Tapering: Since my first post I have been following... - PMRGCAuk

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Tapering

Billswife
Billswife

Since my first post I have been following all recent posts with interest and would be grateful for further advice. After initial dose of Pred, 20 mgs daily for 2 weeks, then 15 mgs daily for 2 weeks, my GP advised me to reduce to 14 mg daily for the 5th week, then 13 mg daily for a week and so on, reducing 1 mg daily on a weekly basis. This week I have been taking 10 mg daily and this is therefore due to reduce to 9 mg daily on Monday 12 Aug. However, as this week has progressed I have been feeling progressively more tired, still no pain in shoulders or hips etc. but feeling increasingly woozy in my head, and my eyes feel very dry and irritable, in spite of using hyper mellose drops, which were recommended a few years ago by optician as I have cataract (not yet deemed ready for removal) and dry eyes.

I feel reluctant, in light of all advice I have read on this site, to actually reduce to 9 mg on Monday but feel inclined to remain on 10 mg and see how this next week goes. I am not due to see my GP again until 2nd Sept and it will be impossible to contact her before then as she freely admits there is at least a 3-week waiting time to see her. The only advice she gave me was that "if I feel the pain returning I should increase the dosage", but no idea by how much I should increase.

At my last visit to her I felt so well, and understood so little about this illness, I honestly thought I would simply reduce to zero and that would be that! I no longer feel that way and am very unsure what I should do on Monday. Any advice or suggestions would be welcome. I may be panicking over nothing but would prefer to prevent a flare rather than try to deal with one. Many thanks - I feel so lucky to have found this site.

19 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

I would be reluctant to decrease any more at the moment as well.

You seemed to have coped very well do far, but now is the time to stop and re- evaluate. Reducing weekly is a very risky business - you don’t have time to know if the current dose you are on is controlling everything enough before you drop lower. It can take a couple of weeks for your body to rebel to one drop let alone two. If that happens you are in real danger of a full blown flare - which you obviously don’t want.

Even if you can reduce as quickly as you have above 10mg (and I would say you’ve been very lucky to do that) I doubt very much if most people could continue that pace below 10mg.

You now really need to stay at each dose for a month rather than a week!

She obviously thought the reduction plan she gave you was optimistic. It's much better to reduce slowly than have symptoms return and have to increase dose. That does you nor your PMR any good whatsoever.

Hopefully sticking at 10mg will ease your symptoms - but if not you may need to go back up to 12mg or 13mg - it depends how much you’ve gone below the level you actually need.

Have a look at this - might help you understand things a little better -

healthunlocked.com/pmrgcauk...

Thank you very much DL for your speedy and helpful response. I will continue with 10 mg next week and if I feel no better by next weekend will increase to 11 mg daily. I have learned so much from this site and am also reading Kate Gilbert's book; I now realize I have to take charge of this situation and aim not to "relapse". Thank you too for the link - going to have a look at it now.

Remember your PMR and your pain do not follow a timetable even if your GP would like them too.

You should not leave it a full week just to "see how it goes " on 10mg if you feel in the next few days that it is not helping you get back to the feeling of being more capable and symptom free that you had on a higher dose.

It is better to listen to these " Warning Flares" sooner rather than later .

The quicker you deal with the increase in symptoms , the quicker you can get them under control . Then stay on the dose that thwarted the Flare for a few weeks so your body has time to rebalance and restore it's nutrients and strength before you ask it to try another change and taper again.

Going down by 1mg a week is unsustainable and ridiculous as advice from any Doctor , it isn't taking into consideration the time the body needs to restore itself , and for you to do the sort of self care like getting used to more activity , or gentle exercise to help maintain strength , that you need to do to cope with tapering and PMR.

Remember , Pred is not a " cure" it just helps manage the inflammation and pain .

When you have less pain it doesn't mean you haven't got PMR , it is still active in your system , it's just your are managing to control it's symptoms.

Your GP at least had the sense to say increase if you need to , so you have permission to do what is better for you rather than following the , "GPs who don't really understand Chronic Illness Rule Book".

When you do get to see the GP , it could be helpful to make your journey less stressful to take in a printout of the Slow Taper method recommended on the forum to show the Doctor. Tell them politely, but firmly, that this is method you would like to use yourself as it works for other sufferers , and , could prevent the yoyoing in doses and delays in recovery that can happen in tapering too quickly in the future. If you are both on board and working as a team it makes dealing with PMR alot easier.

Taking a complete vitamin/ mineral complex , along with the recommended Vitamin D and Calcium , and extra Magnesium and Omega 3 can reduce the Fatigue and Nerve related side effects like cramps and pins and needles.

Drinking more each day helps your body heal and to reduce internal inflammation . Drink regularly through the day , especially during exercise , even if you don't feel thirsty.

If they haven't suggested it to you , and you are awaiting cataract surgery you should get an eye test as soon as you can . Many people find the speed that their cataract increases is faster while taking steroids and you may need to have the surgery sooner than any pre PMR/ Pred tests had suggested.

I hope you feel better soon , and give yourself a pat on the back , you are taking in all this information very quickly but are being very sensible about dealing with your disease. Take care , Bee

PMRpro
PMRproAmbassador

Top experts have said that a reduction rate of more than 1mg per MONTH is predictive of relapse. You have been told to reduce at 4 times that! It is fine when it works but at that sort of speed you have no idea where it started to go wrong.

If it were me I would return to 11mg and stick for a couple of weeks at least and if that is OK try a slower drop to 10mg after a few weeks.

healthunlocked.com/pmrgcauk...

other versions are available.

Billswife
Billswife
in reply to PMRpro

Thank you for getting back to me. I have been checking my supply of Pred and have more than enough to return to 11 mg for a couple of weeks so will see how I feel tomorrow and may take your advice to return to 11 mg daily on Monday. I will be discussing a slower reduction with my GP when I see her on 2 Sept. and also make arrangements to see her 4-weekly rather than 6-weekly as has been arranged until now. All the advice I have received on this site has been so eye-opening and I think I have still such a lot to learn as to how to cope with PMR but am always open to advice and suggestions from people who are so much further down the road than I am. I hope you are well yourself and thanks again for getting back to me.

Following dx of PMR in April, I have had a straightforward and trouble-free taper of 15 - 12.5 - 11.25 - 10 - 9, staying at each new dose for 3 weeks. I have had no return of any PMR symptoms and the only unpleasant side-effect of Pred has been disrupted sleep. So far, I seem to have been one of the lucky ones.

However, now that I have reached 9mg, each drop of 1mg will be over 10% and I therefore intend to start using the DSNS reduction plan. My question is whether each drop should now be 1mg, or whether a 0.5mg drop would be safer, although it will take twice as long to reduce. I use uncoated Pred and can get tablets in 5mg, 2.5mg and 1mg doses, although the tiny 1mg ones can't be split. MY GP seems happy for me to manage tapering in my own way and at my own speed and to see me every 2 months or so.

PMRpro
PMRproAmbassador
in reply to Cross-stitcher

You can only try. With DSNS the 1mg drop should work too - unless it takes you to a dose that is not enough to manage the inflammation. If it works that is good, if it doesn't go back and try 1/2mg. One lady who used the DSNS approach found that when she got to the alternate days old/new she could change to starting on the next new dose by switching the current new dose to being the old dose (if you see what I mean). By doing that she only made a 1/2mg change at any time but managed 1mg per month.

But don't fall into the common trap: this isn't a race. The lower you get, the slower the better. It isn't a race and you aren't heading relentlessly to zero, you are looking for the lowest dose that works as well as the starting dose did.

Floridafan
Floridafan
in reply to PMRpro

I’m a little bit confused. I am now nearly at the end of my 4 weeks 10mg and I am going to try the DSNS method (having tapered down too quickly last time). When you say “when she got to the alternate days old/new“ do you mean when she reached 1 day new dose, 1 day old dose? After that I’m not sure I understand the next steps.

PMRpro
PMRproAmbassador
in reply to Floridafan

I think it was HeronNS who did it. She would explain it better than I can. She was doing it with 1/2mg reductions but was able to get a 1mg reduction over a month.

Let's say the doses are 4.5 and 5mg. At alternate days of 5 and 4.5, instead of increasing the number of days at 4.5, retaining single days of 5mg to get to all 4.5mg, you would take 4.5 for a few days and then have a day at 4mg, a few days at 4.5mg and another dose of 4mg using the usual pattern of reducing the number of days between new doses each time.

Thanks, PMRpro. I'll let you all know how I get on.

I know we are all different. My experience, now in my 8th month with PMR, was to drop quite fast from 20mg to 10mg and then go slowly. I drop .5 now and am at 4.5 for the last 2 days. I won't know if this working for at least 2 weeks and if it is, I will stay at this level for 4 weeks before I attempt another drop.

I recommend a pill cutter from the pharmacy. I have no trouble cutting my 1 mg pills in half.

This is close to the point where I went past where I should have slowed down the taper. I also was tapering by 1 mg a week, and it was at 9 where I felt increasing pain again. I went back to 10, my previous best dose, for two or three weeks, then after that began tapering using the dead slow method. I did get my doctor's approval but I would have done it that way anyhow! It has worked well for me.

For me, the best advice I have had from this site is to take it slowly. I think you have come down to 10 mg very quickly. If you are OK at that dosage, fine, but take it slowly now. Perhaps stay at 10 mg for a few weeks before you reduce again. In my experience, 6 to 8 weeks between reductions was about right. After 18 months on prednisolone, I am now on 3.5mg and I sure ain't rushing it.

Thanks to everyone who has answered my post. I am feeling slightly better today and have decided to try to remain at 10mg daily for the next three weeks until I see my GP on 2 Sept. If I feel at all unwell during that time I will immediately increase the dosage without hesitation. I will keep you posted on my progress - or not, as the case may be! Despite everyone's different experiences, one thing stands out very clearly - very slow tapering is the way to go. You have all been so helpful.

Hidden
HiddenAmbassador
in reply to Billswife

Good luck. Slow and steady always the best. 🌻

Telian
Telian
in reply to Billswife

You've got it! Listen to your body - it knows best.

Think I might be the extreme but takes me 6 months to taper by .5mg - my body just doesn't like it. I've always suffered terrible withdrawals throughout my illness.

5 years GCA/PMR.

Let us know how you get on.

I agree...I have gone from 20mg in May 2019 to 4mg now in Aug. 2019, I'll stay at this dose for approx. 1 month then try a .5mg reduction if everything works out. Right now my discomfort level is approx. 3-4 on a 10 scale. I am not sure if I will ever be 100% pain free.

I seem to have plenty of zip, never was a good sleeper (shift worker)....first thing in AM is the most uncomfortable....shoulders 4 on 10, but gets better as day goes on. Feeling way better then May!!

Go back up to the dose where you.last felt well. This is typical. The doctors are not the wisest. Each person is an individual; therefore individual responses.

10 mg. is where it gets sticky b/c right below you are at the approx. dose your adrenal glands would make their own hormones, but they are still in hibernation due to prednisone.

But you should not be suffering and be very protective of your sight.

You are not panicking" over nothing"; try not to panic though. Listen to your body and think for your own well being.

Best regards..

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