Hi everyone
As posted previously, I had my biopsy on 24th March and was discharged without an outpatient appointment. Today I received an appointment with a rheumatologist for the 22nd May, is it normal to wait this long for the results. I am worried about what may be happening with regards to blood levels during this time on Pred without any checks being made and I have a reduction plan of 5mg every 7 days until I'm down to 15mgs from 30mgs. I've read on this site that many people suffer flare ups as they try to reduce but I haven't been told what to do if that happens. I feel like I'm out on a limb on my own, it's a bit confusing and scary.
thanks
Pam
I think you should make an appointment to see your GP for the results.
Thanks for your reply. It's bad timing but my GP is on holiday for 2 weeks and I'm a bit reluctant to see a locum but I think it's a good idea to see her as soon as she is back.
thanks
Pam
Pam, see the locum and explain your anxieties. Nothing lost. When your GP gets back, make another appointment for the same thing. Then you get twice the consultation which GCA patients need early in their diagnosis. 10 mnutes is not enough to go through all the complex information required about GCA.
Pam, your GP practice should also have a copy of your results. You can at least ask to see see another doctor about the results in the meantime. Also suggest to GP that you have regular bloodtests, especially as you are reducing so quickly. Yes, it's scary being left without support for so long and not a good idea.
Reducing as quickly as that is far too quick. Please ask to be monitored until the results come back, and then reduce pred slowly.
Who gave you the reduction plan? It is meaningless without the result of the biopsy and even then the biopsy may be negative but the clinical symptoms still sufficiently suggestive of GCA to keep the pred dose up at 30mg, which is the bottom of the range used for GCA anyway.
The second to last link in this post
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
is to a paper with a recommended reduction plan to use in GCA. They take 6 months to get to 15mg from a starting dose of 60mg (on page 346 of the article). Before reducing at all from 30mg take a copy of this article to the locum (it was written with GPs in mind to help them manage patients) and ask their advice. If the doctors were convinced enough to do a biopsy in the first place they must have had fairish suspicions that it could be GCA, and the locum can also ask the rheumatology department directly for advice. And in the case of GCA your GP should have called or emailed to ask for an emergency appointment not an urgent one which is what it sounds as if she said. GCA should always be referred for expert diagnosis and assessment as a medical emergency - they wouldn't wait for 2 months for a patient who might have had a stroke or a heart attack and GCA comes under the same heading.
You are not "out on a limb and on your own" - not on this forum you aren't! There is always someone here to listen, advise, sympathise. PMR/GCA ARE confusing and, at first, scary. You will learn to listen to your body, listen to our experts - Eileen and Mrs 0 - and REST. Pity the Dr you know is on holiday. 5 mgs reduction in 7 days does seem rather drastic.
Good luck, and take care
Constance
Pam.
Do not make entertain any reduction from now on, stay at 30mgs until the 22nd May.
When you see the Rheumy is when you will get to know exactly what to do. So if you have enough pred to last you at 30mg per day till 22 May - just keep taking the tablets. Too fast a reduction can cause the inflammation to increase Sit tight.
If you are an out patient it takes time unless you are admitted. But don't like hope try also researching on the internet, it helped me a lot.
I saw a Locum Consultant at the hospital when I'd gone there for help as a GPat my surgery decided I didn't have GCA as my ESR wasn't high enough and he wouldn't give me enough Pred. The Locum gave me the reduction plan before I'd had the biopsy. It all seems so disjointed and does not fill me with a lot of faith, the left hand seems not to know what the right hand is doing!.
I will make an appointment to see a GP and will take the info on the link with me.
Thanks so much
Pam