really need help

[MrsMarigold]

in hospital after reverse shoulder surgery. There was a mix up with my meds list. Surgeon didn’t know I. Take 3/12mg steroids every day been on steroids 10 years my highest dose 7 months afo5 mg short time. He wants me to stop steroids and Hydroxy for a week or two immediately and a hospital rep said no in my room later to up. To 5 not crash. This was rather emergency surgery have no idea what rheumatologist say sorry I have one hand. MM🍪

[DorsetLady PMRGCAuk volunteer]

Whoever told you to go up to 5mg seems to know what they are talking about, so follow their advice.

Really do despair at the lack of knowledge re long term steroids use from some doctors who you would hope know better.

Hope you soon improve… and worry about rheumatologist when you are in a better state of health.

[MrsMarigold in reply to DorsetLady]

🌞

[cycli in reply to MrsMarigold]

good advice. sorry you are in a fix. By the way, what is a reverse shoulder op.?

[DorsetLady PMRGCAuk volunteer in reply to cycli]

What is says on the tin -

A reverse shoulder replacement is a surgical procedure that replaces damaged parts of the shoulder with artificial parts to create a more stable joint. During the surgery, the surgeon removes the damaged bone and reverses the normal ball-and-socket structure of the shoulder joint:

Ball and socket

The rounded end of the upper arm bone (humerus) moves inside a shallow socket in the shoulder blade (scapula).

Reverse

The surgeon attaches an artificial ball to the shoulder blade and an artificial socket to the top of the arm bone.

Fulcrum

The reverse structure creates a fixed fulcrum, which can help patients who have difficulty performing activities above shoulder height.

The procedure typically takes about two hours and involves making an incision on the front or top of the shoulder. After surgery, patients are given a sling to help rest the shoulder for six weeks while the muscles heal. They should also keep the wound dry for 10 days and start an early exercise program to regain movement

According to my surgeon, it doesn’t give as much movement as normal replacement -was suggested for me because my Rotator Cuff is a bit of a mess. But we stuck with normal procedure. .. good for me!

More info if you really want to know -

orthoinfo.aaos.org/en/treat...

[cycli in reply to DorsetLady]

Many thanks DL. that's really fascinating. There must be a reason, probably surgically easier, why they reverse what nature thought best. I am duly informed.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

Not sure it is… and I don’t think it’s preferred option - certainly wasn’t in my surgeon’s view, nor another I saw pre surgery.

The only reason it was suggested to me was 18 months following usual surgery [just a couple of weeks before Covid lockdown, so no real follow up nor physio] - I still had some slight movement issues at a particular angle, so asked for an appointment.

Surgeon [and me] were generally pleased with outcome, but he did have to stitch my RC during surgery and we hadn’t discussed it F2F previously, so I wanted clarification on that.

He did say if that worsened [which luckily it hasn't] the option was to go in again and perform the reverse surgery….but it meant less movement as a general rule. Not something he - nor I wanted.

[PMRpro Ambassador in reply to cycli]

"The most common reason to consider a reverse prosthesis is when there is arthritis of the shoulder joint and the rotator cuff tendons are torn or gone. A reverse prosthesis can significantly reduce pain and restore some range of motion in the shoulder."

hopkinsmedicine.org/health/....

It is all dependent on the overall situation and what structural limitations apply.

[cycli in reply to PMRpro]

that's very interesting. I tore the rotator cuff off in a cycling fall. I had an operation where they tried to mend it but it was a failure the surgeon told me I had therefore lost that facility and wouldn't be able to lift my arm above shoulder level.. I wasn't happy with that so set to and exercised the arm. I have full rotation of the arm with no limits. Obviously other muscles can mimic the rotator cuff.

[Grammy80 in reply to PMRpro]

In my case, when I broke my right arm last year, that was the only option. The ball joint was severed from the humerous. Yes, indeed, it did hurt initially and my arm was fixed to my body for six week....darn inconvenient....but now, I have full range, now pain or discomfort....so once again....having no options did turn out well for me~! Guess I'm just lucky💞

[MrsMarigold in reply to PMRpro]

Thanks Pro that is exactly right This highly skilled surgeon let me make the choice. I had no faith in growing the Collagen for to rotate cuff with lupus he said good choice too much arthritis aand no tissue thanks can’t be typed re

[PMRpro Ambassador]

If it applies - demand an interview with the hospital pharmacist when they visit the ward! Their job is to identify the errors made by the medical staff ... Not sure if they work weekends - but they DO work Mon-Fri in the UK. The alternative is to demand to speak to the anaesthetist - who will be fully aware of the adrenal issues with that surgeon's desired action.

[piglette]

Another doctor who seems to know b*gg*r all about steroids. I would do as PMRPro suggests and talk to the hospital pharmacist.

[Grammy80]

Good heavens, like you don't have enough to deal with. I'm in the States too and find them less 'in toon' to the gravity of maintaining meds. Please rest and I hope the five works for you. I usually carry pred on me....I'll be 84 soon and when I was a teen I had seizures. Well, then I always carried my seizure meds with me too. I'd been trained..feet hit the floor, take your meds. For the record, I had to have the same surgery last June...slow start but now I am 100% over the head, into a sweater etc. with NO discomfort at all. Please be patient with yourself in the beginning and sleep in a recliner. After the first six weeks or so and PT, you'll see progress. Walking with you...💞💞

[Grammy80]

PS....I know I listened to books and also watched Netflix and Prime Video....a lot💞

[jls93]

Yes, it is a stressful time,augmented with what seem to be differing medical opinions.

Big picture: 2 things trigger "inflammation" 1 1. trauma (rTSa )

2. Disease (PMR in this case for example)

Inflammation after trauma is normal because it's our body's damage control system. Amazingly (predictably) transitions into "early healing", then continues to transitions to "remodeling " then "mature healing" etc..

We know pregnisone influences inflamation wheather it is disease (PMR) management or trauma (post-op "healing" )

Your Dr's are trying not to mute your body's normal processes for early post-op healing ,which is literally the foundation to which you will be "growing" a brand new "shoulder"/ upper extremity" over the upcoming year.

These are the initial steps in this process

I agree with PMRPRO et al ,in that your "care team" should demystify/explain their clinical descisions making on your behalf.

We as patients, during these stressful times, are leaning and feeling alot across 3 domains of living: physical,intellectual emotional

Or

spirit,mind and body.

Hope this was helpful. It seems that at times that

"The most is asked of us when we are not at our best"

Your situation is not uncommon to your care givers, however it's all new to you....

Your situation is dymanic and will be evolving

Prayers, blessing and healing juju to you..

Sincerely Jeff