Good evening gentle people. I've been diagnosed with PMR for 6 months and have just been diagnosed with GCA. My GP is doing a sterling job but basically this is all new to him (and me). So do I increase my Prednisolone? I'm currently 8mg and he (well, we both) would rather not increase it as I've got this far, but what is the general trend? What is the next step? Thank you!
Welcome to the club, Mark, the question is: How do you feel? That has to be the indicator of whether you change it....
Thanks Helen. It's bearable so I guess that does answer my question. I'll see how it goes. Thank you.
Marklvan, what type of GCA is this eg, TA and what symptoms did you have, and how were you diagnosed? Regards, tina
I have not been diagnosed with GCA but what I read in the forums indicates that medrol is usually prescribed at much higher doses than you are taking. Have you been on higher doses and moved down to 8mg? And over what period of time?
Yes, I have been on a higher dose but dropped to 9mg over 4 months.
Hi,
I am very new to pmr and forum, can't really advise.
Just wanted to show support by replying.
Takecare
Julia
Thanks Julia. Appreciated
I think you need the advice of one of the experts on here. I am just over a year down the line but my understanding is that the steroids are upped quite a bit to prevent loss of sight. If you have any sign of eye problems then you need to go to your nearest A&E to be checked out and advised. How was the GCA diagnosed? Did you have symptoms which indicated this?
Like others, I wonder how was the diagnosis was made. Did you have a biopsy? Did you have visual symptoms?
It sounds like you and your physician are focused on staying at a low dose of prednisone. Remember, prednisone is not the enemy, it is your friend! OK, not the nicest friend you might have, but one that makes your life better so you put up with the things you do not like so much.
If you have inflammation in the temporal arteries, which is usually what GCA means, there is a risk that the blood flow to the retina could be interupted. If this happens, it is like a stroke- the tissue is damaged and does not recover. Since the tissue in question allows you to see, this results in permanent blindness. The first sign is a loss of vision in all or part of the visual field- if an injection of high dose prednisone if given within an hour, the sight may return.
When my doctor was a resident, he saw this happen to someone, so he is very wary of allowing temporal arteritis to continue. It seems that most doctors treat this with a much higher dose than 8 mg to stamp out the inflammation. Not everyone with GCA goes blind, of course, but most doctors accept the downside of a short-term course of high-dose prednisone to avoid even a low to moderate risk of permanent loss of vision.
If GCA is new to your doctor, it may be time for him to consult with someone else. The stakes are really pretty high!
Ithink you posted on Healthunlocked also? The advice I read there is really good. As Snapperblue says you definitely must follow up asap. The headaches are a warning. At the first sign of any visual disturbance head to the emergency department. GCA is treated as a medical emergency as serious as a stroke or heart attack.
Have you had a temporal biopsy? If it is confirmed that you have GCA, from what I have read, you MUST increase Pred immediately to avoid blindness. Im new to PMR also but I think this requires urgent action.
Sorry for your diagnosis. PMR is horrible enough!
Hi Mark,
Like the others are saying, we really need more information about how you got to where you are now before we can comment.
Hi Mark, How was the GCA diagnosed? I was diagnosed with PMR/GCA twelve months ago. The starting dose I was given was 50 mg dropping to 40 after a few weeks, then 35 and so on. I am now at 8mg. The diagnosis was made purely on my symptoms as I'm one of the odd bods whose blood tests always come back clear. Because I responded to the prednisolone rapidly and symptoms were clearly controlled I was not referred to a rheumy and like you my GP and I have tackled this together. The dose of steroid that is right for the patient, is the dose which is high enough to deal with the inflammation that is causing the trouble. If you have symptoms of GCA you should be on a higher dose than you are currently. If you are showing symptoms you need to get back to your doctor asap and discuss this further. If he does not realise the significant dangers associated with GCA he must refer you on to a specialost who does. GCA is not to be messed with, it carries signiificant risk to eye sight if it is affecting the temporal artery. Steroids are wonderful drugs, they save lives, pain, sight! And you won't be on them at high doses for ever. Embrace them as an ally. It's important you keep that inflammation under control.
Thank you. Yes I did. Apologies. I now appreciate that there is a lot of crossover
Thank you everyone for your comments and advice. They are all very helpful and I feel less alone. It seems from the dicussion that it's early days for a "confirmed" diagnosis of GCA, I was perhaps clutching at straws.
I was diagnosed with PMR 4 months ago, prescribed 15mg Prednesolone and gradually come down to 9mg. As far as I am concerned my PMR is under control. Last week I was rushed to hospital with Pancreatitis and the focus there was very much on gal stones. My high temperature and headaches were disregarded and the search for gal stones continued but was ultimately unfruitful. I dislike co-incidences and felt that there was a more "common" element at play and suggested to my (GP) Doctor about GCA which he agreed was more likely. I've had an ESR test today and need to wait a week for the results. There is no visible sign of GCA, no biopsy, just the headaches (continuing) and temperature (now normal).
I think that I need to be patient and wait, but if I get any slight sight issues I will go to straight to A&E as you all have advised.
Thank you all. It's been very helpful. You are all amazing. Thanks.
Hi Mark - I'm copying my post from the other forum for completeness - so many people read these forums for advice it would be wrong not to.
If you have been diagnosed with possible GCA you MUST be referred as an emergency to a rheumatologist - a GP is rarely either qualified or capable in the long term of managing GCA. For one thing, an increase in ESR, headache and feeling rubbish are not really enough to make that sort of decision and if he is pretty sure - you wouldn't be asking this question. If the probability is that you have GCA you MUST be on a MUCH higher dose of pred to protect your vision - and your GP should be aware of that fact. If he isn't - he's not capable, however nice he may be.
The potential in GCA is for the blood supply to the optic nerve to be affected. It can either be a reduction in flow over a long period or it can be a sudden total blockage if the artery concerned becomes too inflamed, the lumen (the middle of the artery) reduced by swelling and suddenly it blocks: it is the same sort of concept as in angina and in a heart attack or stroke. GCA has the potential to cause a "stroke" affecting the optic nerve - and the possibility of irreversible blindness if the optic nerve is so badly damaged it dies. Even longterm reduced flow can cause damage. The inflammation rarely resolves on its own so the risk is the damage will continue accruing.
You've been given one link, here is a link to another from a group in the UK with one of the top PMR/GCA experts as co-author, aimed at GPs to aid them in diagnosing and managing PMR (listed in this post as Bristol paper):
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
My own expectation under the circumstances would be that you should have an emergency appointment with your GP, who will call the rheumatology department and request an emergency consultation, telling them he is sending you to A&E. He would write a letter outlining the clinical history, press it in your sweaty little paw and send you off. That is the procedure my optician adopted in Scotland - he didn't even wait to refer via a GP appointment, it involves delay. It is no use the GP requesting and "urgent" appointment - that just means you should be seen in weeks not months - even several days is a risk.
None of us wants to raise our dose of pred, it has unpleasant side effects - but they are rarely worse than the ultimate side effect of GCA. If you have ANY visual signs at all, please don't wait any longer, not even to see your GP, but go to A&E and be insistent about seeing a consultant - not a first or second year qualified doctor who has probably never seen a case before.
I'm sorry to sound dramatic - but it can be a dramatic disease. You wouldn't ask these questions with a heart attack - and neither would the GP, he'd dial 999 and send you to hospital.
Not as much as you'd think but yes, several of us participate in all the forums! But the rest of the crowd are different!
No apologies - we do this all the time, I just wanted others reading this to know there was another place with information on it!
I've had GCA for seven years - the initial horribly painful headaches, stiff neck, jaw pain and an 86 SED when I usually run between 2 and 4. I was put on 60 mg pred and had a biopsy the following morning which was positive. I don't think you would have a positive biopsy even if you had GCA due to the pred you've been taking. I've had 4 flares and even needed 80 mg pred this last time not to mention that I developed PMR when I was off the pred about 5 years ago. It doesn't sound like you have GCA but please don't take a chance and have this checked out more. Best of luck, Jan