PMR no sleep at night

[Chevypickup]

On 40 mg for one week, now on 35mg on my second week. Can only get around two hours of sleep at night. I feel good in the day time, I do take lots of rest but no napes.

[Blackcatlover]

As you taper it will get better. I found Unisom sleep aid helped. Resting really does help even if you don’t sleep.

[Littlejan22 in reply to Blackcatlover]

Sounds good thanks my problem is I overdo it literally make myself feel worse by doing the laundry, moving the house around, working on my lecture as I lecture fir Derby Ini I feel exhausted by the morning and reall foggy brain due to lack of sleep

[PMRpro Ambassador in reply to Littlejan22]

If rest were written on a prescription would you comply with it?

[alvertta]

Melatonin. 1 mg as you jump into bed.

[Littlejan22 in reply to alvertta]

Thanks is that available over the counter or is it prescribed by the doc?

[PMRpro Ambassador in reply to Littlejan22]

It isn't available OTC in the UK, it is available under very restricted use on prescription.

[alvertta in reply to Littlejan22]

In Canada we buy in the pharmacy. No prescription.

[HeronNS]

Calcium supplement (capsules not tablets) with a little snack, preferably something like yoghurt or kefir, about half an hour before bedtime.

[Littlejan22 in reply to HeronNS]

Thanks I will give that a try appreciate it Janet

[yorkieme]

I go to bed each night having taken a tramadol tablet,just hopeing and praying for sleep.Two hours later with severe pain in my back,shoulders,upper arms I'm laying there stuck,can't move my arms,can't fall out of bed,the pain is something I never knew existed.

Days before our five week holiday the doctor prescribed 15mg Pred; first few days was o.k. but the last two weeks has been 14 days of seeing a private doctor just trying to get someone to help.(even called my G.P. fron Canary Isles but no luck,) How do you all cope ? I am new to this,haven't a clue how I got it or when or why.Problem is I have Non Hodgkins,Follicular Pymphoma (no treatment as yet,) but my immune system is all over the place. Any advice really would be a great help.

[DorsetLady PMRGCAuk volunteer in reply to yorkieme]

Yorkieme,

why don’t you raise this as a new post -more people will be advised so will get a better response - in the meanwhile maybe have a look at this fir a bit more info -

healthunlocked.com/pmrgcauk...

Forgot to say - welcome! And can you put a bit more info on your profile please.

[PMRpro Ambassador in reply to yorkieme]

Have you been doing YOUR part? 15mg pred is the bottom end of the dose range for PMR but it will only work reasonably well if you use it properly and do your bit by restricting activity.

However - I assume you mean follicular lymphoma? It can present as PMR:

hindawi.com/journals/crirh/...

I don't know what you weigh but I suspect that the dose isn't high enough - 20mg per days is commonly used and the guidelines for PMR say up to 25mg may be needed:

rheumatology.org/Portals/0/...

Recommendation 3

And you have to do your bit: pred only manages the inflammation but it leaves the muscles still being attacked by the underlying autoimmune disorder and intolerant of acute exercise. You must avoid activites that make the symptoms worse - and persuade the private doctor to give you a bit more pred until you get home. I hope they speak English and can read the references I have given you.

[Mack100 in reply to yorkieme]

Maybe you're one of those people whose body sheds its inflammatory products (cytokines etc.) slightly earlier at night, say 0200 instead of around 0400. This could be the reason why you are waking in such pain.

Maybe you could consider splitting your steroid dose, i.e. take 1/3rd of your daily dose at bedtime and take the rest when you wake in the morning.

I did this to avoid awful pain waking me at about 0500 each morning even though I was on 17.5mg pred. daily. I took 5mg at bedtime and the rest at breakfast time. The result was no morning pain at all.

I'm now slowly tapering my total dose but keeping the bedtime dose at 5mg. So far so good.

[yorkieme in reply to Mack100]

Many thanks for your response Mack100.How interesting ? I am new to this and learning fast.I had to see a doctor because the pain was unbelievable,she suggested that the threshold was so high the pain relief just couldn't work so she gave me an injection of extra steroids,brought the threshold down and gave me Tramadol slow and fast release over each day.It worked great for two nights,the pain is now getting back up there,wide awake by half one etc, and just waiting for around four/five o'clock so I can have the daily 15mgs. Think I will now try your suggestion of splitting the dose but thank god I get back home in ten days time and get it stabilised,I hope.Thank you,and everyone else for such great and constructive advice and support.

[Littlejan22 in reply to yorkieme]

I am so sorry to hear of your pain hope it eases one day for you

[Occhealth]

Hi

I wasn't sleeping at all also became very depressed i asked my GP for mitazepam 15mgs as well as being an antidepressant it has a small sedative in it sleep Ike a baby now

[Littlejan22 in reply to Occhealth]

Will try anything thanks for that advice

[Daffodilia]

I had same problem on 40 mg ( now on 5) - used Tropics sleep spray and temple balm - also got up and had hot choc TIL felt sleepy again - good luck

[Littlejan22]

Oooo had some Tropics tremble balm for Christmas will give that a try thanks