Rheumatologist wants me to what??

Ok here in Northern California there is a huge shortage of rheumatologist. My doctor has just cut his week in half. So I have him and no options.

So I am having a flair at 10mgs. And instead of staying put he wants me to go 7 1/2 mgs. I had new lab done on Monday should know the result tomorrow. My crp has not been higher than 14 in over a year. So he says my normal is 14. Instead of recognizing my left leg and hip and groin with both shoulders is not too bad. He actually gave me a lesson on how to use a cane and said I should start using it.

I will drag my fat butt on the ground before I give into a walker or a cane.

My elevated crp of 24 is most likely from my mini surgeries of melanomas off my face and back he thinks.

Well I will know tomorrow and will take what I need as I don’t see him for 2 months. What he doesn’t know is I have at least 500 5 mgs tabs. I won’t be running out anytime soon.

I wonder why I want to laugh. Oh I must be sick. 🦉. Or I just pictured dragging myself around.

I have figured how to not have pain. First you get into a really nice recliner, elevate your feet and simply don’t move until you have too. Well it works for me.

Hope all you fellow Pmr ers have a great day.

Oh my idea is to go up 1mg at a time instead of going to 20 again.

Will let you know how it works,

🙀

[scats]

Love the sound of your recliner, I could do with one of those in my life!

Don't be so keen to write off using a cane, mine has become a good friend and not just for walking. Why not find a second hand one and decorate it to match your style ( mine has spots ). That way others will envy you rather than pity.

[Hidden in reply to scats]

I actually have a cane. It is fancy red n black with a nice handle and It breaks down to three pieces. I got it when I was really bad in 2016 and living in the awful tower on the 14th floor.

I can’t seem to get the hang of it. When I get really bad I use crutches those I can figure out.

Around here my friends are brutal when they see someone with a new walker. Ok they are not that bad but I am the youngest in the group and the one falling apart the fastest.

They are great buddies tho and are very kind to me and understanding.

I will practice around home as I don’t want my hip to go.🧐

I just realized I made myself this great walking stick. I will have to find it.

[Hidden in reply to scats]

Ps I don’t know how anyone can live without a recliner. Mine cost $349.00 which is way on the cheap side but it has served me well.

😴

[Constance13 in reply to Hidden]

I’d rather use a stick, walker or anything else rather than run the risk of falling and breaking a hip!!!

[Hidden in reply to Constance13]

Ok so I guess from all the responses I should use the cane, as I seem to trip and fall too easily. I do have a nice walking stick I made so will see what is the most comfortable.🧐

[scats in reply to Hidden]

Recliners are such big things and rooms here tend to be small, shame really.

[Hidden in reply to scats]

My apt is not too big and even if it was a tiny house they would have to build around my chair. It would be miserable trying to sit in a regular chair for hours on end.🤪

[stellafmdm in reply to scats]

I use a garden chair, with a big fat soft cushion. Very comfortable and doesn't take up so much room!

[scats in reply to stellafmdm]

good idea we've got one of them.

[PMRpro Ambassador in reply to scats]

I have a zero gravity reclining camping chair - cheaper and only takes room when you use it as it is foldable!

[scats in reply to PMRpro]

One of my main problems since PMR is falling asleep in my chair, something I've never done before . Don't you think a reclining chair would make things worse?

Mind you anything called ' zero gravity ' is instantly appealing!

[PMRpro Ambassador in reply to scats]

That does improve - I could fall asleep sitting up for Britain before pred (all 5 years of it) but it only happens very occassionally when I've been doing too much now. Anyway - if you fall sleep - you need it!

[piglette in reply to scats]

I have a zero gravity chair which is French and I use it outside. They are absolutely brilliant.

[PMRpro Ambassador in reply to piglette]

Lafuma?

[piglette in reply to PMRpro]

Yes absolutely fantastic. I actually now have two, they are a bit pricey but much better than most of the others.

[PMRpro Ambassador in reply to piglette]

Mine is ancient and a sod to put up, it always was. Probably needs a consultation with some WD40 ... But I gave it a present a couple of years ago - new suspension cords

[piglette in reply to PMRpro]

I use WD40 on mine every year which works pretty well. The only problem is next door’s cat sleeps on my new one and has abandoned the old one. The chair is navy blue and the cat is ginger and white with hair that seems to fall out continuously. My beautiful new chair is now mottled with cat hair.

[Jeannie29 in reply to Hidden]

I don’t have a recliner, maybe that’s why I’m stuck at 10mg. Definitely made me want one tho, and there a some really chic walking canes around, and better than chancing a fall, I’ve had a few of those recently ( really knocks your confidence)

Whatever you decide, I wish you well x

[piglette in reply to Jeannie29]

I got an expensive new recliner when I needed a hip op. In fact I never use it, I still use my comfy old easy chair. I have a semi chic cane I got from Amazon. I am not sure I really need it but it gives me confidence. It has developed a squeak so I suppose it is not chic at all!

[Jeannie29 in reply to piglette]

Oh well , can’t win em all. Lol x

[Hidden in reply to piglette]

Comfy old chairs are a good choice but nothing beats the recline with feet up.🦋

[Hidden in reply to Jeannie29]

You are right. I have fallen off the third step going down my stairs twice. I now look at every step. I did not land on the ground but really jerked myself hanging on and spinning around.😃

[Purplecrow in reply to Hidden]

😱

[Hidden in reply to Purplecrow]

Oh no in the last six months it was always the third step I seemed to miss.

[AMG38 in reply to Hidden]

My recliner is my best friend too, couldn’t manage without it it, oh and the cane as well! Everything to make life as easy as possible !

[YuliK in reply to scats]

I'm known as the lady with the trolley ...I have a small samsonite trolley with four very strong wheels ..I find this so useful, as I can walk it alongside me and I can put my shopping inside and rest my handbag on the top of the trolley.

[SheffieldJane]

Oh Lin- calif you do make me laugh ( the butt bit) and you do seem to have answers and a STASH!

What about Nordic Poles? They don’t look “ old person” at all, rather they look like you are a serious walker. All kinds of lean,fit, looking people use them in Europe. I have them and was able to glide up and down a Greek, rugged, cliff twice a day.

Your Rheumatologist could have a point about your moving oddly to save your sore side. That throws everything out and causes more pain. Seriously Nordic Poles - start a trend in your neighbourhood. They will say look at Lin- calif flying about, I must get some of them!

[Hidden in reply to SheffieldJane]

This makes me feel skiing with Nordic poles. I had some but they kept collapsing maybe that is why they were given to me. I have been practicing with cane and my fancy walking stick I am leaning towards the cane hehehe get it leaning towards....😂

[PMRpro Ambassador]

Going up 1mg at a time rarely works - it just allows the flare to progress in the meantime. Try adding 5mg for a few days and see how that goes. If it works you can start going down, if it doesn't you know you may need more. But if it doesn't work inside a week then you can drop back to 10, agree with him he MIGHT have a point - except if you have pain, you shouldn't be dropping until you know what it is. Numpty!

As the others say - don't write off the idea of the cane - apart from anything else carrying one does seem to encourage a bit less aggression from the people around you on the sidewalk or going through doors! As Celtic says - walking poles are trendier. Enjoy your recliner - and I know what I'd have been tempted to do with the cane...

[Hidden in reply to PMRpro]

As usual great advice. I called my doctor and my lab. No one will give me results until the doctor oks it. He has not called so another day waiting. I am in a lot of pain both areas over my shoulders to neck and my entire left leg. I will go up tomorrow or later today as I have a birthday lunch I want to attend tomorrow..thanks again...🦉

[Rose54]

Oh sound good hope the recliner rises you as well

We have a swinging recliner in the garden

Thought I would try it out last weekend and read a book took me 2 hours to get out

Most of that time was due to us laughing so much.

[Hidden in reply to Rose54]

My foam bed is like that. It is so comfy but I have to climb a hill to get out of it. Nellie my cat has been sworn to secrecy to not let anyone know how ridiculous I must look. As to my recliner it is a smaller narrower and tall version. I am 5’8” tall and have to rock myself out of my chair. I am waiting for the day I fling myself onto the floor.🙀

[Hidden]

Good to know you have a stash put by 😂 why they always want us to reduce, reduce, reduce!!!

Relax in your recliner & hope you feel better soon! 💐

[Hidden in reply to Hidden]

Thanks MrsNails, I intend to do just that. I used to be so active and now I am a slug. But I have my hobbies to keep me active. So it is not all bad as a slug.🐌

[S4ndy]

Hi Lin, I am 56 and had PMR for over two years. Currently on 11mg after having to return to 30mg last year after a flare. Its like a twisted game of snakes and ladders! Up and down!

Remarkably, like you I can be total pain free if I sit in my recliner and don't move. I have found that lying on the bed also has this side-effect

Thing is as soon as I "do" anything there is pain from somewhere in my body. I have other conditions besides PMR.

So I have invested in all stuff that helps me to move. Being an exercise teacher I recognised that being totally sedentary is not good. I therefore have a collection of mobility aids to help me. A walking stick (funky one) to help me on mild knee pain days, Nordic poles (Metallic blue) to help me when I need extra support(can't use crutches as arthritic shoulders), a rollator (also blue) for when my arthritic back is trapping my leg nerves and I need to be able to take rests along the way and, lastly, my boot scooter that I use when the body refuses to cooperate and the fatigue takes over.

I don't care what other people think as to me, living each day as it comes and being able to do what I want safely and minimizing the amount of pain I suffer is important.

I am grateful indeed for all these things that help me.

I try to cast off the ego and vanity, accept how it is and enjoy as best I can. Sounds easy but its a hard practice to remember every day. xxx

[Hidden in reply to S4ndy]

This is where my cat works for me. I no sooner sit down and she starts asking for things. So I get up and do the one thing. I have a very non typical cat. She can barely jump up onto bed so now her favorite place is our front porch. I put up a doggie gate and she loves it. Like today I didn’t open the door for her and so she was asking very loudly. I get up and say show me and she either leads me to kitchen to feed her or open door or her biggest requests are to turn on the drip in the tub as she enjoys that immensely. I have to get up multiple times for that request as she drinks a lot.

She has a vocabulary of 3 words thus far. I would poke me and say mom and poke her and say Nellie. It took less than 6 rounds for her. So sometimes if I ignore her request for turning on tub drip she will scream MOM! Her hi is funny. When friends come over they say hi and she says hi back it is a simple quick hi but it makes us all laugh. I love my cat still like dogs better but I wouldn’t be able to do my stairs for potty breaks.😌

[PMRpro Ambassador in reply to S4ndy]

Brilliant!!!!!!

[Purplecrow]

I💜u! Make me smile/laugh!!!

Better day soon, Jerri

[Purplecrow]

Hi LinCal! How's smoke in your area??

Here in Wa state...is nasty..

But here is my other thought...have you considered seeing a chiropractor?

My Chiro keeps me relatively pain free in back, hips and neck. When I feel myself becoming "immobilized", i call him, and he fixes me.

Good luck, I hate pain!

[Hidden in reply to Purplecrow]

Hi, the smoke is better in the last week. So many of us were getting sinus headaches.

I used to have the greatest chiropractor but he retired. I have tried others but it hurts too much so I stick to my stretches and such.

[Ciar]

I live in Idaho and we also have the rheumatologist shortage. I did finally get to see one, and all he wanted was for me to quickly reduce steroids. That made me miserable for over 6 months until I went back up to 7mg prednisone. So I fired him and my primary doc took over. Now she is pushing me to reduce, although more slowly ( .5 mg/mo.) I’m back down to 4.5 mg and all the old pains are back and getting worse. Nice you have amassed a huge secret stash of prednisone, I think I should have done that, too. I hate to go against doctor’s wishes and I don’t know what will come of it. Seems like all the doctors around here don’t believe in the long duration of PMR, and don’t think we need treatment. They think low doses of prednisone are worse than poorly controlled disease. I’m so frustrated!

[Hidden in reply to Ciar]

Yeah I kept telling pharmacist I had enough prednisone but they kept calling or texting so I gave up and took them. I told my doc when he said at 2 1/2 yrs I should be better and I told him that some real time real people have had it 5 to 7 years he shut up.

I finally gave in today and went to 15 mgs and the pains are so much better. But I feel sick. I still have not heard from my doc so I just did it.🙀

[PMRpro Ambassador in reply to Ciar]

"I hate to go against doctor’s wishes"

All the doctors wishes won't make the PMR go into remission before it decides to - if wishes were horses, beggars would ride they say. If the underlying cause of the PMR is active - you will have symptoms and need pred. Were you OK at 5mg? Or is it higher?

And show her this - from a group of top experts in PMR:

practicalpainmanagement.com...

medpagetoday.com/rheumatolo...

Both about the same work - just slightly different facts in each.

You are at a physiological dose at 7mg - the amount of corticosteroid the body makes anyway. They have to USE their knowledge of physiology!

[Ciar in reply to PMRpro]

I’m gearing up for the confrontation ahead, and I really hate confrontations. I just don’t know how she will respond, but I have already copied the papers. I would like to stay on 6 or 7 mg without reducing for a few months at least. At my last appointment she implored me to reduce with the threat of the usual long term side effects and also adrenal insufficiency. Do you know how many long term low dose steroid takers end up with that?

Yesterday I got a steroid shot in the foot from podiatrist (again) and I woke up this morning feeling fantastic. I had forgotten about the lift I get from those shots, and had to remember that the steroid is why I felt so good. Just have no idea what amount is going systemic from that (maybe a lot?).

[PMRpro Ambassador in reply to Ciar]

Very few, all things considered. The local Medical Director told me he had never had a patient who couldn't get off long term pred providing they reduced slowly enough. Most doctors will tell you it is very very rare - I wouldn't go that far but they were surprised when I said I knew 3 or 4 out of a population of perhaps 5,000 patients on the forums. It happens - but it is not that common.

Dr Rod Hughes likes to keep his patients at 5mg for up to 9 months to allow adrenal function to settle down and feels that helps the onward reduction. But there is little point starting a patient on pred if then you are going to tell them they MUST get off it before they are ready. You will have wasted all their effort in reducing to a physiological dose - which by definition has far fewer side effects, as was found in that study I gave you links for.

[Ciar in reply to PMRpro]

Thanks, PMRpro. I have had PMR for at least 23 months, probably longer, and my symptoms have been decently under control (6 mg or more) for only 7 of those months. The rest of the time I’ve been in health crisis mode with PMR symptoms and more issues. I plan to tell my doctor that I will never blame her for any prednisone side effect if she will just allow me to manage my own dose, sign a statement for the record if need be.