Pred or PMR symptoms when tapering 15mgs to 10mgs?(alternate day doses)

[Marilyn1959]

Hi yet again!

Have started initial tapering 15mgs / 10mgs on alternate days as suggested by Rheumy. 15mgs was initial dose and kept everything at bay with minor aches in thighs and occasional spasms right shoulder blade. Slight fuzzy headiness but other than that no other symptoms ie fatigue, wakefulness, etc that others have mentioned. Life almost back to normal, albeit it in a slower lane.

Have only had four alternate doses but routines now all over the place. On lower dose clearer head, very slightly more aches in localised muscles, so no major problems except half a day is lost the following day (before 15mg dose kicks in), due to waking up ( 9ish) feeling exhausted. So I take my 15mgs and go back to bed sleeping until 1pm! I am a night owl so routinely don't go to bed until about 2am but seven hours sleep usually works for me.

I am guessing, due to the alternate day approach, my body is simply out of routine but I am not liking missing a morning every other day. I asked Rheumy, at the time he suggested alternate day approach, if 12.5mg daily would be better. He asked me to try it his way. Am seeing doc later this week who could prescribe 1mg tabs as presently just have 5mgs. So before I see doc, I thought I would ask you experienced guys and gals........

Can you expect to feel you more or less tired on higher or lower doses of pred? Or is this nothing to do with pred but underlying PMR symptoms?

Should I give the alternate day approach longer for my body to adjust or ditch alternate day and try 12.5mgs daily for a few weeks, then try reducing from 12.5.mgs to 10mgs?

I do prefer my clearer head at 10mgs, but not at the cost of losing a whole morning on alternate days. Nor can I do as much physically as I can when taking 15mgs though I can adjust the physical activity accordingly.

Decisions, decisions, decisions!

[SheffieldJane]

I think my body would respond in the same way as yours with the alternate days.. The method I use would be slower but perhaps surer.

Each 7 days, one new dose then 6 old dose, then 2 new dose and 5 old dose then 3 new dose and 4 old dose right down until it is 7 of the new dose. Then down again in the same way, halting sometimes to see if symptoms settle. When you reach 10 mgs only go down by 1 mg or even 0.5 in the same way. It confuses the body less and yet tricks it into managing.

I hope this is of use to you. Just woke with a nightmare - taking my mind of it. Hope this is coherent.

[Marilyn1959 in reply to SheffieldJane]

Thanks Jane. Very coherent. It seems fairly standard then that bigger drops can be tolerated until 10mgs, but it is the way you manage them that is key?

[Rose54]

Hi

From your other post am I correct in thinking you have only been on Preds of a month .

You may need longer at 15 to get inflammation completely under control also normal recommendations are 15 to 12.5 .

Some of us even find this is too much

You can purchase pill cutter from any chemist and cut 5 into half so you get 2.5 or 1 in half to make .5 only able to cut the non coated Preds

Don't be in a hurry listen to your body we are all different

Experts will be here later

Rose

[Marilyn1959 in reply to Rose54]

Hi Rose. Yes just a month. Of course 2.5 is half of 5. DER! Why didn't I think of that! (Maths was never a strong point but simple fractions - come on!) 🤔

In reference to some needing higher doses perhaps it might be helpful to look at bloods????? Bloods eight weeks ago no inflammation, four weeks ago (taken two days after diagnosis before taking pred) ESR 80, CRP 18. Bloods last week, prior to tapering as a result of 15mgs at 3+weeks, ESR 29 (with drop also in CRP to 10 or 8 - didn't record this one so unsure which of the two) So clearly 15mgs doing it's job but to what degree?

Though I was delighted with seeming improvement are these improvements sufficient at 15mgs?

Or would the experts expect even lower readings before trying a reduction?

I have also woken with yet another infection today (UTI) my fifth infection (not all UTI's) in as many weeks! Don't know if this makes a difference, but do know my week free of them was last week when I had better results from blood tests. Is this a case of chicken or egg?

[Rose54 in reply to Marilyn1959]

Hi

I think PMR PRO has answered all your questions

yes a infection will raise your blood markers

A lot of it is trial and error Im afraid as we are all individuals it dos get better so just try to keep positive and have lots of laughs it really is the best medicine

[CT-5012]

Hi Marilyn,

That is a huge drop. The recommend drop is no more than 10% I tried alternating days with 7.5 /5mg and have had to go back to 10mg which is better but still have a lot of pain will try Sheffieldjane's method in future. Pill cutters are O.K. but a sharp knife works better for me, watch your fingers😩

Good luck.

[Marilyn1959 in reply to CT-5012]

Thank you CT.

When I mentioned 10% rule to Rheumy and dead slow method he said that would kick in from 10mgs, reducing by 1mg over extended period. He wanted to try this 5mg drop initially but did prescribe 15mgs per day in case it didn't work. I'm just trying to work out what 'is it working' looks like!

[CT-5012 in reply to Marilyn1959]

Is he telling you how your body will work? 😂😂😂😂😂😂

[PMRpro Ambassador]

Alternating doses of 10 and 15mg is throwing your body haywire and "his way" is - frankly - silly. I have no idea what he thinks is better about it than 12.5mg every day. Unless he thinks he can get you to 10mg faster. But personally, I'd rather feel well! You might have been better just going straight to 10mg.

To be fair to him - when I first started on pred I had 2 weeks of 15mg - bliss, joy, mobility - before reducing overnight to 10mg. Still fine as far as it went - I had hip bursitis and hand tendonitis and they hadn't improved noticeably, that took months but I was fully mobile and had no real muscle pain. I was even OK at 5mg. Until I stopped after 2 weeks when it all came back worse than before - although that might have been in comparison to the 6 weeks I'd had of almost no pain.

The fatigue is something different really - for some people pred makes them feel tired, for others it makes them feel manic, the Duracell Energizer Bunny effect. That is also due to the autoimmune part of the PMR and that isn't touched by the pred except the mania may outweigh the PMR-flu effect.

IMHO you should have been kept at 15mg until those blood markers were nearer normal range and preferably stable before starting any reduction. I'm not speaking from a medical point of view - just 8 years of experience and hundreds of anecdotal reports.

The blood markers will go up when you have infections - ANY infections. They are totally non-specific, they just show there is inflammation SOMEWHERE, not just the PMR.

Are they REALLY UTIs? PMR can cause irritable bladder syndrome and for some people pred doesn't help.

And if your 5mg tablets are red, gastroresistant coated pred - please don't cut them.

[Marilyn1959 in reply to PMRpro]

Thanks PRMpro. As per usual a very comprehensive reply that hits answers to my questions and poses further food for thought.

Tabs are white uncoated so can be cut.

Litmus tests at surgery on urine suggest traces of blood present so short course of antibiotics given, though sample being sent to labs today for cultures, so maybe know more on these results. Just know without quick antibiotic intervention I literally cannot pee when it gets a grip.

I will talk to doc later this week re your previous suggestion of seeing an immunologist as I too think long term course of antibitocs might be in order to give me half a chance of sorting PMR or at least minimising 'contamination' of blood results due to inflammation of infections as opposed to PMR.

I took 15mgs today instead of 10mgs, but I had forgotten that I seem to get the sweats (or hot flushes) when consistently at this level, so will forge on with 12.5mgs each day for a while to give my body a bit of consistency at slightly lower dose. If this works I can then taper more slowly to 10mgs before I see Rheumy in Sept, achieving result he was after but via a different route.

That's the plan today. It may of course change tomorrow.

Thanks again for your mich appreciated support.

[Patience_1]

Hi Marilyn, I can well imagine your reactions are all over the place! My response to your rheumy would be, well I've tried it your way, now I'm going to take the sensible route and reduce by tapering gradually.

If your next instruction is to remain at 10mg for a while, and that proves ineffective at balancing pain/mobility, you will not know where the actual level of pred that you need is, and very likely may have to go back to 15mg for a while. It's true that the pattern suggested equates to 10% over the week (if you do 4 days on 15mg and 3 on 10), but how on earth are you to know whether any continuing pain/discomfort is down to pred withdrawal or inadequate dose for your level of inflammation? Coming down more slowly enables you to pinpoint the dose your body actually needs at the moment. Listen to your body - symptoms are king!

[Marilyn1959 in reply to Patience_1]

That makes perfect sense Patience. Decision made! Taking into account all advice given, and since different benefits experienced at both 15mgs and 10mgs, I am going to try to eliminate pendulum effect of alternate day dosage and see where 12.5 gets me over next few days. Just purchased pill cutter. I also have antibiotics for infection which normally kick in quite quickly. So hopefully from tomorrow onwards and upwards. Thank you all again for your invaluable support and quick responses.

[Marilyn1959]

Update: today on 12.5mgs has been a good day. No sweats, sufficient energy, no additional pain or aches, no pred head etc. Will do the same tomorrow but so far so good.