I've just had a telephone consult with my rheum as I'm getting scalp tenderness, jaw pain and fatigue follow I g dose reduction to 40mg.
He says that must mean that I don't have gca as the treatment dose is 40mg (???) Therefore I should be symptom free at that dose.
He now insists that I reduce by 10mg every three days to zero.
In the meantime, I'm to make an appointment with my GP to be referred to neurology and/or maxfax.
I have only a few pred left at the moment, certainly not enough to increase the dose without GP involvement and I can't get in to see her for the next fortnight.
Am understandably very low right now......
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Linda3009
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You've been on pred for several weeks haven't you? In that case, GCA or not, advising you to reduce to zero without pause is putting you at risk of adrenal crisis. This chap definitely needs a refresher course, if he even learned anything the first time....
Absolutely agree with jinasc .....too many symptoms that sound like GCA, Ok some may not be typical - but as we all know that doesn’t mean they aren’t!
You cannot risk your sight, so you have get another opinion...even if that means sitting in A&E for a few hours! Sorry, but you have to be proactive here.
Emphasise the possibility of sight loss to whoever you need to!
Thanks DL, Heron & jinasc
I was about to reply but can see you’ve already done a sterling job x
I agree with everyone. He is not even following guidelines and if you have been on pred for a while he is just so wrong. Protect yourself and your sight by any means necessary. It will be hard but gather any strength you have left and be proactive. Keep in touch🌻
Nothing to add to what's been said. I just cannot believe it - has he never come across the patients who need 60 or 80mg to get things under control? Does he not know that 40mg is the bottom end of the scale for starting dose for non-complicated GCA - and jaw pain is a key pointer to needing a higher dose?
You cannot afford to follow his instructions. I wish one day we could collect all this evidence of downright dangerous Rheumy's and report them to someone- not sure who but this should be out in the open. It is disgraceful to leave vulnerable patients with such bad advice.
Thank you all for your support and advice. It means a great deal to me.
I work in a military health centre and have access to 3-4 excellent GPs (one of whom has experience of treating patients with gca )
I'm going to take advice from them tomorrow before I do anything else.
The consultant did say that once I'm clear of prednisolone, we can run esr and Crp again, and if they are raised then, well that would indeed point to gca and I can restart prednisolone.
You should know that this man runs the fast track gca clinic in Stockport and I was referred to him as my local rheum (Macclesfield) is not taking on New patients.
I explained that for someone of my weight, the lowest treatment dose is somewhere just under 50mg, but he remained adamant that the dose is 40mg and that in any case, because of negative biopsy and bloods plus return of symptoms I actually don't have gca.
When I said that I wasn't comfortable with his reducing regimen, he said he wasn't either but it had to be done as he couldn't justify long term steroid treatment when I don't have the disease.
Am far too defeated to continue with this tonight. Will see my colleagues tomorrow and devise a plan
Clearly, this is urgent you must be seen asap. If you can get to see a neurologist quickly that might be the best path. It was a neurologist who diagnosed me with GCA when GP and Rheumatologist were uncertain. But do get to A&E as soon as you can. Good luck.
GCA is a medical emergency, just like a stroke. Gather your paperwork together and prescription and get yourself off to Accident & Emergency. Take whatever you need for a long stay. Your Rheumatologist sounds dangerously incompetent.
But what worries me is that as a medical emergency - her rheumatologist is the doctor in change of the fast track unit dealing with such emergencies!!!!
I hope you managed to get some rest yesterday and are not feeling as exhausted by this today.
We can see it's not just symptoms and pain , it's not just not knowing and feeling out if control that is getting you down and are harder to cope with.
Have you got someone calm under pressure , Family or Friend , that can be with you to to act as an advocate in getting this sorted out when you feel tired or become stressed while dealing with this problem.
Someone to step in on your behalf in the clinic room and ask them to wait if you need time to find your bearing , listen if you feel like you are being ignored , or basically repeat to them the truth of your symptoms and agree that you are not being treated acceptably.
It would really help , as it is not fair that you are being left struggling.
It will be good to speak to your medically trained friends , and maybe one of them could go to the hospital to help you, but you do still need to go the Hospital.
You need to get a second opinion, either by calling in and requesting one by phone to the Rheumatology Department itself, explaining you would prefer to sort this out without having to put in a complaint to the Chief Exec , and if they say their will be delays request to be put through to the Chief Exec Department anyway.
Or , going in to Patient Complaints with your file of information and ask for them to help advocate for you to be seen today , or this week , by the appropriate Specialist Doctors .
They can be your advocates , as well as having a friend at your side today , to get you seen at least by someone in Accident and Emergency from the relevant Departments , or in Clinic as an Emergency , and get some more suitable advice as swiftly as you need it.
Take care , and I am so sorry that you are being failed in this way , please let someone help support you get the help you need at home , and please let us know your progress as soon as you feel up to it.
I am also in the East Midlands and my experience is just the same as yours I was told almost no one should be on more than 40mg and he couldn’t help me unless I came off steroids despite GCA symptoms and visibly swollen temples so I know exactly how you are feeling. My GP has referred me to another Rheumy but I am struggling to get an urgent appointment.
This site has been a godsend to me as I am not getting help from anyone else. I will PM you.
And thank you once again for your continued support and encouragement.
I didn't go to A&E. I just couldn't face getting the run around again.
My colleagues here have said to reduce steroids to zero, ( but at a slower rate) and they are going to monitor me closely during this.
I'm going to seek a second opinion privately as I don't want to go back to Stepping Hill hospital and Macclesfield rheumatology are not seeing new patients.
At the same time, I've got another supply of pred and if I get any visual disturbance in going to take 60mg straight away.
As a bit of personal background, my husband has stage 4 melanoma , so as I'm sure you can imagine, I don't have a lot of fight left in me at the minute.
I'll keep checking in with updates on how I'm doing.
That's OK - as long as you have someone with a brain keeping a very close eye on you I won't worry! And does it not occur to the gentleman that the stress you are under is enough to poke GCA into life whatever?
I'm so sorry - a close friend was at Stage 4 melanoma at the time my husband was diagnosed with a different cancer and I know what a foul disease it is. She was young and otherwise healthy so it was a long and hard journey that she travelled with great dignity. Hugs xx
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