Feeling awful

[Miacaro45]

I am down to 7 1/2 mg of Prednisone from 80 mg four years ago. If I am lucky I sleep about 4 hrs at night which is actually more than I did when I was on higher doses of Prednisone. Lately, I have been experiencing night sweats, once again. What I am experiencing now is that I have to push myself to do anything. I feel like a limp rag and my quality of life is not good. I lost 10 pounds without dieting. I had a battery of blood tests, CT scans of every part of my body and, thankfully, everything turned out normal. These last four years have been rough but what I am going through now is the worst. Any thoughts? Thank you for always being here with your insight and knowledge.

[PMRpro Ambassador]

My first thought is either the GCA isn't quite under control and starting to flare up a bit - perfectly possible whatever some doctors will try to tell you. Or you are on the cusp of adrenal insufficiency which is also possible at 7.5mg, not quite enough for what you really need day to day (hence the limp rag feeling) and not low enough to poke your adrenals to wake up and produce cortisol to top up the pred dose. Weight loss is common - but lowering the pred dose will also lead to that without adrenal insufficiency.

I fear it is a question of plugging on until the adrenal glands wake up - and they can be VERY lazy,

[Miacaro45 in reply to PMRpro]

I appreciate your prompt answer. A lot of “food for thought”.

[JeremyNZ in reply to Miacaro45]

Of course everyone's condition is different. But for comparison, I was never a good sleeper. But from the start of my PMR journey on 40mg pred to now 7mg a year later, it was impossible to sleep without help. I ended up on limiting coffee to just 1. Plus I took a sleeping pill every night to help. Zopiclone. I had a full pill until I was was under about 12mg, then a half till 7mg. I was able to stop lower than 7mg. And I had to, the Zopiclone was starting to affect my short term memory drastically. Really. But it got me through. Ask your doctor for something. You need good sleep to recover.

[Viv54 in reply to JeremyNZ]

I totally agree, i was almost the same . Zopiclone got me through, i am on 7mg but remain on the sleeping pill as i function better , just could not cope with the endless nights of almost no sleep.

[Viv54 in reply to PMRpro]

I felt like you when i reached 7mg i upped it by a half a mg ,i felt so much better. I will stay on that dose until i feel ready to try again .I know its hard but have you thought of upping it? Its amazing what half an mg can do . Good luck.

[PMRpro Ambassador in reply to Viv54]

7mg is acceptable - the joys of admin always send me loopy!! Never had to do it before my husband died and he had done that summer's worth. Can't do 1/2mg, 5, 2 and 1mg tablets that can't be cut!

[DorsetLady PMRGCAuk volunteer]

Would plump for adrenals struggling -see this link for more info - and only thing that helps that is very slow tapering, small steps down in dosage, resting when required - and patience - lots and lots of patience 😳.

But do keep an eye on weight loss… some may be due to lower doses and adrenals, but if it’s unexplained it does need monitoring..

healthunlocked.com/pmrgcauk...

[Miacaro45 in reply to DorsetLady]

Both you and PMRpro are awesome. Not one of my doctors mentioned the adrenals. Thank you, thank you for always being here.

[PMRpro Ambassador in reply to Miacaro45]

They never do!!!! And will argue black is white that it can't be at that dose ...

[Miacaro45 in reply to PMRpro]

👍👍

[SnazzyD in reply to Miacaro45]

They often don’t. It wasn’t on my rheumatologist’s radar but I had a wonderful GP at the time who preempted this part of the journey. By preemptive I mean she set up a Synacthen test for adrenal activity ahead for where I thought I might be at 4mg or less. This is because on the whole adrenal testing isn’t a great deal of use above that.

This level of dosing made me feel like a limp rag as you say because of reasons stated by PMRPro. I too felt that it was debatably worse than the high doses. Until I reduced my way out of this dose no man’s land (about 8-5mg) I felt wretched all day every day. The trouble is that you have to reduce really slowly so as not to tip over into adrenal crisis .

[Miacaro45 in reply to SnazzyD]

Thank you for your detailed response which makes me feel better.

[Grammy80 in reply to Miacaro45]

Aren't they? Though things are different now, when I reached the stage you are in....this past winter, I'm guessing, I just let my body be boss. I hope you are in a position to be able to sit if you are whipped and be patient. Go slowly and don't decrease more until you have been completely comfortable for at least a week. You first...and you'll make it but the slower you go, the better your odds. Take care💞

[Miacaro45 in reply to Grammy80]

Yes, I agree with you. After 4 years, I finally tell myself that if I can’t do it today I can do it tomorrow. Thanks so much for your advice.

[Grammy80 in reply to Miacaro45]

...and if you don't feel like it tomorrow~!! Don't do it then either. You first.💞

[Miacaro45 in reply to Grammy80]

You are absolutely correct. Thanks

[PMRpro Ambassador in reply to Miacaro45]

Ot the day after - or next week ... At our age, does it really matter? Except the tax return maybe ...

[Nextoneplease]

Hi Miacaro (lovely name!)

I agree with others. Keep an eye on the night sweats and the weight loss, and if they continue, I think a medical opinion is needed.

As for ‘limp rag syndrome’, oh my goodness I know how awful that feels! In fact I posted last week about it and got a lot of very helpful responses, I too am sleeping much more (although in my case almost more than I’m awake 🥹) and I have to really push myself to get the slightest thing done. It’s very dispiriting to say the least.

I’ve had this from 7mg and am currently using Dorset Lady’s slow taper to try to get to 6mg. Like you it isn’t pain that’s the main problem, it’s overwhelming fatigue. I’ve learned from this forum that as Snazzy and others say, this is probably a result of adrenals struggling to get going. And the only way to deal with it is to taper down really, really slowly. And contact your doctor again if it get worse….

Just to add, do you have any help at home? I have a cleaner and a gardener and have various small aids like jar openers that are very useful. You need to rest and rest again, keep tapering slowly…..and I’m told that by so doing, we’ll get there! 🤞

Adrenal function can be tested but you need to be on a slightly lower dose than you are now for useful results.

All the best to you 😊xx

[Miacaro45 in reply to Nextoneplease]

It is certainly nice to know that I am not alone. I am definitely going to slow down the Prednisone pace more. I am fortunate to have a cleaner. I have seen all my “ologists” and none of them know what to do with me. How sad is that? Luckily, I am retired and can rest whenever I need. Thank you for your input.

[Angelsmummy]

Morning Miacaro,I too am suffering from “Limp Rag Syndrome”.Am on 5 and 1/2 mg( had to stop taper due to upcoming op)Had bloods done ,all normal as far as I have been told so guess it is the old adrenals trying to kick in,though my doc disagrees!I don’t have to do much to feel absolutely shot and If I do go overboard with something I am laid up for a couple of days,just pushing myself to keep OH and pets cared for on a bad day.Too be truthful when on higher doses I could cook and clean for England,but as I got to about 10 mg the deathly fatigue set in,Just a waiting game I guess for our poor battered bodies to start working again,no consolation if you like me are somebody who has been used to a 100 mph. life.Stay well and take it easy eh?xx🌼😜

[Miacaro45]

I promise to listen to you. Tomorrow is another day(my new motto). Thanks

[Broseley]

Hi Miacaro45, I have two points to add from my own experience:

1. Do you measure your sleep with a Fitbit or equivalent? If not, you may be sleeping longer than you think. For example, I felt like I had a really bad night last night. My brain wouldn't switch off and I would've said that I had hardly any sleep. But my fitbit said I had 6 hours 36 minutes with a good percentage of deep sleep. Knowing this doesn't make you feel less tired, but it does reduce your anxiety.

2. Have you tried taking an antihistamine before bed? I use Actifed tablets, only occasionally if I'm particularly wired and not ready to sleep. It does work really well. P. S. I should've taken one last night!

Good luck with your journey.

[Miacaro45 in reply to Broseley]

I do not own a Fitbit but I just go by the clock. I really sleep well for the 4-5 hrs, I am not wired. I would be afraid to take an antihistamine as I would not be able to function. Thanks so much for your points.

[Artnmusiclover]

Having been diagnosed with Adrenal insufficiency, I agree, I'm thinking adrenals. As PMRpro says, they don't seem to think you can experience it at 7.5mg ...you can! Slow is key... in everything, steroids, getting up, doing things, going out.... take it easy and remember it's no biggy if you Increase even by 0.5. Best wishes 💐

[Miacaro45 in reply to Artnmusiclover]

Thank you. I feel so much better reading this.

[AtopicGuy]

Your Profile/Bio is not up to date, but I understand that, in addition to GCA/PMR, you have also been diagnosed with Hashimoto’s (autoimmune hypothyroidism), IBS, interstitial cystitis, Reynaud’s, fibromyalgia and a myocardial infarction (heart attack). I presume you are on quite a cocktail of medication as a result, and this will bring with it the possibility of side effects. I suggest you keep your PCP/GP fully updated with your symptoms - especially the recent weight loss - as there could be multiple causes.

[Miacaro45 in reply to AtopicGuy]

All my doctors are up to date with everything I have I am not on a cocktail of medications as I only take Synthroid, Clopidogrel-a blood thinner and Zetia . Appreciate your concerns Thanks so much

[KASHMIRI1]

I have been having similar problems and sleep in the afternoon for a while which seems to help. I also saw my rheumatologist yesterday and discussed this problem and he said as PMRpro has said that it is a case of pushing on until it levels out again as everything else was ok. I sympathise with you as I have been feeling horrible.

[Miacaro45 in reply to KASHMIRI1]

Thank you for sharing your problem. It makes me feel somewhat better that what we are going through is “ normal”.

[KASHMIRI1 in reply to Miacaro45]

Its good to know other people are there with you. It makes it not quite so scary.

[Miacaro45 in reply to KASHMIRI1]

Yes, without a doubt. Thanks