Morning folks, I'm into the 4th day of dreadful nausea, eating very little & generally feeling unwell. This is the second bout of the same symptoms that occurred 6 weeks ago during a UTI and two really bad muscle strains. Back then I was at 14 mgs Pred and increased to 20mgs for around a week then back down to 16mgs in the next few days. At the moment I'm on 15 mgs and reluctant to increase because my bone loss is significant particularly in the spine which gives me a lot of pain when standing for longer than a few minutes. However, nausea has always been a factor before when I've needed to increase. I'm stuck between a rock and a hard place as my stomach issues & UTIs are recurring probably from the lack of immunity which increases as I increase the Pred. It's difficult to tell if I have a viral infection, although I have had the shivers and alternating sweats during the night. Duringthe day however, this doesn't happen. I'm reluctant to go to A & E for a blood test to confirm rising ESR, CRP etc. as last time the wait was so long I felt worse at home for several weeks afterwards. I guess i know what you're going to say, I'm just very tearful about my situation after more than 3 years with GCA and not being able to reduce the Pred as much as everyone else with this awful disease seems to have been able to do. Any advice greatly appreciated, thanks.
Terrible nausea & feeling unwell: Morning folks, I... - PMRGCAuk
Terrible nausea & feeling unwell
Not to worry you but could be Covid, my partner and her mother had the same nausea, lack of appetite and feeling unwell and tested positive this morning worth checking hopefully it’s not
Oh heavens, think my tests are out of date now. Thanks for the insight.
"my bone loss is significant particularly in the spine which gives me a lot of pain when standing for longer than a few minutes"
First things first - osteoporosis is normally painless unless there are fractures, and they hurt standing and sitting. OTOH, I have horrendous back pain on standing from sitting and after standing for a short time and I don't have low bone density or fractures. It may NOT be the low bone density - get other opinions. Whether the pain can be stopped is one thing, but you do need to look for the cause and not assume,
You cannot compare yourself to others and then feel despondent. We are all individuals and I would say 14mg after 3 years of GCA isn't as bad as you obviously think. I was stuck above that with "just" PMR and many more years. How long is immaterial - 5 years for GCA is very common - whatever doctors say and you see in others. If a few days of more pred stops the nausea etc, it isn't going to make much difference to the bone density. It's a bit like what you eat between Christmas and NY isn't what makes you fat - it's what you eat between NY and Christmas!
But as said - always consider Covid, the symptoms aren't always the ones we expect.
Thanks PMR pro, for sensible speaking. I do tend to catastrophise - it's living on my own with my own thoughts. I'll try upping the Pred for a few days and see if that makes a difference. Thanks again, and for the quick response too.
Upset intestinal tract was a feature (amongst others) of my latest Covid. See how you go; I’m not sure what increasing the dose would achieve at the moment on the face of what you say. I suspect your inflammation markers will be up but you won’t know why because any illness will upset that. Comparing to others can either make one feel miserable or potentially give one a false sense of security. We are all different, with differing physiology and life circumstances. You really do need to plough your own furrow, lonely as that can feel, but we’re all here to cheer you on.
Thanks Snazzy your support is very welcome. Today has been worse than the previous 3 days. My neck, buttocks, back & knees hurt. I want to sleep but can't for the pain and also feeling weak. I'll take it day by day, it's all I can do.
Not saying it definitely is Covid but all of us at home who got it had severe back and shoulder pain. My joints hurt, particularly my hands. Have you got a fever?
I don't have a thermometer but have had some chills and sweating through the night. My heating is cranked up higher than usual just now.
Sounds like an infection of some sort then.
Hi and so sorry. Nausea can take you out! I was put back on HCQ and had terrible nausea so I had to cut back to pm only. On 3 bp meds and can’t mess with them. Maybe its the coffee. I am going out to get decaf today and transition. Mid day I take Tums and sometimes it helps. Some sweeteners can do it too. Check your diet and your meds. Sometimes meds on an empty stomach can do you in.
Thanks Beachside. I only drink decaf tea. Caffeine gives me reflux. My chewable Vitamin C has aspartame in it. I always take meds with food, even if it's only a small banana which I force down in the morning since the nausea. I'll try the Tums though. Thanks for the tip.
My chewable vitC gave me terrible nausea and upset tummy. Could try stopping them for a few days perhaps. I now only take the VitD +. Take care x
Thanks, 1602 I'll do that until I feel okay again.
Sorry I have no advice but I do feel for you. This can be such a struggle and I can only send my warmest wishes and a bucket load of hope that you feel a bit better very soon xx
Thank you Dinahmite, that's much appreciated.
I have Gastritis (stomach inflammation) and know that it can cause nausea. Had Gastritis way before prednisone but since being on prednisone it can be obnoxious at times, and I always take it on a full stomach.
I always have my Pred with food too. The past few days the nausea has stopped me eating properly, but I have been forcing down a small banana with it in the mornings.
Perhaps since you've been on pred. for a few years your stomach is irritated from taking it for so long. To check for inflammation in your stomach you would need to see a gastroenterologist to do an upper endoscopy procedure.
I had an endoscopy a few days into the Pred back in 2020. The GP had given me the uncoated tablets without any PPI protection. I did have gastritis and they prescribed Omeprazole 80 mgs a day. I still had reflux and had to beg for many months for the coated ones. Three months later I was prescribed them. Now I'm only taking 10mgs Omeprazole and only have occasional problems when increasing the Pred. Hope I don't have to go through that again - no sedation and I gagged all the way.
Your story parallels mine, but we're all individuals. I've been ill with similar symptoms for a week, including raging diarrhea. GP appt. this afternoon although pretty sure I need bloodwork. Can't sit or stand for long so ER leaves me worse for days. My back is messed up due to 9 vertebral fractures from osteoporosis and back muscles compensating for a spine that's just not working up to par. I also live alone, so I understand that part. I have PMR. Was down to 14.5 mg. GP raised it to 20 and I just raised it to 25 until this stuff passes. I don't have any Covid tests at home but considered that I could have it. A little more Pred for a few days will not compromise your bone density. In the meantime, soft diet and lots of liquids. Hugs to you and hope you feel better soon. xx
I can relate to the reluctance to go to A & E. I spent 6 hours in there over 2 days and it just prolonged my recovery. How do you get around? Do you drive or use taxis? Do you have stairs at home? Do you think the GP understands your limitations? I wonder how I can possibly catch a virus when I only go out for appointments, etc. I've noticed a bulge at the base of my back I think it's called the sacrum. This bulge gets more pronounced by the end of the day and I wonder if it's because the spine is not being supportive. That's where I get a lot of pain when standing too. I upped my Pred this morning from 15mgs to 20mgs. I don't have diahorrea but bowels are loose and uncomfortable. When you reduce the Pred again, do you do it over days or longer?
Hi. Reduction in Pred. from 25 mg back to 20 could be done fast depending how long I'm at 25. The 20 mg back to 14.5 will have to be tapered at 2.5 per month. I get around with a walker and on second floor. So kind of stuck up here until I have to go somewhere. My daughter drives and helps me on the stairs. This is my 6 month being stuck up here, as back is quite bad. Unsure what I have in bowels, but I have to collect some stool and take it into lab. Also have developed a yeast infection in my fat rolls, and have to soak what was a boil so it doesn't fill up again. If it does then I will have to go into ER for lancing. As far as viruses go my neighbours help and come in to check on me. My daughter drives me, etc. Could pick up anything, anywhere. Yes, I think my GP senses the difficulty of all this, but as she says, at least I'm still laughing and joking. I told her I do cry at times. As long as I stop, says she. I'm so sorry you're going through all this. Have you had bone density checked, or other xrays on your spine?
The last time I had a DEXA scan was 2 years ago and the spine was -3.9. I declined the zoledronic infusion at the time but thinking I maybe should have had it. God knows how bad they have got by now. The back muscle strain I had 2 months ago wasn't investigated and since I have this bulge in my back I'm thinking it could be related. Also my right leg has been going numb off & on suggesting a trapped nerve. There's never just one thing to deal with when you're in immune suppessant drugs is there? I felt so desperate last night that I rang my daughter at 7am just to speak to someone. My legs are so wobbly she stayed on the phone until I got downstairs. She lives over 60 miles away but she's popping up here later. I do cry too. I also have insulin dependant diabetes which is another hassle. Still having the sweats and chills through the night and barely coping through the day. How many days have you had this virus so far?
Had whatever it is just over a week. Unsure if it is a virus until I do a Covid test and collect some stool. I had Zolendronic infusion in October. Was reluctant, but really no choice. Not sure if it's working as yet as I've had another fracture since then. I get muscle bulges randomly and it takes days to settle. The muscles are more painful than the fractures, which you may not know you have. Why don't you see someone about a fresh Dexa scan and an xray? The leg numbness could be many things. Hope you feel better soon m'dear.
The GP offered me a DEXA scan last week and I told her I was too scared of what the result might be. Silly answer really, but bad news makes me anxious and keeps me awake at night. I suppose the muscles are working overtime to support your back if it's already weak. I need to face up to what's going on. I think I'll make an appointment to discuss the numb leg situation. My daughtercame up and sat with me for an hour. Offered to stay with me, but I don't want her to taake this time off work looking after me when she should be with her kids. Thanks for listening and I hope your virus clears up soon. Message me any time and take care of yourself xx
I have anxiety disorder so I totally understand where you'recoming from. However, you're letting something go which could be made worse by delaying. Mine was delayed because the rheumy lost the paperwork. Eventually found I had osteoporosis, not osteopenia and now have 9 vertebral fractures. Better to ferl empowered by actually knowing you're doing all you can.
You're so right. I need a kick sometimes.
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