prednisone burst: I am sick all the time—sore... - PMRGCAuk

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prednisone burst

Twopies profile image
23 Replies

I am sick all the time—sore muscles, drippy nose, sneezing, red fingers, gi distress, weak, can’t breathe (although blood oxygen 100%), etc. went to er recently because I was sure I was having a stroke, they did blood work, all ok, didn’t examine me, said “don’t come back.” Saw gp this week who listened to all my woes, examined me, said he thinks that pmr has ravaged (my word, not his) all my systems; his recommendation: do a prednisone burst of 20 mg, the starting dose, for 5 days to reset my system and get it back in control. He gave me 2 refills as needed.

I do believe that prednisone can fix a lot of woes, maybe including mine. However, I also think that if a short blast of prednisone makes me feel better, I won’t know what is causing me to be ill. I’m inclined to think it’s some sort of allergy or food intolerance (I have many of both) but I can’t see an allergist until late october.. btw, a couple times I’ve increased pred by 5 for what I thought might be a flare, and while I had a bit more energy, I didn’t feel a whole lot better. And I don’t sleep at all,worse than now. I’m at 4 1/2 mg pred with severe muscle wasting. (I have seen a physio who gets pmr, I’ve got couple mild exercises to do for the muscles but a lot of time feel too rotten to do them—but I try). Thanks.

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Twopies profile image
Twopies
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23 Replies
PMRpro profile image
PMRproAmbassador

Can't say I'm impressed by your ER - people turn up at the ED in the UK all the time as "frequent fliers" and the staff can't tell them not to come back because one day it will be a real need ...

Have you had Covid? Could it be Long Covid?

Twopies profile image
Twopies in reply toPMRpro

No, never had it. But yes I know symptoms are similar. Never had silent Covid either

piglette profile image
piglette in reply toTwopies

What is silent Covid?

Twopies profile image
Twopies in reply topiglette

No symptoms but still positive

piglette profile image
piglette in reply toTwopies

Ah like a carrier for a disease?

Twopies profile image
Twopies in reply topiglette

They mean you have Covid, will test positive, you are contagious, but no symptoms. So yes, I guess a carrier. I’m allergic to the vaccine and have sheltered in for 4 years. Seldom go out, no restaurants, etc. no guests in home, no visiting, etc. husband same but wears mask to run errands.

piglette profile image
piglette in reply toTwopies

I have never heard of the expression silent Covid.

PMRpro profile image
PMRproAmbassador in reply toTwopies

How do you know to test if you have no symptoms?

Pixix profile image
Pixix in reply toPMRpro

Our neighbours had Covid. She was quite sick, so tested. He was perfectly well, no changes at all. Scary, really! He tested positive & was off work for ten days going crazy as he felt so well. Is this what we called superspreaders, perhaps? Never heard of silent Covid as an expression! Now, I think it one person has Covid the partner often goes about like as normal, I hear some don’t even test now…!

PMRpro profile image
PMRproAmbassador in reply toPixix

My nurse daughter told me the other day that a former colleague tested, was positive and phoned in sick to be given a right bollocking from the management for TESTING as it is no longer policy! i.e. she should have treated it as a cold and gone to work. No wonder there is a problem.

Pixix profile image
Pixix in reply toPMRpro

There you go! My neighbour phoned the school & asked if she should send her granddaughter in if she tested positive for Covid (I’d got it & had been with her little girl the previous day). They said no…as long as the child feels OK, there’s no need to stay off school. A pandemic in the making! It seems senseless to encourage the spread, & I have a friend with blood cancer who is still stuck shielding because of the current spread. As you say, the hospitals are the same as the schools…& guess workforce are expected to turn up with it.

SnazzyD profile image
SnazzyD

Does this ring any bells? Some people do seem to get an increase in allergy symptoms on low Pred doses. Some here have had it quite badly.

healthline.com/health/hista...

Covid can cause these kind of issues too and you don’t have to have felt unwell or tested positive.

Twopies profile image
Twopies in reply toSnazzyD

It rings a lot of bells, yes. I can’t have been exposed to Covid per response to piglette. So if it’s a histamine response, I’m thinking a big blast of pred might help…? In the short run anyway. I also think it’s an anaphylactoid response.

SnazzyD profile image
SnazzyD in reply toTwopies

Anaphylaxis is an extreme response to histamine so sits in the same camp. There is also this

healthline.com/health/mast-...

Might be worth asking your doctor for a decent antihistamine to try.

Twopies profile image
Twopies in reply toSnazzyD

I just replied to you but forgot to reply to you.

Omanain profile image
Omanain in reply toSnazzyD

Thanks for this Snazzy. It answers a lot of questions for me. My Mother had the same problems so it is probably genetic. I will try reducing the amount of black tea I drink!

OilyWiggles profile image
OilyWiggles in reply toOmanain

Tea contains lots of beneficial polyphenols though.

Eatsfruitsandleaves profile image
Eatsfruitsandleaves in reply toSnazzyD

Thank you! I have many of the symptoms and on checking the foods to avoid I do eat many of them( fermented foods, dairy, nuts etc). I'll be doing more research.

Twopies profile image
Twopies

thank you! I’m gonna follow up, makes a lot of sense; your links are very helpful. I recall reading about it long ago but forgot all about it. I do believe that my consumption of salicylates (to which I am intolerant) as well as sulfites is a big factor. I try to be vigilant but whammo! And my visits to er over the many years with my “stroke-like” symptoms seem to have been related to an overdose of something, I never knew what. Am reaching out to a dietician for advice. In the meantime I will try a pop of prednisone, although not as much as my gp suggested.

krillemy profile image
krillemy

I am allergic to certain pollens; however, I never feel any asthma symptoms or runny nose unless I am very, very exposed. I take 12.5 mg of prednisone. I think, as others also write, that prednisone keeps it under control to some extent. I also experience that when I have a virus, it is very mild. Mostly, I am very tired and have a slight runny nose and aggrevated PMR symptoms. It takes days for me to realize what is going on, as it takes a very long time to clear, all due to the immunosuppressive effect of prednisone and methotrexate.

Try an OTC antihistamine for a few days and see what happens.

offprenisone profile image
offprenisone

so sorry to hear your problems...I have been on Prednisone for 13 yrs...I understand...I have been trying to get off it for 2 yrs..was down to 2.5 and blood work showed high inflamation.. had to go to 5 mg..I felt a little better but still in pain and so tired...I hope you get feeling better soon..wish I had some helpful advice but I do feel your pain...

Twopies profile image
Twopies in reply tooffprenisone

Your comments mean so much, thank you for taking the time to reach out. I didn’t do the 20 mg prednisone “burst” prescribed by my doctor; I did 10 and feel better already. (Pred helps histamine reactions too which I’m definitely thinking is my nemesis.). Have appointment with allergist in October and am searching for a dietitian to help me too. Don’t know that I’ll ever kick pmr but sure want these severe reactions to subside. 🤞

iblue profile image
iblue

It may be that you have multiple allergies making you feel sick all the time. I have to agree with the others- a daily dose of a good antihistamine may help to eventually calm your system down. Along with dietary and lifestyle changes.

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