How does one transition between taking pred once a day to split dose?

[Alchemy8]

I was diagnosed in February with very high CRP and and presented with the typical "one size fits all" medical prescription of 15mg tapering. I felt most comfortable on 20mg (April) but tried to drop and have ended up yoyoing back to 20mg after the "dripping bucket" scenario (slow but inexorable). I am impressed by members making this transition to beat the 4.00am inflammatory visitation but am not sure how to do it. It would be a 15-5mg scenario I presume. Would that mean I just change from one day to the next or have an extra 5g in the early morning to kick it off ?? Has anyone found that it enhances the effect of the Pred at this level and how??

[PMRpro Ambassador]

Just do it - take the normal daily dose in the morning, the same evening take what you want to take as the evening dose, 5mg presumably, and the next morning the morning dose. You will have a bit extra in one 24 hour period but that doesn't matter.

[Alchemy8 in reply to PMRpro]

Thank you. I'll try that way and I know the extra boost of 5mg might be welcome even if for one night only!!

[weatherman69 in reply to Alchemy8]

it helps, we have done that for one day!! good luck, My husband has to do split dose, or he starts to flare once under 20mg a day........GCA for 4 years now. The new tapering system is working amazingly well, we are going down by 1mg over 5weeks. 1 mg off the day dose. Next 5 weeks, we will take the mg off the night dose. CRP under 5, and ESR is 8!!! he has not been under 28 on ESR ever until we started this tapering system. So excited, and H/H has gone up more!!

[Alchemy8 in reply to weatherman69]

Hi! Sounds an excellent tapering system. Am still relieved to finds things improving even after one night. As though I am climbing a mountain and can rest on a ledge for a bit. Not ready yet to get back on the ascent (or descent!!). What is H/H???

[weatherman69 in reply to Alchemy8]

hemogloblin and hemocrit!! so excited, I believe my husband will be totally in normal range, next lab checkup!! celebrating labs !!!! no more blood transfusions, no more bad flareups with aall the help we have received and doing split dosing!! he also takes Actemra, 162.5 mg subq biweekly too. CRP under 5, ESR 8 and all looking great, pain very little and only in hand that he did too much with!! stronger walking!! no more headaches for 6 weeks now!! and much more. Praying you get better and stronger everyday

[Alchemy8 in reply to weatherman69]

So pleased for you! Sounds as if you have been through the mill. The help you get here is incredible.

[Alchemy8 in reply to PMRpro]

Quick question - what is the best food to take the 2 am dose with? Completely forgot to take it with anything last night... Definitely feels better. Less deep tightness but that was probably the extra 5mg boost!

[PMRpro Ambassador in reply to Alchemy8]

Lots of people use some natural yoghurt. It depends what you like - others take a sandwich to bed with them. Pharmacists say a glass of milk is enough.

[Alchemy8 in reply to PMRpro]

Thanks so much for your help.

[weatherman69 in reply to Alchemy8]

any thing light is good, if you are dealing with diabetes, I would recommend, 1 piece of bread with peanut butter, or low carb snack.... milk sugar may affect your blood sugar if you are dealing with blood sugar issues.

[Alchemy8 in reply to weatherman69]

Am on the Yoghurt Weatherman69. I avoid bread and so far am not diabetic but certainly getting some extra around the waist area!

I seem to be on a high with this rearrangement. Feel very cheerful for the first time for years!!! Does this mean I should think about tapering yet - or just let it rest for another week (only been on 20mg from 12mg-15mg for a week .

[weatherman69 in reply to Alchemy8]

I agree with DorsetLady, you have to listen to your body and I find keeping a log, is helping tremously!! 1-5 on stiffness, energy etc.... I have been as low as 10, had a set back and pushed all the way to 70mg one time, because the doctor on duty was ignorant. It really messed me up for awhile. Now we have learned that going up a little, can usually put symptoms to down, if you act quickly. I have been under 20 about 5 x now, but always, tried going down by 2mg. It just does ot work for me. I am a big guy, on a split dose, living in the tropics, and try to over exercise when feeling good. I have learned, I have to be slow and steady now. I started the new tapering system I got from DorsetLady, and it is amazing how much better, I am feeling. It has been almost 5 weeks, so I will start the next 1mg decrease over 5 weeks. I have honestly just had one bad day in 5 weeks!! We got scared and my wife gave me an extra mg on night dose, by the next morning, with adequate rest and decreased activity, I was back to feeling good. 3 out 5 is good for me, however, I have had a few 4 days!!! Looking forward to m ore of them. Sleep is the biggest thing that impacts my ability. If do not sleep well, I get in a bad way. I am now able to sleep better too! When my GCA was in full swing, I was lucky to sleep 1 or 1 1/2 hours at a time, and sometimes that is all I got for a day. So I am getting 6 to 9 hours, in 3 to 4 hour intervals and I am much better. Slow and steady wins the race!! and so that is what I am working on. I am just interested in waking up my adrenals, and getting off predisone if all possible someday or less then 5mg., since our bodies make about 5 mg aday on their own. I also hope to get off Actemra as well. Even if I have to stay on Actemra, I am accepting of that too! I hate the shot, but we now use lidocaine topical and ice pack prior to injection and I tolerate the injection . No pain what so ever. So slow and steady is our plan to get us back to our life aboard our yacht!!

[Alchemy8 in reply to weatherman69]

Hi Mr Weatherman - I was communicating with Mrs Weatherman too I think (thank you for your good wishes!). What a rollercoaster and so glad that it is steadying for you at last. I think the worst thing is when you lose your inner gyroscope - it just adds so much stress to the system as you flail around. So I am very glad to hear you are upbeat and positive and with the lure of the yacht... something to aim for. Though being in the tropics would cheer me no end! I lived in Mexico for 9 years.

Like you I am keeping a weather eye on my adrenals/kidneys and doing some vocal toning into the area with the intention of healing/balancing. Perhaps not your thing but I find sound helpful on all sorts of levels. I am currently 5/5 on the WM69 scale with that deeper stiffness but watching the using up of too much energy. Sleep getting a bit ropey - awake for 3 hours after the 2am alarm call this am.

[Bcol in reply to Alchemy8]

Morning, sorry but must have missed this earlier. I take my full dose around, 02:00 and it seems to last me through the day. I have a banana then take the tablets with yogurt. Peter

[DorsetLady PMRGCAuk volunteer]

It’s your choice really - various options -

a. you could just start taking the entire dose at say 2am to catch the 4am dump;

b. Splitting is normally 2/3rd am,1/3rd bedtime (that should help the 4am wobbles) - which would be 13/7 (or12.5/7.5 if you can cut 5mg tablets or mix & match with what you’ve got).

But I would say - if you tried to drop from 20 to 15 in one step - then no wonder you had problems. Might be worth considering 1mg steps down as you’ve had a rocky start.

All above just ideas, you won’t know what suits you until you try.

[Alchemy8 in reply to DorsetLady]

Thank you. Not even thinking of dropping the dose for the moment though I notice that this second time round on 20mg I am stiffer and am aware of the inflammation more. That 5mg drop is your ignorant rheumatologist for you!