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Significant Side Affects Necessitated Faster Taper
Has anyone experienced significant brain fog, concentration, forgetting and other mental health issues? It was impacting my life in significant ways. My Rheumatologist listened and we decided on faster taper. I was on 3 mg. Today started 2.5 mg for 5 days then reduce 0.5 mg every 5 days. Concerned I was at 2 mg last week and had to be bumped up. The results ACTH was normal and CPR 1 point off normal even though sed rate was same as when diagnosed in January. Has anyone else have this experience? I want to get off this crap so I can function mentally again.
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I was able to taper off of Prednisone, 11 months after I started Actemra infusions. Once I got to 5 mg. of Prednisone I made sure I didn't rush my taper. I did not have a flare when I finished. When I was on Prednisone, the side affects were horrible. I could count them on two hands. I'm still on Actemra (17 months) and am getting anxious to taper off of it. It has severely affected my immune system. I have an appointment with my rheumy later this month.
@ropnrose Thank you for sharing your experience. I am having a rough time. Right now I am on a faster taper because of significant side affects of prednisone on my mental health.
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1 Reaction@dswilson913 It might be worth having the discussion with your doctor, if you're a candidate for a biologic.
I picked my poison and it wasn't prednisone. There are side effects with biologics, but in my opinion, no where near the severity of prednisone.
Good luck
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1 Reaction@joycecawthon
I have GCA and on Medicare.
Interestingly, I had brain fog as a symptom of hypothyroidism. You might think about asking your PCP to run thyroid panel plus T3 to see if your thyroid is all in the happy zone. Another possibility would be a low vitamin B, another simple blood test. Chronic inflammation is possibly the culprit and not so much the Prednisone. Don't give up, ask your PCP for help.
@jabrown0407 Thank you. I have hyperthyroidism and it is under control. I will ask about vitamin b. Thank you. I am exhausted
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1 Reaction@dswilson913
Check out the Prednizone pharmacist on you tube. Wonderful and informative!
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1 Reaction@dswilson913 I assume if you have hyperthyroidism then you are working with an endo, ask them about your symptoms since you are on steroids long term. You might possibly have endo problems.
I am super fatigued. It has become problematic with my lifestyle. I have learned it is winning. My body has taken almost full control and my mind is having to acquiesce. I am not happy, but life has become easier when I accept the reality my body is more in charge than I wish.
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1 Reaction@joycecawthon Talk to him about Tyenne - it is biosimilar (the same as generic) to Actemra and costs much less. Still expensive but not nearly as expensive. Possibly Medicaid will cover that cost, also talk to the manufacturer, they might have a program for patients like yourself who cannot afford the medication - don't give up easy.
@gailcha Talk to your doctor about Tyenne - it is biosimilar (the same as generic) to Actemra and costs much less. Still expensive but not nearly as expensive. If your doctor is willing to put you on it possibly Medicaid will cover that cost, also talk to the manufacturer, they might have a program for patients like yourself who cannot afford the medication - don't give up easy.