Side effects
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I have been on prednisolone for 11 days now for suspected temporal arteritis. Started at 40mg for 5 days then after a visit to A& E where my eyes were checked and were OK and my blood was tested and showed a normal result for ESR and CRP I was told to take 60 mg daily until I see rheumatologist. I had to go to A&E yesterday palpitations, trembling, racing pulse, extreme thirst, dizzy, tingling fingers, strange feeling on tongue, strange taste, felt absolutely awful. Dr told me to go back to 40mg until I see rheumatologist. I can feel all the symptoms again today starting about 2 hours after taking the prednisolone. I feel like just stopping it. My original symptoms have disappeared and I feel as though I am doing myself real harm on this drug. Has anyone else experienced this?
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EileenH Fandango
Posted
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
where you can talk to people who have had/have got GCA (temporal arteritis).
The problems you describe are all common at high dose pred and the doctors have only put you on such a high dose because they suspect you have GCA. Untreated GCA can lead to loss of vision which is permanent. Once the vision in one eye is affected the other may go within a short time. At present your eyes are obviously still OK - but if it is GCA that may not last.
About 1 in 5 patients with GCA do not have raised blood tests so that is not conclusive and your doctors obviously had enough suspicions to put you on the high dose needed to reduce the inflammation quickly which it obviously did since you say your original symptoms have disappeared. If you stop the pred and it is GCA those symptoms will return. 40mg is the usual starting dose so they must have had a good reason for using 60mg.
It is your choice, but believe me, it is not as simple as pred does you harm, no pred does not. Mostly these side effects reduce as your body gets used to the pred and you won't be at this high dose for long, it will be reduced. Some people find taking the pred at night helps - others find they can't sleep.
However - I would not stop taking the pred without discussing it with a doctor first.
Fandango EileenH
Posted
anapp Fandango
Posted
I was diagnosed with Temporal Arteritis about 2 years ago. Do not stop the Prednisone unless your doctor tells you too. You have to wean off it and if you do have TA, you need it. I started at 40 mg until a biopsy confirmed it was in fact TA. I felt horrible...like every organ in my body was going to explode as well as many of the symptoms you describe. After a month or so I was dropped to 20 mg but headaches came back so Dr. wanted me to go to 60. I refused because I felt so awful at 40, so Dr. suggested doing 30 in AM and 30 in PM and that was so much better. Maybe you could ask your rheumatologist about splitting your dosage to twice a day. It can be a long slow process getting off Prednisone for this disease. I hope you don't have it, but if you do, just know you're not alone.