I was waiting for a biopsy with gca and pmr but 7 weeks ago I collapsed and fractured my skull and was in hospital for two weeks, seem to be abandoned regarding that although I am still on the steroids they gave me, trying to get the dose down, at the moment I have got it down to 30 per day but have no guidance with that. Have had an EEG as they now think it might be epilepsy and waiting for the result although they have put me on epilepsy tablets.
Hi Angela Eileen H did put a way of reducing preds very slowly a few days ago I dont know if you have her on your forum page Ido hope so her information is first class good luck '
Thank you but a bit wary until I get a diagnosis. I have been on steroids for 3 months and started off at 60mg so I'm finding it hard without any medical guidance
When you were in hospital did you see and Acute Physician at all. They are brilliant generally work on medical emergency ward admissions straight from A&E. They should never have let you leave without more information and in future if they attempt to discharge you and you don't understand or know what is happening and have a plan. Ask for 'bad discharge papers'. This puts them right on the spot, because if anything does go wrong, it is down to those that discharged you. I know it sounds harsh, but I think you have been left in the dark with a gractured skull, suspected GCA and suspected epilepsy. If I was you I would be screaming at my GP.
What does did they discharge you one and why until you get this sorted out, have you been told to drop the dose. Don't you dare drop anymore. 30mg might just it hold the GCA if it is GCA. But if you get the slightest headache, blurry eyes, even for a second, jaw ache, pain on cheweing, then its 999 and A&E for you.
Please call you GP for an emergency appointment or telephone consultation.
Sorry for the typo's its been a long day today.
Thank you for that, you are right I have been left in the dark but at the moment I am aware of looking out for recurring symptoms but to be honest I have lost faith in the medical profession, so am holding on until my apt in August. I was put in HDU for two weeks as they didn't think I would survive.
I'm very grateful to you