What a dope! Mucked up my pred and I feel awful

[Gimme]

I'm mid trying to taper from 5 mg to 4.5 mg. didn't feel so good the first couple of times at the lower dose, but subjectively, I felt that my body was starting to adjust to the lower dose. I have been on 5 mg for months and had a brief excursion back up to 6mg for my hols, but my doc has been nagging me to reduce the pred.

Woke up in the night in a lot of pain and when I went to make a cup of tea, I twigged that I only took 2 mg yesterday by mistake. Fell asleep again and woke this morning wracked with pain. I've missed the odd dose before, and not suffered too much, and nothing like this. I am in as much pain as I was before pred, if not more, and I just feel really ill. I can't lift anything heavier than a coffee cup and even that is pushing it. I took 5mg of pred about an hour ago and I am still waiting for it to kick in. Normally, I am ultra responsive to my morning dose.

I should have known something wasn't right. I went out for lunch yesterday with a friend and a short walk in the park. My legs were really hurting and I felt so exhausted after that I slept for about 3 hours when I got home. I've been so well since my holiday.

I had planned to go for a swim today before this; the only time that I feel my old self is in the water. If I recover enough to leave the house, I might go and sit in the jacuzzi away from the jets to see if that helps as the water is warm. But I think it might be a day on the sofa watching David Attenborough.

Do you think 5mg is going to be enough for today? I'm reluctant to go higher again as the grumpy rheumatologist gets all hot under the collar about yo-yo-ing with pred.

oh, and to make matters worse, my household heating packed up last night, and I don't feel up to doing a few rounds with BG to come out and fix it. I'm going back to bed for a bit.

[PMRpro Ambassador]

To be honest, it sounds to me as if you may be suffering on 3 fronts! It seems a lot of reaction very quickly yesterday for "just" 3mg missing from your dose so I wonder if you were sickening for something into the bargain. The cold house will make things worse as well.

And when it comes to the heating - it won't sort itself, so you really need to fight the fight with BG sooner rather than later, Is there anyone who could help - emphasising the "vulnerable customer" and "illness" aspects? I'll take using the buzzwords even if I dislike being thought that ...

[Gimme in reply to PMRpro]

I think you might be right, as you so often are. The pred has kicked in now, but still pretty sore and I am very sleepy. My temp was up less than a degree, but I took some paracetamol anyway.

I agree, does seem like an extreme reaction to only taking 3 mg less, especially as I have forgotten altogether a couple of times and never felt as bad as I did this morning. That is the worst I have felt since I started pred. I hope I'm not getting flu or covid.

I haven't managed to get through to BG yet, but this seems to be an intermittent fault, related to the pump. The heating has just half come on (i.e. 2 radiators) and my neighbour is coming round in a while to get my electric heater down from the loft. Plus, I have a leccie blanket if I am in bed. It is below optimum, but not totally freezing. BG were here 2 weeks ago to do the pump and I was put on a priority list then. I told them I am 65 and an asthmatic and that I have an autoimmune condition and that seemed to do the trick.

[Boss302Fan in reply to Gimme]

Not a doctor and I don’t like pain. Going by how you described it I’d probably have taken 10 mg and if that took care of it, the next day gone back to 5 mg for a few days (if 5 mg was taking care of it before my goof, if it wasn’t maybe tried 6 mg). As to the doctor, who says you need to tattle on yourself? When you see him next tell him what dose you’re on and that you need a refill. If he pushes the subject, tell him you had a few flares and ask him what he expected you to do, ignore it when the pain is about a 6-7/10? Just need to be sure you know the difference between a flare and symptoms of AI. The later you may have to tolerate a bit as long as they aren’t too intense.

[random901]

Hi Gimme! Get yourself on the vulnerable list like me. It applies to gas, elec, and I believe water.

[DorsetLady PMRGCAuk volunteer in reply to random901]

Yes it's applicable with water companies as well.. in fact mine was more switched on than BG. and notified the local fire & rescue service to come and check/replace the smoke, heat and carbon alarms..

Mine based on age - and osteoarthritis - but quote whatever you have and gets you assistance

[PMRpro Ambassador in reply to DorsetLady]

Let's face it - many things are more switched on than BG ...

It is a long time ago but my mother had a contract with her gas boiler for maintenance. When it didn't work when the flat was sold after her death, the repair person who went to sort it (not BG, the contract was lapsed) said it had never been touched from the day it was installed. I wouldn't trust them to see me across the road!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I don't have a repair contract with BG.... my trusted company is local - who first came to us when we moved into this bungalow in 1996. Then he was a one-man band and just did boiler/heating serving etc and used to bring his father along who had a cuppa and chatted to hubby - all things countryside.

Company has expanded a bit since then, acquired a bathroom installation wing but his ethos has been passed on to his staff.

Recently when I had had an issue with my shower cubicle door [installed long before they expanded firm] I sent an email on Sunday evening for one of the girls in the office to read first thing Monday morning - when lo and behold I got an immediate and lovely reply from the boss saying we'll get on it first thing tomorrow...

Unfortunately not repairable, so new shower cubicle installed last week. 🚿

[PMRpro Ambassador in reply to DorsetLady]

I always had Worcester boilers or a subsequent iteration and their local rep did the lot. Anyone else would just look at them and admit defeat in terms of getting parts! It was the same guy year after year - almost good friends.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes ditto…on both..

[Gimme in reply to PMRpro]

BG are pretty useless normally, but so far they have been responsive with the heating. Once you get through to someone, that is!

[random901 in reply to DorsetLady]

Yep, got the fire and mono alarms, too. Huge fire engine arrived with 2 crew - made the neighbours' net curtains twitch!

[DorsetLady PMRGCAuk volunteer in reply to random901]

Show off 😊 mine were a couple of ladies in a fancy van!

[random901 in reply to DorsetLady]

🥳

[Gimme in reply to random901]

ha ha that tickled me, two crews of hunky fireman turning up, bet your street cred went up no end. 🤣

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro's comments...on all fronts

[Gimme]

Finally got an appointment with British Gas for tomorrow. Still got the aches and pains, so I guess I must be sickening for something and the hiccup with my meds must be a coincidence.

[PMRCanada]

Perhaps you are feeling such severe symptoms so quickly due to the stage at which you are currently tapering (5 down to 4.5). When you compare previously missing a dose altogether in the past not resulting in near as much pain and fatigue, what dose were you on then?

I just know that if I accidentally forgot 3mgs of pred at my current dose (tapering from 6 down to 5.5), my body would be strongly protesting! I’m barely, finally adjusting to the new dose (I’ve been trying to taper for about 7 weeks now, repeating each new drop down twice (2 weeks), instead of once (one week). The adrenal symptoms I’ve experienced during this stage of my taper are new AND debilitating. On 6mg no problems.

Missing part of a dose while tapering below 5mg may result in a quicker, more severe fallout (which may require more pred temporarily to sort). Your rheumy may not be pleased, however a few days at 5.5 or 6 may not interrupt your overall taper much after all, but it may help address how awful you are feeling.

Then again, like others have suggested, you might have already been cooking up another illness in the background, hence your awful symptoms. Either way I hope you get some relief soon! And don’t beat yourself up, most of us have been there, done that.

[Gimme in reply to PMRCanada]

Thank you. No clear idea what happened yesterday. Still no sign of anything viral. I'm still a bit sore today, but nothing like yesterday. It is the first time that I have felt that much muscle pain, even at rest, since I started pred. I do think it is the PMR, because I was hurting in all the same places as I was before I went on pred. All I can think is that I have been trying to get by on 4.5 mg and missing most of my dose on Monday was just enough to tip me over the edge. What I have noticed from reading the posts in this group is that different people seem to respond quite differently to attempts to taper, so maybe it is just that. As I feel a bit better today, I am going to stick with 5mg for a couple of days and see how I am then.

It does seem to confirm for me that my PMR is not nearly as burned out as my doc would like to think and I think that 5 mg is still what I need for now. I don't know why the docs are so het up about it. They forget that I only started on pred in Feb 2023, not even a year yet. At the beginning, they were adamant that I would be taking it for at least 2 years. I had to reduce very quickly at the beginning, due to the psych effects and was down to 7.5 mg after 3 weeks, which luckily seemed to be enough for me. So my cumulative dose must still be comparatively low. I get the impression that they are disappointed that I have been stuck on 5 mg for so long, like I am not trying hard enough.

They seem a bit flummoxed by the fact that my inflammatory markers have never been raised, but as we know that can be the case with PMR. It took so long to get a diagnosis that they had long missed the acute phase at the beginning when they might have been raised. I'm not in any doubt that I have PMR from the time I have spent reading the posts in this group. Thank goodness for this group, because I really would feel alone without it. Every time I go to the doctor's, I come away feeling unheard and like they really don't have a clue.

[borednow in reply to Gimme]

Have you thought about changing your GP? I have and it's one of the best things I ever did. We really should not be treated as a disappointment or have to tolerate grumpy "specialists"' Everybody at the new practise has, without fail, been superb. Hope you feel much better soon.

[Gimme in reply to borednow]

Thank you. That is a good point. Though I think my experience with the PMR has a lot to do with how HCPs as a whole tend to view pred and a general lack of understanding about PMR, with some notable exceptions, of course.