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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Ever since I have been on higher doses of prednisone (20 mg for a month and now 15 mg for close to a month) By week 3 of taking prednisone i

A MyLupusTeam Member asked a question 💭
NC

started having muscle issues. Taking it for PMR. Dr did bloodwork and PMR is in remission so she determined the muscle pain was due to steroid. She did muscle bloodwork and it was ok. The neuropathy seemed worse around the same time. I mentioned it but she didn’t elaborate on that. Since then it is getting worse. I have increased gabapentin last week from 1200 mg to 1800 mg daily. I have also lost weight. The first 2 weeks of taking prednisone I lost 7 lbs bringing my weight to 116 trying to eat… read more

July 22
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MyLupusTeam

That does sound like a perfect storm, and it's completely understandable to want clearer answers when your body is sending so many signals at once.

Prednisone side effects are closely tied to dose and duration. At higher doses like 20mg and 15mg, side effects tend to be more pronounced. Muscle weakness is a known side effect Show Full Answer

That does sound like a perfect storm, and it's completely understandable to want clearer answers when your body is sending so many signals at once.

Prednisone side effects are closely tied to dose and duration. At higher doses like 20mg and 15mg, side effects tend to be more pronounced. Muscle weakness is a known side effect of prednisone at higher doses, and your doctor's expectation that it improves at 10mg is consistent with how prednisone typically works. Regarding neuropathy specifically, prednisone's relationship with nerve symptoms is less straightforward than with muscle weakness. Prednisone can affect the nervous system, but it isn't commonly listed as a direct cause of worsening neuropathy. However, the combination of factors you're describing — higher doses, weight loss, and reduced muscle mass — could all be contributing.

At 116 lbs, the weight loss is worth taking seriously. Losing protective muscle and fat tissue can leave nerves more vulnerable and less supported. Some things worth discussing firmly with your care team:

- Push for clarity on the neuropathy source — with lupus, neuropathy can be lupus-related itself, and getting that confirmed matters for treatment
- Flag the weight loss explicitly — 7 lbs at your current weight is significant and your doctors should be actively monitoring this
- Ask whether tapering sooner to 10mg is possible given the muscle and nerve symptoms you're experiencing
- Keep tracking symptom changes as the dose decreases — this information is valuable for your doctors

Advocating clearly and persistently for yourself in appointments really does make a difference here.

July 22
A MyLupusTeam Member

@A MyLupusTeam Member is your doctor regularly testing your A1c levels? Steroids can also increase the risk of developing diabetes, and diabetes can lead to neuropathy. Just something to consider! 💜

July 23
A MyLupusTeam Member

I also have been having problems with my
Muscles too spasms neck and back and shoulders my rheumatologist can’t give me anything because my blood pressure is too low waiting for cardiologist to get back with me he increased my medication for my Afib I’m stopped taking it because of it

July 22
A MyLupusTeam Member

I can't and won't take any kind of steroids. I take hydracoraquine (probably misspelled) and Saphnelo infusions every month. I take something else just don't remember what!
I'm so sorry you're having so many problems. Hopefully you can find another doctor who can help you.

July 22

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