Tapering pred

[Poppylop]

Hi all, I started tapering my pred on 10th as per instructions from the rheumatologist dropping 5mg then another 5mg on 13th, so down to 30mg, but since doing so I've been getting headaches around my temple area and a bit of scalp tenderness, I was supposed to drop another 5mg today but I have been a bit worried about doing so. I emailed the rheumatology department at the Nuffield, she suggested I go back up to 30mg and has requested another appointment for me to have the temporal atery scan but I've already had one last week, which I have explained but I havnt yet received a reply regarding this. I've actually gone back up to 40mg just to be on the safe side. I think the way she has told me to taper may be too quick looking at some of the tapers I have read about on here, the way she said was to drop 5mg every 3 days until I'm down to 10mg then 1mg every month until I'm off them.

[HeronNS]

I think the replies you received to your earlier post where you described the proposed taper really said it all. Whether or not you have PMR or GCA the taper is quite simply too fast and will only, as you've already discovered, lead to grief. What you have to do now is dig in your heels and refuse to be hurried. If you keep trying to do the fast taper you will end up in a yoyo situation and end up taking far more total pred than if you stick to your guns and follow a much more sensible (indeed recommended by those who know what they are doing) taper.

Rule of thumb: No more than 10% reduction at any one time. Stay at new dose for at least a week, preferably longer, and only reduce again when there are no increased symptoms. When you get to 20 mg you should stay at each new dose longer. Many would say for a month although some of us can taper a bit faster. If you've had GCA symptoms you really must not go too fast. By 10 or perhaps even 15 mg you could consider using one of the slow taper plans developed by patients.

[Yellowbluebell]

Hi, i dont have gca so not certain if the taper is supposed to be quicker but it seems very fast to me. You need an appointment either with your gp or the rheumatologist asap. Even if she insists on this rate the fact that your symptoms have returned means the gca/pmr is still very active and you should not be tapering at all. The 40mg dose is the lowest reccomended for gca and if you have any vision problems between now and getting an appointment you need to go to A&E immediately. Sorry i cant give you any more help but dorsetlady will be back online in the morning as she is our resident expert on all things gca. YBB

[HeronNS]

Scroll down through this and you'll find basic tables for tapering for both PMR and GCA. Tapering plans always, of course, have to be modified to suit the needs of individual patients. This is definitely a disease where one size does NOT fit all!

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

[PMRpro Ambassador]

In my opinion, based on over 10 years of PMR-watching and hundreds, if not thousands, of patients, reducing at that rate is crazy and only going to end in tears.

I think she has decided it isn't GCA - and that is a big step to take if a patient has the symptoms. The TAB isn't conclusive, we say that again and again, symptoms always rule, and the positive of the ultrsound scan is that it is not invasive but as good as TAB in diagnosis. It may be a bit better - but it still depends on the arteries they look at being affected. They may NOT be, probably the best option is an early PET-CT scan but that is often not an option. The inflammation may be elsewhere - but you don't know for sure.

Dropping 5mg every few days is ridiculous - every 2 weeks might make some sense. But only if there is no return of the symptoms.

[DorsetLady PMRGCAuk volunteer]

If you have GCA, much too quick a taper - and a return of symptoms would indicate you have.

As PMRpro says 5mg every two weeks may be achievable- but personally (with experience) I would say 5mg every month until you get to 25mg, then smaller reductions.

And I agree going back to 40mg is a good move.

[Poppylop in reply to DorsetLady]

Hi DorsetLady, just a quick question as I know you are the lady to talk to about gca, as I mentioned in the earlier post i have gone back up to 40mg 4 or 5 days ago after the reduction to 30mg, I'm still having the temple pain and slight scalp tenderness which I didn't have previously on 40mg, is 40mg usually sufficient to protect my sight of if I do have gca and is it normal to still have the symptoms after upping my dose, I am awaiting another appointment with the rheumatologist, but think I'm going to see if I can get an appointment with the gp next week as I may have to wait a while for a rhuemy appointment

[DorsetLady PMRGCAuk volunteer in reply to Poppylop]

The guidelines say a starting dose 40mg with no complications (usually meaning sight issues) - 60mg start dose for GCA with complications.

Once you been on increased dose for 4-5days symptoms should have improved - if not then in you case 40mg may not be enough.

If it were me, I’d be inclined to try 45mg for the next few days, and when you ring the surgery impress upon the receptionist it’s a matter of urgency if they aren’t forthcoming with an early appointment.

Let’s us know how you go on,

[Poppylop in reply to DorsetLady]

Thank you, I will try 45mg for the next few days x

[Carrollee]

Hi poppylop. I too was given a fast taper from the NOC but at least it was 5mg every week. Impossible to do as withdrawal symptoms horrendous (not to mention GCA return) so I went back up. It was then changed to 5mg a fortnight so I did it in 1mg drops every few days until the end of the fortnight which was a little easier (40mgs down to 39mg for 3days....38 for 3days....37 for 3days....36 for 3days then down to 35mg fir last few days). Less stress to my system. At 20mg I reduced by 1mg a month and then 1/2mg from 10 onward. Some doses I stayed at longer depending on how I was. All the best cc 🤗

[Poppylop in reply to Carrollee]

Hi carrollee, just wanted to ask when you started your taper, how long did your symptoms last for. I dropped 5mg on 10th then 5mg on 13th but didn't drop again on 16th like I was told to because of the temple pain and scalp tenderness, I then went back up to 40mg on i think either 16th or 17th but I'm still having the symptoms, does it take a few days to go, it's strange because I had a few temple pains and tenderness before starting on pred 6 weeks ago but while I've been on it i hadn't had any but as soon as I lowered the dose of came back, I thought as soon as I Sent back up to 40mg it would stop again

[Carrollee in reply to Poppylop]

Hi sent you a pm 🤗