In the wee hours

[Tuffymason]

OMG dears, it is 2:30 am and my mind won’t shut off and my eyes won’t close. I saw my rheumy on March 14 where she increased my prednisone to 15 mg a day for two weeks, then to 12.5 for two weeks then 10mg for two weeks then finally back to my replacement dose for Addison’s at 7.5mg. She is also working on funding for Rituximab.

It is all about inflammation and getting to a complete diagnosis regarding a stroke I had last October. All tests heart, diabetes, blood pressure came back good. At this point the Stroke clinic neurologist is setting up more tests, a CT with contrast to view the vessels in my neck and head. Although he didn’t come out and say it I think from my symptoms he believes this may be vasculitis in my neck or head.

It normally takes 6-8 months for tests to be done but he says it will be much sooner, maybe 2-4 weeks. He also asked if I was still taking the low dose aspirin. It sounds kind of urgent to me. We’ll see. He didn’t say he doesn’t believe my symptoms are caused by the stroke its self. We did discuss inflammation though. My other autoimmune diagnosis, Lupus and Sjogren’s, cause allot of inflammation. I suggested that maybe it is all just a really bad flare? (thinking, hoping maybe it’s not vasculitis.)

Either way it’s lots of prednisone for the time being. That and no sleep! lol What on earth do you do at 2:30 in the morning when you cannot sleep? I love to bake, and I have got up and done that before…but now it is a dangerous game…because I want to eat it! Lol…can’t do that on prednisone! Callie

[DorsetLady]

Welcome to the world of many re sleep - see this- on another forum, but will be able to read it okay - you see what others do in the responses -

healthunlocked.com/pmrgcauk...

Hope it’s not, but wondering if GCA is under consideration.. that’s the forum the link is from.

[Tuffymason in reply to DorsetLady]

Thank you for the link, loved the list of pointers. It is pretty much the way I have lived my entire life but when the insomnia gets to bad for too long and my thoughts start to jumble a list will be handy.

So far my specialist are not really naming anything. I am sure after all the heart test, labs for diabetes, high BP came back good that it opens up the next level. He did talk about the vessels. Plus a CT of the vessels with contrast dye. I have been reading over the Vasculitis Foundation info re types of Vasculitis and there are several that could fit! LOL Plus there are other things like Rheumatoid Arthritis of the head, or just really an out of control AI flare. Probably many others I have never even heard of. So although the process has been slow so far, I hope with the Stroke Clinic and the Vascular Neurologist now on board maybe some answers and treatment will come soon. What I have noticed is that with the high dose prednisone I am doing much better. I can walk on my right foot/ankle now and I ham able to have a conversation. And that’s only 15mg….for the ITP they had me on 90mg for nearly a year! Thanks so much for your support at such a vulnerable time. Callie

[DorsetLady in reply to Tuffymason]

You’re very welcome…

[Obscureclouds]

You have my sympathy although I was better sleep-wise once I got down to 20mg Pred. Before that it was usually awake by 3.00 in the morning (4.30on a good day) and I could still be going strong at bedtime even when I had a five mile walk in the day. .Myhouse had never been so clean and tidy. It was difficult to fill those early hours as I couldn’t seem to concentrate to read or watch TV. I did get through a lot of puzzle books and a couple of 1000 piece jigsaws which I did find helped both to fill the time and to stop me thinking I wanted something to eat. Good luck with your tests etc

[Tuffymason in reply to Obscureclouds]

My house never looked so clean and tidy….lol….I know exactly what you mean! Some days I feel like the white tornado and the next thing I will find myself up fixing the roof or putting on an addition before I can stop myself! Callie

[Main1234]

hi when my partner was on 60mgs a day he found sleep very difficult. He used his iPad at night and did a lot of online shopping!! I remember it being a bit of a manic phase but as he had been so ill he was forgiven and it soon passed as the dose was reduced.

You have been given some ideas of how to fill those long hours and I wish you well. Hope you get a diagnosis soon.

[Tuffymason in reply to Main1234]

You know because I have used prednisone all my life it has taught me that this too shall pass and not to get cross with myself for not being asleep like the rest of the world. I used to actually feel guilty about it like I was doing something wrong. Not anymore, and somehow I still get enough sleep to be able to function. Actually pain is far worse for sleep than the steroids. So the added prednisone has really helped with that, so I sleep far more comfortably and better. I will find something to fill the hours I am sure. Thanks so much for your support. Callie

[piglette]

I discovered the BBC World Service. You hear things on there that are never mentioned anywhere else including some news items. My sleep is getting better now and so I go to sleep in the middle of programmes which of course is also annoying!!

[Tuffymason in reply to piglette]

Yes, I find that too! I start to watch something and then I am suddenly out like a light. Then twenty minute later I am wide awake again! LOL Thank goodness for my PVR…I can just rewind and start again. I will have to look up the BBC World Service. Thanks, sweet dreams, Callie

[piglette in reply to Tuffymason]

The advantage of the World Service is that you can shut your eyes and just listen.

[Support_helps]

Hello, I hear you and know your feelings very well. Diagnosed with renal limited vasculitis about a year ago now and went through Induction with Cyclo and Pred for some time. Plenty of anxiety and insomnia especially the night before blood tests. Currently in Maintenance with Rituximab with possible gradual shift to Imuran. Over past Christmas and New years 40 day hospital stay with Chronic Pancreatitis (cause still not completely know whether alcohol, vasculitis or some combination etc but gall stones ruled out thru MRI). During hospital stay skin outbreak originally diagnosed as rosea pityriasis which subsequently became cutaneous lupus erythematosus (CLE) with a nasty itch. More Pred to deal with that starting at 50mg/day now down to 30mg/day. Long term treatment may be plaquenil (anti malarial drug). Sleep does not come easy and varies a lot. As bed time approaches anxiety goes up. Have been taking Clonazepam 2mg which sometimes helps but not always. On those nights where I must get some sleep take a proper sleeping pill followed by a day of drowsiness. Now with so many meds plus supplements sense of taste pretty much shot and nothing tastes good. Searching for the light at the end of the tunnel and hoping it comes when off the Pred in what looks to be around 2 months or so. Good luck with your recovery and praying for you that you don't have Vasculitis.

[Tuffymason in reply to Support_helps]

Oh my word dear, you must be so exhausted with it all. I am so, so sorry it is being so difficult right now. I must say though you are an inspiration. You must be doing something right going through so much and still taking time to reach out to others. Thank you. My goodness it is like we can speak the same language here. Not what language we should call it though….I know the drugs well, and have done nearly everyone you have. Maybe not the “Cyclo”, do you mean cyclobenzaprine? Muscle relaxer? I use Baclofen. I find the clonazepam works really well as a pain medication too. My tablets are 0.25mg and I cut them in half. They are not my pain meds, but when the pain meds aren’t working to well and my shoulders are stiff and sore and up around my ears the clonazepam can really relax my stiff muscles. Bedtime anxiety is a real thing isn’t it. I know it well, but work hard to accept that it is what it is, and this too shall pass. It is so easy to fall into the blame myself game. Wishing you peace, comfort and joy as you head through the tunnel. Callie

[Support_helps in reply to Tuffymason]

Thank you yes very tired and fed up indeed, kinda feel sorry for my wife who has had to put up with my moodiness. Thankfully have avoided depression by listening to the likes of Jordan Peterson who have been through so much more pain so I take this on as a challenge as part of what life can hand us anytime in the hope that it will make me stronger and give me greater appreciation for my blessings. Cyclo is cyclophosphamide used sometimes as a chemo drug in my case in combination with the high dose steroids to get through the vasculitis Induction. We tried Rituximab but that didn't work well in my case. Last couple nights able to fall asleep by not over-thinking it but waking due to lower back pain. Once I get that back pain fixed a better night sleep should follow. Take care and all the best!

[OldTed60]

I’m sure, with Lupus and Sjogren’s and stroke, your rheumatologist will have considered or excluded the obvious contender, ie APS/ Antiphospholipid Syndrome. However I thought I’d ask just in case?

[Tuffymason in reply to OldTed60]

You know I have read about APS before but have forgotten. I th8nk it usually forms lesions in the brain though doesn’t it? My MRI was fine but for the stroke. There are so many diagnosis out there, no wonder it takes so long and so many tests. Thanks for mentioning it, I will re-read it and mention it to my rheumy. Callie

[OldTed60 in reply to Tuffymason]

Hi. I’m not sure about specific lesions but am sure it causes strokes and thrombosis type events. Some can’t get a diagnosis despite antibodies etc unless they e had a stroke or several miscarriages or related I believe. I once went to a talk with a friend called “The Big Three” at London Lupus Centre. The professor who discovered APS, Graham Hughes, was there presenting and others on Lupus and Sjogren’s and the strong interconnections. I believe the main cutaneous sign is Livedo Reticularis - the marbling in the skin when exposed to air. There’s a community here for APS - Sticky Blood / Hugh’s so it maybe worth following and asking.