So I went in for my consultation with the rheumatologist today but when I got there I was told she's gone off sick & will be seen by the new registrar
She saw me and stated they wanted to do more bloods as my response to the Pred is not typical to someone with GCA. So I asked her what they think is the problem and she said they dont know!
I wasnt happy about her response as they gave me the GCA diagnosis in the 1st place. She then left to consult with a consultant. So the other consultant came in to see me. Since I went down to 50mg 5 days ago I started getting a headache 2 days ago. This consultant said this shouldn't be happening. So they tried to give me more medication for pain like amitriptyline and then said it might be TNT and offered Carbamazepine. I refused all extra medication & advised I wanted more tests to find out whats really going on. It was a battle but he understood where i was coming from. I had a lot of bloods done including testing to see if I might have vasculitis. It appears this new consultant has a special interest in GCA and they later called me at home to say he will now take over my case! Hope its a good thing! He wants me to continue to reduce the Pred by 5mg per week & see how it goes. He says the biosy will not be accurate at this time so thats still not going to be done. I have an appointment with him next week to discuss the blood tests. Its all so overwhelming & feel very stressed by it all now. Thank you for your continued support, i really appreciate it.
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Poppy1647
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"Since I went down to 50mg 5 days ago I started getting a headache 2 days ago. This consultant said this shouldn't be happening."
Why not? If the dose is too low the headache will come back - what exactly do they claim is "not typical"? And what tests will show if you have vasculitis? Did they mean ANCA-related vasculitis? GCA is vasculitis ...
He says, inflammation always responds to Pred. But since I still have fatigue, muscle pain, sweats, dizziness. He feels all these should have settled by now! That I shouldn't be experiencing headaches again at 50mg. Therefore he thinks theres something else going on.
One is tempted to say that these are tests that would have been appropriate at the outset before plumping on GCA as the solution. Ah well, better late than never and I do wonder what he will say if things don't match his expectations - as mine didn't.
To be continued - looking forward to the sequel. Don't stress - it really isn't worth it.
The fact that you have been taken on by a Senior Consultant with an interest in GCA is a very positive thing . If it is GCA as currently diagnosed they will be far more interested in why it isn't responding to treatment , and will do more tests like today ( more than your general Registrar would be allowed to sign off on ) and find out the route of the problem , like the Vasculitis tests today.
You are also more likely to get quicker follow up appointments in the future to sort things out.
In relation to the other drugs being offered , I know it's hard to make a decision to try them , I've been there , you resist , especially if you feel they haven't totally confirmed your main diagnosis , you feel like you are being experimented on or that one drug should do .
But sometimes , these extra medications aren't to treat the GCA , or your main condition , but they are given to address other types of Pain from Nerves or Muscles that might be being triggered by the Primary Illness , or another condition you have alongside it.
Taking these Medications , even in the short term , can do two things , help establish if you have another Pain Condition going on , or , help reduce the resistance of your Primary Condition to current treatment if another cause of Pain is causing you extra tension and causing more inflammation.
A lot of people are given AmyT during PMR or GCA , as a Nerve relaxant and to help Insomnia , controlling Nerve Pain and improving Sleep . By reducing the Body Tension and Pain it triggers it can help you control flares in inflammation from a different pathway. Carbamazepine is also used as a Nerve Pain Medication for similar reasons .
It feels like , and is, a horrible way to achieve a result as a Patient , but sometimes taking these additional medications will help speed up a diagnosis.
If they don't work , they tick extra boxes in favour of a inflammatory condition alone.
If there is a good response , it can show that another issues needs treating too .
If you aren't responding , or feel intolerant , you can tell the Doctor and stop .
Whatever happens , you will have a set of results to tell them when you return.
Have a think over the weekend , if you feel you want to try their suggestion on Monday you can always ring the Consultants Secretary and tell them you are willing to try their recommendation and ask for them to send your GP a letter to prescribe them for you or wait until the appointment and choose to try them then if necessary.
Hopefully , the tests will convince them and things will be resolved by next week.
Thank you for your reply, what you are saying makes a lot of sense. Iam pleased I get to see the same person & that he has a special interest in GCA .
I understand the reason for the meds but I sleep well & even have naps in the day. Im very sensitive to medication in general, i have had Amitriptyline before & i couldn't function due to sedation so ontop of my fatigue Im worried I'll be bed bound 😟
I wasnt keen to start Carbamazepine to treat TNT as he had no basis to give me a diagnosis on a whim. My next appt is not far its Wed next week so I felt I could wait till the results & then discuss it further
Oh , if you know you haven't tolerated a drug before you never let them try to convince you to try again , you were spot on there . I can't tolerate AmyT myself , didn't help me sleep it made my palpitations worse which kept me awake , that can be a side effect.
The Carb is used for lots of conditions as a Nerve Pain relaxant , so it may be of help but you have to feel confident to try anything at the end of the day as nothing works as it should if you are Anxious about it , Anxiety adds even more Tension .
I hope they sort you out next week , the wait is a curse xxx
Not surprised you're stressed we all would be. Wondering why they didn't do a biopsy in the first place. I thought if GCA was present and things didn't improve with high doses of Pred that would have been taken as a given ? I'm now wondering if Vasculitis is more of a culprit for many rather than PMR. Many of the symptoms like fatigue and fever etc, and not responding to high doses of Pred surely a diagnoses of vasculitis should be made. It's always worth researching this for yourself Tooyoung1. Google symptoms to see if they're the same as you're experiencing.
Good wishes and hope things get sorted for you soon
I like you would not want to take any other medication at this point. Time to relax, try not to stress out and cross fingers the next guy you see will actually know what he's talking about.
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Why GCA went haywire?... Today I was diagnosed with Parkinson's Disease~
Dosage upped today and told I must take Fosamax.
MRI today.. just curious 
What my rheumy said yesterday - you may not like this!
