Reducing pred dosis on same day as flu shot a good idea?

[Lucia-1]

Hello all, recently diagnosed with PMR, this is my first question in this haven for the suffering. Have been on prednisolone 20 mg for about a month, talked to my GP today about reducing dosis. Labs done last week, came back beautiful, so she wants me to cut to 15 mg as of this Thursday for four weeks, then to 10 mg for four weeks. I'm a little worried that this is too much too quickly, but am willing to try. She wants to get me down to 10 mg and below as soon as possible. I am also scheduled to get the flu shot on Thursday, and wonder if cutting down by 5 mg on the same day might be asking for trouble. I think I'll hang on to my remaining 20 mg tablets a little longer just in case... Any advice from all of you more experienced people?

[SheffieldJane]

I agree with your own instincts completely, it is far too fast and you would suffer unnecessarily. Buy a good pill cutter and never reduce by more than 10% of your dose. A 2.5 mg reduction would be fine as long as your symptoms are settled. Do not reduce on the same day as your flu jab. It might make you feel poorly. I urge you to look at the tapering section of FAQs. On this website. This will show you the tried and tested methods to taper successfully. Your bloods will usually look beautiful/ normal when you are on enough Prednisalone because the inflammation is being dealt with. It doesn’t sound as if your GP is very familiar with the treatment of PMR. Unfortunately it is not a quick fix short term thing. Symptoms always rule.Did you paint the cat? It is very good!

Stick with us.

[Lucia-1 in reply to SheffieldJane]

I'll definitely stick with you all And yes, that's my painting of my cat Loesje (Dutch for Lucia), thank you! Thank you so much for your advice, which confirms my intuition that I should go more gradually. I'll invest in a good pill cutter, which I'm sure I will need on this journey anyway. I did look at the tapering suggestions in the FAQ's, but that mostly seems to deal with 10 mg and below. My GP is following the standard protocol, and told me most people respond well to it. But as you said, reducing on the same day as the flu shot is not a good idea, so I'll continue with 20 mg for at least a few days.

[HeronNS in reply to Lucia-1]

The slow taper plans were developed because many people do have problems tapering at the lower doses, but there are some who have problems even from higher doses and have found a slow taper plan helpful. In your case I would expect all you would need to do is taper by no more than 10% at a time until you do get to a lower dose. I started at 15 mg, was on that for something like 5 weeks, then my doctor told me ot taper by 1 mg per week, to stop tapering if symptoms returned. I now know that 1 mg per week might have been too fast, but in fact I was fine until I tried to go from 10 to 9. At that point I went back to 10 for a couple of weeks, then started using a slow taper plan, letting my doctor know and she was agreeable and supportive. I was at 3 mg by the end of the first year, although I must add that five years on I'm still taking pred, although usually at a very low dose.

Please note that the way I tapered initially did in fact give me a 5 mg reduction in five weeks, but not all in one step!

[Lucia-1 in reply to HeronNS]

Understood. Instead of cutting down as quickly as possible, I'll suggest to my GP that we should talk about where I should be in one year and devise a tapering schedule according to that.

[HeronNS in reply to Lucia-1]

Well, yes and no. Where you are in one year may be very different from where some one else might be. One thing we do learn quite quickly is that we are all different - which is why doctors sometimes, despite good intentions, don't do right by us as until they've had a lot of experience with PMR they do have to go by the books. Good luck!

[Lucia-1 in reply to HeronNS]

Good point, thank you!

[DorsetLady PMRGCAuk volunteer in reply to Lucia-1]

Good idea, but you both must realise it’s only a plan…..life has a habit of intervening and turn the plan upside down! But it’s a start.

[Lucia-1 in reply to DorsetLady]

"life has a habit of intervening and turn the plan upside down!" - does it ever. I'm convinced my PMR is the end result of seven years of life intervening and turning all my plans upside down, haha. But that's a story for another day...

[DorsetLady PMRGCAuk volunteer in reply to Lucia-1]

..join the club! 😊

[HeronNS in reply to Lucia-1]

Yes, it's a common if not completely universal theme!

[HeronNS in reply to Lucia-1]

Your cat is beautiful!

[Lucia-1 in reply to HeronNS]

Thank you She's an absolute joy to have around.

[Karenjaninaz in reply to Lucia-1]

My rheumy said at 20 mgm I would not generate antibodies from any jab. I would wait until 5 mgm for any jab.

[PMRpro Ambassador in reply to Lucia-1]

They are standard protocols for using pred - NOT for using pred in PMR.

By the way - come December we will get a greeting post from Ragnar the Swede who founded the slow reduction approach - and it will arrive on Lucia Day Monday 13th December.

[Lucia-1 in reply to PMRpro]

Well, I consider that a lucky sign Looking forward to Ragnar the Swede's post!

[DorsetLady PMRGCAuk volunteer]

Too fast a plan- even the recognised taper of 20-17.5-15-12.5-10mg is not achievable for everyone.

Even if your doctor is insistent on her way, perhaps you could try 20-17.5 for 2 weeks, and then 17.5-15mg for the next 2 weeks.

Plus as SheffieldJane says, don’t reduce same day as vaccine.

Your GP may want you at 10mg as quickly as possible, but, to be honest your illness may not let you!

[Lucia-1 in reply to DorsetLady]

Good idea, thank you DorsetLady . I just have to figure out a way to do that without running out of pred, because I now have a prescription for 30 days of 15 mg, plus 6 doses of 20 mg left. I'll do the math tomorrow...

[DorsetLady PMRGCAuk volunteer in reply to Lucia-1]

Ok…I’ll leave that with you 😊…

[SheffieldJane in reply to Lucia-1]

Or you could educate your doctor they will have much more success using slow careful tapers. Tell the doctor that you belong to a very knowledgeable, experienced support group. The advice in FAQs is mostly evidenced.

[Lucia-1 in reply to SheffieldJane]

Yes, good idea. I'll try to get a face-to-face appointment next time and print out some of the info from the FAQs to show her.

[altywhite in reply to Lucia-1]

Hi Lucia, I agree with Jane about educating your doctor. You say she is supportive which is great. I swear my GP went away and did some research as a result of what I told him!! 🤣🤣 He has always been brilliant and will issue my pred whenever I need it. And definitely do not reduce around the date of your flu jab. Good luck. Linda.

[Lucia-1 in reply to altywhite]

Thanks, Linda, will definitely give that a try. My GP is concerned about long-term side effects of pred, which I understand, but I'm also concerned about tapering in a rational manner and not getting into a yo-yo pattern. Good for you for educating your GP!

[DorsetLady PMRGCAuk volunteer in reply to Lucia-1]

GPs are concerned about long term use of steroids, and that’s understandable, so are patients..,but some are paranoid….and that’s not good.

PMR or GCA that’s not controlled properly because of too little Pred, can cause a lot more issues…..

so needs a balanced view.

[piglette]

I failed miserably from getting from 20mg to 15mg, that was after three weeks. Some people can do it with no problem. Often men. Doctors have this obsession to get us below 10mg.

[Lucia-1 in reply to piglette]

Sorry to hear that, piglette . My GP has been supportive and she knows I'm well informed, but still, what's the hurry? This isn't a disease that's going to go away in a few months, so it would make sense to do what's best in the long run.

[PMRpro Ambassador in reply to Lucia-1]

Exactly - but they are terrified of pred!!! Many just don't understand PMR and how it works ...

[Nextoneplease]

Hi Lucia and welcome 😊

I’m glad you’re feeling well and that your blood test results are good. But the idea is to keep it that way…..There are lots of tapering schedules but I think it would be usual in the UK to reduce 20->17.5->15->12.5->10. After that reduce by 1mg or even 0.5mg a month, certainly by no more than 10% at a time 😊

Personally I found it quite difficult to get from 15 to 12.5 and had to do 14 and 13 in between……

The thing is that you need to keep your inflammation under control, so stop reducing the minute you get symptoms, and maybe even go back up a level to stabilise, then drop again when you’re ready.

Do have a look at the tapering plans in FAQs. Slow and steady wins the race!!

Good luck 😊

Nextoneplease x

PS I agree, not a good idea to reduce on the same day as your flu shot

[Lucia-1 in reply to Nextoneplease]

Thank you, Nextoneplease You're right, the idea of reducing by 2,5 mg sounds more reasonable to me (and not on the day of flu shot!) And I agree about slow and steady wins the race, I just hope I can convince my GP to let me be in charge of my tapering schedule. So far, I've been given enough pred to cover 4 weeks at the prescribed dose, so there's not a lot of room to maneuver.

[Nextoneplease in reply to Lucia-1]

It’s difficult, I know, but if you can indicate to her the plan you intend to follow, I hope she’ll have confidence in you. After all, none of us wants to be on prednisolone unless we have to….

All the best, hope it goes well xx

[Lucia-1 in reply to Nextoneplease]

Thank you xx

[Koalajane]

I had my flu jab and it caused no problems at all with reduction. We are all different so who knows. I started at 15mg and dropped to 10mg without a problem

[Lucia-1 in reply to Koalajane]

That's wonderful, Koalajane . And you're right, we are all different, so who knows? But I'm still in the beginning phase of this journey, so I'm a little apprehensive.

[Nightingales]

I was at the same time point but I decided to delay the reduction for a few days after the flu jab. Why take the risk?

[Lucia-1 in reply to Nightingales]

Exactly. I'm planning to do the same.

[PMRpro Ambassador]

Never mind the flu jab - cutting the dose by 5mg at a time is sheer lunacy!!! PMR isn't the same as reducing the dose from other uses. 10% of the current dose is far more appropriate and recommended by experts.But NEVER change two factors at the same time - you can't know which is causing the problem.

[Lucia-1 in reply to PMRpro]

Exactly, hence my question. If I get a return of symptoms, is it a flare, steroid withdrawal, or the flu shot? No way to tell. The GP did agree to let me stay on 20 mg for a few days after the flu jab, but seemed confident that going down to 15 after that wouldn't be a problem ("other people have done fine with that"). My cousin, who was diagnosed a month before me, recently went from 15 to 10 mg, and then had to go back up to 12.5 mg, because her symptoms returned. I hear this all the time.

[PMRpro Ambassador in reply to Lucia-1]

Quite - you are you, not other people. And the ones who tolerate a 33% change in dose in PMR are very much in the minority.

[Nextoneplease]

Hi Lucia I wonder which “other people” have done fine with that??? Not your cousin, for example…..x

I do hope you manage to establish a good, constructive working relationship with your doctor 😊x

[pata63]

I had a flu jab on 28-Jul-21 in the afternoon. The next day I woke with very stiff hips and was creeping around like the bad old days of untreated PMR. I had been on 5 mg since 20-May-20, and I followed the sick day rules and took and extra 5 mg for two days. Flare handled. I had no similar issue after my first Pfizer jab on 1-Jul-21 although I was half expecting it. I had a small flare after my second Pfizer jab on 5-Aug-21. I followed the sick day rules again but for just 1 day this time.

How do I remember all this? I keep detailed notes. Memory isn't enough for me. Plus it helps my doctors understand what might be going on. They know they get good data from me.

Your body and disease experience will be different from mine. You might flare from the flu jab, or you might not. My anecdotal evidence is no use in understanding the frequency with which different events happen in the population. All it tells us is that something happened once or more. That's why we do properly designed research and come up with guidelines. Alas, that takes a long time and the guidelines can be behind the current research thinking. My reading of current thinking suggests that many doctors want to reduce faster than the optimal path to avoid flares.

As far as beautiful lab results go, my CRP is usually 1 or less measured over a decade. When I got my PMR diagnosis (1-Apr-2019) it was 23. The next measurement (27-May-19) was back to 1. That helped confirm the PMR diagnosis, and that 20mg was a high enough initial dose. The goal was to find the minimum efficient dose, not a race to zero. Dosages which worked for me:

20 mg 1 month

15 mg 3 weeks

12.5 mg 3 weeks

10 mg 6 weeks

7.5 mg 3 weeks

6 mg 3 weeks

5 mg since mid Oct 2019

During the reducing period I never had symptoms nor a flare. That's why the reduction was continued at that pace. Success was guided by symptoms because my CRP remained 1. My reduction timetable is a bit fast for many people on this site, but that's individual variation again.

I wish you good luck working with your doctor in finding your individual path back to good health.

[Lucia-1 in reply to pata63]

pata63 Thank you so much for your detailed response. Keeping notes is very smart, and I'm going to follow your example. We're all different, so there is no one-size-fits-all solution. My CRP went from 42 pre-pred down to 2.9 at last measurement. I'm doing what I can to stay healthy apart from having PMR. Had the flu shot today and am staying on 20 mg for a few more days just in case. So far so good, but I'll report back in a few days.

[Temoral]

Hi Lucia...I am newly diagnosed...was down to 20, then had Covid Booster ...May be a coincidence, but flare up started. Could have also been the far too rapid reduction of preds. Back on increased dose and slower reduction now. All the great info on here from other warriors suggests caution and pacing yourself. I am not a medical professional, but hope this helps. Take care.

[Lucia-1 in reply to Temoral]

Thanks Temoral, it's hard to tell, isn't it, when you're reducing pred at the same time as getting a vaccine. Sorry it caused a flare for you. I haven't had a covid booster yet (probably not till January), but the flu shot didn't cause me any trouble. I stayed on 20 mg a little longer just in case, but have started reducing to 15 as per doctor's orders. I've been experiencing just a little pain and stiffness in the mornings in the last few days, but nothing like pre-diagnosis, and it goes away after a while. Hope it won't develop into a flare. Best of luck with your slower reduction speed. I agree, the info and support on here is fantastic!