I've been doing just that. And it been cold here so I just wear my coat when I go out and no one's the wise. Thank you all for your lovely and thoughtful comments.