I've just had a telephone consultation with my GP who informed me that the biopsy is negative . Good news! Apparently I don't have GCA (despite still have the symptoms I presented with 6 weeks ago)
On no account can the prednisolone dose be increased back to 60mg (which got rid of said symptoms) because that's the treatment dose for GCA and as the biopsy shows I don't have GCA.
It seems I have to manage the headache fatigue, eye discomfort etc as best I can until she can sort out a referral to rheumatology for me.
It's lucky that I'm feeling so wiped out right now or I might have stormed the health centre.
In the event I've retreated to the sofa for a rant, nap and a bit of a cry......
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Linda3009
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A negative biopsy DOES NOT MEAN IT ISN'T GCA. It means they didn't find what they are looking for.
Even the video DL posted earlier mentions that specifically.
Since it is Friday - isn't it always - all you can do is call 111 and ask to speak to the duty doctor and if that doesn't work, go to A&E and hope there is someone sensible there.
I live in Macclesfield. My local rheumatology Dept are short staffed so not taking new referrals.
Nearest clinic is in Stockport. The letter to the GP was sent on 27th June but as I said in the post, she misread it and assumed that the consultant was making the new referral
I agree (mostly from what I've learned on here) that a negative biopsy, particularly following 3 weeks of high dose steroid, means nothing.
What I don't really understand is how the symptoms I presented with initially can now be so easily disregarded.
Although as the GP said, " it's a mercy that you won't now lose your sight" 😠
I'm getting really sick and tired of hearing about these issues with referrals to Rheumatology.
Your the third person I know of in the last two months ( for different conditions ) that has been told their Rheumatology Departments have just stopped taking any new referrals without offering other options or Emergency Help and advice .
It is as though they think that just because they can't fit you in that your illness will just listen to their excuse and decide to stop and you can delay being sick until they have the time to fit you in.
It is entirely against the rules and guidelines of the NHS to just do that , even my useless GP knows that , and has complained and requested a referral again for a number of her patients after people have received this sort of letter or advice by phone.
Getting back to the GP and sharing the facts about how a negative biopsy after already being on steroids happens and does not mean no GCA.
You need them to really understand how disabling your symptoms are at present and ask them to urgently advocate on your behalf by phone with whichever Rheumatologist you can get access to quickly and organise an appointment as soon as possible .
If they don't , post back , we can give you tips to get the ball rolling by the road of Complaints.
So sorry , the last thing we all need when trying to get better is to because to feel more stress from the people who are meant to make us well.
Rest this weekend and try and be as calm and as organised as you can when you try again next week.
The tactic at our local hospital seems to be repeated cancellation of appointments , some people having had two or three successive cancellations. Do they think this will make the illness go away for lack of interest? As my rheumatologist is pretty useless anyway I'm trying to save enough to be able to get a private appointment if I need it.
Oh yes , they have been doing that pretty much routinely , a bit like an unwritten guideline in just about every hospital for years.
It helps them to keep within the Government guidelines of how many weeks / months they have to get your appointment to see someone by. I don't know that many people that have received an appointment without having at least one cancellation after it , including for surgeries.
Then of course they did do the appointments when you get in by the right time but you see somebody far more junior than you require , whom then hums and writes some quick notes for ten minutes before informing you they want you to see someone more Senior , allowing them often to do very little but an x-ray , tick the waiting time box from the Government and buy themselves four to six months more time.
I don't know wether they think we don't know what's going but I think everybody has started to accept and expect it now , it's this British thing of not wanting to complain or queueing .
This idea that they can just request for you to try for a referral at another date and refusing new patients is new , I thought it was just Wales but clearly it's spreading in England now too.
I also received a letter from Opthamology last week ( when my new appointment date should have arrived ) explaining a new queueing system meaning only the patients with most urgent surgical need will now get appointments in three months or six , if I need help to use Eye Emergency !!!
My Opthamologist will go mad , I have a feeling I won't be waiting six months for my follow up when I enquire on an approximate new date to her Secretary.
Recurring GCA flares and uvietis apparently not a big enough threat to the eyes then!
What dose are you taking? I had a negative biopsy but was advised to stay on 20 pred until the next rheumatologist appointment. 20 didn’t get rid of all the pain but certainly the head was better
Do exactly what PMRpro says and if and when you end up in A&E make sure you have someone with you and if necessary insist on seeing the Consultant who will be on duty for the A&E section.
CONCLUSIONS: 19% of patients with negative temporal artery biopsies were eventually diagnosed as GCA. Older age, headache and thrombocytosis were more common in that group. These features may help in the diagnostic approach in cases with negative biopsies.m
Sorry to tell you and your doctor this, but a negative biopsy for GCA doesn't mean you don't have GCA. It only means they found none in the sample they took.
Don’t cry. I have done it lots and it doesn’t help. Lying in A and E waiting for an admission. So I empathise. See the rheumatologist. Completely different from the GP. You clearly have something and need someone who can put the puzzle together. It took years for me as I didn’t push for it. Saw range of docs for
Different symptoms. Pursue it and be strong. We have each other. Keep on moving. I wish you strength and fortitude X
My Rheumatology department is ,up to capacity , in Peterborough. My endocrinologist said I should be seen 6 monthly. He wrote to Rheumy for an appointment. I now havnt been seen for 15 month. Fortunately I am 3 years into GCA as and down to 3 mg but having a lot of muscle pain. I rang the hospital and they said a consultant would review my file in August and decide what do ( without seeing me ???). However I do know the hospital has huge vacancies and are really struggling. The problems go higher than the local service unfortunately. As patients we are just left to push for ourselves.
My ultrasound and temporal biopsy were both negative and the Rheumy said they were unhelpful in about 50% of cases. Her diagnosis is “probable GCA”. I had the same symptoms as you. Your GP is wrong to make the supposition that because your result is negative you don’t have GCA. Disgraceful.
I agree with others who said a negative biopsy does not rule out GCA. I hope your GP has you continuing prednisone until a more skilled diagnostician is found.
Can you go back to your GP to see if you can get some relief? When I was diagnosed with PMR I chose to stay with GP. We have very good "working" relationship Yesterday my cardiologist said he was glad I made this decision, as he considers the GP a good MD. GP has had a few patients with PMR, willing to learn and keeps up on medical research.
Don’t be sorry Linda and don’t cry alone. I would have cried when your GP said what she said to you. She can refer you instantly not ‘when she can sort it out’! Ring the surgery and ask if it’s been done and if it hasn’t ask to see another GP as urgent.
I had a negative biopsy after 3 days on 50 mg pred but positive Ultrasound - my Rheumie totally accepted that and confirmed GCA and subsequently PMR. It’s a known fact that negative biopsies don’t mean you don’t have GCA. Sounds as if I was lucky as we have a fast track system and I was seen by a Rheumie within 24 hours of referral.
Aren’t you on any pred at all now? Did you ask her how you we’re supposed to manage it yourself and what if she was wrong? You haven’t got those symptoms for nothing.
If all else fails and you are so unwell go to A&E without fail.
I had a negative biopsy but the doc says I do have GCA as I had the classic jaw pain and dreadful headaches. Ask for a second opinion and take note of everything PMRpro says as she is 100% right.
I'm still taking 50mg pred, as per consultant / GP instructions, but am considering increasing it to 60mg as that's the dose that removed my symptoms (coincidentally it's the recognised treatment dose for GCA!)
I'm going to get back on the case re the "urgent" referral tomorrow
It's not easy to take the fight to them when you're exhausted though.
Just remember A & E! I had all the symptoms of GCA and the hospital took me seriously. Thank goodness. They put me on 60 mgs pred., Took bloods and eventually sent me home at 3 am. BUT I had the required medication. 18 months later I had the biopsy which was clear. I worked with eyes for 15 years, both ophthalmology and rheumatology are struggling to recruit so just bowl up at A & E (preferably at larger hospitals). Sadly since then I have been diagnosed with several other life changing conditions but on the plus side I have blood tests every two weeks and see my wonderful rheumy every three months and body scans every four months - so If in doubt go to A & E! And just think of the repeat offenders who use A & E every Friday & Saturday night due to drink and drugs and no one questions them . Good luck everybody.
Oh how I feel for you Linda. I see for the first time someone this afternoon who is part of a rheumys team No name. I have had GCA no biopsy since the end of December. Having a problem coping as well. Too numerous to list the problems plus age and single. Follow the instructions as well as you can.
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