Fatigue after Treatment

• By hope4health
• Posted October 1, 2008 at 7:00 pm
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HI Christi,

There are so many similarities between our experiences, and would love to hear more from you.

What does severe steroid withdrawal mean if your adrenals are adequately functioning?

How did you manage to achieve remission...what do you think did the trick.

Thanks for sharing, it helps me keep going...

Michelle

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• By ChristiL
• Posted October 2, 2008 at 4:52 am
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Hi Michelle,

I'm happy to find someone who is having similar experiences.

In my case I am experiencing a less recognized form of Steroid Withdrawal Syndrome (SWS), in that I experience a symptom complex similar to that of adrenal insufficiency despite acceptable cortisol levels. While my adrenal function has fully recovered, I still experience fatigue, low blood pressure, naseau, and insomnia.

My remission was achieved through Cyclosporine A and Prednisone. It was difficult because I developed such a severe case of Cushing's Syndrome. It was so severe that one of my doctors decided to introduce me to his entire staff to show them what true Cushing's really looks like (fun!). While I can't recall all of them off the top of my head, I also took coumadin, aspirin, treatments for osteo, potassium, high doses of vitamin d and calcium, zestril, lasix, metalozone, lipitor... I still take aspirin, lipitor, lasix and metalozone (prn), and zestril... in addition to HRT and asthma/allergy meds. The list grows shorter all the time!

I don't believe it was just the treatments that helped achieve my remission. I made it a point to remove stresses from my life and focus on my health. I learned quickly that this was a time I had to focus on me or I couldn't be there for my family in the future. So my husband took over my business, our finances, everything and I just worked on getting better. He really helped me on those days I didn't think I could swallow another medication... he kept me on schedule. He moved our business offices to our home so that he could be there for me. In addition, I made it a point to treat all my illnesses (asthma, allergies, fibromyalgia) consistently. We made our home as allergy free as possible. We also decided early on that it was important to see specialists and that they all work together which depended on us keeping up with them (a full-time job). Our family doctor agreed and told me that he only wants to see me for annual physicals... colds... I also thought it was important to control the weight gain to prevent diabetes, heart disease... and further stress on my kidneys, so I had a gastric lapband implanted around my stomach. While it was a major fight with our insurance company, it did stop the weight gain and I am slowly losing weight. The signs of Cushing's are slowly disappearing now. Lastly, I think God always plays a huge role in the decisions we make so I looked to him a lot!

While my neph is so positive about the future, I'm a realist so I did discuss what we would do if I had a relapse. He told me that if it does return, he would treat it with Rituxan because the previous treatment was so hard on my body. However, for now, my protein is down from 9+ grams to less than 1 milligram. My kidney function is completely normal which truly amazes my neph. My total cholesterol is down from 458 to 143.

Now, I'm just trying to recover from the side effects of the drugs. My neph did say that at times he prescribes Ritalin to give patients a jump start/energy/weight loss. However, he would require a sleep study be done before pursuing that avenue. I've decided to take a wait an see approach and discuss it again during my December visit. Isn't that great ... a December visit. I like my doctors but seeing them every two weeks is a little too often!

So, for now I'm impatient. I'm frustrated because my confidence and energy hasn't returned. I feel a little lost when it comes to returning to life. I was such a career person.. one of those do everything women... showed no fear... I'm trying to find her again. I miss her and I know my friends and family miss her too. My neph tells me this is normal and it will pass. He always says I can't see the forrest through the trees. So far, he's been right so I'll just have to trust him.

I'd like to know if you're experiencing any of those problems? For a time, I thought, maybe I'm depressed. But, I'm not. I am happy ... just not myself. Has this happened to you! Please share with me!

I have to admit that I am so GLAD I found this forum. I feel like everyone here understands and supports each other. It's really helping me and I hope I can give back and help others!

I look forward to hearing from you!

All my best,

Christi

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