Rheumy happy with my decision to try a very slow taper!!😜👏🏼👏🏼👏🏼

[Angelsmummy]

Hi PMR pro and DL,and any others who might be slightly interested!🥱🥱🥱🥱🤣!Just had a long conversation with Dr Sykes and told him that I would if I possibly can,prefer a slow taper rather than have the TCZ.He was very accommodating about it all,as he knows my aversion to taking any meds unless absolutely necessary.I asked him if it did not work out,would I lose my funding ,and basically he said I would not,would have a couple of months grace but if things worsened after that,he would reapply .So,the upshot is this:7 mg. One day,6 mg the next for a month.Then 6 mg for a month .Then 6 mg one day,,,five mg next day,for a month.Then 5 mg for a month ,then he will see me when I reach that target.( only problem is I didn’t tell him I upped to9mg but have reduced to 8 the last 2 days on advice of DL.!So DL, Pmr pro,any suggestions how to get to the 7 mg he thinks I am on before I start his regime? He said the reason I was put forward as I had a flare at 20 mg(I thought it was 30) and then at 7 ,but he said that seeing as I have been on 7 mg for quite a few weeks,I may be settling down a bit.Regarding the groin pain,he said most probably mechanical as PMR pro said but the ear pressure that has never gone away could be GCA related.So that is where I am,am to be honest .VERY grateful for the advice of PMR pro and DL.Would like to do it without adding another drug into the equation ,so very happy about it( just hope it doesn’t come back to bite me on the bum!( excuse language!) 😂👏🏼😜😀😀xxx

[DorsetLady PMRGCAuk volunteer]

Do you have an actual date for next appointment yet? And presumably he expects you to be at 5mg then… in roughly 3 months time…

I’d try reducing from the 8mg to 7mg, then 7mg to 6mg - and finally 6mg -5mg - so you should just about be at 5mg when you see him next. But rather than the alternate days - try my slow taper - but either start at week 2 or finish at week 4 -so it’s over 4 weeks rather the 5 shown -

This gist of it - (5 weeks)

Week 1 - Sun, Thurs new dose –Mon, Tues, Wed, Fri, Sat old dose

Week 2 -Sun, Tues, Thurs new dose -Mon, Wed, Fri, Sat old dose

Week 3 -Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose

Week 4-Sun, Tues, Wed, Thurs, Sat new dose -Mon, Fri old dose

Week 5 -Every day new dose

Probably easier to look at main post [got a picture that helps -

healthunlocked.com/pmrgcauk...

But if any any time you feel it’s not working the you need to stop tapering - reevaluate.

[Angelsmummy in reply to DorsetLady]

Thanks DL,shall copy this and give it a try.Not sure when appointment is ,only that it is in sept.x🌺

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Well if that gives you a more time...maybe stick to the original 5 weeks then.. at least for first one 😊

[Angelsmummy in reply to DorsetLady]

Thanks a lot,seems a lot more gentle than his plan,bless him.!👍

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Some of us don’t rate the alternate days approach-think it’s a bit hard on body -and I don’t get the point that the patient is in same position at the end of the month as at the beginning.. but perhaps I’m missing something 🤣😂

[Angelsmummy in reply to DorsetLady]

As you said in an earlier post DL,a lot more educating needed by some!(me included)Difference being,they get paid to give us info!😂😂💐

[PMRpro Ambassador]

All been said by DL - a gentler approach than this idea of alternating doses, Wish I knew why they like it!

[Angelsmummy in reply to PMRpro]

Perhaps they have not read DLs tapering plan eh?Many thanks again for your input Pmr Pro,gave me the spur to not accept all that is offered ,even if it was done by them in good faith.x🌺

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Nah…

Even in the guidelines it suggests 10/7.5 - bonkers!

[Angelsmummy in reply to DorsetLady]

Sorry DL,I really am thick or got my head up my backside today,what do you mean 10/75?

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

One of the suggestions in the guidelines is to reduce from 10mg to 7.5mg using the alternate days approach —

“The suggested regimen is:

However, there is no consistent evidence for an ideal steroid regimen suitable for all patients. Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper. Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

Daily prednisolone 15 mg for 3 weeks

Then 12.5 mg for 3 weeks

Then 10 mg for 4–6 weeks

Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5 mg alternate days, etc.)”

Needless to say, I doesn’t get recommended by us…😳

[Angelsmummy in reply to DorsetLady]

Wow!My bugger was taking me down a lot quicker than that!No wonder I felt awful!Glad Istopped at 7 and refused to budge!😜😜🤬🤬

[Sophiestree in reply to Angelsmummy]

🤣