New symptoms

[Abbey17]

Hi I’m slow tapering from 5mg - 4.5mg getting usual side effects: lower back stiffness/ pain but experiencing pain in both arms from upper arms to wrists - this hasn’t happened before and wondered if anyone else has had this? Speaking to GP on Wednesday but would like to know if this is common

[DorsetLady PMRGCAuk volunteer]

slow tapering from 5mg - 4.5mg getting usual side effects: Do you mean side effects from Pred, or return of PMR symptoms? I would guess return of symptoms from description.

As you seem to have been stuttering around this level for some time according to previous posts I think you may have reached the smallest dose you can - for the time being anyway.

You are not reducing relentlessly to zero, you are trying to find the lowest dose to control your symptoms.....and it sounds as if you have dipped below that.

With the additional symptoms you have now - you need to increase your Pred to get them back under control......you may find just going up by a mg or 2 is enough if you act quickly. Whether you wait until you speak to GP or make your own decision (if authorised by GP) it’s up to you.

And yes they sound very common for a PMR flare.

Not sure if you are using a slow taper as well as reducing by 0.5mg time - but if you’re not it might be sensible. This link gives a choice -

healthunlocked.com/pmrgcauk...

[Abbey17 in reply to DorsetLady]

Hi yes I am using the slow taper I guess I am too determined to get off the steroids. I was pleased to successfully get to 5mg maybe I’m pushing it. Thanks for your advice

[PMRpro Ambassador in reply to Abbey17]

Stick around at 5mg for a couple of months and then try again - it will work eventually but sometimes a holiday from the taper helps.

[Abbey17 in reply to PMRpro]

Yes I will thank you

[DorsetLady PMRGCAuk volunteer in reply to Abbey17]

Okay, but tbh if you need 5mg or even 6mg it’s what you need - and no matter what taper you use you won’t get below it - not for the moment anyway...

....and no matter how determined you are, your PMR will dictate things.

Just be pleased to be a low dose ...only 3 years in ...some are still on higher doses at that time.

[Abbey17 in reply to DorsetLady]

Yes sorry I was agreeing with you - I was explaining my reasoning for the reduction, probably my ‘want’ to reduce is counter productive- you are right and I do need to stay on 5

[DorsetLady PMRGCAuk volunteer in reply to Abbey17]

Yes fine.....I do know how you feel, 🌸

[DavidMF in reply to DorsetLady]

Not to depress you, but I'm struggling with 4.5mgs and that's after over 6 years. Chin up.

[Abbey17 in reply to DavidMF]

🤦‍♀️Patience was never my strong point! 🙃 Thanks David

[PMRpro Ambassador in reply to Abbey17]

If you learn nothing else with PMR it is patience

[Abbey17 in reply to PMRpro]

🤦‍♀️🙃😁

[arvine in reply to DorsetLady]

so you probably have read my story of late, so I am still wondering, if all these symptons I am having since Dec, have been caused by my reducing from 5 to 4mgs pred, I did the dead slow method, started in Nov, by Jan on 4 every day,started having issues in Dec, bowel habits changed, stiffness, pain in shoulder, glutes, hands, fingers ,etc, had ultra sound,catscan, bloodwork etc, and to no avail according to my dr,s, my rheumy appt last week said "adamantly" not PMR! and insisted, bowel problem, has sent letter to my GP, suggesting referral to pain management dr,. I had the blood test for RA and anti cpp done, both showed negative, WBC was flagged as hi, and neutrophils, which she ignored, as did my GP, said he wasn,t worried about that as WBC always hi, which in fact was not, when had bloodwork done last August! anyway, I am seeing GP this wednesday, but hearing your story sounds somewhat familiar, so would be possible to have a flare lasting this long, and asked about goiing up to 10 for couple days, as suggested by PMRpro, telling rheumy suggested by health forum I have been on for years, she again, adamantly said NO! get bowel problem resolved, which according to my GP has been caused by spasms, and my IBS? am at a loss right now, and in pain every day, for most of day, getting exhausted with it,

[Abbey17 in reply to arvine]

why can you not sort out both issues! Don’t know why they are saying that to you. Shouldn’t be one or the other and you are suffering. Despite everything pointing to me having pmr (GP & Rheumy confirmed)- my bloods have never been high. I also had an emergency bowel op 12 months ago and keeping my pmr stable during this time was a priority for my GP - the lack of consistency with GPs is quite concerning. Personally I think you do need to increase

[arvine in reply to Abbey17]

well as of 2 weeks ago tomorrow, I went back up to 5 mgs, but to date has not made a difference in pain, stiffness etc, but thanks for your input and advce Abbey17

[Bobbybucknut in reply to DorsetLady]

In a similar place - have been reducing by 2.5mg every 3 weeks since December (from 15mg)with hitty missy results, currently in a poor place when I attempted 1mg which lasted for 2 days 😬

[Abbey17 in reply to Bobbybucknut]

Take my hat off to you - I have never been able to drop so much at a time sorry your in a poor place - I do the slow taper and it is definitely easier

[DorsetLady PMRGCAuk volunteer in reply to Bobbybucknut]

Might need to go back up a dose and get back on track.

We know 15-12.5-10 is quoted in the guidelines - but it’s not achievable for everyone! Not the individual’s fault, but some doctors seem to think it is.

I had GCA, so high doses and relatively easy tapers early days - but once I got to 15mg I did 1mg drops until I got to 7mg and then 0.5mg to zero.

I took nearly as long to get from 10mg to zero as it did from 80mg to 10mg

[Bobbybucknut in reply to DorsetLady]

I have gone back to 5mg which was my last “safe”place and will restart the titration down by .5mg when I stop feeling so rickety 🙄

[Koalajane]

I am at a similar stage and have reduced by 0.25mg which seems to have worked so now on 4.25 mg and hoping to taper to 4mg in a week or so

[PMRpro Ambassador]

I would say it is a not uncommon place to get early signs of a flare - plus everything DL says above.