Hubby constant sleeping

[Hollieby]

I wrote 6 days ago asking for advice as my husband age 63, had had covid and was sleeping loads and no energy. Yesterday 18 days since his positive test, after 3 days of more or less sleeping constantly and not able to wake him up properly, after a doctors visit we ended up in A&E. All his checks came back fine. They did put an IV drip line up, which did perk him up. They only thing that came back from his bloods was that his inflams were slightly raised (not his CRP, that was fine), but they said not up enough warrant any medication. I thought I had saw on here that you should double your pred dose if you get Covid, he didn’t do this, he is only on 4mg. Wondered if this is advisable as they allowed him home yesterday, but he is still far from fighting fit. They did seem adamant that what ever was happening with him was not due to his covid. Any more advice or general thoughts appreciated, especially on his steroid dose, but just to confirm he has no PMR pain.

[PMRpro Ambassador]

At such a low dose of pred I think it could be more than likely that the low level of pred plus Covid has resulted in a degree of adrenal insufficiency. Does he carry a steroid card? Did anyone comment on the fact he is a long term steroid patient? The new card was introduced because many healthcare professionals seem blissfully unaware of the implications - but they need to know that as part of a full history - easily forgotten if they don't ask.

[Hollieby in reply to PMRpro]

Hi yes they did ask about how long he had had PMR and what dose he was on. I didn’t consider the adrenal glad but at the start of this year he was very ill, he was on 5 then and he went and had this checked and it was all good, so if it was good on 5, would it have been affected now?! Not sure, but I will keep it in mind, thanks.

[PMRpro Ambassador in reply to Hollieby]

The synacthen test only shows if the gland is able to produce cortisol in response to a stimulus - and not whether it is doing so reliably. Maybe it depends how unwell you are - and as others have said, Covid often makes you sleepy anyway.

[piglette]

My sister has just been tested positive for Covid and she says she is absolutely knocked out with fatigue. I should think with PMR and the adrenal glands causing deathly fatigue no wonder your husband is sleeping all the time. My sister had had her two vaccinations and was waiting for her booster.

[Hollieby in reply to piglette]

Yes my husband is double vaccinated too, has she suffered any confusion? He has been very emotional too which is not him at all.

[piglette in reply to Hollieby]

She said she had terrible brain fog, she could not believe it.

[Chris_1236 in reply to Hollieby]

For what it's worth:

I was quite emotional during my bout as well. That's very unusual for me.

40mg pred didn't faze my sleeping most of the day for the week I was in hospital. Even tapering over the following weeks did not affect my fatigue and sleep. Only time has helped. I'm 14 wks out since my infection.

5mg is much lower though.

[Hollieby in reply to Chris_1236]

Thanks for that Chris, you must have had it pretty bad. Strangely enough my husband’s first 10 days of covid wasn’t that bad it seems since then that this has all come on. Did you suffer any confusion, his seems to be just the odd thing here and there. Has it taken you the whole 14 weeks to feel completely better?

[PMRpro Ambassador in reply to Hollieby]

I think there is a fair acceptance that it seems to come in stages - and 10-14 days is often one of the changes. Even Long Covid is marked by similar swings with patients improving and then relapsing again.

[Chris_1236 in reply to Hollieby]

As PMRpro mentions, it does seem to come in stages. I clearly contracted C19 on a Thursday. For the next nearly 10 days, I just felt like I had the flu (I've had H1N1 variants twice in my life with a predisposition to secondary pneumonia). By Saturday afternoon (day 10), I knew I was in trouble respiratory-wise. It was that day that I finally decided to head to the ER.

Confusion (aka brain-fog) was a very real symptom. I've had that problem occasionally since falling into PMR, but it was much more intense when C19 arrived. It has since become more like pre-C19 not as often and clearing up as the day unfolds for the most part. I usually don't fight against it which seems to help it pass much more quickly.

It has taken just about the entire 14 weeks for the symptoms/side-effects to morph back to PMR from C19. Funny thing is that during the C19 the PMR seemed to all but disappear. Others in this forum have noted a similar effect during other sicknesses. I guess the C19 gave my immune system something else to munch on other than my body. 😜

I adopted the posture early in this C19 infection of letting my body dictate the need of the hour. If I was fatigued or tired, I slept just as much as my body directed, etc. Two things I did not permit were lack of nutrition of some type and falling into dehydration. Otherwise, I just rested. I have also maintained a strict regimen of supplements to aid in repairing the damage C19 causes. Thankfully my labs are pristine at this point (other than very elevated d-dimer) and there appears to be no lasting damage other than some slight scaring in my left lower lung.

You could inquire about a course of Fenofibrate. There are small scale studies which indicate the use of this as an anti-clotting agent amongst other helpful actions (It appears to have an inhibiting effect on IL6). Micro-clotting is a well established side-effect of the C19 spike protein and is difficult to pick up in imaging. I am on a 31 day course presently to lower my d-dimer level which has been absolutely screaming high since contracting C19. I gave a bit more description of my experience with Fenofibrate in this reply:

healthunlocked.com/pmrgcauk...

The usual disclaimer applies here, of course.

One other thing I would note: C19 seemed to "enhance" some issues which I have had for a long time. ie. My costochondritis has been severely increased and is only now starting to settle back down. Also some plural lining inflammation lingers in areas where I have had issues in the past. So there may be an "amplifying" effect of C19 on preexisting issues.

This is just my own experience (empirical in other words) and may or may not be applicable to others.

[Hollieby in reply to Chris_1236]

Wow you have been through a lot. Thanks for all the information. Wishing you continued recovery.

[mgrogers99 in reply to Hollieby]

The brain fog and fatigue were unreal when I had COVID in December. I also had difficulty breathing and had the "vent talk" with the doctor...no vent for me! I now have been diagnosed with Long Covid and am attending rehab and working on several things. The fatigue continues to be overwhelming.

[Hollieby in reply to mgrogers99]

Really sorry to hear that, it is sounding to me that my husbands condition at the moment is all to do with covid, even though some of the doctors seemed to be saying not. Wishing you well to a full recovery.

[mgrogers99 in reply to Hollieby]

There still is so much that is unknown about COVID also. Hope your husband feels better. It's not a fun experience for certain!

[PMRCanada]

I was advised to up my pred dose when I got Covid. I went from 9mg daily up to 12mg for 14 days. There was a marked improvement on how I felt at the two week mark. Afterwards I tapered down to my original dose without any issues.

I will say that the fatigue and loss of appetite during Covid infection was substantial. My GP also suggested I add vitamin C and Zinc to my supplement list. I was told to ensure that I kept drinking as to not become dehydrated, and to not miss/skip my Tylenol dose which helped with the awful, unrelenting fever.

I feel I was one of the fortunate ones. Our brother in law died, and our step dad who resides with us ended up in ICU for 9 days and then stayed in the hospital a week afterwards. How he came out of it is a mystery considering he smokes about 1.5 packs a day, and has diabetes, high blood pressure, high cholesterol, and hyperthyroidism.

I’m hoping your husband finds some relief of his symptoms soon. Such a worry I can imagine, but you’ve done what you can by taking him to get medical care. He is fortunate to have your support.

[Hollieby in reply to PMRCanada]

I also had covid, I did have fatigue but my main symptom was nausea, which I had to get tablets for as it was totally unrelenting. Sorry to hear you were so bad and for your losses. We also lost a family member, how some people still think this is a conspiracy is beyond me. Thank you so much for your very kind words of support, that has really warmed my heart. Sending you my very best wishes.