am I relying too much on Pred?

[Gossiplady]

I feel that I am totally stable on 1mg. Brilliant. If I have an awful stressful day, I mentally panic. Better up to 1.50mgs immediately. Back to 1mg the following day if I feel ok and continue with my life. But should I treat Pred like this? Rather like taking paracetamol immediately if I get a headache. Shouldn’t I face up to the fact I have had a stressful day and live through it? In other words, “grow up dear”. But the idea of a flare terrifies me.

[SnazzyD]

It sounds like you don’t feel happy about it. How often do you have really stressful days? What is your worst case scenario, as you see it, if you don’t take that extra little bit?

[Gossiplady in reply to SnazzyD]

Hi SnazzyD! Thank you for replying. Had a scenario at the surgery over when I could have my pills. Receptionists had a total lack of empathy, and continually flattened me. It was Friday, so wouldn’t be able to collect until Monday. Ended up doctor coming to see me, leaving a patient , and gave me the pills. Meanwhile receptionists said they would report me to the Practice Manager for rudeness! I wasn’t! Went home and wrote a letter of apology to my own doctor and returned to surgery to push it through the door. Oh dear.

[Gossiplady in reply to SnazzyD]

Sorry, to clarify, pills were ready and 6 feet away from receptionists. Told the doc I am on steroids and she made no comment. I am known for being this happy smiley old lady, giggle about everything, but this was upsetting and as I live alone, prone to overthinking at home. Have now recovered and back on 1 mg, but should I ignore stress and not grab Pred?

[powerwalk in reply to Gossiplady]

Sounds very unpleasant!! I'm annoyed for you just reading this!!! Not an expert, but dont see what harm occasionally it would do, such a small dose if you feel overwhelmed. Wish i was on 1 mg, youve done well! (On 5.25 after over 7 years). Keep up the good work.

[Gossiplady in reply to powerwalk]

Thank you Powerwalk! Keep strong, we will get there.

[SnazzyD in reply to Gossiplady]

Nobody should have to endure that!

What I was asking is if you are feeling overwhelmed and want some extra Pred, albeit a small dose, what do you worry will happen of you don’t take it? How often are you feeling stressed enough to top it up?

[Gossiplady in reply to SnazzyD]

Hi SnazzyD! Not all that often, it is just that if stress rears its ugly head I mentally panic, “panic , alarm, flare, where is the Pred?” You will have read answers from your friends DorsetLady and PMRPro and will take their advice. Thank you for understanding me and replying to me. Much appreciated! Keep smiling!

[SheffieldJane]

I think there is no harm in taking this boost when you are at such a tiny level you may instinctively know that your Adrenals need a bit of help. I am on 5 mgs and I know that I can’t rise to demanding occasions either.

[Gossiplady in reply to SheffieldJane]

Thank you Sheffield Jane. I just thought I was on my own. Thank goodness for this wonderful forum. Flares in my opinion knock me sideways, not just the pain, it is the awful mental thoughts of “here we go again”. I have no worries of never getting to the zero mark, I accept the situation I am in, I just wish I could ignore stressful situations. At 35 years I would laugh it off but at 85 and living on my own, brain ticks in a different way. Never mind, we will all keep strong and smiling.

[Louisa1840]

You sound as though you have a great attitude and are a very positive thinker. Well done! I am cross for you over the way you were treated by your Doctor's practice!

I agree with what others have said about not worrying about going up a milligram or two if you feel you need it. You are at such a low dose anyway it can't hurt you. I remember reading that a world renowned rheumatologist kept some of his patients on 5 mgs for life as he felt such a low dose could do no harm. You don't need added stress over having a little extra pred.

Keep strong and smiling and we will too......

[Gossiplady in reply to Louisa1840]

Thank you Louisa1840! Let’s keep grinning!

[PMRpro Ambassador]

To be perfectly honest - if 1,5mg covers all such events for you, why not stay at 1,5mg and accept it? That is what I would do.

I've tried to get to 5mg (with the aid of tocilizumab) from 6 a couple of times and the difference is marked when it comes to dealing with that sort of event. For me it isn't even dealing with Jobsworths, it is screwing upthe mindset to deal with paperwork type things - or anything else really.

I would request a call to the Practice Manager or, preferably the doctor who dealt with it, and calmly put YOUR side of the event, the receptionists obviously need some training on how to identify a genuinely upset patient who is panicking about something, Abuse is one thing - an upset patient is another and I know exactly how you felt, it happened to me years ago when a consultant tried to put responsibility for getting results from another hospital on ME, not them, and I responded by asking how I was supposed to be responsible - obviously I raised my voice in surprise/shock and they decided I was being abusive, A nurse approached me with raised hands - apparently they teach them that is calming, for me it is a trigger, I was almost hysterical by the time they had finished,

[Gossiplady in reply to PMRpro]

Thank you! I will take your advice of course. After sending the letter of apology on Friday evening, purely to try and calm things down as I definitely wasn’t rude, on Saturday morning the surgery rang me. I didn’t answer it. Probably the Practice Manager.. The surgery is closed of course if I wanted a doctor, but it’s open to give a patient a slap on the wrist. Is this what medicine and NHS has sunk to? Keep smiling.

[PMRpro Ambassador in reply to Gossiplady]

Receptionists do have a very great responsibility BUT too often someone develops too great a sense of their own importance, not just in the NHS, anywhere. It may well have been that they were calling to get your side of things, not to smack your wrist, but I know how scary it can be to pick up that phone when you think you might be "shouted" at. Easier for you when YOU make the initiative.

[Gossiplady in reply to PMRpro]

Thank you.

[DorsetLady PMRGCAuk volunteer]

Agree with with PMRpro - why not go to 1.5mg and stay there....if it helps your peace of mind, and probably better that jumping up and down [metaphorically]with your dose, which probably isn't helping. If you think you are going to be stressed at 1mg, you probably will be.

As for receptionist, if you feel the need maybe write a letter to Practice Manager [even though you have already written to GP, who hopefully will have sorted] and tell them how upsetting it was for you, and that you weren't rude..

[Gossiplady in reply to DorsetLady]

Hi DosetLady! Thank you I will. I see what you mean. Keep smiling and thank you for answering me. If I cannot rely on the surgery I know I can always rely on HU.

[PMRnewbie2017]

I'm also sorry to hear you had to endure all of that nonsense. I think you need to decide if your aim is to get off Pred all together or if you feel you should stay on it for the rest of your life. Personally at 85 years young, I think I would stay on Pred and don't alter the dose unless it is absolutely obvious that you are experiencing signs of Adrenal Insufficiency or your PMR is activating again. I'm not a great fan of popping Pred in the way you describe "like Paracetamol". I should imagine that your adrenal function is probably ok now because you are on such a low dose. If you think your PMR is still active however then I would do as PMRpro suggests and just stick at 1.5mg. Yo-yoing Pred is not a good idea metabolically speaking and 1mg to 1.5mg is a 50% change even though the numbers seem small. Remember we are not just talking about the adrenal cortex but the hypothalamus and pituitary as well, all of which work together. Older people will naturally have a reduction in cortisol output so in a way you are fortunate that you can top it up but you don't want to mess up the normal metabolic feedback mechanisms by yo-yoing.