Diagnosis
Gca: Diagnosis - Lung Conditions C...
Gca
Written by
Pllmmjio
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11 Replies
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Giant cell arteritis can be very serious if left untreated. If you’ve been diagnosed I hope you’re being treated properly. Let us know how things go Pllmmjio. Xx
Best wishes- hope you get speedy and successful treatment .
Sorry to hear you have been diagnosed with this Pllmmjo. I was diagnosed with this on 23rd Feb and still waiting a letter to my GP to start meds, this department are pretty slow and have chased up but still waiting. It beggars belief that I have to keep chasing this and I do hope you are having a better response. Although I am not looking forward to starting a long term high dose of steroids as I dont sleep too well at the moment and am worried about long term side effects, I figure its better than going blind. Please keep us updated x
in reply to Izb1
Oh dear, you shouldn't have to chase this yourself,. I'm assuming the diagnosis was made at the hospital. Your GP should chase this up for you. They only have to pick up the phone and ring the relevant department to confirm the medication needs. Disgraceful.
Izb1 in reply to
Until my gp receives the letter she doesnt know, more to the point surely is time, I could lose my sight at any moment and steroids is the only thing that will stop this, its too late once it happens as it cant be reversed x
in reply to Izb1
Absolutely. This is an emergency situation. I was in a less acute but similar situation with a change of medication from the hospital which I was running out of and the GP had not yet received a letter. He would not therefore prescribe it, which I can understand, but did chase it up with the relevant department and got back in touch the following day with a prescription.
I think you need to complain to all relevant departments.
Izb1 in reply to
Thank you am thinking of doing just this x
I’m sorry to hear you are struggling to get treatment. Have you joined the PMR/GCA thread on healthunlocked. You could also give the vasculitis U.K. helpline a call to see if they can point you in the direction of specialist help in your area.
As this is an autoimmune disease and I am under rheumatology for rhematoid arthritis I am wondering whether to contact my rheumy doctor and ask if they can treat me but disinclined to do this as it cuts out my gp x
I would definitely mention it to your rheumatologist. I have another form of vasculitis and the only thing my GP does for me is my repeat prescriptions. You need to check that your rheumatologist has the specialist knowledge to treat you. If not find one that does and ask your GP to refer you. The vasculitis helpline can help with this. You shouldn’t be hanging about as you could deteriorate in the meantime. Good luck.
