Utterly confused myself and need help

[KinnearD]

I thought I was going okay finding my way through these early days. Quick recap 2 days x15mg taken at 7am then increased to 20 mg with GPs email consent. Have taken 20mg for the past 8 days with good results once I took the Pred earlier ...basically when I woke around the 3-4am except I was having arm pains from 7pm on. Three nights ago I tried a split dose 10mg10:30 and 10mg 7:30 that worked well for morning flexibility and no pain though I was awake lots. The following night I took 10mg at 9:30 ( i was tired and wanted an early night) I woke frequently but was fine in the morning so thought to take just 5mg in the morning so that I could move to a 10mg evening and 5mg morning split...the original 15mg dose. I have probably too much freedom here since I'm contacting my GP through a health portal email system we have in NZ. Fact is I've confused myself about how to time the Pred Its added to feeling devastated since my husband hearing that his mother ( he's one of ten children and never makes contact with his mother including several such episodes) is unwell in the resthome in Australia where she has lived for 25 years, has decided to fly with his brother to visit her and return in a week! I'm raging inside....blame the Pred. We have visitors for a few days. .. our son so I think he's escaping! You cant help me with that distress but I've messed the meds and can't sleep. Last night 5mg 9:30pm, achy and sore 5mg 12am, wide awake racing mind, stiff sore arms and hips so took 5mg at 2am. I was tired but okay on waking and didn't take the other 5mg as I have to figure how to get some consistency since I will be here alone. I'm thinking to take 10 mg sometime this evening ???and 10mg 5-7am when I wake. I'm stressed and muddled and plain bloody mad!! Please offer suggestions for more consistency. I do think I need the split. I would like to do the 15mg rather than 20mg but think the change in routine and this stress makes that unwise. Currently mid afternoon I'm in bed and have had heavy arms and pain. And I'm embarrassed to post this spleel but I will

[scats]

Surely you know not to worry about what you post here, we all know what it's like! Currently 4.30 am here and I'm up because my limbs are aching too.

I think you are right you need more consistancy. I did split my dose 10 and 5 when on 15mg but always 10 in am and 5 at night. It worked at the time but now at 11mg I find it better to take it all in the morning though it still effects my sleeping.

The stress of your husband going away and son visiting would be enough to make the symptems worse so resting is probably the right thing.

I can only go by my own experience those in the know will be up soon hang on in there!

All best wishes.

[KinnearD in reply to scats]

Thank you so much for your quick response though In sorry you are not tucked in bed sweetly sleeping. I've put myself to bed midafternoon avoiding anymore upset too and hoping that making a decision about the split for this next cycle will settle things.

[scats in reply to KinnearD]

Will your son not understand that you are not your usual self, he may be more supportive than you expect? I have one son that is very supportive tho the other hasn't grasped it yet!

[KinnearD in reply to scats]

He is wonderful. Came down fir five days to suss the situation. He will leave two days after my husband heads off overseas but I should be more settled then and less mad! At least he will see the situation at its worth. Must be hard for the adult kids when they usually see the folks or especially their mother in control.

[scats in reply to KinnearD]

Yes I think you're right about it being hard, especially between mothers and sons.

[PMRCanada]

I'm glad you reached out and posted. This bunch is very informative and supportive.

Sounds like you have lots going on there dealing with your dosage, emotions and circumstances having your husband away. Not having consistent sleep, and experiencing ongoing pain is sure to make your situation feel worse.

I can only share my experience in relation to yours in an effort to help you find an ongoing dosage pattern that provides consistency and works. I found when I was at 15mg I began splitting my doses because I was having stiffness and pain all morning. My pred didn't seem to kick in until afternoon and provided relief from the inflammation until I went to bed. I began taking one third of my dose when I got up to use the washroom (between 4-6am) and the other two thirds dose when I rose for the day (I tried to take it consistently before 9am daily). Now that I am down to 12.5/11 alternate days, I am finding it best to take all of my dose at the same time (between 4-6am) so I wake up with less pain.

Everyone seems to process the pred differently. It may take a bit to find a dosage method that works best for you. Seems to me I read somewhere that it is recommended that the patient take the full dose once daily (usually in the morning) especially once you are at 10mg or below. Others on this site will surely post responses that are more informed and accurate (I have only been diagnosed for four months new, a newbie).

Wishing you all the best as your find your way through this exhausting, confusing condition. Hope you get some rest!

[Marilyn1959]

Hi KinnearD. You don't need to feel embarrassed at all. That is the joy of this site!

If you are confused imagine how your body is feeling! Too many changes, too soon. So you need to reestablish a baseline, learning from your experience to date.

Firstly, you may need to lower your expectations, since I get the feeling you are expecting to be completely pain free with pred. (My Rheumy told me to expect 80% of my norm with pred).

Then ask yourself which is the lesser of the two evils - heavy arms at 7pm or not sleeping during the night? Look through your post and try to rationalise - when did I feel at my best since starting pred? Then I personally would go back to this point, accepting that you need to stick with the dose that is most comfortable for you at present, and start again in order to stabilise things. Bear in mind I was eight weeks on my initial dose NOT eight days. The pred needs to get control of the inflammation before any thoughts of tapering. Blood tests (possibly?) in conjunction with how you feel will indicate when the time is right.

Then any thoughts about tapering I. E. 20mgs to 15mgs need to be taken slowly and methodically. I found the drop of 5mgs from 15 mgs (starting dose) to 10mgs on alternate days (as suggested by my Rhemy) too much for my body to handle. It couldn't handle the change each day (sound familiar?), so instead I tried smaller step to 12.5mgs every day for six weeks which worked for me. Slow but sure.

Like all of us you are keen to feel well again. Patience though is a virtue in this PMR game we are all forced to play.

I am sure that the 'pros' will be along with great advice re dosage and timings.

You will find your way trust me.

[DorsetLady PMRGCAuk volunteer]

Hi KinnearD,

Sorry to hear you’re so fed up with yourself at the moment - very understandable as is your reaction to your husband’s leave of absence. Not good timing, but perhaps he’s been pressurised by his brother and/or thinks his mother is seriously ill.

As for tablets, usually split is 2/3rd morning, 1/3rd before bed rather than the way you’ve done - better for sleeping.

However for the next few days it might be wise to go back up to a higher dose. If you have plain uncoated tablets you can cut them (or request smaller dose) - say 12.5mg am, 7.5mg bedtime.

Or maybe try sticking to 15mg, but have a extra 5mg on hold just in case you need it.

[stellafmdm]

I find that if I want to sleep, I can't take any pred in the evening! for me it is breakfast time or midday but no later. I hope things get better for you soon! The advice from the 'Aunties ' is always good. xxx

[KinnearD in reply to stellafmdm]

Thank you all. Its bedtime now 10:30pm and for better or worse I'm going to take 5mg pred plus a half zophiclone (sleeping tablet that I rarely ever use) and the 10mg pred when my abandoning spouse leaves at 4am!! I'll reassess tomorrow about going up to the 20mg. Hopefully some rest comes.

[stellafmdm]

Good luck KinnearD I hope it all goes well for you!

[PMRpro Ambassador]

A good approach would be to START with 2/3 of the dose in the early morning - and the rest a couple of hours before you expect the pain to return. Taking the majority well ahead of bedtime means it is out of your system and may not impact your sleep.

So: IF you decide you need 20mg I would try try up to 15mg in the morning and 5mg about 5pm. It is a matter of experimentation to find what works for you - and the others have suggested really good options. Whatever you do - DON'T dodge about every couple of days. The first time you try anything will be strange, after a few days it may have settled down. Don't be ashamed of resting in the afternoon - loads of people do. I have never done so - but have found myself half asleep on the sofa in the afternoon (I suppose it all depends what I'm doing). And take advantage of being home alone - your son will live without your sparkling conversation and probably enjoy the peace - my daughters do.

[KinnearD in reply to PMRpro]

Hi there

I took the 5mg Pred with 1/2 a 7.5mg zophiclone sleeping tablet and sleep soundly until 4am when my abandoning spouse was departing (couldn't resist that). Took another 10mg than and sleep another two hours. I'm feeling rested and cautiously good. I will take things easy and see how three days go with sleeping aids. I will attempt to leave the touch base with the GP until early next week and not tweak this until then. I know that the zophiclone is a temporary message. Oh and I also allowed myself a small very good red wine with dinner last night and that was lovely. I eating carefully lowcarb etc and have had substantial weight loss. Thank you again