Still on 5mg. Should I try for 4.5 ?

[Louisnhoe]

Good morning all. I have been on 5mg since just before Xmas after dealing with a flare that happened at 4 / 3.75 when my ESR went up to 31. In January ESR was 19 and I was and still am feeling good on 5mg. Latest ESR is 16 so I am pleased with the downward trend although 16 is still borderline with the lab here. This is exactly where I was this time last year. I have some 'grandma duties ' early May and a 3 week holiday in June so feel reluctant to taper in until after our holiday in case it triggers a repeat situation. I know we don't know till we try but just keen to know how others would feel and what you would do. I have a face to face review with my GP week after next so will discuss with him too. Thanks in advance for any thoughts.

[PMRpro Ambassador]

Do you know what your personal lowest level for ESR has been? It is worth knowing that as something to aim for and be be comfortable with. The normal range is not a range that any single person shows, it is the range of levels found in 95% of a large population of nominally healthy subjects.

[Louisnhoe in reply to PMRpro]

Thank you for your reply. I know it has been 8 so I feel inclined to carry on with 5mg until after the holiday and see what it is then as my next 3 month review will be about due when we get back. Do you think that giving it just that extra bit of time might give me a better picture of how it's all being controlled particularly if the downward trend continues? This is my feeling. I really just want to avoid yo yoing. I think I would also feel more confident about the next taper even if there has been no change in ESR. I do realise that ESR results are not the 'be all and end all' in our situations but they have always been a good indicator and reflected well on how I have been feeling. I really do appreciate your input. Many thanks.

[PMRpro Ambassador in reply to Louisnhoe]

I would stick at 5mg for the meantime - one very good PMR rheumy likes to keep his patients at 5mg for up to 9 months as he finds the rest of the journey seems easier.

[Louisnhoe in reply to PMRpro]

Thank you PMRpro. Yes I have heard about the ongoing success stories from sticking on 5mg for a while.Hopefully I will be one of those! I will definitely feel more confident going forward in a few months time. Thanks again for your very reassuring kind advice. X

[Meggsy]

Hi Louisnhoe - I stayed at 5mg for 4 to 5 months due to various life events at the time. I have always tapered fairly slowly and even more so since being on 5 mg. I’m presently on 0.5mg and would happily stay on a low dose permanently if I had to. However I will try zero with fingers crossed when the time comes. Since 2.5mg I have had to decrease by 0.25mg, All the best. 🌻

[Louisnhoe in reply to Meggsy]

Thank you Meggsy. It's definitely slow all the way from here. Will stick at 5mg for now. Can always change my mind anytime really. That 'undecided' feeling seems to be happening quite a lot with me recently. Good luck to you on your very slow path to zero. !

[Exflex]

One of the GPs at the last practice before we moved would frequently say “we treat the symptoms not the numbers”. Personally I would try a 1/2mg drop using the very slow DL taper plan over 7 weeks.

[Louisnhoe in reply to Exflex]

Thank you Exflex. I know and it's still in my mind but for now I will stick with 5mg. I might wake up one day with that 'go for it ' feeling. ! Who knows? In the meantime good luck to you in your PMR journey.

[oscarandchloe]

I stuck with 5mg for 18 months as I had two hip replacements coming up last year and I was completely stable and had normal energy at that dose. I stayed on for the extra 6 months as healing and daily walking took place, both needing me to feel able to manage the new hips. I've just dropped to 4 and 1/2mg (with some trepidation) but have felt almost the same, just a couple of leg wobbles and taking a 'quiet' day in between gardening and walking. I shall stay here for 4-6 weeks and then drop another half using a form of DSNS plan. I'm almost sure my GCA/PMR has burnt out now so I'm on the watch out for adrenals doing a bit of stuttering. Fortunately, my GP has practically abandoned me to work out my own progress and without this forum I'd feel very uncertain about managing. I started with GCA in 2019 so it's coming up 5 years, a big chunk of your life in your 70's.

[Louisnhoe in reply to oscarandchloe]

Thank you for your response Oscarandchloe. Glad you are doing well. You have reinforced my feeling about sticking on 5mg for the next little while in the hope it makes things easier later on. I wish you well in your onward journey and fingers x'd about remission. Just looking out at all the rain and longing for the summer.Hopefully it will be a good one and you can get out and enjoy your new hips.!