Confused about GCA diagnosis
Posted , 10 users are following.
Hi
Can anyone give me any advice. After visiting A&E 3 weeks ago with severe pain on right side of my head, I've been told its GCA and I need to have a biopsy (this got cancelled last week and I'm still waiting). I was given a repeat prescription form to hand to my GP, which I did, I picked up my prescription today and he has said I can't possible have GCA with an ESR of 18 and I'm to half my dose of Prednisolone from 30mg to 15mg, I didn't think that you could just reduce the dose that rapidly. I can't see my GP until Friday and don't know what dose to take tomorrow.
Any info or advice would be greatly appreciated.
Thanks
0 likes, 20 replies
EileenH pam33879
Posted
I feel that is quite unprofessional of him to disagree with the diagnosis when he didn't see you originally but having to diagnose from the clinical symptoms alone is what causes the problem - and it is an awful shame that the biopsy was cancelled. It is thought that every week you are on high dose pred reduces the chances of it being positive by about 10% but it is often non-conclusive anyway.
After just a few weeks you should be OK to reduce like that since the new dose is still way above what your body makes naturally. If you didn't have any visual symptoms at the time your sight is probably not at risk, especially since you have had 3 weeks at 30mg. If you do reduce to 15mg tomorrow though and the pain comes back at all I would go back to A&E and ask them for advice - they will have notes there and will be able to either ask the doctor you saw then or a specialist what they think. Did the pain go very quickly with the 30mg pred originally?
MrsO-UK_Surrey pam33879
Posted
It is recommended that temporal artery biopsies should be carried out within a couple of weeks of starting steroids. Any longer and the large cells they are looking for are likely to have resolved due to the high dose steroids. It is possible for the biopsy to produce a negative result but still have GCA, likewise with the ESR blood test. Did they carry out a CRP blood test - that is very often considered to be a more reliable marker of inflammation.
It is possible to reduce Pred fairly quickly within a short time of starting them if the diagnosis is found to be incorrect, but if you do have GCA you will very quickly know as the pain will return. Just remain alert to any problem with your vision and return to A&E immediately if you are concerned.
pam33879 MrsO-UK_Surrey
Posted
Yes the pain was very much better within 48 hours or so.
I went back to the Ambulatory Acute Medical Ward yesterday and asked them about my GP reducing the dose, they were brilliant and arranged for me to see a Reumatologist Consultant who confirmed that I do need to continue the 30mg of steroids and he is arranging a biopsy (he said within 7 days) he also gave me bone protection and stomach protection meds as well, another thing the GP said I did not need!
I hope now to have the biopsy in the next few days and then take it from there.
Did you also feel generally unwell and sort of disinterested in things as well, I'm usually quite a motivated person but do not feel that way at the moment?
Thanks for your help
EileenH pam33879
Posted
Yes - it is common to feel generally unwell with GCA and PMR, sort of as if you have flu. It is a serious illness - don't be fooled just because you can't see anything. It all depends on how many of your blood vessels are involved but you can feel pretty ropey. The pred doesn't help of course.
Get well soon.
MrsO-UK_Surrey pam33879
Posted
I didn't feel "generally unwel", I felt as though I was dying. I'm sorry if that sounds dramatic but I was progressively getting more and more ill with severe head and jaw pain on chewing over almost a month, with three GPs over that time not having a clue what was wrong other than to suggest firstly an allergic reaction to a BP Pill, prescribing antihistamines; secondly when vomiting and sickness joined in the fun, I was prescribed anti-sickness pills, and thirdly just advised to see a fourth GP the following week. I lost a stone in weight in that time. A wonderful pharmacist came to the rescue with suggested GCA, confirmed by the 4th GP, and 40mgs of steroids wokred their magic within hours.
As for you feeling disinterested in things, that isn't at all unusual but unfortunately to be expected due to both the inflammation in your body and side effects from the steroids. Be really kind to yourself, with lots of TLC and rest whilst those steroids do their job.
I wasn't prescribed bone protection meds (the GP thought the rheumy had put me on them and vice versa). I was prescribed a PPI, Omeprazole, for stomach protection but unfortunately it did the opposite, upsetting my bowel, so was switched to Lansoprazole. That caused pain (I'm an awkward patient!) and at the first emergency appointment with my rheumatologist he told me not to take them. I relied on a 'live' probiotic yoghurt daily before the steroids and never had any further problems.
With regard to the bone protection medication, you should really ask for a DEXA scan to find out the present state of your bones - if all is normal now and there is no sign of thinning, then you may not need to take the bone protection meds. If you do already show signs of osteoporosis or osteopenia bone protection may be necessary, but you need to be aware that if they are bisphosphonates, they can bring their own quite serious problems and, in any case, current advice is that they must not be taken for more than five years. I had a private DEXA scan shortly following diagnosis and all was normal. A repeat scan a couple of years later showed very slight change into the osteopenia range (the stage before osteoporosis) but not in need of medication. My latest scan a year or so after discontinuing steroids actually saw a slight improvement.
I'm sorry for a bit of a lengthy reply but hopefully it will prove helpful. Good luck with the biopsy.
snapperblue pam33879
Posted
I have had a lot of trouble with fatigue, inability to concentrate, and lack of motivation in the last few months, expecially after reducing from a high dose of prednisone given to me when it looked like I might have GCA. After about 3 weeks on 15 mg. things seem to be getting better. I don't expect to feel frisky as long as the PMR is with me, but I hope not to feel like collapsing all the time!
Judygirl pam33879
Posted
I have makes the PMR worse. I have two ophthalmologist
who are very iffy about what they are doing, I even 'phoned
the manufacturer of the drug which is injected into my eye(s)
and they can explain what has happened but not why. It's
very frustrating as I'm all for prevention rather than cure.
We must use our own observations I suppose and try to
piece things together for nothing is finite.
doreen25667 pam33879
Posted
snapperblue doreen25667
Posted
Not everyone has the same degree or type of pain, but it would help if you'd describe where and how you hurt. Or, still better, call your doctor!
EileenH doreen25667
Posted
And what superb service you had, both from GP and rheumy. You were lucky, most GPs don't recognise GCA as it is relatively rare and they may not have come across it before. That is how a biopsy should be done but it needs access to a surgeon who does them regularly and a time slot that matches.
snapperblue pam33879
Posted
My doctors (in the US) treated my iffy but suggestive GCA signs as an emergency. (I'd been diagnosed a few weeks before with PMR.) I went on high prednisone the day I saw the rheumatologist who was concerned for my sight. My ophthalmologist scheduled an "urgent" appointment at 8 the next morning. She thought it was not GCA. The temporal artery biopsy was scheduled as "urgent" at 7:30 the following morning (so I would not have been on high prednisone long enough to invalidate the test).
Unless someone has decided that the kind of pain you had was not the kind that suggests arteritis in the temporal artery (so there was never really any indication you had GCA), I'd stay on the higher dose if you can't call your GP for advice. I am strongly in the "better safe than sorry" camp when deciding between a few more days on high prednisone versus risking vision loss. (Not a long-term high dose, but until the diagnosis is clear.)
Susanne_M_UK pam33879
Posted
Sorry to hear you've joined the GCA club. I was diagnosed early December, following 4-5 weeks of feeling unwell all the time interspersed with certain days when I thought I had flu. I also had pain on right side of scalp, blocked painful ear and pain behind my eyes. Due to lack of experience of GP, she ignored these signs although I had had PMR for 5 years, which by then was in remission.
Luckily, I was due a 6-month check up with a new rheumatologist who asked for a blood test. Biopsy was not done although rheumatologist had asked GP to arrange, - yet another major error.
I'm replying to you to warn you to look out for yourself. I've had/am having awful problems with my GP (this is the second GP I have been to in my practice) who doesn't understand GCA and appears to be in a power battle with my rheumatologist. So, don't take your GPs advice as gospel.
This group is very supportive and there are some very knowledgeable people here, especially MrsO and Eileen, so do come back for more advice and support when you need it. Besides, it's also good to know that you are amongst fellow sufferers!
Have you had the biopsy by now?
pam33879 Susanne_M_UK
Posted
I am due to have the biopsy tomorrow and hopefully then all will become a bit clearer, I have a schedule for reducing the pred from my reumatologist which will be 5mg less each week for the next 4 weeks and then he said we can re-evaluate (i am currently on 30mg per day) and do still have a slightly uncomfortable feeleing at my temple but I understand that the pain doesn't completely go? I also feel pretty tired but am sleeping reasonably well so that's a bonus.
Susanne_M_UK pam33879
Posted
I started at 40mg mid December and am currently on 25mg and even that was very likely too quick. I was completely exhausted at the higher levels and had real problems thinking straight and concentrating. That hasn't disappeared yet, but is certainly better. I'm currently signed off work due to a lung infection, but did go back to work for 3 weeks on a gradual return before I caught the lung infection.
I always have an "uncomfortable" feeling in my temples, a sort of pressure.
Wishing you well for tomorrow.
EileenH pam33879
Posted
If you go to this thread,
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
the second to last link in the first post is to a paper about managing PMR and GCA. On page 5 or 6 there is a recommended scheme for the first 6 months of managing GCA - they start at 60mg and reduce by 10mg per month so it takes 5 months to get to 20mg. Even then, they sometimes have flares.
pam33879 Susanne_M_UK
Posted
Susanne_M_UK pam33879
Posted
Goodness, that must have been awful, especially no water. Glad you are over it now.
I'm sure you will be given appointment with rheumy. As you no doubt know, the biopsy is not always conclusive and diagnosis may be based on symptoms and bloodtests.
I've nothing but praise too do the nursing staff and doctors at my local hospital, having spent 3 nights there last week (severe chest infection).
Hope you are feeling ok and get some rest.
EileenH pam33879
Posted
So pleased to hear it is done and dusted despite the long wait - but no wonder there are complaints about patients being dehydrated!