Weaning problem

[Joseph14612]

So I started on 60 mg pred back in August 22 for PMR and GCA in the US. Been up and down for months ....I am taking the 6th Actemra inj on Monday.... My bloodwork showed inflammation numbers normal...I know about Actemra masking these numbers....I was down to 30 mg for the second time with good results, so my reaummy wanted me to go down to 20 mg pred., but I suggested 25 mg.... He said ok, try it for a week, but my first day, headache came back and I don't know if it's a flare up or just the lower dose....The reaummy did say, if symptoms return, go back to 30 mg.....I hate going back and headache is not unbearable....don't know what to do...any advise would be appreciated...

[DorsetLady PMRGCAuk volunteer]

Even with Actemra I would say you are reducing much too quickly. Both PMR and GCA last an awful lot longer than many Rheumies seem to be willing to acknowledge - and certainly GCA appears to flare readily within the first 6 months in particular if tapering is too quick.

This link shows explains the difference between steroid withdrawal and a flare ( and to be honest so quickly after a reduction) I would suggest former - but with your track record it’s best not to assume that perhaps -

healthunlocked.com/pmrgcauk...

Think you need to give current dose a few more days to ascertain for sure, but you do need to slow down your tapering…you are not reducing relentlessly to zero - a point which seems to have bypassed your Rheumy… and it’s all very well saying return to previous dose if you flare- the aim is not to flare in the first place!

It can be done, I wasn’t on Actemra [hadn’t been approved for GCA in UK at the time] and I managed to get from 80mg to zero with not a single flare.

[Joseph14612 in reply to DorsetLady]

Thank you....I will wait a day and if it persists I will go back to 30 mg, maybe even 35....

[SnazzyD]

If it was the first day it may be due to withdrawal. Docs seem to forget (or don’t realise) that your body has had to learn to live with a drug that affects every part of you. Take it away and it has to readjust. Even cutting out sugar from one’s diet can cause an upset, Pred is no different. Just because its a desirable thing to do to reduce side effects, doesn’t mean the drop is easily received until your body has readjusted just about everything. I suffered with withdrawal even at high doses and with smaller than standard drops. I would feel pretty fluey achey and tired with a headache often from day 1-4 for a few days after a drop. I would wait a bit if it were me before panicking.

The other thing that docs seem to gloss over is that Actemra deals with one type of inflammation mediator (IL-6 and known to be a big player) whereas Pred is an all rounder. If you have other mediators involved the withdrawal of Pred might show and you need to slow down. It does seem that many docs regard Actemra as a wonder drug that works with everybody and Pred becomes unnecessary. It may be that you have always been made to reduce too fast from the start. I dug my heels in with my doctors early with my GCA because I felt that their plan was too fast based on just withdrawal alone, let alone the GCA. I got many reprimands but there was not a lot they could do and I stuck to my guns on a hunch without a flare. We’re all different though and it made for very stressful consultations!

[Joseph14612 in reply to SnazzyD]

Thank you, I do have an appointment coming up in 2 weeks....I will have to discuss this with them ....I will save both these posts to remind me....thank you Snazzy and Dorset Lady!

[PMRpro Ambassador]

I'd be inclined to say the headache appearing immediately you reduced the dose is more likely to be an indication of steroid withdrawal. However - after only 6 weeks, I think the rheumy is being a bit ambitious. My own rheumy said to wait before starting to reduce the dose and to do so slowly. I "only" have PMR but I went only 1mg at a time from 19mg and only after at least a month, possibly more.

In the literature it suggests TCZ/Actemra will work within 3 to 6 months - contrary to many expectations it isn't instantaneous. And it only works 100% for half of patients. There are at least 3 mechanisms that may create the inflammation in GCA, only one of them involves IL-6, the inflammatory substance on which Actemra works, the other two, if present, require some pred to keep them under control.

[Joseph14612 in reply to PMRpro]

I agree, thank you....I took 25 mg again today and will see how the day goes...if not better soon, I will go back to 30 mg or even 35....

[PMRpro Ambassador in reply to Joseph14612]

You might find smaller steps a lot easier too - top experts say not more than 10% of the current dose - you are at a stage where that is already 3mg.

[Joseph14612 in reply to PMRpro]

Good idea, I will have to get some 1 mg pred.... thank you...

[Joseph14612 in reply to PMRpro]

So I have been back on 30 mg and the headache is better but still there after 3 days....can't see a Neuro until March...wondering if I should go up to 35 mg...pred.

[PMRpro Ambassador in reply to Joseph14612]

Probably no harm trying it for a day or two - if it does help though you MUST break the news to your rheumy that it responds to pred which does suggest you are too early going down despite TCZ.

[Joseph14612 in reply to PMRpro]

He will ignore that, I'm sure...

[PMRpro Ambassador in reply to Joseph14612]

No doubt!!!! If it doesn't fit his worldview he won't like it!

[Joseph14612]

My Reaummies response...

"Hi Joe,

I would recommend we have you see a neurologist for their opinion regarding your headaches, since your symptoms now seem a little atypical for GCA. You have been on a good dose of steroids for a while and so I am little surprised to see so much fluctuation in the severity and nature of your symptoms. You can discuss with your PCP for her opinion and also ask whom he recommends you see. Take care"

 He also kept mentioning that my biopsy was negative even after I said I was already on steroids....I am now questioning how much he understand GCA/PMR

I went back up to 30 mg prednisone on my own and he was not happy. Seeing a Neuro might not be a bad idea though...I also explained about the 10% weaning rule...no response from him on that...

[PMRpro Ambassador in reply to Joseph14612]

Either he thought it was GCA originally or he didn't. As for "it's a little atypical for GCA" - saints preserve us!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

As some of us know the phrase -“atypical for GCA” usually means “ I haven’t got a clue”!

[PMRpro Ambassador in reply to DorsetLady]

Not to mention that probably at least half the GCA patients on the forum would say "I recognise that ..."

[DorsetLady PMRGCAuk volunteer in reply to Joseph14612]

” a good dose of steroids” is meaningless..it needs to be the correct dose of steroids - not the same thing at all….