Posted , 6 users are following.
what an absolute nightmare. Is this tiredness lack of energy low self esteem depression anxiety aching joints and limbs what everyone else gets. Would love to hear you experiences
0 likes, 10 replies
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ptolemy ann26722
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ann26722 ptolemy
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Yes I realise but withdrawing sure takes its toil doesn't it
ptolemy ann26722
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wendy62425 ann26722
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Sounds like you may be decreasing too fast. I have had to be on prednisone for a lot these past two years due to Chronic Urticaria. I started on a dosage then my doctor had be go down on the mg very slowly......each week I would go down 1mg. If starting 30 mg I would take that for a week then go down to 29mg the next week then 28 and so on. Needless to say I went through a lot of 1mg prednisone. I needed to do that for my immune system. When you go down on prednisone very gradual there are very few side effects. I have not had any. Ask your doctor about going down slower.....maybe not as slow as me but with your symptoms it sounds like your body is reacting to....too fast of withdrawal . Fortunately the Prednisone has been a blessing for me.
I wish you well. Please keep us posted.
wendy
patricia04797 ann26722
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I'm afraid it's part and parcel of the steroid package for most people. I've been on steroids for 14 years. I'm flaring again so I'm back up to 20mg (I am usually on between 5mg and 10mg). Been getting nausea and a little dizzy this time, so I spoke to my doctor to start tapering, which is OK with him so long as the bleeding has stopped, which it has, and not much pain now either.
I have a love/hate relationship with my steroids!
As Wendy said, slow and easy is the way to go. Keep well.
wendy62425 patricia04797
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Well currently I am very grateful for my Prednisone as it is keeping me hive free giving me a normal life.....such a blessing when nothing else would work. So many make such negative comments about being on steroids but some of us have to. I am concerned about bone density.....being on steroids for 14 years...do you have that issue? I have osteopenia now and am 64. I will go in again for blood work for a check which is good to do every several months.
yes....slow taper is so important for quality of life!😊
have a nice day!
Wendy
patricia04797 wendy62425
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Hi Wendy
I had a bone density test a couple of years after starting steroids which was borderline. Then another test about 5 years and I was still borderline. My doctor also regularly checks my bloods.
My brother (died of Crohn's several years) had osteoporosis and he could break a bone in his foot just by walking across his bedroom floor!
I'm 62 so I guess I've been very lucky so far. I'm am aware things will have to change soon though.
zss ann26722
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Hello Ann,
I suffer from chronic sarcoidosis, an auto-immune disease that is attacking my lungs.
For 8 monthis in 2014 and another 8 months in 2015, I had to take prednisolone starting at 50mg and tapering down to 0mg.
Apart from all of the unpleasant side effects whilst taking it, including jitters, nausea, headaches, skin breakouts and weight gain; I then had to endure the side effects whilst tapering off.
After months of nausea, headaches, sleeping patterns all thrown out and unable to eat, then came the symtoms: lack of energy, excruciating joint pain (I have osteo arthritis), constant sleepiness and irritability.
The reason for this is your body's cortisol levels are low.
When you take prednisolone, the body's own production of cortisol winds back due to the artificial effects of the prednisolone.
When therefore, you are coming off prednisolone. Particularly from high doses requiring a long tapering off period. Your own body's natural production of cortisol takes time to come back to normal levels.
This leaves your body in a significant deficit for some time., with all of the symptoms you have noted.
My most prominent symptom was constant fatigue, resulting in long, frequent periods of sleep. I had no control over this, despite taking some stimulant drugs to attempt to overcome it.
The symptoms are similar to Addison's Disease:
https://patient.info/health/addisons-disease-leaflet
JFK had Addison's disease:
http://articles.latimes.com/2009/sep/05/science/sci-jfk-addisons5
As an idea of how long it will take to recover from your cortisol deficiency, a rough gauge is the length of time you were on prednisolone, including the tapering off, is the same time it will take to recover normal cortisol production.
You will get over it though.
Take care.
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ann26722 zss
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zss ann26722
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