Hi there. I could really do with some advice here. It's pretty specific.
Non diagnosed GCA at 41
Diagnosed GCA at 50
7 mild strokes, one big one and another 6 small ones, leaving me with double vision and LSD coloring.
Diagnosed PMR at 51
Diagnosed Hyperlipidemia at 52, as well as osteonecrosis, herniations, calcifications and smaller stuff like tinnitus and such
Also diagnosed anxiety disorder, panic attacks, clinical depression, PTSD, and no doubt that my adult ADHD doesn't help there.
I have been in GCA remission, clean and pred-free for a year, and just had a hip transplant. The first 48 hours right after surgery I had hot-cold flashes, rather violently. That is pretty common.
But now I am in day 6 after the surgery, and even though the hot-cold spells are less, and less violent, I still have them. That is officially NOT normal. I have no fever or infection anyone could find.
Worse, I am disoriented and I have been having night sweats as bad as they can get, together with these body-shaking teeth chattering cold spells, the moment I dare move an inch, trying to escape the bathtub of sweat that is my bed.
Doctors have no idea. I told them to check for thyroid and cortisol, 2 famous culprits known to cause this. haven't gotten the blood results back yet. They also said that checking ESR and CRP is useless at this time, coz they will be out of whack in all cases, right after serious surgery. True too. I have no painful scalp, no neck or head pain, no swollen temporal arteries, but I do have crazy night sweats and disorientation. Very sensitive to temperature shocks. Even opening the fridge makes my teeth chatter. Vision has been below average since 3-4 days straight.
Last night I tried a new thing: to wake up and turn (in post-op pain) , the very moment the sweat-wave quietly announced itself , thus avoiding each actual sweat burst.-apparently. So, I didn't sleep more than 4-5 chunks of 30 minutes with short breaks in between, but at least the night wasn't horrendous drowning in sweat and ice. How does waking up stop a cloudburst? I don't get it.
So what is this, you think? PMR climbing, causing night sweats? GCA returning? I have long been taking Tramadol. 100mg per day, some xanax, plavix and statin o.5. Nothing weird. I am not a med noob, but I am unable to crack this.
I predict the cortisol and thyroid will not explain anything. So, I will have to.
This made me think...-in absence of better data, maybe skip all the laden questions and ignore my medical past.
What do we have, what do we know?
ESR and CRP are well up. that's sure. That's inflammation in the blood.
When you get readings like that, a doctor would instantly understand the possible occurrence of sudden night sweats in potentially anyone, with or without pre-existing conditions. Correct?
Ergo: Supply preds. They bring down the numbers and then the night sweats go. Correct? if so.. how much would one take? How long?
Or, as a GCA person, should I treat this as a flare, and go to (other) fixed dosages?
I can't go find specialists. I am in Taiwan. GCA doesn't exist here. Yellow people don't get that disease.
There's also no Covid here, which is a big plus. Credit where it's due. My hip transplant, including 5 days in a (fancy) single room cost me 1000 usd. The rest was covered by the gov. The operation was the new, advanced version and perfectly executed.. That is really good, while other things are not:
So, there are at least 150, maybe even 250 young, middle-aged and/or elderly rheumatologists and immunologists scattered around the country in massive, fancy hospitals, none of them with any experience in GCA, and they literally rather prefer I sue them in court, rather than having to accept me as a patient. I already tried the 15 "most famous" ones, and they never offered even an aspirin, despite my visits to their ER's with my ischemic strokes every 3 weeks.
The 7th reluctant doctor, is where I was crying, begging for my life, told me to go elsewhere. When I got even more desperate, I militantly refused to leave his office.
He then offered me a SINGLE, massive injection of preds, possibly deadly, if I promised to take it and not come back.
I refused, telling him it's a deadly doses, while he laughed, telling me "people die all the time"!
All of them refused to use google, wiki, or call a colleague in order to save me. No referrals, no follow-ups, and no bills, 007 style. 'you were never here".
In the end, I found a nice rheumy who -at least- does what I tell him. As long as I know what's wrong and what I need, I'm golden, haha!
So, it's up to me. -again. I would sure like to nip this one in the bud, coz i am still not completely blind (knock on wood)
Your suggestions are very welcome..
Thanks! Stan
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StanDieks
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a few months after hip replacement surgery (and 9 months after knee replacement) my ESR was found to be high....quite by chance, no adverse symptoms.
My doctors assumed a return of my GCA (been in remission 3 years) and prescribed short course of Pred.
Suggested 40mg for 3 weeks....I actually only took 20mg for 1st week, tapering 2nd & 3rd as I knew it wasn’t GCA.
Following investigation we all decided it was a combination of normal post surgery inflammation and a 48hr flu-like virus.
Readings returned to normal, and been fine ever since.
So agree, maybe a short course of Pred will resolve your issues, but you should discuss with Rheumy.....there seems to be more going on which can’t be explained as easily.
Thanks so much for sharing that. It fits my case well, I think. I am not convinced it's GCA neither, but it is something from the same shelf. Like I told Jinasc, It seems very logical this way. I don't see other venues. I will start a 3 week thing, 20MG, and taper down. See what gives afterwards. These night sweats really can't be healthy to the system, especially right after the op.
Excuse my sudden anxiety, as I just tried contacting my surgeon/doctor, afraid there's an issue with the hip transplant wound. -without result. No matter how i tried, explaining things to some ice cold hello-kitty's on the phone. He knows about my call and refused.
The sense of abandonment is absolute.. He isn't seeing people today, -even though present and not operating someone-. And, the nearest hospital, -theirs- is more than 2 hours drive. 8 hours of action until I'm back home..at best. In my condition? That's better than a 2 minute phone call? For whom?
They probably won't let me see anyone, coz every doc will see immediately that I am someone else's patient, scheduled next tuesday.
Like I said.. after waking up refreshed and painless for the first time in ages, made my coffee, did some typing, then noticed a loss of feeling in 2 areas of the skin around the wound. Pretty large, moving away from the wound towards the groin.
i can't say for sure it's a new thing. It used to be sore, that's for sure, but now it's numb-not cold or hot.
With my new preds yesterday, would they have this effect on the wound, and larger wound area around it?
Preds repress inflammation pain, and there must have been tons of that after/because surgery.
But, do preds turn inflamed, sore flesh into numb flesh? I would think it would simply return it to non-inflamed regular skin?
Wouldn’t have thought the Pred would have that effect - all I know is that it can make the healing process slight longer than normal. Are you sure that, because you felt better, you weren’t too adventurous in your activities?
Is there not a local surgery you can attend as an emergency? As you rightly say, something’s not right and needs to be attended to...
...think you need to keep contacting hospital until you manage to speak to a doctor.,
Like DL a short course (no more than two weeks) of pred should help you to ascertain whether it helps or not. Then you can hopefully eliminate one thing.
Post-op for hip replacement the ESR and CRP are going to be raised due to the damage done to tissues during surgery - not necessarily inflammation as such or infection. Although infection remains a possibility and masked if ESR/CRP are their criteria for diagnosing it.
"Yellow people" may not get GCA very often - but they do get it, as well as Takaysu's arteritis, which is histologically identical to GCA, being not uncommon:
Although you have been off pred for a year, it is still possible that your adrenal function is still a bit wobbly - and the massive insult of the hip surgery has simply been too much for what function you have that has obviously been enough for normal day to day living.
Not sure what is "deadly" about a high dose steroid injection - one approach to GCA is a 3 day pulse therapy of pred infusions of up to 1000mg/day followed by oal pred at 60-80mg/day as a starting dose before tapering.
But in the meantime, if your doctor wants to help, a short term trial of pred, perhaps like the American medrol dose pack, should show if the problem responds to pred and you can stop quickly if it doesn't work.
PS - I do know Taiwan isn't China, the genetic stuff is similar though ... There are other reports of biopsy proven GCA in Chinese patients
Mathematically, there are, but if you only have 23 million people on your island, stats demand there would be 5 or 6 people. But, on average 75 yrs old, without a doctor or a diagnoses....leading back to a de facto -just me.
Medrol? No idea what that is. Bit of a miss, to not explain the one word in your complete speech that might have contained something tangible. ESR trivia? No need. This is you delivering a negating address trying to uplift yourself. But wiki-nitpicking back stories is not appreciated, when one is facing a medical crisis, asking for actual help. Sorry, but you pushed all the wrong buttons here.
I have just had my second hip replacement. My CRP after the first one was 415 and after the second 202. They probably had nothing to do with inflammation from my PMR, but as your doctor said you will have high inflammation markers because of the operation.
Yeah, it was. I am very skinny, so I was a candidate. Nothing but a 10cm cut on my side, and "walking wounded" but upright, the next day. Advantage is also that the risk of dislocation is equal to a natural bone. I can cross all the legs I want, apparently;
Still, it feels a bit heavy thinking about the second part, the complete "left" side. At least 6 months away, I'd say. Would like to work out what the immune effects are/were this time around, before jumping in for the sequel.
No, exactly the same as before, lateral posterior, which is supposed to save muscles according to the surgeon. I had the same surgeon but the wound is much smaller this time. Perhaps he has had more practise!! As I dislocated the latest one things were a bit more complicated though.
OK, same locations as mine, be it that when I woke up yesterday, for the first time in over a year, the pain was so long, intense and hopeless for the that I ended up in actual tears. And none of it had any relation to the healing wound, which is has been virtually painless since day 2.
So, I started the course yesterday afternoon, 20mg preds, hoping for -finally- a dry night. That didn't happen. Sweats all night, changing the bedding halfway the night, just to change it again in the morning.
I really hope that is normal.
Should those sweats have instantly subsided?
Does it take a few days, or is my dosage too low ?
What I did notice was that the irregular hot-cold attacks are gone and tiny room temperature fluctuations do not send me into a shivering and teeth chattering epileptic-like attack anymore.
What I also noticed is that I woke up pain-free, like a regular human being. What a difference between yesterday morning, where I could not even hold back the tears anymore! Even my index fingers are flexible and painless, as I hold my coffee cup.
I believe, long ago, in a past life, it was like that. I can't seem to properly remember.
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