Best day yet!

[PatB1948]

I decided to take my 15mg Pred at 4am as suggested by some of you. I'm glad to report that today I have had the best day since I was diagnosed. Virtually no pain first thing in morning and not so fatigued rest of day. I shall carry on with this regime as it seems to be working for me.

[Suzanne457]

Hi PatB1948....What a coincidence ... I took MY daily dose of 5mg Pred. @ 3 AM this morning ( just happened to wake up that early) and so far today (Sunday April23. USA time) I am feeling like a real human being ! I have not felt this good for more than a month or two ! The real test will be ..if I set my alarm tonight for 3AM to again take my Pred. early will I have another great day tomorrow???? The drama is unfolding... Thanks for sharing your encouraging news with us !

Suzanne

[navejasjoe in reply to Suzanne457]

Hi Suzanne, just like I asked PatB1948, at 3am, do you take the Pred with some sort of food?

Joe

[Suzanne457 in reply to navejasjoe]

Hi Joe....Nice to hear from you . Yes, I have a small glass of milk and a couple of very small graham crackers with my pred. early am dose. But I see on the posts, that most people use yogurt, which sounds like the best idea or at least a very good one. Good Luck, hope this helps. Suzanne

[Hindags in reply to Suzanne457]

Would a spoonful of peanut butter be ok to take the Pred with. I'm lactose intolerant and even lactose free yogurt gives me problems. Milk too. I'm taking delayed release Pred at the moment, but at some point I might need to switch back to immediate release Pred. I used to take the immediate release when I awoke in the middle of the night and felt much better in the mornings as a result. That's how I get to switch to the delayed release.

[PMRpro Ambassador in reply to Hindags]

Why not - anything that is easy. You'd be OK here - they make all sorts of lactose-free dairy!

[Hindags in reply to PMRpro]

I think I'd love it there.

[edmonton in reply to Suzanne457]

Hello, I too was wondering about the fact that the instructions say take the Preds with food, so understood that to be something substantial like cereal or toast and wondered how you organise eating that at 4am? Also I have to take Lansoprazole 30 minutes before food, so how does all that fit in, in the middle of the night? How do you all get on with these timings?

[PMRpro Ambassador in reply to edmonton]

Pharmacists say a glass of milk is adequate. Some people take a yoghurt or a sandwich to bed with them. And some are on enteric coated pred which can be taken without anything.

You don't take lansoprazole before every meal do you? The effect lasts for 12 hours.

[edmonton in reply to PMRpro]

No just once in the morning before food and then the Press. Didn't think a glass of milk or yogurt would do so that's interesting

[edmonton in reply to edmonton]

Meant to say Preds not Press!!

[PMRpro Ambassador in reply to edmonton]

You can edit - click on the righthand box with the downward pointing arrow

[edmonton in reply to PMRpro]

Thanks for tip - I'm still learning about this site. I have another question, I am hoping to go to Spain for a holiday around mid May, I just wondered if it's ok to fly whilst taking steroids and if there's any other risks going to another country while I'm new to having PMR?

May sound silly and I'll probably check with GP but wondered if you had any thoughts about it, thanks.

[PMRpro Ambassador in reply to edmonton]

It has never stopped me! Since I've had PMR I have been to the Far East and Aus 4 times and North America a similar number of times - both without and with pred.

Some rheumies don't like their newly diagnosed GCA patients heading off too far but others have no objections. PMR isn't a problem.

The one thing I would recommend is airport assistance if you fly from a big airport. The little ones are OK usually but I underestimated the distances at Munich airport which I always think of as being small so the next time I asked for assistance coming back home.

Where do you live?

[edmonton in reply to PMRpro]

North London so will travel from Luton or Stansted, both if which are not too large

[PMRpro Ambassador in reply to edmonton]

No Ryanair airports tend not to be! And it isn't worth asking for assistance from them anyway!

[edmonton in reply to PMRpro]

No, we always fly with Easyjet or Monarch from those airports

[PatB1948 in reply to PMRpro]

I took the enteric coated at 2am with the yoghurt but tonight I will try them with just water as I would rather not have anything to eat as it wakens me up too much and takes longer to fall back to sleep. Thanks, PMRpro

[PatB1948 in reply to edmonton]

I take 15mg Lansoprozole at breakfast time and and again at bedtime.

[markbenjamin57]

Thanks Pat

Just goes to show that different approaches suit different people in the complex process of PMR and steroid management. It seems to me that managing the symptoms of PMR / and the steroids successfully often seems to be a case of personal Trial and Error as much as any 'textbook' approach?

My conclusion? If it works, stick with it. If not, try (but cautiously..) a different approach. Experience can be a great Teacher!

MB

[Amkoffee]

That is so good to hear

[DorsetLady PMRGCAuk volunteer]

Good, pleased to hear it!

[PatB1948]

Thanks everyone for your posts, we'll see what tomorrow brings.

[bunnymom]

So happy for your good day😊

[tinwoman]

Do you take it with food at this time?

[PatB1948 in reply to tinwoman]

Yes, I take it with a small tub of yoghurt.

[Jackoh]

Really good that it appears to work for you. Keep us informed! Do you , as tinwoman( love the name!) asked, take food with it? Perhaps some yoghurt? X Jackie

[PatB1948 in reply to Jackoh]

Yes, yoghurt (child pot size)

[Lochy]

Interesting to read. I've been splitting my dose for several months now and it's been working. Thinking I was being clever I thought I'd take a smaller dose before bed in line with my tapering. Dropped from 5mg to 2mg before bed and then the balance in the morning. I'm currently on 15.5mg. What a disaster reducing to 2! Had two very uncomfortable nights then returned to 5mg last night and what a difference! Far less pain and less stiff. Wondering if I should try taking my balance at 4am? How critical is it to take pred with food? Don't fancy that at 4am!

[PMRpro Ambassador in reply to Lochy]

Depends on whether you are sensitive or not - I could take small doses without a problem, more sometimes pinched a bit. But a glass of milk or a yoghurt is fine.

You need enough to manage the burst of inflammatory substances in the morning - which is why 2mg wasn't enough and 5mg is. If 5mg is stopping the morning problem then maybe you can reduce the 15mg better - and possibly even considerably, especially if you took it later in the day. All the inflammation there is likely to be is created in the morning - then it all depends how long the antiinflammatory effect lasts for you (it varies from 12 to 36 hours)

[Hirwaen]

I started trying 4am we other success and have brought the time back by an hour each night to midnight and wake pain free. I am sometimes a bit sore in the evening if I've done too much during the day. Good luck!🍸

[Lochy]

Thanks it's so interesting to hear what others have to say. When I last saw my rheumatologist he looked surprised when I said I split my dose but said to continue if it suited me. He had no advice when I asked about individual absorption rates! All my useful information has come from this community and PMRpro gives such great advice, thanks. I'll be so encouraged if I can also reduce my overall dose by establishing the most effective time to take my pred.

[navejasjoe]

That's fantastic, PatB1948. At 4am, do you take it with a snack or some food?

Joe

[PatB1948 in reply to navejasjoe]

Yoghurt cold size tub.

[PatB1948]

Meant child size tub. Senior moment!

[Jackoh]

All have them PatB1948! Was trying to work out what was a cold size tub! X

[kulina]

PatB1948 it feels so nice to feel almost back to normal. Doesn't it? Through the advice on this forum I used to wake up at 3 am to take my Pred but as I've been slowing reducing, I now take 2/3 in the morning and 1/3 before going to sleep. Here's a thought, what do you guys think? I used to take my Pred with yogurt too but since Pred diminishes the absorption of calcium are we better off taking Pred with other foods and eat the yogurt 2 hours later so we could get the benefit of the calcium from the yogurt?

[PMRpro Ambassador in reply to kulina]

Depends why you are using the yog. It is less of a problem with dietary calcium anyway but most people use it to avoid needing omeprazole or whatever.

[kulina in reply to PMRpro]

Thanks for the reply, you're saying it helps with acid reflux. Very interesting. I use kefir for that.