Predisilone at night

[christine2715]

Have been getting more and more ill with my slow reduction of Pred - now 25 mg. Spoke to my rheumatologist and he thinks it is the Pred making me ill and that I should continue a slow reduction. He also said I could try switching to taking it in the evening. I currently take it around 7.30. He said I should try that tomorrow all in one go. Which seems to me to be a dodgy strategy.. What does anyone else think? I do at the moment take 24 mg in the morning and an odd 1 mg at lunchtime. I am due a head scan on Monday and he says he will push for a result in a week. What does everyone think? I do usually feel fine when I wake up and twenty minutes after the meds I feel ill. I also take lefrucimide.

[PMRpro Ambassador]

Not particularly dodgy to do it for one day just to switch over - the previous dose of pred will almost all be out of your body by then, it's ha;f life is just a few hours. I know several patients who have had problems that seemed to be associated with taking the pred and taking the dose at night meant they happened during the night so didn't bother them.

However - that they start to cause problems so quickly is quite surprising. Do you mean leflunomide? Which may or may not work as a steroid sparer. What sort of "feeling ill"? Is he sure it isn't that?

[christine2715 in reply to PMRpro]

Thanks for replying and helping me. My head feels like a lead weight and a dull headache, my neck really stiff and sore, I am so weak in my arms and legs, can hardly get upstairs and walk only 200 yds. Feel like I have flu with sinus totally blocked and painful face, pain under ears. Crackling noise when I move my neck. Some sweating but not as bad as I have had. That's about it.

[PMRpro Ambassador in reply to christine2715]

"Common side effects of Arava include diarrhea, nausea, stomach pain, loss of appetite, weight loss, headache, dizziness, back pain, numbness or tingling, runny or stuffy nose, cold symptoms, or itching or skin rash."

I wonder if stopping the leflunomide for a while might make a difference. That would certainly be my preference to trying to rush down the pred.

And sorry Mr Rheumy - but while there is a small pilot study with leflunomide that did look quite promising (22 out of 23 patients with PMR went into remission), I haven't yet come across any in real life where their essays with leflunomide have worked, and that is in PMR. I do know a few people who have had to stop it because its side effects made pred's look perfectly acceptable!

[Judigardener in reply to PMRpro]

I am on Leflunomide. I was ok on 10mg a day but when I upped it to 20mg I felt like I had been hit by a truck. I am reducing the Pred and back to 10mg of Leflunomide. I long to be off all this toxic medicine.

[christine2715 in reply to Judigardener]

I am on 20 mg. so do I long to be off it all. Before this I only took Naproxene for arthritis and rarely took an aspirin. Now on 15 tablets a day.

[christine2715 in reply to PMRpro]

As I understand it the idea was not to take it tomorrow morning but leave it until evening.

[PMRpro Ambassador in reply to christine2715]

If you have GCA then I would say that is a bit risky - it would be far better to take the evening dose the same day as the last morning dose to continue the cover well - the antiinflammatory effect of pred only last 12-36 hours so there is the potential for a longish period without that effect if you lengthen the time between 2 doses.

Sorry - I assumed (wrongly I appreciate now) that you HAD PMR and were now suspected of progressing to GCA. It's one thing spreading doses further in PMR, you will just get a bit stiffer and have a bit of pain. GCA is a whole different matter.

[Doralouise77 in reply to PMRpro]

So if I wanted to switch from a morning dose to a bedtime or 2 am dose, I would be taking two doses within 24 hours? I sometimes don't take my Pred until mid to late morning, not realizing this is not ideal.

[PMRpro Ambassador in reply to Doralouise77]

It doesn't matter if you take a bit extra for one day - in fact, you may have a good day!

[Doralouise77 in reply to PMRpro]

Wouldn't that be nice?!.....thank you, think I will give it a try......

[christine2715]

By the way I have GCA not PMR

[christine2715]

I decided to take 10 mg morning and rest afternoon today. Also did nt take the leflucomide. So far feeling a little better than yesterday but still not well. Resting most of today. Had hoped to go to a local jumble sale, I love a bargain, but suspect I won't be able to make it.

[Marcy47]

Hi christine2715

I read on this forum that it may be better to take Preds at 2am as something (can't remember what) is released into the body at 4am and that causes the pain on waking in the morning. So last night I took my full dose 9.5mg at 2am, instead of with my breakfast around 8am, and I woke with NO pain in my hips and thighs. It is now 5pm and I still have no pain or stiffness. I will continue to take my Preds during the night and hope that this blissful state continues. I am waiting to see the Rheumatologist for the first time on Oct 17th, so see what he says!!

[poppetpain in reply to Marcy47]

Hi Marcimay. I did exactly the same but eventually started taking it before bed at about 11pm. Hey presto still woke with no pain or stiffness next day. I sometimes take it earlier with no problems. I am now down to 5.5mgs pred after starting on 15mg in November 2014. I have taken it VERY slowly but have had no flares or problems. I use the method given on this site to reduce. Glad you've found what's best for you as we're all different. Hugs. Mary x

[PMRpro Ambassador in reply to Marcy47]

Cytokines - the substances that cause the inflammation. If the pred is there reading and waiting - the inflammation doesn't get established. It also seems to mean a lower dose is needed to stop the problem - the later you take it in the morning, the more you are likely to need.

[HeronNS in reply to PMRpro]

I've been wanting to ask you - does the body produce cytokines in the normal course of life, and in PMR is there an imbalance or an over-production?

[PMRpro Ambassador in reply to HeronNS]

All the time , they are part of cell signalling and are essential in fighting off infection - it's when they go wrong the trouble starts. Instead of attacking "foreign" bodies such as viruses or bacteria they attack the body's own tissue by mistake because for some reason they don't recognise it as "self".

I googled production of cytokines to find some links - Wiki is actually quite good and fairly understandable (I think).

en.wikipedia.org/wiki/Cytokine

[HeronNS in reply to PMRpro]

So if a cure is ever to be found it won't be through suppressing cytokines but figuring out how to heal their behaviour.

[PMRpro Ambassador in reply to HeronNS]

Yes, basically. Probably a biologic I imagine but they are difficult and expensive. And you can't develop one until you know the mechanism - which we don't yet.

[elainecleary]

Back in May, I had to travel very early one morning and so I took my Preds at 5am and after a very busy day I thought well I'll know it tomorrow, but as it happened I woke at 5am, felt fine and on impulse I took my Preds at 5am again. To cut a long story short I have been taking them at 5am ever since. I wake eat a biscuit, take the Preds and go back to sleep. Mornings are much better now and although I still have pain at times, it is nowhere as bad as it used to be.

[christine2715]

Stopped taking Leflucomide and began taking most of my Predisilone at 4.30pm. Began on Saturday and have now had two good days. Hooray! Having a head scan this evening so hope this doesn't change the result in any way. Still have some bad symptoms. Judith said she felt like she had been hit by a truck taking Leflucomide. That's just how I feel. Hope the good news continues and thanks for all advice.

[PMRpro Ambassador in reply to christine2715]

isn't it strange that rheumies decide any adverse event is going to be due to the pred and not to any other medication they are using? It really has to be an indicator of their terror of the stuff. When you said you were on leflunomide that was my first suspicion - not the pred the rheumy assumed.

We had a long and VERY lively discussion about using pred in rheumatology at the OMERACT meeting I went to in Whistler earlier this year. There were a few rheumies who totally got where we patients were coming from. We really DON'T like taking pred - but using it carefully is far preferable to adding in another unproven medication in the hope the dose of pred can be reduced. Quality of life is the point - and these other drugs do sometimes have some horrid side effects that make pred look quite the innocent!

[christine2715]

I am also now taking most of my steroids late afternoon which I find good from another point of view as I dont seem to feel hungry all day. Might help with the problem of weight gain.