Common sticking point....7mg to 6.5mg

[Mary63]

I can’t believe how many posts there have been in the last week or so about the difficulties of this reduction. I know that it is a common adrenal gland sticking point, but many of us have also flared at this point.

[DorsetLady PMRGCAuk volunteer]

Well, if your adrenal are trying to work again that must put extra stress on your body overall...and we know how much PMR or GCA loves stress!

Another thing the docs don’t warn you about. 🤨

[bunnymom in reply to DorsetLady]

Amen. Put it on the list.

[Hidden]

I have been on 7mg for nearly a year,tried several times to get to 6.5mg all failed the last attempt 4 weeks ago put me back on 15mg as it was so bad I am now back to 10mg and will go slowly from there again.

I'm actually scared of tapering now as I've had so many failed attempts after 7mg.

And I've been on pred for 5 years.

I do hope you crack it please keep us informed, all the best Diane.

[Constance13 in reply to Hidden]

I’ve been on pred for 6 1/2 years, was stuck on 7/8 mg (had a few flares) for a long long time. Now down to 4 mg. I’m going to stick on that - for a long long time.😂

[Suet3942 in reply to Hidden]

Hi Diane. I’m exactly the same. Had pmr 5 years this month. Cannot reduce below 7mg. Up and down like a yo-yo. Thank goodness for this site otherwise we would be totally bewildered and scared.

[PMRpro Ambassador in reply to Suet3942]

If you get to a given dose more than twice and have a flare it is your body telling you to stay there for a few months! You have found what you are looking for; the lowest dose that manages the symptoms. For now. It doesn't mean you won't get lower - just not yet.

You only end up yoyoing (and in the long run end up with problems) if you try to force a reduction, If symptoms come back, go back to the last dose, wait a month or two and try again very carefully and with only 1/2mg if necessary. If the same thing happens - just go back and be patient. If 7mg is it - stay there.

[Suet3942 in reply to PMRpro]

Thanks Pmrpro. I feel lousy this morning after reducing from 9 to 8 a week ago. Think I’ll go back to 9 and stay there a couple of months. X

[PMRpro Ambassador in reply to Suet3942]

That does sound like a plan!

[PMRpro Ambassador]

We've often said 7mg is a bad point!

[bunnymom]

I'm finding that also to be true. Back to 8 and feeling like my "new normal" self. Funny what I've become thankful for.

[BonnyQuine in reply to bunnymom]

Snap!

[Nuff1]

How many manage with no real problems though - they're unlikely to post here so the ratio is not known - unless someone's seen figures elsewhere?

[dancersize in reply to Nuff1]

My sticking point was 6 to 5.5 and I'm still there. My rheumy is happy for me to stay there three months until I next see her.

[mtrafter in reply to dancersize]

I too am having trouble going down to 5.5 from 6, its taken about 18mths to get to 6mg from 25mg. Have only managed 5.5 for 2 weeks, I developed a respiratory infection, problems with my hypertension , occipital headache unrelieved by Panadol. Brain fog you wouldnt believe. Had a course of antibiotics plus bronchial inhaler for my first ever wheeze. 3 weeks later my chest is clearing but still have cough and headache with added neck and shoulder stiffnes I have increased my pred back to 6mg over last 2 days but headache returns in the afternoon.

My question is can a PMR flare present with headache? I never had headaches pre diagnosis and have not had a flare so far, it gets tricky trying to work out what's a withdrawl and what is a flare and at this dosage are my adrenals not waking up.

Just like to say what a fabulous group this is, I have learnt so much and have learnt how different our journeys are with this confounding disease and the support that is given so freely. Thankyou😀

[PMRpro Ambassador in reply to mtrafter]

I'd post this question as a new thread - more people will see it. My suspicion would be adrenal function not keeping up. 25 to 6 in 18 months isn't bad - the median (average) time to 5mg is 18 months and probably from a lower starting dose.

[Linny3 in reply to PMRpro]

that is depressing to hear. it will be two years for me next month and I can't get past 11mg.

[PMRpro Ambassador in reply to Linny3]

It took 4 years for me to get reliably below 10mg - not everyone absorbs all the pred, it can be anything from 50% to 90%. Obviously somone who absorbs 50% apparently needs a higher dose than someone who absorbs nearly all.

[Casia in reply to Nuff1]

I got down to 5 mg before discovering this site , having suffered with PMR for 2 years. The road to 5 wasn’t easy but as I didn’t really understand about flares and thought my discomfort was due to withdrawal I kept going and am now comfortably on 4 tapering to 3.5 today. I did have a flare when I went to 3 a few months ago, clearly too hastily so increased to 4 for 3 months and have felt pretty good . I’m still not really sure whether I had flares on my route to where I am now or whether I’ve been lucky and not had as much pain as many of you though still have raised CRP. i do either walking/Pilates/swimming each day and feel blessed to have such great friends. This forum is brilliant and I’ve learned a huge amount. Thank you

[Sho-Sho]

Totally understand - I have had to stick at 7.5 for three months as felt so awful when trying to taper by 0.5 even doing the DSD method. I have GCA so started at 60 two and a half years ago - I have many moments when I feel worse than I did at the start, except no headaches and no inflammation showing in my blood tests - It's OK if I stay at home and do nothing, - I was warned by my rheumi but never imagined it would be like this.

[HeronNS]

As PMRpro says, some of this depends on how well we absorb pred. I believe I metabolize pred very efficiently and my first real sticking point was, believe it or not, around 2! Where I have been, with the occasional minor flare when trying a lower dose, for about two years.... in the meantime my episodes of "deathly fatigue" have diminished a great deal, so I guess staying at this dose, or occasionally a bit higher, has in the long run been okay. For others I suppose the sticking point is 5 or 7 or 8, or if lucky only 1....

[Marilyn1959]

So glad you posted this. Have had three failed attempts to go from 7 to 6.5mgs in as many months. When (note not 'if') you crack the code let us know, so that we can all celebrate with you! Best of luck.