Tired and weak

[Blackcatlover]

For the last two months I have felt very tired and weak. I’m tired getting up in the morning and I can’t wait to hit the bed at 8:00pm. Listening to all the great advice from everyone on this site, I had my adrenals tested. I’m down to 4mg of Prednisone and having Actemra 4mg by IV every month. I’ve used the DSNS method and have reduced by half a milligram at a time. My adrenal test can back as 20, right in the middle of normal. Just had my bloodwork done. My Sed is 2 and my CRP was .7. Could this just be Prednisone withdrawal? On my daily walk I find myself struggling on the hills. This is my fourth year with PMR. I’m 74 today and have always been active. Would love to get your advice.

[SnazzyD]

I felt like this before my adrenal system started to work better. Even though my test was fair the endocrinologist said that it only meant the adrenal gland can work, not that the system, which requires more than one step, will work reliably. I reduced at 0.5mg every 6-8 weeks and still felt the withdrawal too.

[Blackcatlover in reply to SnazzyD]

Thanks! That makes me feel so much better. I just have to be patient. 🌼

[SheffieldJane]

All you need is the patience to allow yourself to recover. Build in regular sleeps. This rehabilitation period is very important. The signs are all good. X

[Blackcatlover in reply to SheffieldJane]

Thank you SheffieldJane. I need that reminder to take it slow.🌼🌺

[SheffieldJane in reply to Blackcatlover]

Should you be out and about going up hills? The stairs kill me . Shouldn’t you be isolating ? Forgive me if all this has been discussed. You will be in close contact with your doctors I guess as you are on Actemra. Talk to them about the weakness. I long for bed after the evening meal too. I have had an afternoon rest too. This in itself can be weakening. My Adrenal function has the potential to work. My Rheumatologist says the tests are not that precise. It is a good time to rest. We are missing nothing much, loved ones excepted.

[Blackcatlover in reply to SheffieldJane]

On my walks I still maintain social distance. I’m not one for naps but I think I’ll try to rest more. Thanks for the pep talk.❤️

[SheffieldJane in reply to Blackcatlover]

I love my naps these days. I wake in a different head space. I also sometimes get an evening.

[PMRpro Ambassador]

Most people I know say it took them a year after stopping pred altogether to feel they were back to normal. And as Snazzy has said - all they know is it CAN work, not that it IS working properly.

[Blackcatlover in reply to PMRpro]

Thanks PMRPro. I need to take it slow and one day at a time. You all help with your reassurance. I’m breathing better already.🌺🌹

[borednow]

Hi hope all advice above helps and Happy Birthday!!

[Krezan]

I was in hospital in Dec and told I have GCA I spent 3 days on intravenous then came home on 60 ml of prednisone I have kidney disease and a liver issue and ulcers the prednisone and caused all kinds of problems so reduced the prednisone faster than normal as it was causing a lot of pain with my ulcers with no return of the GCA. I finally got the Actermera and have done 2 shots 2 weeks apart and am off the prednisone with no symptoms of GCA but very tired and I have been unable to talk to my dr for 2 weeks , Also the swelling from the prednisone has started to go down but still swollen through the stomach and it is not from eating as I have no appetite at all. Has anyone else had trouble with this.

[Blackcatlover in reply to Krezan]

So sorry your journey is so hard.

[Telian]

Your body is in the process of big change and the recovery can take months. Listen to your body, take more rest and you’ll get through it.

I’m second time round reducing low following a flare and recognise the symptoms now - first time experiencing symptoms (which I now know were adrenals trying to kick in) I wondered what on earth was happening to me. After evening dinner I would fall asleep and wake suddenly with this feeling that I can’t explain really. It was like my body didn’t belong to me - a very painful sensation in the whole body and didn’t know what to do with my legs - I found standing helped disperse the discomfort. It went off after an hour or so. Not nice.

[Blackcatlover in reply to Telian]

I’m also experiencing weak legs and just a heavy all over feeling. I just don’t feel like myself. Thanks for replying. Hope you are doing well now.🌼

[misspops]

You are not alone. I am at 4mg too. And I have never liked taking naps, unless I was really sick, but, the bed looks so inviting in the middle of the day, that I am thinking about it now.

[Blackcatlover in reply to misspops]

I’m right there with you. Guess we just have to give in and rest when our body tells us.🌼

[DianeA1]

Napping is my Happy Hour.

[Blackcatlover in reply to DianeA1]

Agreed! The problem is that I never want to get up. I now prep my dinner meal in the morning or I would never eat!🤗

[ipsidipsy]

Have you had your Vitamin D levels tested? I felt much like you when reducing the pred and thought it was the cause of my weak/tiredness. Went to see an Endocrinologist about adrenal function and that was OK he then suggested my Vitamin D levels could be low, and they were at 11 ideally should be over 50 at least. I took a high dose of D for 2 months and am now on a maintenance dose of 20,000 units a week. Seems a lot but vitamin D is measured in units and a bit too complicated for me to understand all I know is that my symptoms of weak/tiredness have gone.

[Blackcatlover in reply to ipsidipsy]

Thank you. Normal vitamin levels run from 30 to 60. You might be right. Had my level checked and I was right at 30. Now taking 2000 units of D but maybe that’s not enough.🌻

[Noosat]

I am down to 3mg of prednisone for almost 2 months. I struggle every day, some worse than others. Looking back, I think I am very, very slowly progressing in the right direction. Once in a while, such as yesterday my legs feel much better, to-day not so good. I don't want to go back up on the medication as I have several other health issues it can affect in a negative manner. I soldier on, thinking that even the worst days now are so much better than when I was first diagnosed with PMR. Good Luck !

[Blackcatlover in reply to Noosat]

Thank you. You feel exactly as I do. One day I feel like my energy is coming back and the next day I can barely move. I too just keep moving and hope there will be more good days than bad- very soon. I don’t think the doctors realize what this stage of PMR is like. Without this forum, I don’t know how I would get through this. Thanks for your support.🌷

[Dubler]

You should have your potassium checked. The steroids can deplete it and you will feel exhausted, and it’s very dangerous to let it get too low.

[Blackcatlover in reply to Dubler]

Thank you. My last lab works tested

My potassium and it was normal. I had to go back and look just now. Thanks for thinking of me.