So far, so good!

Hi everyone,

Just a wee update to let you know how I'm getting on with my Pred. I am now eight days in on 15mg and although I have had an improvement in symptoms and pain level, I am still very much up and down, one good day and then one bad day. The fatigue is with me most of the time but worse on bad days. Fortunately, I have not had the side effects which was my biggest fear, only slight tummy ache, sleeping pattern is okay but awake and needing my Pred early in morning (6am/7am). Pain worse in mornings but improves by mid afternoon. What I would like to ask you all is, is all this normal or do you think I need to increase Pred to maybe 17.5 or 20mg. I am seeing GP next week and I would like a bit of advice from the Forum beforehand.

18 Replies

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  • Are you sure on your 'good' days that you are not trying to do too much and therefore bringing on a 'bad' day?

    If you are awake so early why don't you take your steroids then? You do need something to take it with, but many of us have found a small pot of yoghourt is ideal. It may give you a better morning and afternoon.

    Most of us find PMR mornings to be awful!

  • Thanks, Ppolkadotcom, I actually took my Pred early this morning,

    6.30 so will see how I feel later.

  • Hi PatB1948,

    You shouldn't necessarily expect to feel 100% better, not many do, and yes the fatigue is a big thing for almost everybody, as is the feeling of being up and down.

    You don't really want to increase the Pred unless it is absolutely necessary, and you are getting lots of symptoms.

    Although it is usually recommended to take Pred early morning, you can alter that to suit you. Some split their dose to take 2/3rds morning, 1/3rd evening - that sometimes helps through the early morning. Others take it either before bed, or around 2am (ready for the 4am shedding of cytokines which cause the inflammation).

    It's sometimes a matter of seeing what is best for you personally, and what tablets you are taking - the uncoated ones take about 2hrs to take effect, the enteric (coated) ones take about 3-4 hours. Plus you may be one of those people that don't absorb the Pred as well as others and so don't get the full effect.

    If you can, might be an idea to get your bloods tested before seeing GP - I know it's easier in some places to do that, but it should give both of you a better idea if things are under control.

  • Thank DorsetLady, your advice is invaluable. I agree with you that I don't want to increase Pred unless absolutely necessary. I think I will try splitting the dose as you suggest. By the way, I am in Dundee, Scotland which is situated in a beautiful location on the banks of the River Tay.

  • Sounds lovely. Don't know that side of Scotland very well, although did spent 2years in the Outer Hebrides when hubby was in Armed Forces, so also saw a little bit of the western side.

    Take care.

  • My husband was in the forces too and we spent many years near Weston-Super-Mare in the West Country which is also a lovely part of the country. My son and his family live near Basingstoke in Hampshire. We're going down to see them in May and I'm hoping to be feeling a bit better by then.

  • I agree with polkadotcom - are you doing things on your good days that then turn the next day into a bad day?

    And are you in contact with the Dundee support group?

    pmrandgca.org.uk/

    Where in Dundee are you? We used to live and work in Dundee - it has the most beautiful position of any city I know! I haven't seen the new completed waterside yet - but I gather there is a threat of ghastly offices/hotel or something to ruin it! Typical Dundee...

  • Maybe, PMRpro, I am a bookkeeper and although "retired" still go out to one of my clients one morning a week. Perhaps I have overdone it since PMR diagnosis but don't want to give it up as I enjoy and it keeps the old brain active. Will look into finding about the Dundee support group.

    My husband of 47 years and I live at the west end area of Dundee, not far from Ninewells Hospital. The waterfront is looking good and the new V & A museum which is being built at the moment is due to open next year. A new railway station is also under construction, we have Scott's "RRS Discovery" here and an information centre right beside it, we also have the "HMS Unicorn" which is also open to the public.

    Hopefully Dundee will become as sophisticated as Edinburgh etc. (hope I'm not talking too much)!

  • My older daughter had her wedding on the Discovery - and the reception was in the information centre. Both I and OH worked at N/W, my husband ran the Vascular Lab for 10 years.

    My brother still lives just north of Dundee - he and his son are both bus drivers (second life for him) and you may well have seen them around as Santas or Elves...

  • Pat, there's no reason why you shouldn't continue an activity you enjoy. However the secret to managing is to make sure after your activity you get at least an equivalent amount of rest. Google The Spoon Theory (a great little story by Christine Miserandino).

  • I am new to this too, after taking advice from various contributers to this forum, I took my Pred(17.5 got this month) at 2 am with food. Woke up pain free this morning. Waiting now to see how the rest of the day pans out!!! Previously I was like you, very sore in the morning improving throughout the day

  • Early days, I am only 6 weeks in and having read all the great information on this site realise it will be a while before you find a routine that suits you. I'm trying early hours in morning for Pred dose and pain free in the morning but next week I'm going to bring it back to before bed and see how that works. Good luck with GP.

  • Thanks for your comments, Hirwaen, I feel a bit apprehensive about changing time for Pred dose, yesterday I took it earlier in the morning but was in pain later in the evening. I expect I will have to try dose at different times.

  • Hi Pat - if you don't get the immediate 'miracle' effect that others report or that your rheumatologist suggests, it can be a bit disconcerting! That happened in my case and I was put on an increased 20mg dosage after 2 weeks. Improvement was, I realise with hindsight, substantial - but it took a further few weeks to be largely pain-free, to the point where 'normality' was achieved.

    So - give it time and I'm sure you'll adjust to your new way of life that we happy band endure - I mean enjoy😀!

    Best Wishes for your recovery.

  • Thanks, Rokerman for your input, I am seeing GP on Tuesday and although I'm not keen to increase to 20mg Pred, I would consider it if it might improve the symptoms. See what doc says. Here in Scotland, it seems that the GPs' handle the care and treatment of PMR/GC so I don't have a rheumatologist. Also the blood test they do is the PV (plasma viscosity) not CRP or ESR. My PV was very high, that and symptons pointed to PMR diagnosis. I'll let you know how it goes. This is a great site and everyone is so helpful.

  • Funny - I know PMR patients in Scotland who have seen a rheumatologist!

  • Ok, maybe It's just my surgery, I'll ask doc. On Tuesday.

  • Contact the Scottish charity and ask them - they are practically based in Dundee.

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