Hi I need help

[Shortfoot]

Hi I am finding not sleeping a problem I might get 3 hours a night .Can anyone help me what are you doing to fix the problem.I started out on 40 mg on November 4 2021 because of GCA had a biopsy which came back negative.So I have reduced down to 11.5 but getting very little sleep and during the day I will try to sleep but I will fall a sleep then after 15 min will wake up fall a sleep wake up fall a sleep. I am finding this the worst side effect of the drug.Last nite I tried melatonin did not work either I have been up since 1:30 pm . Any information out there that may help.

[SheffieldJane]

I was prescribed 10 mgs of Amitriptyline to take one hour before bed. This helped for a while. I also had a regular 90 minute nap after lunch which was a life saver and didn’t effect the night sleep. Are they still searching for a diagnosis for you? Do you have symptoms?A negative biopsy is not definitive proof that you do not have Giant Cell Arteritis. They need to examine exactly the right section of artery. Pred will spoil the result also. Abnormal cells were found in my armpit during an ultrasound scan by a specially trained technician. I have GCA/LVV.

Audiobooks have been putting me to sleep lately - you can put a timer on them.

[Shortfoot in reply to SheffieldJane]

Thank you for the info Iam being treated for PMR now. But i still have neck pain and shoulder pain if I over do things.Shoulder pain goes up to my neck on the right side and head pain in areas of my head like a headache but does not stay long. I do not think my doctor has much experience in PMR I did ask if prednisone would affect my biopsy she said no I kind of wondered if she was right. This afternoon I took a audiobook to bed and had a nap for 1 1/2 hours felt like I won a lottery.Tonight I will try this again thank you .

[DorsetLady PMRGCAuk volunteer]

Hi,

This post may give you some ideas to help -

healthunlocked.com/pmrgcauk...

[SnazzyD]

I agree with SheffieldJane about the diagnosis issue. I was treated as GCA even though my biopsy was negative as were my blood results. They went on symptom history and good response to 60mg Pred. I just existed on naps and stopped trying to get my sleep in the standard 8 hours slot. Made life difficult but it got better as the dose dropped.

[PMRpro Ambassador]

I don't have too much trouble sleeping in general even at pred doses in the upper teens - except I'll be sitting watching TV or working through the forum and find my eyes just won't stay open and so I decide I'll have a nap: immediately wide awake!!! SOOO annoying!

But most nights I take a liquid magnesium supplement to try to calm atrial fibrillation down - I forgot last night and lay awake for ages. Coincidence? Others have found that taking their calcium supplement before bed also helps.

Some people found the Nytols helped - but not all of them, they had to test drive a few to find the one that worked best for them.

Although most interaction sites say there is no interaction between melatonin and corticosteroids, this

mountsinai.org/health-libra...

says "Steroids and immunosuppressant medications. Melatonin may cause these medication to lose their effectiveness. DO NOT take melatonin with corticosteroids or other medications used to suppress the immune system."

Your GP may be able to help - even if it is just the occasional dose to break the pattern of not sleeping which long term is not good for you at all.

[Shortfoot in reply to PMRpro]

Yes I did go out and buy melatonin it did not work but after what you said I will not use again thank you for you help ..

[Shortfoot in reply to PMRpro]

Thank for your help .Where I live I can only find powder magnesium that you mix with water tomorrow I will go out get some. Are you using powder and mixing it?I can be dead tried fall a sleep but I cannot stay a sleep as well.

[PMRpro Ambassador in reply to Shortfoot]

No - here where I live you get measured doses of a salt called magnesium pidolate - seems to be a very Italian/French thing. But we also get effervescent tablets for making a flavoured drink which aren't bad. Magnesium is a "thing" here for muscle cramps and every supermarket sells it!

Took it last night, went to sleep fairly quickly, woke briefly about 5 and went back to sleep again. Must be something in it! It's a small volume (10ml) which is a plus - no middle of the night loo trips! Unfortunately no-one can find it anywhere else.

[Sharitone]

All my sympathy, Shortfoot. My GP insisted sleep should be protected, and prescribed Zopiclone. I was reluctant, but it has made such a difference, sleeping for 6+ hours rather than 3. Like all sleeping tablets, it is addictive, but I have found I can very slowly reduce the dose (using a tablet splitter) as the pred dose has come down.

[sewingscissors]

Hi Shortfoot. I am sorry to hear about your sleep problems and understand where you are coming from, as I have had similar problems from time to time. What I have been finding a great help at the moment is a book called “ Nothing much happens” by Kathryn Nicolai especially the introduction and explanations, but I usually make my own stories up. I do hope that helps.Best wishes

Sewing Scissors 😔

[Shortfoot in reply to sewingscissors]

Thank you your suggestion I will look up the book.

[Pongo13]

Amitriptyline works for me. There is a sleep site on health unlocked worth a look.

[Sanekate]

My GP prescribed Fluoxetine off-brand for hot flushes. They haven't disappeared but crucially I don't get them at night any more.