Worries about the drop but under orders for scan

[Buttonshutton]

Hi. I have mentioned my fast taper before. But feel dreadful and am worried. Quick recap I'm reducing by 2.5 per week or was told to, (I've slowed it down) on rhuemys orders to have a scan as she's making sure it's PMR due to age. She wanted me to reduce 2.5 per week.

Anyway I've gone a little slower than she wanted as had lots on dads funeral amongst other things losing job getting new job. Had apt with her on weds and she asked if am on 2.5 yet. I said no 5 as I've gone slower and last week was on 6. Told her I can't carry on like this as in pain all day. She said needs to get this sorted. So please go to 2.5 next week. Get bloods done as she needs inflammation to show to order the scan and then I'm to go to zero for four or five days prior to scan. Now whilst I understand all the reasons why.. I'm worried because have a new pain in my back lower left side. I don't know where adrenals live but reading on here about silly fast tapers and adrenal crisis, I never thought to question rheumy about this tho I did my gp few weeks ago and he said she wouldn't put me at risk (the rheumy) anyway. I'm wondering what to look out for etc.

i did say to rheumy I'm worried about being on a low dose weeks awaiting scan she said it won't be it will be a week or so and as soon as I've had it I can take a high dose again. I just want to start again on a dose I need which don't think ever had before and the scan prove it's PMR and get it all sorted with proper tapers etc. hopefully won't be too much longer. But I am worried about going from 5mg to 2.5 in a week and over the last weeks it's been 10 to 8.5 to 7 to 6 etc weekly which is slower than she said. Don't think she's very happy with me but if I'd known the scans not taking too long I may have gone faster but risked adrenals ? It's a minefield and I don't know what to think and worrying and everything hurts !!

Any advice from you experts would be appreciated. I know ultimately though I have to bite the bullet

[PMRpro Ambassador]

" he said she wouldn't put me at risk (the rheumy)" - I wouldn't rely on that since a lot of doctors (including it might appear your GP) are not aware of the risk of fast reduction of pred below 7.5mg. However - insist you want to know when the appointment will be - it is also possible that the rheumy and GP assume a PET-CT wait is the same as for a CT which is usually available on demand. It may be - but you need to know.

I have to say - given your current and recent situation I think she is being really unempathetic. It alone will have increased autoimmune disorder symptoms, whatever it is. A bit of concern about your general wellbeing wouldn't go amiss.

[Buttonshutton in reply to PMRpro]

Thank you so much. I agree. I thought was feeling sorry for myself but I think the empathy is completely lacking. Would like them to experience this for an hour then they may realise. Good point re scan. I was amazed when she said a week !

[PMRpro Ambassador in reply to Buttonshutton]

My doctors here have all been really kind - except one and I now am almost PTSD-ish about seeing her. She also upset OH badly enough for him to refuse to go into hospital towards the end - at a point where we really were struggling to care for him.

Just a few days before he died I was blue-lighted to the ED with tachycardia and admitted. She was duty doctor that Sunday - she walked into the ward just as I arrived, spoke to the other occupant of the room and walked out. I didn't see her again until she appeared to ask if I "wanted" to stay in for the night - er, not really thank you! She had changed my medication without discussing it with me, stopping the drug that has worked very well for 7 years - because according to her it was doing nothing or I wouldn't have had this episode. Given the stress that weekend (but that is another story) the emergency doctor, my daughters (a nurse and an ED specialist) and all other doctors I have spoken to were pretty sure it was the stress and I said so - but this stupid female told me I should avoid stress. She KNEW he was dying. No idea what she thought I could do!! I ignored her revised drugs list and booked an appointment with one of the cardiology specialists - didn't accept her claim that SHE had worked in medicine for 20 years and SHE also had experience. I hope she never crosses my path again ...

[SheffieldJane in reply to PMRpro]

That story is utterly appalling. So sorry that this stupid woman compounded your stress at such a painful time. Some people are just not suited to being doctors - “ do no harm”! Arg!

[PMRpro Ambassador in reply to SheffieldJane]

I don't mind brusque - but she is utterly condescending and unpleasant and SO arrogant. I gather she has a reputation amongst even her colleagues. The previous Head of Medicine kept a very tight ship and it was a good department but he retired a few years ago and then his delightful but less forceful replacement died suddenly only in his 50s. I don't know if there is a real replacement, a woman is in charge of the admin-type stuff but she isn't a Primar I don't think. And you can see the difference - it isn't just Covid constraints. Loads of locals insist on going to the next town the other end of the valley - I've had a couple of OP appointments there and they are so different. But when it is an emergency - no choice, you go to the hospital 10 minutes away!

[Constance13 in reply to PMRpro]

Has no-one ever put her in her place? She's not a God and needs some harsh words. A VERY INDIGNANT letter would be a start.🤨

[PMRpro Ambassador in reply to Constance13]

I did try - just made her worse She shouted at me in A&E that I had been told repeatedly I needed to get a Badantin - I hadn't, at that point I didn't need a live-in carer even if we could have afforded it without Pflegegeld. It had been mentioned once and I had explained why that wasn't an option or needed. The problem at the time was nights and him falling but it wasn't that often. And I told her so. Then she started on me again so I said "Madel - Du ..." And she totally flipped out. I use Du for all the other doctors I know at the hospital unless they speak English to me - and they use Du to me, even the former Primar. Anyway, I'm an ignorant furriner ... Then I slammed my hand down on the desk and walked out before I really gave her what-for.

The night duty doctor had said she'd do her best to get him kept in that day as I had a hospital appointment at the other hospital in the afternoon - but then he was left in a freezing room (even I was cold) without a blanket and then effectively thrown out. They all kept telling me I should go to the Social lot for help - and I had already been told by them they couldn't help, there was noone available. There weren't any locally privately either - there were a couple of volunteer options but limited to an hour during the day which was no use at all. What I needed wasn't a Badantin but them to do their job sorting out the medical problems properly before sending him home. They managed it in Bozen. Keeping me in the loop would have been useful too - but I wasn't allowed to visit when he was in in August and she effectively refused to meet me when I asked - always too busy or somewhere else. Though I didn't know it was her at the time.

[Constance13 in reply to PMRpro]

Wow - that was some experience. She definitely is in the wrong job - what a twit.

[Sophiestree in reply to PMRpro]

Funny how she refused to meet you. hmmmm me thinks perhaps she knows....you would win that argument

[Longtimer in reply to PMRpro]

Goodness me, reading this makes me think sometimes one country is no better than the other!.....just when you need the most help, you get someone like her!.....I feel guilty now asking you about my problems!...sorry. .

I hope your health improves in the new year so your path need never cross her's again!...🙏

[PMRpro Ambassador in reply to Longtimer]

Oh heavens - don't worry about that. I'm better than her

[Longtimer in reply to PMRpro]

That`s the spirit...✌️ aren`t I naughty!....

[Sophiestree in reply to PMRpro]

You absolutely are... a thousand fold, and I think perhaps she knows that, hence her defence and argumentative responses every time. Someone will catch her out one day. Karma

[SheffieldJane in reply to PMRpro]

You are certainly the horse I would back. But it wasn’t blxxdy fair at all. 💕

[autumnlass in reply to PMRpro]

An appalling story - I’m so sorry 😞 that you experienced this at such a vulnerable time. 100% stress related - shocking.

[Buttonshutton in reply to PMRpro]

Wow!!!! That's awful. I'm so sorry. Avoid stress in that situation (how)!? and not acknowledging you when first in there. What a bitch!!

[Sophiestree in reply to PMRpro]

Wow! that is horrifying, but sadly not surprising.Growing up around arrogant consultants and all that goes with them(to be fair NOT my family, but definitely their colleagues), it does not surprise me one bit, and hence why I am not a fan of many medical people, until they prove to me that they are in the job they are for the right reason.

You really didn't need that on top of everything else, but sooooo know where you are coming from.

She is now on my hit list too!

[Carriemetz in reply to PMRpro]

What a dreadful experience. I’m so sorry - at such a time… Why such characters go into a profession that involves dealing with people at all, let alone people in need of care and help is beyond me. There are a thousand other jobs they could do more suitable to their temperament - Debt-collector- Hitman? all sorts! 🙄

[PMRpro Ambassador in reply to Carriemetz]

And if you really want to use medicine - why not pathology?

[Carriemetz in reply to PMRpro]

Quite! No one to upset or fail. Not that wd complain anyway…

[PMRpro Ambassador in reply to Carriemetz]

And you really DO know it all - just you are too late! And can't do any more damage

[Buttonshutton in reply to Buttonshutton]

Update. Had my two bloods done as requested. Currently on 2.5mg. She's just called me to say will book scan which will come through in a couple of weeks and so from tomorrow I'm to take NO pred until the scan. Said my levels of inflammation are 6 which is lower than last time at 8. I laughed said oh so it's making a liar of me which went straight over her head. She said soon as had scan csn go to whatever dose i like. I was about to say oh good 25 here I come let's start again. She went 5? 10? So I said ok 10. But what's point of that 25 worked. End of. On her taper 10 didn't work. So bloody well annoyed with it all

[PMRpro Ambassador in reply to Buttonshutton]

The difference between an ESR of 8 and 6 is negligible - unless part of a long series indicating a trend. She sounds a right twit - I wouldn't be stopping my pred until I had a date ... is there any chance of you contacting the radiology department and finding out what their waiting time is from request to scan?

[Buttonshutton in reply to PMRpro]

Good idea ! I will do that. Thank you. I just needed to vent. On the verge of tears. Don't they Realise it hurts ???

[PMRpro Ambassador in reply to Buttonshutton]

Depends on the rheumy whether they care - though to be honest, a lot DON'T realise how painful PMR without pred can be, My guy is amazing - just spent half the morning with him - I felt so bad about the queue behind me! I've missed out on the pain clinic because of Covid and this morning he didn't say "we'll make an appointment and I will do the injections" - he made space and did it there and then!

[Buttonshutton in reply to PMRpro]

That's amazing. Might get a plane over !

[DorsetLady PMRGCAuk volunteer in reply to Buttonshutton]

That’s easier said than done!

[Buttonshutton in reply to DorsetLady]

Things moving quickly hospital just called me. Scan Thursday at 3pm. Thought be a wait. So now thinking fast track cos they think cancer. God my sodding mind will be the death of me. Nothing else !

[DorsetLady PMRGCAuk volunteer in reply to Buttonshutton]

Oh flippin’ heck - what a todo - hope they are wrong in their supposition- but at least they are getting a move on. Fingers crossed is not bad news…🌸

[Carriemetz in reply to Buttonshutton]

Chin up. KBO. We’re behind you. 💪

[Buttonshutton in reply to Buttonshutton]

Another update. Well ish Just had scan. The one last week was cancelled an hour before I was due to go as the dye failed the health and safety tests. I therefore ended up on zero pred for 6 days. Weirdly the first couple days felt better and crouched to stroke the dog then got up without aid ! But then course it came back with vengeance. So now waiting game. Apparently. Three working days then results sent to rhuemy. Then it's up to her to let me know. So hopefully early next week. In the meantime nice ignorant bliss and I've taken 15mg of pred She said after scan take 5/10 !?! Why when I've always needed 25/20. Any their guidelines are 15 at commencement and she knew I in pain back to square one. May as well have a smartie. Anyway will see what the next few days brings

[PMRpro Ambassador in reply to Buttonshutton]

I suppose she thinks if you managed to get under 5mg for the scan, you could manage longer at that. Except it doesn't always work like that!

[Buttonshutton in reply to PMRpro]

No in pain. I want to start again now. Providing the scan confirms PMR. And do it properly. Wasted almost a year now.

[PMRpro Ambassador in reply to Buttonshutton]

And if it doesn't? Something is causing it - and it is pred-responsive.

[Buttonshutton in reply to PMRpro]

I have no idea. Trying not to think about it

[Longtimer]

This puzzles me, had a scan this summer, was on 9mg pred, told I would have to lower to 7mg, which surprised me....struggled but quickly got there, then on day of scan, the dept rang and said it's a mistake, 5 mg is the right dose, so I lowered to 5 mg.....all went well with the scan.....have stayed at 7mg....I felt dreadful 48 hrs after being at 7mg, but scan showed no inflammation!....now it's adrenals!....

[Buttonshutton in reply to Longtimer]

So you didn't need to drop to zero. I wish they were consistent !

[Longtimer in reply to Buttonshutton]

Certainly not, and would have refused to do that. P!ease ring the scan dept direct and ask them what mg THEY require you to drop to....I spoke to them a couple of times...don:t hesitate....

[Buttonshutton in reply to Longtimer]

Thank you. I will

[PMRpro Ambassador in reply to Longtimer]

But it doesn't mean that 5mg was low enough - you do have to look at it both ways round.

[Longtimer in reply to PMRpro]

Maybe Max was wrong then to say no inflammation?.....5 mg may have been masking it...Methinks there should be a definite mg to drop to....

[PMRpro Ambassador in reply to Longtimer]

It's a chicken and egg thing isn't it? All you can confidently say is that if nothing appears in the scan is that at the current status of pred dosage, there is no inflammation. I don't think you can say the PMR isn't active. I might be wrong.

[Longtimer in reply to PMRpro]

My thinking has been I would have been flooded with pain by now, all these months at 7 mg

Overriding problem is intense fatigue....some days worse than others....heavy achey feeling in thighs.....

When I read on here...over the years the things some people have been able to do, it amazes me...I wish I could walk more because of the OA in my lower back..... It eases...

sitting about makes it worse....

Today not so good, think it's because of the problem OH has....last night, he got no sleep at all.......next move I think is getting a sun-lamp light box...any suggestio ns??....I don't know anyone that has used one....

[PMRpro Ambassador in reply to Longtimer]

For you or him? They do seem very effective used properly. Timing is very important it was emphasised in a German medical programme I saw recently.

[Longtimer in reply to PMRpro]

For him, doctor said about needing sunshine etc....and I think maybe he`s right, he does get low winter times....but this is the worst he has been regarding sleep....he is feeling depressed now because he dosen`t think there is an answer to itainad he`ll never sleep. Tonight will be his first taking Zoplicone, but only a weeks worth to take on and off. But obviously it`s not the answer... Is there any way I could access this information that you saw....I am wary of some to look at on Youtube etc because of advertising if you see what I mean....

[PMRpro Ambassador in reply to Longtimer]

healthline.com/health/sad-l...

is pretty good.

I think the time you use it is quite critical - and I assume you have spoken to the GP about it? You need it long enough but not too long - more isn't always better.

I suffered SAD in the UK - we lived in Scotland and the NE so days were very short!!! Here - no problem at all. And all the better when there is lying snow because that makes even a cloudy day brighter.

[Longtimer in reply to PMRpro]

Thank you for that......and yes we have had a miserable dull autumn and winter......horrible....

[PMRpro Ambassador in reply to Buttonshutton]

To be fair, the lower the better - because I suspect they don't really know!!!!

[Buttonshutton in reply to PMRpro]

I think only you know anything 😂🤷🏼‍♀️

[PMRpro Ambassador in reply to Buttonshutton]

I tend to be very pessimistic about things like that though!!! I do know there was a hospital internal study that showed that 10mg had a considerable suppressive effect on the signal.

[Buttonshutton in reply to PMRpro]

I understand it can mask things. But zero does sound harsh but we assume they know. As "they" are the "experts" no wonder this group had to be set up !!

[PMRpro Ambassador in reply to Buttonshutton]

It all depends how long you will have to be below about 3mg - which without lifequakes should be enough for you to function day to day. I'm surprised she was so inconsiderate as to make you reduce at this level over xmas/New Year which is bound to be stressful, especially with Covid about. And she COULD have arranged a switch to hydrocortisone for part of that period which isn't as antiinflammatory as pred but would keep you safe.

[Buttonshutton in reply to PMRpro]

It was. Daughter had covid. Poor kid had to eat her lunch in her room. Doing it properly again tomorrow. Fortunately the other half is a chef so I don't cook but still !! This is my fear. How long will it be. After the 2.5 next week for her bloods I'll ask how long the bloody scan wait is and take from there. I love the term lifequakes. I'm stealing it !! Dreading attempting to work next week. Already had a rocky start as they asked me not to come in whilst daughter had covid (every cloud got last week off as well as this but I'd only been there a week) so if I'm buggered gonna look like they've employed a flake when actually I'm really conscientious and was barely off sick in all the 34 years in my old job but they don't know me. I shall also mention hydrocortisone too. Thank you. Just gonna attempt a bath. If you don't hear from me send help !

[PMRpro Ambassador in reply to Buttonshutton]

BATH??? You are crackers!

[Buttonshutton in reply to PMRpro]

I know but it's worth it for the relief even if takes a month to get out !! I pretend all is ok

[Sophiestree in reply to Buttonshutton]

How was the bath? I LOVE a bath... a long bath... topping up kind of bath.Hope you had the same....

ps - laughed out loud at the 'send help'!

Hope you didn't need it

[Buttonshutton in reply to Sophiestree]

Hi. It was fab. Got in. Stayed there an hour with my kindle pretended I was ok. Then couldn't get up. So managed to get onto my knees and out that way. Ruined the whole effect. But was still worth it. I think some of my back/stomach pains are down to using alternative muscles to the usual arms and legs when they don't work doing daft things like having a bath. Think I'll give it a miss till on a good dose again now ! Ah you gotta laugh or we would be always crying !! Glad made someone smile.

[DorsetLady PMRGCAuk volunteer in reply to Buttonshutton]

Been there, done that!…not with GCA but osteoarthritis!

Does ruin the illusion somewhat… ahh, what we took for granted in our youth 🤦🏻‍♀️

[Buttonshutton in reply to DorsetLady]

I know. Should have done more cartwheels 😃 happy new year to you. Thank you for your advice over this past few months

[DorsetLady PMRGCAuk volunteer in reply to Buttonshutton]

You are very welcome……and just dream about the cartwheels for the moment .🤸🏻‍♂️

[PMRpro Ambassador in reply to Buttonshutton]

I can't kneel except on a VERY thick cushion so that way of getting out isn't an option. I had a large oval bath with a seat at one side and couldn't even get out of that easily. Or gracefully! Couldn't have survived without the en-suite shower - same now!

[Buttonshutton in reply to PMRpro]

Yes back to showers for the time being. Oh your bath sounds like it was ace. What a shame can't use it.

[PMRpro Ambassador in reply to Buttonshutton]

It was in Durham - I do prefer being here

[cycli]

given the track record I doubt she even considered the christmas period. Sorry you are in such pain Buttonshutton. Do take the advice offered and get back to a higher level asap.

[Buttonshutton in reply to cycli]

Thank you!!!!