Letter from new Consult.

A letter from Consult who has never seen me to my Dr says she is surprised I am on 29.9mg at this stage of my disease and concerned about the diagnosis being correct at this current time due to this high does. As my bloods show less than 5 CRP thoughout 2017 there has been no sign of ongoing inflammation in the bloods.She wants me to make a concerted effort to get the steroids down as at this stage I should be below 10 and reducing by 1mg a month. I have PMR/GCA diagnosed Nov 2016. 2 flares last May due to her colleagues tapering plan. Am now on 29mg and following DL's plan but at half mg and doing so quite happily with a few withdrawal symptons which I can cope with.

I see this Consult in 5 weeks so want to go armed! Any help would be greatfully received. Thank you very much

[PMRpro Ambassador]

Point out what you have told us. You would have been much lower by now if you hadn't had the flare in May due to overenthusiastic reductions. You don't say what size reduction steps you are doing - at the high doses you can usually manage a bit bigger but if you can't, you can't.

[Hidden in reply to PMRpro]

Thank you for your reply. As I am so sensitive to even a 1mg drop I am sticking to half. Should I be down to 10mg after 13 months or are they being unrealistic?

[Hidden in reply to Hidden]

I have "just" PMR and 19montjs (june 2016) in still on 9.5mg (past week) with a steroid sparing agent. I too seem to have to drop by 0.5mg. I have only been as high as 15mg and flared at 8mg so back up to 15mg. I can see they might be getting twitchy with you on 29mg but if you keep flaring symptomatically then perhaps they need to be encouraging and empathetic rather than putting you under more stress. As pmrpro says point out that flare may be due to rapid reduction as indeed mine certainly was.

[Hidden in reply to Hidden]

I do find their attitude stressful. Seeing a lady Dr in my practice who is really understanding and much more laid back about it all. Thank you for your imput.

[navejasjoe in reply to Hidden]

Hi Poopadoop,

It sounds like you are in the same boat as my wife. She is "just" PMR since May 2016, started at 15mg, but flared when she got to 7.5mg. She is now back up to 12.5mg and hanging in there, but no more attempts at tapering now, at least for a while more.

Joe

[Hidden in reply to navejasjoe]

Yes. It's hard when you have to go back up. I am keeping fingers crossed that the 9.5 is sticking. I definitely have to do 0.5mg at 10mg otherwise I immediately have to go up. Best wishes thou and your wife. 🌻

[Hidden in reply to Hidden]

Navjasjo..best wishes to you and your wife.🌻

The phone wouldn't let me edit message!

[PMRpro Ambassador in reply to Hidden]

I suppose in most suggested tapers you would be - theoretically sooner. And at this level 1/2mg IS extremely slow. Down to 30mg the vast majority of people would manage 2.5mg per month using DSNS. Have you tried it every 2 weeks?

However: every suggested taper I have seen also said it would need to be adapted to the individual patient. The usual flare rate is 3 in 5 patients. And the most common cause of a flare is tapering too fast and too far.

rcpe.ac.uk/sites/default/fi...

This is a fairly typical reduction scheme that does work pretty well for most. They'd have you at 20-ish after 6 months.

[Hidden in reply to PMRpro]

Thank you for link. I will print it off.

[karegodd in reply to PMRpro]

Thanks for the link to this article. As a newbie I appreciate this resource.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Short answer - they are being unrealistic. As we’re always saying, what looks achieveable on paper very often isn’t in real life - for a myriad of reasons! We are all different and have to do what suits us.

It took me 4&half years to get off Pred (started 80mg), and although my bloods were good nobody suggested tapering more quickly. I know my GCA was still “there” until a few months before I stopped Pred altogether- a total of 5&half years - so don’t be rushed!

[Hidden in reply to DorsetLady]

Thank you DL for that. I am always saying that the GCA is still rummaging around in my head. The original Consult would have had me on 10mg last August if I had followed his plan!!! As she is his colleague she has obviously taken his side so probably wasting my time going to see her. Don't think my GP will agree to referring me to Dr Samy Zakout at Weston Super Mare Hospital as I believe he specialises in PMR/GCA.what do you feel please?

[PMRpro Ambassador in reply to Hidden]

Why not? Theoretically you are entitled to a second opinion, especially if you were not offered different options originally - and from what I have heard he is quite good. It is worth asking

nhs.uk/NHSEngland/AboutNHSs...

REad the page carefully - it is your legal right.

[Hidden in reply to PMRpro]

Thank you for the info it will be most helpful. This forum has helped me so much I am so greatful to everyone.

[Hidden in reply to Hidden]

Mmm. Rummaging good description for PMR in body too.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Worth requesting referral- if you don’t ask, you don’t get!

Good luck

[Hidden in reply to DorsetLady]

Thank you.

[1602 in reply to Hidden]

Totally unrealistic - it's your body that's at war NOT THEIRS.

Stick to what works for you, I've been ignoring my rheumy for the past 12 months after all what he can he do???? Enlist your GP's help if necessary and as I need to remind my rheumy whenever next I get to see him low bloods mean the pred is doing its job!! Good Luck xx

[Hidden in reply to 1602]

Thank you for your support. They don't know how we feel and as my CRP was 258 before diagnosis I feel there was alot of inflammation for the steroids to keep under control which is possibly why I am struggling.

[Hidden in reply to Hidden]

If I had been as high as 258 I would believe it would take a while to bring under control too!!

[Hidden in reply to Hidden]

Glad you think that as well. Thank you.

[piglette in reply to Hidden]

Over four days I had CRP readings

Day 1 370

Day 2 415

Day 3 296

Day 4 141

I upped the pred on day 2.

[Hidden in reply to piglette]

Gosh yours were high! Shows the Pred works.

[Longtimer]

Be very careful, I followed a rather fast lowering for my first Rheumy,6 years later still at 10mg after many painful flares!!😕

We are all different on what we need........I will do it slowly my way......ears closed to so called professionals.....

Good luck.....

[Hidden in reply to Longtimer]

Thank you.

[arcr]

I have a similar scenario, except they still cannot give me a proper diagnosis. Meanwhile I had to get back on 20mg Prednisone, then taper to 15.5. My elbows and hips are screaming! But I cannot get any definitive answers.

[Hidden in reply to arcr]

Oh no! It is so frustrating and adds to the stress that we don't need! I hope you get sorted.

[arcr in reply to Hidden]

Thanks

[PMRpro Ambassador]

This post is 4 years old! And the original poster has left the forum so won't be notified of your reply. Hidden means they have left.

[Hidden in reply to PMRpro]

Thanks I didn't notice that