First day of tapering to 12.5mg and pain has returned already. Help please!

[Footfairy-1]

I've been on 15mg Pred for 6weeks. It took 3.5weeks for pain to go. Dr said to taper now to 12.5 for 4weeks (standard dr advice). I told him I wanted to do this gradually but he said no need. I decided to do it the way that's been suggested on this site in a gradual slow way anyway. Started yesterday at breakfast and by lunchtime had pain in neck, shoulders and ribs, which is especially bad when my back is leaning on anything I.e chair, bed (can't sleep for pain). Feel like I've gone backwards and so quickly. Is this normal? Should I carry on with the gradual taper? Need advice please. I've taken 15mg today. Hope you can help x

[SheffieldJane]

Hi footfairy! Sounds to me like you never got on top of the inflammation in the first place. Did you have some symptoms all the time on 15 mg?

I started on 20 mgs a day and by 6 weeks I was ready to start creeping down.

Don't carry on with the taper, consider starting all over again at 20 mgs for a month or so then try the taper with fairy footsteps!!!

Just tell the doctor the parable of the tortoise and the hare. You will get off Pred, probably completely, much quicker this way. Promise!

Other opinions are available. X

[Footfairy-1 in reply to SheffieldJane]

Thank you SJ

All pain went after 3.5weeks on 15mg but still had bad fatigue. Thought I was ready but obviously not.

Have never taken 20mg.

So grateful for your reply (and your promise) x

[DorsetLady PMRGCAuk volunteer]

Hi Footfairy,

It may just be steroid withdrawal symptoms, they may last a day or two, but after that they should disappear once your body has acclimatised to new dose.

As it took 3&half weeks for pains to subside, maybe that starting dose was just a little to low for you.

As you’ve taken 15mg today is it any better? Might be wise to stay on that for a few more days just to gauge if you’re okay.

Doctor may thing 2.5mg taper is okay, but it’s not for many. So try 1mg next time (if you only have 2.5mg tablets so long as they are uncoated they can be cut -so you get approx 1.25mg).

It’s a bit trial and error to start with, but advice is don’t reduce if you are getting symptoms - there’s no point in that, no matter what doctor may think.

Good luck, hope you get back on a even keel quickly.

[Footfairy-1 in reply to DorsetLady]

Thank you DL

I'm on the coated Pred as the others upset my stomach.

The pain isn't any better yet. Just put a warm wheat bag on my ribs and it helps a bit. Plus if I'm standing it's not so bad.

Can't seem to find a GP in my practice that understands. The one who first diagnosed PMR and was very knowledgeable (compared to others) and understanding has now left the practice 😩. I have got appointment with Rhuemy on 6th Dec (if it's not cancelled like the last one in Oct).

I've got some 1mg preds so I'll go back to 15mg for the next couple of days or so and see if the pain goes.

I'm standing here crying as I'm so grateful for the help and advice I'm getting. Not usually weepy but this condition has completely overwhelmed me.

[DorsetLady PMRGCAuk volunteer in reply to Footfairy-1]

Hi,

I know it does. You go to GP hoping for answers and all you end up with is more questions. That’s why this forum is a life-line for many.

I know you are going through a bad time at the moment, but believe me it does get better - honest

In the meanwhile plenty of TLC! Even if it’s self medicated.

Take care.

[Footfairy-1 in reply to DorsetLady]

😌💐❤️

[SheffieldJane in reply to Footfairy-1]

What a heart rending picture of you I have in my mind, Footfairy . I really wish you a kind wise Rheumie!

As we say on here " this too will pass".

[Footfairy-1 in reply to SheffieldJane]

What a wonderful picture I have of you! Sooo supportive. As you all are here. Think I would be in a heap without you. Xxx

[Rugger in reply to Footfairy-1]

Hi Footfairy

If you've got 5s, 2.5s and 1mg tablets, you can make all sorts of permuations when you decide to come off 15mg - even 14.5, 14, 13.5 and so on! Never more than 10% is the motto.

Take care and I hope things improve for you soon. We've all been there and are thinking of you.... x

[Panni in reply to Footfairy-1]

Hi!

I had stomach pain from prednison, so I was on medication for it.

Now that I am only on 4mg prednison, my stomach is OK.

Also I take B complex, because the absorption is impaired from the steroid.

The body makes 7.5 mg steroid a day, but stop producing when take extra mg.When reducing the medication 1mg a day, takes sometimes longer for the body to adjust, that can be the cause the extra fatigue.

Each of us is different, have to be patient, eat healthy, do moderate exercise, so the body can heal, cut out all what the body does not like

Prednison is only reducing the inflammation, not curing what caused it.

Wish you all well, .

I still have moderate pain here and there, no pain med needed.

Taking 4mg Prednison, Bone complex (1000mg vitD, 300mg, magnesium, Vit K2) in it, Devils Claw, MSM, .

Eat healthy most of the time, no alcohol, sweets. avoid stress.

And I can put my socks on without struggle.

[yogabonnie in reply to Panni]

tell me about Vit K2 please. is it necessary?

[HeronNS in reply to yogabonnie]

Vitamin K2 is the version of Vitamin K which sends calcium into the bones where it belongs. Otherwise calcium may settle onto the walls of blood vessels or into organs where it can do damage. K2 and magnesium are both important for this. Vitamin D helps the body absorb calcium, but it doesn't tell that calcium what to do next! Unfortunately, although we can get calcium and magnesium from our diet, Vitamin K2 is lacking in the modern Western diet, so a supplement is a good idea.

Here's a helpful article:

healthline.com/nutrition/vi...

[Panni in reply to HeronNS]

This is the best info, regarding the complexity of vitamin D, Ca and K2 together. Especially for us, who on Prednison.

Thank you for posting.

[Panni in reply to yogabonnie]

Hi yogabonnie!

K2 vitamin is very important, some doctor doesn't have the knowledge about it

Very best connection was posted by HeronNS. Please read it, and do take Vit D Calcium and K2 together for healthier bones.

healthline.com/nutrition/vi....

I would consider it is necessary to take.

[Footfairy-1]

Just to let you know, the pain is starting to go now ☺️. Hopefully I'll get some sleep tonight.

[DorsetLady PMRGCAuk volunteer in reply to Footfairy-1]

Good- very pleased to hear that. 😊

[PMRpro Ambassador]

I agree with the others - if it took that long for the pain to go then you are not ready to taper so much yet. The recommendations say the "lowest effective dose in the range 12-5-25mg" - and there should be a good response in up to 72 hours. If there isn't - the dose should be increased.

If you are on enteric coated pred the peak blood level won't get as high as if you take the same dose of the plain white tablets. And that may well be the problem.

[navejasjoe]

Hi Footfairy,

My wife had a similar experience to yours. Her rheumy had her taper from 15 to 12.5 after 2 months, then to 10mg after another month. When she got below 10mg, her pain came back. The tapering continued, even though she told him the pain was back. He relied too much on the CRP and ESR which showed no inflammation. So he got her down to 2.5. She went back to her GP who raised it to 10.0, which got her to feeling mostly OK, but he eventually had to put her back up to 12.5 so that she can at least do some exercise because she is diabetic. The GP referred her to another rheumy, and she was excellent. She said that it was a mistake to taper so quickly. He should have been tapering at 1mg each time she needed to lower her dose. She is going to keep her on 12.5mg for a while. Her next visit is in 2 weeks.

Joe

[DorsetLady PMRGCAuk volunteer in reply to navejasjoe]

Wise lady second Rheumy - if only they were all like her.

[Allsgrandso]

Hi footfairy, just wanted to say hi and say that the advice you will get here is second to none. I’d be lost without it. We all understand what it’s like, big hugs to you xxx

[Brandon47]

Coming down too quickly. I started on pred 20mg 19 months ago just reduced to 4 mg - 1mg reduction at a time - so far so good with me - good luck

[Panni]

On my Naturopath advice I have been taking MSM 1000mg 3X /day, Dewils claw 250mg 3Xday, and 100mg Advil.

No pain, and reduced my Prednison by 1mg/month.

When I had severe pain, also took Traumacet for the pain in the morning, so I can get out of bed.

No need for pain killer since September.( my PMR started in May, had the tempora lartery biopsy, in June, that was negative , so my highest Prednison was 10 mg for one monthStarted scaling back 1mg since september.

I am 70 years old.

[PMRpro Ambassador in reply to Panni]

Did the Traumecet help the pain? If so, it possibly wasn't due to just PMR since it is extremely unusual for paracetamol and even Tramadol (the ingredients in Traumacet for those who don't know) to help the pain in PMR. Even people using opiods say it doesn't do anything for PMR pain.

And I also never take painkillers - the pred fulfils that function in PMR.

[Panni in reply to PMRpro]

Hi!

Traumacet helped the pain (tramadol, opoid +acetaminophen), and possible I have something else and not PMR. Vancouver where I leave I have option for more than western medicine, so I try every advise.

But the rheumatologist convinced it is PMR.

I have a mini trampoline, helps in the morning, to reduce the moderate pain I wake up with

This site from fellow PMR experts, really helps to see how wide range the treatment can be.

On my days off from work, I just relax, being too tired time to time, demanding the "do nothing" option.

3X a week I push myself to an aorobic class, mostly older members and I find moving helps. Then I sleep for the rest of the afternoon.

Thank you for all your postings,

[PMRpro Ambassador in reply to Panni]

I did aquafit 5x a week before I was put on pred - it was the only thing that kept me functioning. I was tired afterwards and would doze off if I sat down without work to do but generally it gave me more energy. But no pain relief but pred ever helped.

I have PMR friends in Vancouver who I met last year while on holiday - having made the first contact while at the OMERACT rheumaotlogy conference in Whistler in the previous May.

[Hidden in reply to PMRpro]

Can guarantee such pain killers have no effect on PMR. I wondered what was going on when reasonably controlled pain changed in form and then I had one pain that liked tramadol but other that just kept getting worse.

[Footfairy-1]

Thought I'd send an update. The pain has still not completely gone and the terrible fatigue (which had lessened before the reduction) has returned. The earliest I can see the Dr is 6th Dec (except on emergency appointment) and that's the day I see the Rheumy anyway.

Do you think I should stay at 15mg for a bit longer or up the dose? I've never been on more than 15mg.

[PMRpro Ambassador in reply to Footfairy-1]

Prof Sarah Mackie told me recently she allows 1 to 2 weeks to see the response to the starting dose - because some people take a bit longer than others - before deciding to increase it (the levels are probably 15 and 20mg). I would suggest that if you are already getting relief with 15mg you should be patient.

The fatigue is really less to do with the pred than the autoimmune part of the disease - pred just manages the symptoms, the fatigue you must learn to work around and manage yourself:

healthunlocked.com/pmrgcauk......

There really are no magic solutions - it all takes a bit of application! And patience. The more you go up - the more you will have to come back down.

[Footfairy-1 in reply to PMRpro]

Great links. Thank you.

I'll try to be more patient. It's a lesson that's been repeated during the last few years of my life. So I think I'd better take it on board this time!

[PMRpro Ambassador in reply to Footfairy-1]

We do often say on the forums - if you don't learn anything else on the PMR journey, you will learn patience! That's what we hope our posts will achieve - we pass on our experiences so you can minimise your own mistakes

[PMRpro Ambassador]

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