I tested positive for covid on 1/10 and was coughing nonstop, fever, headache….they gave me 3 infusions of remdesivir, they said the paxlovid oral med was not a good fit with my meds. I stopped weekly Actemra inj for 2 weeks and Per my endocrinologist instructions I doubled my prednisone from 6mg to 12mg. It was a rough couple of weeks but I am better now, just tired.
I am back down to 6mg of prednisone and did my Actemra injection a few days ago. Today I have pain in my temple (same side that was biopsied 2years ago) steady pain and tender to touch, I’m pretty sure it may be a flare. I am so upset and frustrated as I am to be going down to 5mg next week and Endo was switching prednisone to hydrocortisone twice a day to hopefully nudge my adrenals into working. Also it is easier to do tests for adrenals on hydrocortisone. I was so excited to be getting to this point. Prednisone has been very hard on me and I need to be off it. I’m afraid if I call my doctor they will increase my prednisone and I’ve worked so hard to get were I am. I know I’m whining, it has been two years next week since this all started. I am wondering what might happen if I ignore this sign of a flare and don’t increase my prednisone. I’ve read that GCA flares rarely result in vision loss. Wondering if maybe I just wait it out a few days to see if it goes away. I am so tired of prednisone and Actemra, tired of my immune system not working, I have had pnemonia in October, a sinus infection in December and Covid this month. I am so tired of being tired. If it wasn’t for this group I would also feel very alone with this disease. Thank you for being here and letting me vent.
Peggy
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pmac22
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Just about to turn out my light, but wanted to let you know - you aren't alone. You'll get some support and useful advice tomorrow. My advice is to look after yourself really well just now because we none of us know what the longterm effects of a covid infection may be, but I have heard that allowing oneself to recover well before getting right back into the thick of things leads to a better outcome. Which is a long way of saying, just do the things which make you feel better. Get plenty of rest, but make sure you get some outdoor exercise every day if possible. Don't worry about an increase in your meds - it is what it is, and before you know it you'll be well enough to seriously taper back again. Just don;t push it, or yourself. Hugs.
Thank you. Yes post covid possibilities do worry me. I had covid/pnemonia in June 2020. I have had many issues the worst being uncontrollable blood pressure . I didn’t have high blood pressure before covid but after it was in the 180’s/90’s and that was on 3 different meds! I thought I was having an adverse reaction to the 3rd medicine when my cardiologist said no I think you may have GCA, I had never heard of it before. She put me in 60mg of prednisone and sent me to a neuro opthamologist who did the biopsy about a week later which was positive. I remember the cardiologist was worried about prednisone increasing already high blood pressure but it did the opposite, it came down, had to lower meds even.
That isn't uncommon - if the GCA is narrowing the arteries it will increase yoour BP. High dose pred reduces the inflammation and the swelling in the artery walls and the BP falls.
Oh Peggy! You know a stitch in time saves nine. It’s a blow, I know. People do elect to stay with Pred for this stage. Hydrocortisone is not great for lurking disease. Thinking of you 🙏
yes the Endo said she would check with rheumatologist as she mentioned that it was important to be sure GCA was under control as hydrocortisone was not as good as prednisone in controlling GCA.
I’m just so tired of prednisone and what it has done and is doing to my body and mind.
Do you hear the heartfelt roar of agreement? Everyone feels like this, but the PMR/GCA symptoms are so painful, disabling and horrible . Pred, the miracle drug is the only drug that helps, so far. For me the weight gain and low mood were the very worst side effects. Low carb diet for the former and seek treatment if you are getting depressed. The bad temper is shocking, I have warned the family. Now that I am down to 5 mgs these side effects are receding. As DL says, your increase is temporary, but act fast.
I’m grateful for prednisone possibly saving my sight. But it’s been one thing after another with prednisone. Along with the typical prednisone side effects, I’ve had shingles for the second time, fast forming sub scapular cataracts removed, Afib returned after a successful ablation in 2019, glaucoma, coronary artery disease, abdominal issues. Pneumonia, covid, bruised thinning skin, skin cancer, anxiety, depression. Two years ago I was riding a bike, playing pickle ball (taking lessons), and walking everyday.
"Afib returned after a successful ablation in 2019,"
Given the success rate (or otherwise) of ablation, I don't think you can really entirely blame the pred for that. The autoimmune side of PMR/GCA can cause afib - it did for me - and in fact I find pred invaluable in managing the afib because it is always worse in a flare, related to the inflammation,
Most of the adverse effects of pred can be mitigated or avoided when you know how and many accompany aging anyway. Eye pressures should be monitored and corrected with drops if necessary to reduce the risk of glaucoma developing.
If you follow advice in this link for a flare, your dose of Pred is only increased temporarily to get things back under control. You can then reduce back down, preferably to just above your current dose.
No point ignoring it, disappointing as it may be to increase…it’s likely to get worse….and you end up taking more pred and longer to get off it.
What a tough time you’re having. Hang on in there, DL’s advice is helpful. You may need just a temporary increase. This happened to me on holiday in November. I had 8 days at a higher dose while there, bloods on return CRP 1 so was able to lower again. I think I actually got myself stressed on holiday being in a larger group of people than our previous trip. I do get that sick of being ill feeling, especially when hit with infection on top of the GCA.
"Also it is easier to do tests for adrenals on hydrocortisone."
How? Not being sarcastic or anything- genuinely want to know.
Even TCZ/Actemra isn't perfect - half of patients don't get off pred entirely because their GCA is partly caused by different mechanisms that Actemra doesn't work on .
She explained that a synacthen test was unreliable while on prednisone because prednisone breaks down slowly in the body and rates vary, whereas hydrocortisone reliably disappeared from the body in about 4 hours (hence the afternoon dose). She said the body would therefore be challenged a bit more to recover adrenal function.
That is true - BUT it also is poor at managing PMR so in a patient who still has active PMR you may be stirring up all sorts of hornet's nests. If the patient needs to be on pred for the PMR you have to get a balance. Sometimes endocrinologists don't see that side ...
I don’t have PMR just GCA. I had gotten down to 3mg and had what my rheumatologist thought was adrenal insufficiency. He increased me to 10mg for a week and referred me to endo, I got back down to 6mg then back to back upper respiratory infection then less than a week off antibiotic I got covid. I called endo who said to double dose while active covid symptoms. I just had my first in person visit with her this past Monday. We talked about adrenal glands, prednisone, hydrocortisone and testing.
I am so tired of being tired. You're in very good company there, and you should have a good whinge here, because you can't really do it anywhere else. Hope your symptoms have settled now.
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