I am down to 4 mg pred. after 2 years, no current pain just occasional tiredness. Over the 2 years I’ve noticed I lack emotion apart from frustration that turns into anger. Very rarely feel happy or excited and rarely content. Is this lack of Adrenalin? How long should I stay on 4mg before reducing to 3, I am currently tapering at 1/2 mg every 4/6 weeks. The immediate effect of the taper is extreme stiffness and pain somewhere, hip and leg followed by neck and shoulder last taper, lasting a few days then going so not a flare. How low do I have to go before emotions return? Is this usual with pred.?
The only other lasting side effect( apart from trouble sleeping, heart burn and bouts of tiredness and inability to lose gained weight) is how dry and thin skin has become in spite of dedicated moisturising. My arms are so crepey now they look like the arms of a 90 year old not a 73 year old. At least my hair has all got thicker again and my legs are less battered and bruised than they have been.
Know there is such wisdom out there I look forward to being reassured and advised.
I never have had a rheumy but now have a wonderful young doctor who admits I probably know more about my illness than he does, and tells me that whatever I am doing is working so keep it up! ( he was referring to my blood sugar level dropping to normal after being pre-diabetic and my cholesterol count being down to 4) He is in no rush to get me off pred. and happy to prescribe HRT ( I’m now down to 1 a week after 33 years of taking it)
Thanks.
Written by
GrannyJane
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Having experienced it personally, this sounds like depression to me. There are a lot of factors that could contribute to it. Obviously issues/ events in your personal life. The toll this disease takes on our bodies. My arms have become crepey looking and I am several years your junior, my moon face, although reducing, has left a less firm chin - it is all quite depressing some days. Have you had your adrenals checked for their ability to work independently - cortisol test/ synachthen test? Well done with the blood sugars. Are you reducing HRT? I wondered why, sorry if you’ve described all this previously. I found that vit B12 and Magnesium gave me a lift. If all this draws a blank then perhaps depression needs to be treated independently with either talking therapies or antidepressants. Goodness knows, we have enough physical and psychological reasons to tip into depression. Best wishes!
All you can do is keep reducing slowly, and small steps (as you are) and have patience-but using a slower tapering method may stop the steroid withdrawal symptoms you describe-couple here-
In addition to the advice of SheffieldJane, the Nhs website mentions changes in mood and depression as possible side effects of long term pred. I have found my low mood has increased (but my anxiety is less!) since I reduced below 5mg.
If it works, here is the link to the section on the Nhs website
I know in my GCA journey, I just got overwhelmed. Life as I knew it was gone. I'm very optimistic, but I knew I needed outside help to stay that way. The red flag was not being interested in doing things I enjoyed when I had the energy. I live in Indiana in the states but Zoom with a therapist in Maine. She helped me to accept a great deal. More importantly, she helped me be comfortable doing what I enjoyed (when energy came my way) and accomplishing something and not feeling guilty when that did not include cooking or cleaning~!! The time for handling everything had passed, and I don't feel guilty about it.
I'm sharing me! It may not be for everyone. My biggest life-saver was this forum and if I can give back a little of the support I've received these three years....I will be grateful. My best...💞
Thank-you all for your thoughts and suggestions. I’d never even considered depression as I’m generally cup half full, but there may be an element there.
I’ll certainly ask the Dr. if I can get a cortisol test. Sorry your arms are also crepey Sheffield Jane, I don’t think any amount of moisturiser is going to correct it, let’s hope skin firms up post pred.
Thank you for links Dorset Lady I will read them and be guided.
This forum is a wonderful sounding board, it is such a help and comfort when you feel so alone and isolated with this wretched disease that nobody seems to understand.😘🙏
I've always been the kind of person who could turn a curse into a blessing...given a few hours or a day. Sometimes when we get worn down...we need a hand. Share the load~~💞
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