I’m still here!

[Lanakay]

I was diagnosed with PMR in September of 2017. I started out on 20 mg prednisone. For the last year or so I have been down to 1 mg. My rheumatologist doesn’t seem concerned about that. I have since been diagnosed with herniated disc and degenerative disc. I am currently taking my 1 mg of prednisone, duloxetine, and 650 mg Tylenol. I certainly am not painfree but I’m living my life. I’m still working at Chico’s, a women’s clothing store 2 or 3 short shifts each week. My husbands health is now failing so I am looking after him.

When I was diagnosed in 2017 I was led to believe this would all be over in 2 1/2 years. I didn’t know then that as we get older we just have to pull up our big girl panties and get on with life. It took me a long time to adjust to this but I’m ok. Thanks to this group for keeping my courage up.

[PMRpro Ambassador]

Sounds as if you have things pretty well sussed out!

[Lanakay in reply to PMRpro]

I think it’s just learning to live with what is. I’m soon to be 77. There is no magic going to make me feel 35 again. Time marches on. My husband has very serious health problems. I think I just had to learn to celebrate what is. My children and grandchildren are wonderful.

[PMRpro Ambassador in reply to Lanakay]

I think you are absolutely on the nail.

[Merryfield]

Good for you! I love Chico’s. I am in So Cal.

[SheffieldJane]

You are a fighter!

[powerwalk]

🌷yes 2 years my eye!!!!🤨.

[Greensleeves]

It’s about time they changed the information.

September 2012 mine started, I know other’s have been much longer.

I do wonder if I’d have been off steroids long ago if my rheumatologist hadn’t told me to stay on a maintenance dose of 5mg .

Anyway I think much of it is stress driven and I’ve had a bucketful of that this last 13 years.

You’re doing wonderfully well, I am sorry your husband is unwell, that’s not going to be good for your PMR , but your mind is well adjusted and seeing life for the rollercoaster ride that it is . Take care

[DorsetLady PMRGCAuk volunteer in reply to Greensleeves]

It’s about time they changed the information.

There are a few better informed Rheumies etc trying to do that -but whilst there are patients that can and do get through PMR in a couple of years it’s always going to be difficult to change the mindset of the majority and therefore the information circulated.

Plus you must remember those whose PMR is gone within 2years aren’t likely to need this or other forums -so we probably don’t get to see the true picture. Just those patients with problems.

[Greensleeves in reply to DorsetLady]

Good points DL , we are probably seeing those non text book cases , plus people wanting advice when newly diagnosed.

I do know a nurse friend who was diagnosed and off pred within 2 years.

[MiniSpec in reply to Greensleeves]

Wow! Lucky her. It's been 14 years and counting for me, and I'm still on 3mgs and slowly trying to reduce.

[Greensleeves in reply to MiniSpec]

I know , some people are just lucky, my doctor said she gets her patients off in 2 years too .

Makes you feel like a lesser person when you hear that. .

You’re doing great on that low dose Mini. x

[DorsetLady PMRGCAuk volunteer in reply to Greensleeves]

You shouldn't feel a lesser person, but I know where you are coming from...

The problem is not many doctors realise there are variants of PMR...

YOURS is YOURS, not mine [well mine was GCA but you get my drift], not your friend's, not another of their patients... the sooner they appreciate it's not the same for everyone the better...

we live in hope, if not expectation. 😊

[Greensleeves in reply to DorsetLady]

Thank you DL , such true words and I feel awful after your GCA experience and losing your husband.

You’re still here like PMRpro helping others when you can.

Bless you for your humanity, common sense and goodness. xx

[PMRpro Ambassador in reply to Greensleeves]

"my doctor said she gets her patients off in 2 years too ."

Nothing to do with her if they get off in 2 years - there is nothing she can do to get them off quicker except maybe decide it is fibro not PMR so pred doesn't work. Or insist the left-overs are old age and not PMR and leave them to suffer, which many do. Or her patients vote with their feet and find someone better informed and compassionate.

[Greensleeves in reply to PMRpro]

I thought this PMRpro , those poor old folks suffering because she has this record for patients recovering from PMR within 2 years. It’s not her achievement , it’s the person , as DL said.

I do feel sad for some of the elderly who are afraid to speak up , or understand they possibly still have PMR . They’re schooled that the doctor is always right and you don’t answer back or question .

I think she’s on the spectrum to be honest, I won’t see her .

The others are thankfully very good and more caring.

Thank you for all you do , you are wonderful .

We selfishly couldn’t manage without you and know things are far from easy.

I’ve just been told I’ve got to have cataract surgery.

The joys this year are bountiful …. not !

At least I’ll be able to see , that’s a positive.

Thank you PMRpro take care xx

[PMRpro Ambassador in reply to Greensleeves]

Strange to find a rheumy who is on the spectrum - they usually go for surgery or pathology to reduce the interactions with awake or live patients ...

Thankyou

[Greensleeves in reply to PMRpro]

I remember having a dental cyst removed at the local hospital in the Maxillo Facial department.

I’d never had a fear or qualms about dentists, having had dental implants and bone grafts after an accident.

The consultant marched across, said “you’ll be used to this Mrs so and so “ , and stabbed the injection like a knife into my gum below the nose .

I nearly banged my head on the ceiling , it was so intense.

He then proceeded to carry out his work in a very painful manner.

My face and eyes were black and blue afterwards, thus proving his heavy hand . I told the nurses it was horrendous.

They said he’s used to operating on patients who are under general anaesthetic , so you’re treated like a piece of meat .

One way of putting it , but it makes sense why those on the spectrum choose those jobs . Less chat and interaction with people.

Coming back to recent events, after my doc had said how she was brilliant with PMR patients, she was still talking, I thought to me , so I tried to make conversation back.

She said “please be quiet I’m speaking into my dictaphone “.

Rude or what ! I had a giggle to myself.

Thank you dear PMRpro for all your selfless goodness. xx

[Gossiplady]

Hi Lanakay! Good to hear from you. Builds confidence in us that there is light at the end of the tunnel. Nice to hear you are well enough to look after your other half. Keep smiling.

[Brooklyn747]

My G.P. also told me emphatically that P.M.R. us a disease lasting 2 years and I believed her!!She who treated me for fibromyalga for months because my inflammatory markers weren't elevated.

Repeatedly I told her the medication just wasn't working, then when my 3rd blood test showed a high C.R.P. and E.S.R. she finally prescribed prednisone.

If only I had joined this wonderful group earlier 😢 Again many heartfelt thanks to our Ambassadors who help us enormously.

[yogabonnie]

where in the US are you_?

[Lanakay]

I am in eastern Nebraska.