In mid-August 2010, I started taking low-dose Cortef (hydrocortisone) for low cortisol. I took 2.5 mg daily for about 6 weeks.
Then I increased it to 5 mg for 2 weeks, 7.5 mg for 1 week and finally 10 mg for 2 to 3 weeks.
Around the time I had been on 10 mg for about 2 weeks (which was late October), I began experiencing significant fluid retention, swelling, weight gain and severe headaches, especially after I was up on my feet working hard all day.
My legs, ankles, feet, arms, belly, hands and face would swell, and I felt very sluggish. It felt like I was moving my limbs underwater and they felt very heavy.
I finally tapered completely off of it on December 22. It's been a month now since I stopped it completely, and I am still experiencing all of the same symptoms.
I don't know what is happening -- it's been a month now, so the fluid retention and swelling and weight gain should be going away, right?
I also developed a new symptom in December -- joint pain and stiffness in my hips and knees and stiffness in my shoulders. I know this is common with Lyme, but I have never had joint problems before at all. I don't know if this is related to the edema and Cortef or not.
I talked to my LLMD on the phone and he is not sure what is causing this. Any help or thoughts would be appreciated.
Thank you very much, electrolite
Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Hi Electrolite-
I tried to get on Cortef but it actually made my hips/legs ache worse....So, I had to taper it down to get off of it....I FELT LIKE HELL while I was trying to get off that stuff...
I didn't have edema; however, you might want to consider the following:
It sounds like you may have a fluid/salt/electrolyte disturbance while on the Cortef. As you're probably aware, this is a reported side effect of this medication. Have you had a basic blood panel run to check your electrolytes? (see if they are in balance). I would be particularly interested in seeing if my sodium levels were high. I would even call my GP, if your LLMD isn't available, and ask him to run this basic panel. I would also want to know if my potassium levels are low.
As you're aware, you can correct an electrolyte imbalance.
As for the elevation in joint pain/stiffness, Cortef is a strong anti-inflammatory. When you remove this from your body, you may be increasing your body's level of inflammation. It took my body awhile to "calm down" after tapering off the Cortef.
Cortef can leach calcium from bones but usually that takes awhile for that to happen (not sure you were on it that long to have a negative impact)....
Hang in there...
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Bugg, thanks for your reply. I do want to get my cortisol level checked, so thanks for suggesting a basic blood panel as well. That's a good idea.
How are electrolyte imbalances corrected? Usually I was too low, so I would add salt to my food and drink electrolyte water. Now I have the opposite problem. I don't know if a diuretic would help or if I need to correct a hormone problem that the Cortef caused.
The weird thing is that the joint pain and stiffness started while I was still ON the Cortef, not after I got off of it. And I had never had joint problems before at all.
I am aware of the calcium leaching side effect, so I am hoping it didn't do any damage to my bones.
I wonder if I should take any special supplements right now for my bones and joints? Normally I never had to, but maybe I need to now.
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
Isnt Cortef a steroid and bad if you are treating lyme?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Electrolite-yes, I think it's a good idea to get both your cortisol and electrolytes checked through a blood panel.....
Also, for what it's worth, I had severe hip joint pain that radiated down my legs WHILE I was on very low dose Cortef....that's why I had to stop taking it...
I know others on this board have done well with it but it made my joints hurt horribly.....
As for electrolyte replacement, your doctor should be able to correct this by either adding certain oral electrolytes (eg potassium) or restricting some...I doubt you will have to do any IVS but, of course, I don't know your medical history...
Call the doc tomorrow and see if you can get in for a blooddraw for the cortisol levels and the electrolytes....So sorry....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Thanks, Bugg. I understand because obviously I did not do well with Cortef either.
Did your hip joint pain go away after you got off of the Cortef? How long did it take?
Lymetoo -- I will ask a local doctor to evaluate me regarding the edema (heart, kidneys). Thanks!
-------------------- I was diagnosed with Lyme Disease in August 2007, but I now feel it was a misdiagnosis. I was finally properly diagnosed with Chemical Sensitivity in February 2011. My life has changed drastically since then. Posts: 128 | From Dallas, Texas | Registered: Jul 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Electrolite, yes, the pain went away eventually after I tapered off the Cortef.....
If you have cortisol problems, though, I really think the doc needs to take a look at you and make sure your levels are alright.....
Posts: 1155 | From Southeast | Registered: Oct 2005
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