Tapering - just checking

[Queenie1901]

I have posted before about tapering too fast. Recap - Nov 2019. 15mg prescribed Total relief. Then 15, 15/12.5, 12.5, 12.5/10, 9 over 6 months. Started 8 and discomfort started to reappear but mild. One month later dropped to 7 for a month but notes show I upped to 8mg for few days here and there. Dropped to 6 for a month. More awareness of aches and soreness plus fatigue. Started 5 but realised too low. Research began and found forum. Upped to 10mg for 6 days then slow daily taper 9, 9, 8.5, 8.5, 8 then stopped. After few days realised 8.5 probably better so upped to that. Kept to that then tarted DSNS taper 8.5 to 8 from the 4 day interval point. When got to longer periods on 8mg seems not enough so just went back to 3 days 8.5mg over weekend. However last week coincided with doing a lot of knitting (lockdown sedentary activity but perhaps too much for shoulder muscles!) Now I reach the question.... morning soreness in shoulders has increased since on 8mg last week but and bit stiff in thighs. Mostly fades in afternoon and evening but does not fully disappear. No pain no reduced mobility. It is the hardest thing to decide whether this is ok for me as i have never had full 24 hour cover since 8mg back in summer or if I should just see how it goes. But for how long.? My thoughts are should I stay on 8.5 for a period to see it it settles. What time scale is good for that? 2 weeks? A month? Have I answered my own question here? Gets so confusing! (Oh, and no more knitting....was doing more than usual to catch the Christmas post for grandchildren in Hong Kong! )

[SnazzyD]

I don’t have PMR, just GCA. If it were me I’d try seeing what not knitting for the World championships does for a couple of weeks. One thing PMR doesn’t seem to like is bursts of unusual activity or being held static in one position while tense.

[Queenie1901 in reply to SnazzyD]

Love that about World Championships! With parcel weight an important factor in sending abroad I went for a lightweight option. Not such a light weight option for me evidently! 🤣

[SnazzyD in reply to Queenie1901]

Even elite sport needles make the shoulders hold for too long.

[Maisiek]

Hi, wait and see what the Pros say, but everyone seems to have problems around the 7mg Mark : I’ve been using the DSNS method and going down by 1/2mg after 6. I’m on 5 1/2, not totally pain free, but I can live with it and it’s worth it in my book to be on a lower dose of Pred. Yes- I suffered after too much crochet( baby blankets) but my muscles seem to have adjusted now. Good luck! X

[Queenie1901 in reply to Maisiek]

I must make sure I do the full DSNS next time from the 6 day gap. I thought having hovered around with 8.5,/8 for a while the shorter plan would be manageable. You live and learn!

[DorsetLady PMRGCAuk volunteer]

Give it 2 weeks at least, a month would probably better - and as SnazzyD says just give yourself (and your PMR) a rest.

You seem to have hit a bit of a wobbly step around 8/8.5mg - and that’s not unusual, so just ease off a bit now.. .

...knitting aside, this time of year with winter weather, Christmas etc can be stressful anyway, but this year with added uncertainty of Covid will make it more so.

[Queenie1901 in reply to DorsetLady]

Thank you for that. Comforted to read that the 8.5/8 it is a difficult area. I will stay on 8.5 now and get Christmas behind me. As you say, so hard this time of year and this year especially. Half the family in Hong Kong with 2 little ones, with cancelled summer and Christmas visits and no prospects of a plan for us to meet. Thank goodness for Zoom.! (We do weekly or fortnightly bake off sessions via Zoom - we cook the same recipe at same time 6000 miles apart. Great...no toddler mess at the UK end!)

[DorsetLady PMRGCAuk volunteer in reply to Queenie1901]

Am going to make my Christmas cake today - really should be in New Zealand and doing it together with daughter - but heigh ho!

Instead of stir up Sunday, it will be mix up Monday in my house - never did stick to the rules!

Good idea to stay on dose for now.

[Queenie1901 in reply to DorsetLady]

It's hard with them so far away isn't it? We are making the best use of technology and holding out for 2021. Enjoy the mix up Monday!

[PMRpro Ambassador]

Your symptoms have resurfaced at the same dose repeatedly - that is the sign you have got to your destination for now: the lowest dose that is as effective as the original starting dose. It doesn't matter how slowly you reduce, you won't get past that at any given time. It doesn't mean you won't get lower, just not yet. And you are getting into a yoyo pattern with trying to force to get to a lower dose - it isn't worth it, in the end you use more pred than if you accept the fact gracefully. You might even do better by sticking at 9mg for a month or two and see if it all settles down. And jsut a not - PMR stopped me knitting. You are holding your arms and shoulders in a quite tense position and doing repetitive actions - both poison in PMR.

[Queenie1901 in reply to PMRpro]

Thank you so much for adding to my greater clarity of thinking. So I am now thinking I might forget holding out at 8.5mg and go up half mg further to 9 for a month or so in order to stop struggling around this 8.5 area. I am so aware of all your comments about not letting a constant drip of inflammation get out of control. I can deal with mild symptoms but don't want that to become the rocky road. And I should have thought about that muscle use for knitting! Especially as I haven't done it for a long time.

[Queenie1901 in reply to PMRpro]

As the day has passed the shoulders seem better today so I have packed away the knitting (!) and will keep to 8.5 mg fttb and see if it continues to settle more over next few days and hopefully was just a reaction to that activity. Thanks all for support.