Is the fluey feeling, with prickly skin that I get every afternoon from PMR or prednisone?

[Jane424]

I flared following my first vaccine, so increased prednisone. I reacted to this and my doctor told me to decrease although my PMR was still flared. I react badly to pred: had to have chemo stopped (dexamethasone). Am on 8 mg: still very stiff shoulders and hips each morning; very fluey, unreal, skin funny all afternoon. Good and normal after 6 pm. I take my pred: 6 mg at 3 am; 2 mg at 11. It is better than all at once.

I don't know if the fluey feeling is PMR or pred wearing off. Any help so appreciated. Jane

[SheffieldJane]

I have a similar experience at the moment. I am on 8 mgs of Prednisalone. ( no Tocilizumab, due to a bad UTI and antibiotics). I begin to feel waves of flu feelings at about 6 pm. I have tried dose splitting by taking 1 mg in the afternoon and 7 mgs at bed time. I arrived at these timings because I am on Entric coated Pred - they take 4+ hours to get into the system. If you are on ordinary Pred. try a mg or two in the afternoon and the rest at bedtime or 2am if you wake up. The bulk of your dose will help to combat the effect of cytokines ( inflammatory substance) that flow into your body at about 4 am) . This will hopefully give you a better morning. Then the afternoon 1 mg may help your dose to last. I am puzzled that you feel better at 6 pm. Do you have a sleep?I see that you already do the early morning thing. I think you may be on too low a dose unfortunately. Ask your doctor if you can try 10 mgs split dose at timings that suit you.

[Jane424 in reply to SheffieldJane]

Bless you. You have given me clue as I take my second dose at 11 am - perhaps later would be better.. My doctor has insisted I take everything together at breakfast.But I have kept careful notes and there's no doubt that I do better taking it in the night. Yes, I do nap after my second dose and then feel awful for hours.

My problem seems to be that I don't take prednisone well. When I was at 10, I had awful symptoms which stopped when I pulled the pred down.

At Christmas when I started 15 mg pred for PMR, I responded immediately, but as the days went on, the pred seemed to build up and I ended up in ER. My GP took me off pred, but I noticed that for a few days after I was completely off, my pain was still gone. So pred was doing something. I asked if I could be on a low dose and work up. I was maintaining on 7 very well and then had my first vaccine. Huge flare and 10 weeks later still not controlled. I went up to 10 after the vaccine, but within days produced the awful symptoms. My GP admitted she didn't know what to do, but I must get off pred.

Thanks so much for listening. With gratitude, Jane

[Broseley]

I get a pounding heart and pulsatile tinnitus around 6pm. I take my pred at 7am. However I have noticed that I also wake up about 5am with similar symptoms. It is roughly 6 hours each time after I last ate something, so I'm wondering if it is connected with that.

[Jane424 in reply to Broseley]

Have you tried taking your pred before 5 am. I take mine when I wake to pee around 2. It really helps. I take it in a piece of banana.

[SheffieldJane]

Ah! So you are between a rock and a hard place. What are the terrible Pred induced symptoms? We may be able to share mitigating tips.It is usual to be advised to take your Pred dose in the morning initially, but your own system tends to evolve. Run it past your doctor.

With GCA, especially in the early months, it is not advisable to split your dose because of the danger of unchecked inflammation and your eyesight. It is not the same for PMR but I do take most of my dose at the same time for maximum impact on the pain and stiffness.

I feel good after my nap, they seem to restore me. What kind of terrible? It’s not your digestion is it? Pred can be pretty corrosive.

I have had these conditions for 5 years (PMR then GCA 4 years in). My routines, what helps and what doesn’t are constantly changing. It seems to be a matter of intuition and understanding your own unique body, metabolism etc.

I am really sorry that the vaccine knocked you off course. We aren’t left with many choices, Covid could obviously be devastating for us. Best wishes in managing this.

[Jane424 in reply to SheffieldJane]

Bless you! Stomach: mine is badly damaged from 25 years of undiagnosed celiac, followed by 10 months of undiagnosed h.pylori, then chemo. So am careful, which is one reason I split the dose, also it means less pred at once as that overwhelms me.Pred symptoms were too bad to stay at that dose, esp as had happened before. My doctor was firm on that. Am coming down slowly and trying to find a level that I can tolerate and reduces the inflammation enough to be livable.

Today, I delayed my second dose till 1.30 when I started feeling fluey, which I think means it is pred withdrawal from the first dose. Thanks so much. Jane

[SheffieldJane]

Presumably you use some form of stomach protection? I use organic, live, Greek Yoghurt with a dash of honey. This has been as good as anything. Then the Entric coated Pred that has been best of all. My son is completely gluten free, so I know the symptoms well. I really hate that flu feeling - more than the pain.

[HeronNS]

Just throwing this into the mix. Some people who are intolerant of stronger steroids, including pred, can manage with hydrocortisone. The dose has to be spread through the day, and it doesn't manage significant symptoms as well as pred. But if you are over the vaccine reaction it could be something to ask your doctor about.

[Jane424 in reply to HeronNS]

I have been trying to google hydrocortisone, but not getting anything helpful. Do you have any links? Thanks so much, Jane

[HeronNS in reply to Jane424]

I'll see what I can do, but at the moment I'm struggling with a small annoying old tablet and often can't seem to copy links even when I find one.

[Jane424 in reply to HeronNS]

Bless you! Jane

[HeronNS in reply to Jane424]

I don't think this quite what you are looking for, but does explain a little bit how the three main steroids work.

csrf.net/doctors-answers/st...

[Jane424 in reply to HeronNS]

Thanks so much. Jane

[Irishfurbaby]

HiThis drug and condition is the worst. Luckily for me I am off the drug but still feel the withdrawals and side effects. Prickly skin feeling , bad sleepng habits, lethargic.

For me what helped while on drugs was taking Turmic pilates or yoga to fight the stiffness massages and sleeping on an electric blanket at night as it eased the aches in my joints. I still use my electric blanket for relief.

This may help I hope so-good luck.

[PMRpro Ambassador in reply to Irishfurbaby]

Believe me - a few hours roaming a lupus or vasculitis forum would show you that PMR is pretty mild in the great scheme of things. At least we have had a life by the time it appears - never get it in childhood - it doesn't damage any organs and for the vast majority of us it goes into remission sooner or later. Pred isn't the nicest of drugs I agree - but there are far far more unpleasant ones.