Trying to taper as instructed

[Graememidsussex]

Afternoon All,

I don’t write much on this site but I read most of the messages and enjoy their content. I’ve been told to taper at 1mg of pred per month, by my Rheumy , I had a blip at the end of last year when I was on 3mgs , I was admitted to A&E after a horsefly bite and they put me up to 7mgs. After 3 days in the hospital , I then came back to 3mgs ( this was in August ‘18)

Since then I’ve been trying to come down , as instructed, I’m now on just 1mg per day , although since alternating between 2-1mgs , I’ve been aching everywhere, even places I didn’t know could ache !

My thoughts at present are to go back to 3mg and send a message to the rheumy I’ve done so . I’ve been diagnosed with PMR for the last 2 years.

Should I tell my own surgery ? I would say doctor but I could see anyone of about 10 at the practice . Confused ? I am !

I need to change my email address on this site , so if I don’t reply immediately that’s what I’m trying to do .

Graeme ( from Mid Sussex)

[DorsetLady PMRGCAuk volunteer]

Hi Graeme

Many find reducing at very low doses difficult- so the slower and the smaller steps you can take the better. A drop from 2mg to 1mg might not sound much, but it is.

Any chance you could try 0.5mg a time? Plain uncoated pills can be cut with a pill cutter - available at any chemist.

Good idea to go back up to 3mg - hopefully should be enough - and don’t be in any rush to decrease.

Get things back on track - you have done well to get so low so quickly - but you probably need to stabilise now.

Despite what many doctor still tell you, PMR can and very often does last a lot longer than 2 years!

Tell both Rheumy and surgery of what you’ve done - and why.

If 3mg doesn’t cut the mustard, you may have to consider increasing more - but give it a whirl and see!

Good luck.

[Graememidsussex in reply to DorsetLady]

Hi DorsetLady ,

Thankyou for such a quick reply , I’ll do as you suggest , I’ll get a pill cutter ( Superdrug do them I think ), then I’ll contact the surgery and the rheumy department and try to explain why I’m doing it . From what I’ve read on this forum , 2 years of PMR and down to 1mg is a bit quick . The rheumy’s reason was its not good to be on the pred for too long ! I’ll make a note in my diary and dive head first into 3 mgs tomorrow ! G

[PMRpro Ambassador in reply to Graememidsussex]

One certain fact: being on 3mg pred after 2 years is an excellent result and it is going to do far less harm than trying to force a reduction that doesn't work. PMR requires a median duration of management with pred of 5.9 years. You can get down to such a low dose easily in 18 months providing you never have a problem with a flare - and that will happen if the disease activity is low. Men also often have an easier journey for some reason - not always though. But how long it will take to get beyond that is an unknown - maybe you will be off altogether in a few months. Maybe you will be on 3mg for a long time. It is impossible to know.

[PMRpro Ambassador]

2mg might be enough - but definitely what DorsetLady says is a good way to go about it, Little reductions - and maybe using a slowed down approach like DSNS:

healthunlocked.com/pmrgcauk...

Other similar approaches are available.

[Graememidsussex in reply to PMRpro]

Thanks PMRpro , I was hoping you would agree with Dorestlady ( I always read your replies ) instead of diving into 3 mgs , I might taper up to what suits me . Then try the dsns

Many thanks

G

[Hidden]

Agree with DL & definitely go down by 0.5per month once you are settled again, as it is a big percentage of the low dose you’re now on.

Try 3mg if you feel you were better at 3mg then either ring or see your GP, they can also give you some 2.5mg tablets, it’s also possible to toggle between 3mg/2.5mg each day as you reduce.

Also let your Rheumatologist know & why,

Good Luck 🍀

Keep in touch more now you are the lower end as it’s tougher there than you think.

Kind Regards

MrsN

[Graememidsussex]

Many’s thanks MrsN , I didn’t expect to be this low , after what I’ve read on this platform but I’ve tried to do as I was asked to do and it hasn’t worked , so I’ll go up to a level that takes away the pain then start again slowly .

Thanks again . G

[Hidden in reply to Graememidsussex]

Good Luck 🍀

[jinasc]

Put Synacthen Test into your search engine and that talk to your GP about taking the test.

You will be referred to an endochronologist and the test will see if your adrenal glands are waking up. It is the best test I ever had.

[Graememidsussex in reply to jinasc]

Thankyou jinasc, I have heard of the test , mainly on this site . I’ll ring the GP surgery in the morning , tell them about my physical situation and ask for the test ! I’ll be surprised if they’ve ever heard of it !

G

[SnazzyD in reply to Graememidsussex]

You should fit the criteria because you’ve been on steroids for so long.

[alangg]

Hi Graeme, like you - I'm 18 months into Pred for PMR. Started at 15mg on Dec 2017 (age 59) and have just got down to 2mg. I've done it on the DSNS tapering plan (thanks DL) at 1/2mg per step since I was on 8mg and have always left 2 weeks on the new dose (sometimes longer depending how I feel) before starting to taper again. The step from 2.5mg to 2mg was the hardest and there were some days when I thought that I would have to go back up. The stiffness and pain in the shoulders returned and very sore ribs when I rolled over or coughed but I stuck with it and after a week on 2mg I am beginning to feel ok and able to stay there. I think that it might have been a bit of pred withdrawal which I managed to 'push through' and am now over. Might leave it a month before I venture further.

[Charlie1boy]

Hi,

I was diagnosed Dec 2014, and got down to 5 mg by April 2017. Now, almost exactly two years later I've got to 2.5 mg, so I've been messing around at the 5 mark or below for two years.

I tell you this as it confirms what others have said about the difficulties of tapering down at the lower levels.

You've done well, and I wish you luck.

Paddy

[Graememidsussex]

Thank you all for your support and kind words , especially your understanding of what we go through to try and fight our way out .

This morning I took 2mgs of pred , after an hour ( of my lie in ) I could feel a warmth in my feet , ankles hands and wrists . What a difference ! I think I’ll take the dogs for a walk ! I’ll get on to the rheumy dept at the hospital and ask for a syncathen test .

Once again thanks to you all for your replies .

G