Hematologist now...

[UkrainianTracksuit]

Hi kristina,

Yes, my husband is being followed by a sports medicine doctor and attends physiotherapy for his shoulder. He has another couple months until it is fully healed and he can go off on his merry way. He has some sort of pneumatic compression contraption that he puts on it. I probably should pay attention more. 

[kristina]

Hello again UkrainianTracksuit and many thanks for the added information. I wish you both the very best of luck and hopefully your husbands shoulder heals well and I send you my kind thoughts from Kristina. Take care.

[MooseMom]

UT, I'm glad you mentioned salmon because I was thinking last night that I'd read about anti-inflammatory diets/foods.  I guess that's something he can actively do for himself that doesn't involve prednisone.

It will be interesting to see at what point the pain and discomfort will finally convince him to take medication for his condition.  Everyone has their personal idea of what makes daily life just too uncomfortable.

[UkrainianTracksuit]

Small but a twisty-turny update.

I quit my job 3 wks ago. People think I am nuts to quit such a good job, but it was the right thing to do. My (former) boss, while skilled in the field, is a pompous old jerk. I'm not someone to take a mental health break or quit for mental health reasons, but the guy worked me to the bone. I dealt with it to the point I got exhausted and sick last year. There were quite a few little things that I just filed in the back of the brain too. But, the final nail in the coffin came when I stated my intent to transition to another field of work (same field, just a focus on sanctions, rather than general forensic economics stuff) that he made a snide remark about my husband.

That means, working from home has transitioned to just being at home.  I recently was offered a short-term contract (8 months) so I'm not twiddling my thumbs though. But also, this means more time devoted to the man of the house.  His presence/check-in at work sites is not necessary and he is doing his professional office duties from home. Since I'm not working, and less stressed, it's actually been good!

He has pain still, but in his same old spots. He says it is manageable, but I told him to think about the long-term effects of inflammation and how it will scar his muscle tissue. Does he want to be active as he gets older? What activities does he want to do in say, the next decade or so? He has to look after what he has now, get into remission, and then get back to normal. Stop being such a blockhead (but said lovingly). 

The big "No" over prednisone stems from all the research that states it decreases testosterone levels long term. So, my husband images himself with boobs, moon face, tired, loss of sexual desire, and finally ED. The worst case scenario in all aspects. I told him even in the worst case scenario that all those things or one of them happened, he'd still be a MAN. It wouldn't take away from his past accomplishments and his character --- which is 110% not disgusting gym meathead. And to be frank, I told him that's what he sounded like, and that's a bazillion more times more gross than him growing a belly.

He's cautiously moving towards taking prednisone. He wants his testosterone levels checked (amongst other parameters that matter) and then have a discussion with his rheumatologist. A lot of that was checked in the recent past. Even in the post-40 years old years, his numbers were still very good for his age; like younger guy stuff.

I know that men have complex internal lives but I am totally out of my league with offering constructive criticism or insight for him here. This is man stuff. I'm just the one that eats his pay checks. However, I really hope that his little internal dialogues push him to take the damn pills, get into remission, and not be mobility impaired years down the road.

[MooseMom]

Yes, that was indeed a twisty-turny update!   

I'm glad you're finding your time at home to be a positive experience.  The lower the stress level, the better!  Good for you for being self aware enough to recognize your work situation had become untenable, and good for you for having the guts to do something about it.

I'm glad your husband has been able to have the time to mull over using prednisone instead of being in a situation where he had to make a life altering decision in an instant.  Sometimes you have to just get used to an idea and to let it tumble about in your brain.  It's entirely reasonable for him to sit down and decide how he wants to have his treatment managed and then to discuss these things with his medical team.  More patients should be pro-active and want to be a true "partner" in the management of a chronic condition.  I always tell my tx clinic that I am the captain of my own ship.  So, good for him.  He seems to be making some progress in more ways than one. 

It is sometimes hard to recognize that sometimes there is nothing we can offer in the realms of wisdom and experience.  Sometimes a person's internal dialogue might not include us.

Thank you for the update!  I is very interesting.

[iolaire]

Congratulations on the job choice. I’m confident you will make it work out to your favor. I don’t research prednisone side effects but personally at 5 mg I don’t notice the side effects you mentioned.

[PrimeTimer]

s

but I told him to think about the long-term effects of inflammation and how it will scar his muscle tissue. Does he want to be active as he gets older? What activities does he want to do in say, the next decade or so? He has to look after what he has now, get into remission, and then get back to normal. Stop being such a blockhead (but said lovingly). 

/quote]



UT, I am glad you brought up scarring with your husband. Once scarring occurs, that is that. It is permanent and debilitating. There is no going back. My right lung, airways and spleen are scarred because of inflammation caused by Sarcoidosis. I am breathing now as if I have just one lung. Prednisone not only helps me to breath easier by bringing down the inflammation but can slow and/or prevent further scarring and with the hope of going into remission. What's done is done but I am glad that I may stand a chance at remission. Your husband is young, active and otherwise healthy. He has much to look forward. Taking the Prednisone may only be temporary but scarring is forever.   

[Hereware]

Small but a twisty-turny update.

I quit my job 3 wks ago. People think I am nuts to quit such a good job, but it was the right thing to do. My (former) boss, while skilled in the field, is a pompous old jerk. I'm not someone to take a mental health break or quit for mental health reasons, but the guy worked me to the bone. I dealt with it to the point I got exhausted and sick last year. There were quite a few little things that I just filed in the back of the brain too. But, the final nail in the coffin came when I stated my intent to transition to another field of work (same field, just a focus on sanctions, rather than general forensic economics stuff) that he made a snide remark about my husband.

That's brave and smart of you to do. That's just right. No matter how good of a job you have if the people around you cause you stress, it ain't worth it. I'm praying for you. Better days are coming.

[UkrainianTracksuit]

Thanks everyone for your kind words! Hopefully, something good does come out of it all in regard to work. I wasn't happy for awhile, but now I feel sorta free. To be fair, I know it is a privilege to say such a thing especially when so many people are out of work and struggling a lot. There are a lot of people out there doing jobs that cause them anguish just to survive...and here I am, proclaiming freedom.

MooseMom, in the beginning of remote work, I couldn't stand being at home with him! His sort of work took longer to transition to work from home (didn't know how his position would manage or if he could be moved to something else) so for some time, he was home watching tv, looking for lunch, asking dumb questions...and I had to work! 

I learned from him that WADA lists prednisone as a "prohibited substance" so there's that other layer to break down with him. Dude, your competitive sporting days are over, unless it turns all Mike Tyson v Roy Jones Jr here.

Congratulations on the job choice. I’m confident you will make it work out to your favor. I don’t research prednisone side effects but personally at 5 mg I don’t notice the side effects you mentioned.

Hey iolaire, you may be the perfect person for this question. I know that you stated you took higher doses of prednisone (years ago) to manage your lupus flares. When you were on the higher doses, did you notice any side effects? Understandably, that is asking you to reach far back in your memory! My husband is looking at 20-30 mg.

Once scarring occurs, that is that. It is permanent and debilitating. There is no going back...Taking the Prednisone may only be temporary but scarring is forever.

Ah Pea Tea, my heart truly aches for you and this awful sarcoidosis. It's beyond stupidity to be arguing about taking prednisone for scarring in muscles when there are people out there in your shoes - taking it to stop scarring in vital organs. Truly, I hope you are feeling as good as you can be.

[UkrainianTracksuit]

Well, it seems like he will have a short run with prednisone whether he likes it or not. 

Many years before he met me, his nose was broken. Personally, I like his nose. The bridge is a little crooked, but that makes it all so rugged.  But between that, and inflammation, certain things are just impacting his quality of life, such as inability to taste food or smell. He puts adjika on his food for taste. The whole "loss of smell" related to corona is what made him take attention to it.

After a CT scan, an ENT surgeon called. The surgeon wants another CT scan  because it is all so crooked up in there, but as well, there is a bunch of inflammation. SO..the surgeon is going to put him on some prednisone, give a steroid nose spray to use as well, and then book him for surgery. The icing on the cake is that the surgeon is going to fix his nose! It's not a "real" nose job, but almost there!

I keep teasing him about getting a nose job now.  But, the serious aspect is that he is going to have to take prednisone for a short term, and maybe he'll think it isn't that bad.

Final funny thought: it was a telephone consultation, but my husband got dressed up for it.  I was laying in bed having one of my semi-retired naps and I asked, "where are you going?" and he replied all huffy, "The doctor is going to call!" so I had a nice little laugh.

[PrimeTimer]

Oh, UT! Even tho this isn't funny it is. Good luck to you both with the steroids. 

[MooseMom]

I'm with Pea Tea on this one.  LOL!

I'm really curious to hear how your husband copes with the prednisone.  It might be a blessing in disguise; like you, I'm hoping he won't think it's so bad, and he'll be more amenable to taking it to address his underlying condition.

[kristina]

Hello UT,
Thanks your the update and I love the way you describe the relationship you enjoy with your husband ! It is such a lovely read first thing in the morning and I thank you for it and want to send my good luck wishes with his "nose-job" ... Удачи !
Best wishes to you both from Kristina.

[UkrainianTracksuit]

Long time no update because nothing has really happened.  As well, I am in some sort of funk.

Anyway, no prednisone yet for the man of the house, but it will be coming. It took FOREVER to get the second CT scan booked so that's what held everything up.

My husband just got back from the doctor and there are a few more hoops before the prednisone starts. He has to have an EKG (no big deal) and yet another COVID test. Once we have the surgery date, then the prednisone protocol will commence.

I feel as though he should just start the pred with his other doctor. Lately, he's complaining his hip is aching more than usual. If he's going to rely on the nose doc, that means we have to wait for day surgery, and with the backlog due to corona, it could be awhile.

He's in a bit of a mid-life crisis, I guess. Not that he's going out buying a sports car or new clothes, but he's like, "I'm getting old, aren't I?" Which consequently leads into the conversation of bad life expectancy for Russian men. (Which, as an expat, I think adds some years of life, but anyway). So, he's just laying in front of the TV watching Euro 2020 and barely working.

He's happy when the surgery does happen that he's getting 3 weeks off work for recovery. That's the most I learned about the appointment today.

[MooseMom]

I'm watching Euro 2020, too, but at the same time, I'm doing all of my domestic chores.  Can't hear a thing while I'm hoovering, though.

Thanks for the update, such as it is/can be.  It sounds like things for your husband has come to an impasse.  A covid pandemic can do that.

I hope you'll be able to survive his three week recovery!  Let us know how THAT goes!

[UkrainianTracksuit]

Well, I am an idiot! Nothing new there...

The office of the nose doc called and a surgery date is booked. It's 2 weeks from today. We've been advised that if the pre-admit clinic at the hospital doesn't call by early next week, to call the office.

The prednisone has been called in and is waiting at the pharmacy. So, the experiment starts tomorrow. God help me.

[PrimeTimer]

   UT: Good luck! Don't forget to stock up on snacks for him otherwise he might eat all of your food. And maybe put breakables like the fine china away.

-PT

[Simon Dog]

I feel as though he should just start the pred with his other doctor. Lately, he's complaining his hip is aching more than usual. If he's going to rely on the nose doc, that means we have to wait for day surgery, and with the backlog due to corona, it could be awhile.

My hip ached more than normal a couple of months after I stopped prednisone.

Turned out be prednisone induced avascular necrosis of the right hip necessitating a total hip replacement.

After being told "not a problem" at two visits, I told my doc something was wrong and he needed to order some kind of test.   he heard hoofbeats and thought horse when it was zebra.

An X-ray indicated "suspected AVN" and an MRI confirmed it.   You might want to get that hip checked.   And don't buy "it takes years for pred to induce AVN".  Mine only took a month of pred.  Doc told me I set a speed record for his practice.

[UkrainianTracksuit]

He hasn't been on a prednisone protocol yet. It's literally just started so there's nothing prednisone induced.

The hip pain is from polymyalgia rheumatica....which is treated with prednisone, which he hasn't pursued yet. This round of prednisone is for nasal inflammation ahead of surgery.

[UkrainianTracksuit]

Well, we're right in the thick of 50 mg of prednisone and it is pretty unbearable. 

The good news is that it has helped his aches and pains a bit so that's been one good part of this whole nasal endeavor. The bad news is that well...he is pretty unbearable for the time being! The only time of some relative peace was yesterday evening when he went out for his pre-surgical COVID test. Hmm, I wonder what his co-workers think about his new agitation and energy. They are probably thankful he's still telecommuting.

Everyone that has been on high doses on pred knows the deal. Sleeplessness, irritability, insatiable appetite and hyperactivity. He manages to sleep in 2 hour intervals and then he's awake for another 2 hours. That means he puts on a bunch of lights and starts some odd jobs so that means noise. Therefore I'm not sleeping well either!

I thought he could eat like a hurricane on a normal day, but this is another level. My kitchen counter looks like the entrance of a convenience store with piles of chocolate bars, cookies, energy bars (like he needs those now), cheap pastries and nuts. I baked him three dozen muffins when this whole thing started. Gone. Then I baked a sweet cream loaf. Gone. I had to tell him to cut down on his eating because he's going to get fat and no women will give him a second look, let alone a first, if he turns into the creepy fat Slav guy that can just wear baggy trackpants to cover a big behind and belly. I have to bring in "other women" into the equation because heaven knows he doesn't care what I think!

This afternoon I am planning an excursion for him to go out for around 2 hours so I can have a very important (Zoom) meeting. It would be impossible with him hyper-energized and looking for stuff to do which often results in a crash-boom-bang scenario.

Oh, he's started vacuuming too. That's a pleasant side effect.

He'll start tapering down from the pred right after surgery. Then, it will be interesting to see how he feels once the pain starts coming back in the muscles/joints and he'll just get back on the pred, because he's seen it's not a big deal at all. Well....maybe at a lower dose.  He's be tolerable, I think, on like 10-20 mg.

[MooseMom]

I remember watching a montage of videos where women were trying to participate in Zoom meetings as their husbands who were now "working from home" wandered about in the background, munching on various foodstuffs while in various stages of undress, completely unaware that the camera was on.  One guy was wearing only underpants and a Manchester United jersey.  It was hysterical and reminds me of you and your pred fuel hubby.  LOL!

The highest dose of pred I've ever been on was 30mg, and that was for only a matter of weeks.  I guess I haven't realized how bad 50mg can be.  My condolences!

I like the "creepy fat Slav guy" line!  Very persuasive!
 

[Simon Dog]

Everyone that has been on high doses on pred knows the deal. Sleeplessness, irritability, insatiable appetite and hyperactivity. He manages to sleep in 2 hour intervals and then

Not everyone.  I was on a very high dose of prednisone (pre-xplant) for a short period of time and everyone commented about my fat face (cushingoid), plus I did pick up a case of avascular necrosis but I felt and slept just fine.  Reminded me of a Chinese restaurant "The Three Chins".

[UkrainianTracksuit]

Nose procedure done and it is so much worse than either of us expected.

What were we thinking? We were so unprepared.

I toddled him off by himself in a taxi at 5 am and he finally came home after 2 pm. Typical for day surgery.

But I didn't expect to see a nasal bandage already with blood soaked through! And the nurse had already changed it twice in recovery! Since he's been home, I'd had to change it four times and once I didn't too well of a job thus causing a heavy stream of blood to just drip on out.

On top of that, his face is bruised like he himself was in Lennox Lewis v Vitali Klitschko. Obviously, the pain is bad, and I heard him mumbling to himself. I asked what's wrong, it sounds like moaning...he's singing to himself to keep the pain down. No painkillers at this point because...

...there was a mix-up at the pharmacy! They were supposed to deliver (hospital put it on its orders when they faxed the pharmacy) so I sat here waiting for hours, with his moan-singing in the background, until he yelled at me to ring them. They were expecting someone to pick them up! It's all well and good now because he's sleeping with hydromorphone dreams.

The doctor's office called and I took a bunch of notes...but no one told me ahead of time that he can't eat solid foods for 3 days. His nose and sinuses are so packed that if he eats solid food, he could risk stoppage of breathing. So, off to the shop to buy all sorts of liquid meal replacement things.

Hopefully the pain subsides sooner rather than later so he can get back to taking care of himself soon enough. Prednisone tapering begins tomorrow, but I'm not going to get on his case about it and his other condition until this nose is healed.

Some good news though: ahead of the procedure, the team discussed his EKG and echocardiogram. His heart looks excellent..like perfect! That knocks off his worry of Slav-early-death-from-heart-disease worry. I always knew he had a heart like a water buffalo.

[iolaire]

Thanks for the update. It sounds like he will get good care at home.

[MooseMom]

You Tea, I'm sure it was awful at the time, but the way you tell these stories just makes me giggle.  Sorry not sorry.  LOL!

That said, I hope you'll get into a rhythm over the next few days.  Maybe there's a Nursing 101 online class for you!  Good luck!