It has been I while I posted here. I have not had steroid for more than 5years now. Although its very helpful with my inflammations but the side effects is crippling. The weight, my joint (considering the fact tha I have AVN because of long usage of steroid.
I have been on monthly infusions which has helped manage my lupus. But I have been struggling for a few months now with fatigue. I am up on Monday by Friday am knocked off and can't function on the weekend. I am getting out of breath if I just walk for a few seconds.
I went for my infusion and my blood markers are always low but it has dropped even further. It happened in December too but they decided to keep an eye on it. But this month, am exhausted my skin mid leg down to my feet hurts. I have added swimming to my weekly routine to see if exercising to help with my chronic fatigue syndrome but it's not.
I was prescribed steroids for 4 weeks, but I am terrified of taking it. It 20mg for 1week and 15mg the next week, 10mg and 5mg the next couple of weeks. I have been googling natural anti-inflammatory herbs. Luckily I have some cinnamon, and ginger. So I have just made a tea from cinnamon, ginger, lemon, cloves, honey nutmeg.
I pray it helps me get better. If not I will have to take the steroid. I am still struggling with my weight and steroid will kick me back 😭😭. I will get even more hungry. I am tired 😭😭.
Written by
ijeasike
To view profiles and participate in discussions please or .
If you cut carbs drastically when on pred you will find it helps with the weight gain and if you can sustain it you can even lose weight, Everyone on the PMRGCAuk forum is on pred long term - it is the only thing that works - and many of us have avoided weight gain altogether. I lost 35lbs while still on 10-15mg/day. I have been on pred for over 12 years - I'm overweight but i have always been overweight all my life. It isn't pred to blame in my case. But I gain weight if I eat too many carbs.
Pred changes how we process carbs - cut processed carbs and added sugar and the cravings also get less because you reduce the roller coaster of raised BS levels leading to insulin production that sends it too low so you crave carbs to bring the blood level back up. Cutting the carbs does work.
I relate to you on this. My inflammation markers have been high and was put on steroids end of December 2021 and I feel better but the problem is my appetite. I'm always hungry though I'm on 5mg a day and review soon. My Rheumatologist has suggested putting me on Rituximab or Azathioprine so have to decide. I'm on low carbon diet and starting to lose weight. I guess give it a go as it is just a short course. It can help with fatigue and joint pain. Good luck and keep on keeping on X
Hi.As I long term steroid user I fully understand your fears! As much as it's a life saver, steroids are also a nasty drug. However if they give you a better quality of life, they are worth considering. It also sounds like your doctor has a good plan in place to reduce them over time.
Definitely look into turmeric, it's meant to be one of the best at reducing inflammation naturally.
I take a high dose daily supplement, but its more affective to take the spice via cooking it in your food. I'm sure it the thing that's allowed me to reduce my steroid dose. Like with all these things, you have to give it a few weeks to hopefully see results.
Hi ijeasike. I think all the meds we lupus folks have to take could be considered scaryAs you say. Not many people want to take steroids but in our case there are times it is A very effective medicine. If you trust your Dr. Then take it with knowing he/she is
Protecting your wellness. It sounds like a temporary situation for you and not a daily dose forever. Last I would caution you to add supplements for inflammation when you are on your steroids. How will you know what is working? What if your body has a bad reaction and you can’t know if it was turmeric or steroids? Turmeric is effective and strong and works great for some people. Adding it while you add steroids for a few weeks may not be wise.
I am sorry you are having such a difficult time at the moment. I have added below links to our publication which discusses healthy eating, as well as posts from our blog which cover fatigue and pain management:
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Terrified!
Has anyone with lupus very tender swollen lymph nodes under arms.
Is there anyone on long term steroid therapy? Could you share your stories. The pros in specific. 
Change of diagnosis 😲
Azothiaprine and recurrent neutropenia MCTD 
