Quick question before my operation tomorrow

[Sophiestree]

Shall I start with I think Brett and I are now pals and we have solved my issues with answering posts!

I have have my parathyroid gland out tomorrow (benign tumour on it) that was flagged pre diagnosis with high calcium and shown up on nuclear scan.

I have been all over the place re dose since Actemra was removed and now have my happy place at 8mg. I absolutely plan to reduce to 7.5 slowly but decided to leave it now until after the op.

Two things, any suggestions as to how long to keep at 8 after before reducing

And it says no food after 2.00am and no water after 6.00am. Shall I take my pred at 1.45am or could i take it within the window of 2.00-6.00 and just not have the food which I would normally do.

Well, that wasn't that short was it! Typical me.

Thanks all, and glad at least I can now repost!

ps - I have heard from some that they can feel instantly better after a parathyroid gland removal! Too much to hope!

[PMRpro Ambassador]

Good to have you back - and yes, Brett isn't too bad!!!

I'd take it at 2am if you can - that is the ideal time for plain pred ...

All the best!

[Sophiestree in reply to PMRpro]

Great, thanks for that. Yes, I have been sooo frustrated at going to reply to things and forgetting......

[DorsetLady PMRGCAuk volunteer]

Probably better to take it before 2am then you can have some food... don't want to risk any gastro issues with no food... but make sure anaesthetist know pre op what you've done.

Fingers crossed procedure goes well... and keep us updated please.

As for when to continue reduction, you'll have to play it by ear- see how you feel after procedure...and there is no great rush.

Think Brett is on first term names with many on this forum...good to hear problem sorted

[Sophiestree in reply to DorsetLady]

Ah OK, will do. Hope I don't get told off about taking it then.

I have a lot to talk to them about as always vomit after anaesthetic and end up on a drip. Don't fancy doing that when you have had an op on your neck and straining!

At least I have got my GP surgery to put 8mg on my notes now, that's something.

Yes, Brett has been very helpful.... Long may it last

[DorsetLady PMRGCAuk volunteer in reply to Sophiestree]

No definitely not to post op!

Does your letter say anything about taking meds?.. If there's a tele contact no you could try ringing this afternoon if you're concerned.

[Sophiestree in reply to DorsetLady]

Sadly nothing about that. However I have just messaged my cousin who is a retired consultant anaesthetist, but he is total rubbish at looking at his phone!

[PMRpro Ambassador in reply to Sophiestree]

The least they could offer is antiemetics! At the back of my mind is they use the cheapest anaesthetic which has the most adverse effects! When my daughter was fairly emphatic about how awful she felt they used a different anaesthetic and she was fine. And it saved them a lot of grief in recovery because it always took them by surprise when she didn't come round well.

[Sophiestree in reply to PMRpro]

Yes, I am exactly the same. They are always so surprised why I am still groggy hours and hours later. My problem is if I do start to vomit then I don't stop as have some stupid reflex reaction that goes on and even taking a tiny sip of water sets me off. Every one I have ended up on a drip! So boring when they don't listen and always say to me it won't happen with them!

[PMRpro Ambassador in reply to Sophiestree]

Yeah, right! Crystal balls again ...

[Devoid in reply to Sophiestree]

that sounds just like my experience. What I have found helps is lying flat for longer, they always encourage me to sit up and that’s when the vomiting starts. Stay flatter and sip through a straw. All the best

[Sophiestree in reply to Devoid]

Brilliant suggestion

[piglette]

When I had the same instructions I took my steroids at 2am.

[Sophiestree in reply to piglette]

Perfect... thank you... I will do the same.

[piglette in reply to Sophiestree]

👍

[Elispeth]

Hope everything goes well for you and I wish you a speedy recovery from your surgery 🙏 💐

[Sophiestree in reply to Elispeth]

Thank you

[Jackoh]

All the very best. 💐

[Sophiestree in reply to Jackoh]

Thanks

[SheffieldJane]

Good luck Sophie! I hope you do feel great after this procedure. Get your surgeon’s advice on Pred. They will probably give you hydrocortisone during the op. 💐

[Sophiestree in reply to SheffieldJane]

No one mentioned my pred dose, in fact no one checked I even took it the next day 😱

[SheffieldJane in reply to Sophiestree]

I am finding that I have to be pretty proactive these days - progress chasing and reminding about my own stuff. Glad it’s all over for you now, I hope you begin to feel heaps better. 🌞

[Elizabethjane7861]

Hi Sophie

I don’t really have anything to add about when to take the prednisolone. I am on 4mg. I have recently been to see an Endocrinologist as I have mild hypercalcaemia. My levels around 2.6. If they go any higher then I am to see the surgeon to have a nuclear scan and removal of one of the parathyroid glands. I wish you the very best with your operation and I look forward to hearing about your recovery too.

[Sophiestree in reply to Elizabethjane7861]

Yes. I had the nuclear scan. My calcium was 3.2 but after LVV diagnosis they sent me for Zolendronic infusion and so they immediately went down. Apparently they crept up again to 2.6 plus PTH went up so that's why they decided to go ahead.

[Tiggy70]

Hope the op. went well and you are feeling ok. Wishing you a speedy recovery 🌸

[Sophiestree in reply to Tiggy70]

Thanks

[Bluesew]

Only just seen your post as just home from same op yesterday!

Hope yours went well. I seem to be fine so far. I’ve had to wait a long time for the op as my surgeon wasn’t keen to do it if I was taking more than 5mg pred. (I’m on 10mg methotrexate too).

I also have GCA and the surgeon said my arteries were fragile - in fact oozy was the term he used! He also thinks I should feel like a new woman!

All the best for your recovery.

[Sophiestree in reply to Bluesew]

I hope my @ thing worked and you see my reply, and that you are also doing ok

[Sophiestree]

Thought I would reply to my own post to make things easier but thanks to those wishing me well.The anaesthetists were amazing and took a lot of time listening to me (all 3 women 💪). By the time I went down I had the mother of all headaches and so the first thing they did was to give me IV paracetamol followed by saline drip. No gas and air, just air as they said that isn't good for nausea and vomiting, and not hydrocortisone, but I'm pretty sure the Senior Anaesthetist said Dexamethasone, as short op and good for post operative nausea and vomiting. Came round so quickly which is not like me at all and felt great, and so it continued.

I'm home and feel good, pain at wound point to be expected but not hideous.

I am a tad wired though so not putting it down to gland removal just yet in case it's the extra Dexamethasone, as not sleeping well.

All in all really happy. Calcium levels are normal as is PTH.

Bluesew how interesting they said that to you... wish I had read that before I saw the reg who discharged me. He was very excited as it was his first rotation with this surgeon and was clearly impressed with how quick he was and also that he let him sew me up!

So I'll give it some time before I decide if I feel good because of the parathyroid!! 🤞

[PMRpro Ambassador in reply to Sophiestree]

If you want to tag someone, having typed the @ symbol and starting the namem a list of names appears, you have to click on the right one to create the link, it doesn't happen by just typing the name.

Good to hear it went well - see, anaesthetists are all powerful! Dexamethasone lasts a couple of days and is much stronger - it will pass. Don't eat too much in the meantime - it is used to stimulate appetite in cachexia.

[Sophiestree in reply to PMRpro]

Ah I didn't think I'd done it properly. Thank, I'll know for next time, or might try to edit!

Didn't know about the appetite bit so that's good to know.

Let's see how I am by the weekend then !!!

[SheffieldJane]

so far so good! 👏👏👏👏

[Jackoh]

All sounds very positive! 👍👍xx

[Sophiestree]

I thought I would stick to this post to ask my question to keep everything together. Is it possible for the Dexamethasone to give you a sore stomach. I don't take Omeprazole, although I'm prescribed it, but always make sure I've eaten well before taking my pred for the past 2 1/2 years and had no problems at all, but yesterday I started to get a really sore stomach and today the same. I am sitting with a heat pad that helps but just wondered if the Dexamethasone might be the culprit and to just sit it out. Also have a cracking headache!

[PMRpro Ambassador in reply to Sophiestree]

You aren't on it longer term are you? Wasn't it just the one dose for the op?

[PMRpro Ambassador in reply to PMRpro]

But headache and indigestion are listed for regular use.

[Sophiestree in reply to PMRpro]

Just the one dose. Very odd...

[PMRpro Ambassador in reply to Sophiestree]

Very - coincidence? Something else?

[Sophiestree in reply to PMRpro]

Haven't taken anything other than usual paracetamol, not even an Ibuprofen....Hopefully it'll settle soon.

I am quite sensitive to stuff...

I'm sure it'll pass.

[PMRpro Ambassador in reply to Sophiestree]

GP if it doesn't. Sure it's nothing to do with the op?

[PMRpro Ambassador in reply to Sophiestree]

It obviously can have some effect on the gut:

"You may notice that your bowel movements are not regular right after your surgery. This is common. Try to avoid constipation and straining with bowel movements. You may want to take a fibre supplement every day. If you have not had a bowel movement after a couple of days, ask your doctor about taking a mild laxative."

Is it just pain or nausea too?

[Sophiestree in reply to PMRpro]

Just discomfort really which heat helps. I'll get the lentils out just in case....