Help - My friend probably has GCA: Hello Everyone... - PMRGCAuk

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Help - My friend probably has GCA

ValFF53
ValFF53

Hello Everyone

My friend has was commenced on Prednisolone 60mgs on Friday for suspected GCA and has now had three doses.

She still has vision problems. Can the dose be increased further? This whole scenario has been poorly managed (no surprise to you all) so far and her trip to the hospital today resulted in the doctor asking for an ophthalmologist opinion who said that the steroids couldn’t be increased further and that she might go blind!!!

I have told her to contact someone to ask for a Rheumatologist opinion urgently (she sadly lives at the other side of the country to me now).

Thank you

Valerie

33 Replies
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Just a PMR person so it’s not my personal experience but I know people here are or have been on 80

Thank you so much for your prompt reply.

I had thought the same that some had been on 80mgs x

Do put your friend in touch with this site. She will meet a number of people who have GCA and are very knowledgeable about it. I will stick my neck out and say that now she is on the average starting dose for GCA 60 mgs the danger to her eyesight is receding hourly. I would take great exception to an Opthalmologist stating bluntly that “ I may go blind” without any qualifying information. Perhaps she just heard it like that because I imagine she was in a flat spin, as would I be. It would be usual for a GCA patient to be under a Rheumatologist. Where in the country is your friend? Someone maybe able to recommend a particularly engaged one. They are like gold dust but they are out there. She’s lucky to have you batting on her team.

Thank you for your prompt reply. I’ve already mentioned this wonderful forum but she is not feeling well enough to join yet.

She lives near Birkenhead/Liverpool x

PMRpro
PMRproAmbassador in reply to ValFF53

There is a NW of England charity

pmrgcasupport.co.uk/

Tell her to contact them and ask for advice.

ValFF53
ValFF53 in reply to PMRpro

Not sure how close she lives to either of those groups but will tell her. Thank you x

PMRpro
PMRproAmbassador

Of course she can have a higher dose - in fact a usual approach for patients with visual problems is 80 or even 100mg and even a 3 day pulse approach at 1000mg in the form of an infusion as it gets there quicker.

emedicine.medscape.com/arti...

There are blue numbers - hover over each to get the reference for the comment.

Where on earth do some of these so-called experts get their ideas? Eye specialists are usually far more aggressive than rheumies so I really am very surprised.

And I would make an official complaint.

Where is your friend?

bribaz
bribaz in reply to PMRpro

I can't understand why there has not been more of a standard agreed procedure for possible GCA before now in this day and age - it is like treatment in this field lags 20 years behind treatment for other diseases

PMRpro
PMRproAmbassador in reply to bribaz

It is next to impossible - everyone is so different and requires different doses of pred for a few different reasons. And it is rare - doing a study is difficult, it is very difficult to gather enough subjects to get a meaningful result.

The American College of Rheumatology and its European equivalent EULAR, who work together, have just issued joint Guidelines. The previous ones were issued by the British Society of Rheumatologists in 2010 - but they can't force doctors to read them. And the doctors continue to make it up as they go along.

But it IS a long way behind. It is a disorder suffered by the elderly, until very recently a population which didn't contribute greatly to the economy. It is probably increasing in incidence as people live longer - and the younger ones are still working. It will change.

bribaz
bribaz in reply to PMRpro

Yes, it is definitely gaining more recognition all the time. I know stats in the UK show GCA affects around just 22 in every 100,000. Average age of 72, but from posts on the site the average age is coming down, and there are a few people only in their 40s starting to be affected now.

I think (even though Fybromyalgia and not PMR) that the news that Lady Gaga has had to cancel her singing tour because of the pain being caused to her by it, will bring a lot of public awareness into the field. If someone well into the spotlight suddenly was mentioned on TV with PMR or GCA that would bring a lot more awareness and publicity to our cause for more recognition and research.

PMRpro
PMRproAmbassador in reply to bribaz

A well-loved member of the Royal family in the UK developed PMR and withdrew from public duties - but nothing was made particularly public which would have been helpful. You have to respect her privacy. Mrs Thatcher is said to have developed PMR one November - but it is said that she had recovered by May. Hmmm - scepticism reigns! But we did comment maybe she had scared it away...

bribaz
bribaz in reply to PMRpro

She was one very powerful lady - whether she was someone either loved or hated - got to admire her grit!

bribaz
bribaz in reply to bribaz

Think it is really good what William & Kate and Harry are doing to raise awareness of illnesses, including mental health - they are a credit to the Royal Family and to the nation in general! The days of sweeping everything under the carpet are on their way out for good.

Thank you again for your prompt reply.

My friend is in the Wirral. Frightening how ill-informed so many doctors are.

She is taking about making a complaint x

Hidden
Hidden

I was in 80mg last week for GCA with no vision issues! I'm on 70 now.

Thank you very much for that. I hope that your progress is as swift as possible x

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Val,

I was started on 80mg ...by an Ophthamologist! He actually diagnosed my GCA, so the one your friend saw wants a swift kick, for saying can’t do more than 60mg and his insensitive comment! Yes we all know you can go blind - I already had, but you need to told in a professional manner.

As PMRpro says 60mg is normal starting dose for GCA without optical problems, 80mg with them (or sometimes more) and she needs to be on that dose for a couple of weeks.

And yes, when she feels up to it..put in a complaint!

Do hope she’s okay, please keep us informed.

ValFF53
ValFF53 in reply to DorsetLady

Hello

Thank you for your reply.

It was you I had in mind when I thought that 60mgs was not the maximum dose.

I am apprehensively waiting to hear back from her hoping that she has been seen by a Rheumatologist who understands GCA today x

bribaz
bribaz in reply to ValFF53

Hi Val,

My case is similar to that of Dorset Lady - visual problem and also in my case had optic nerve inflammation. Had PMR for 5 years, but just put on 60 mgs. Not put on steroid I V drip (opinions seem to vary on the I V drip). Vision loss had occurred by the next day in the eye that was affected. I don't know why they don't go higher with dosage with the impending threat of vision loss that can be so rapid.

Baffles me why there is not a standard agreed procedure right across the board for treatment of GCA (or possible GCA) - It's like a lottery - depends on which hospital you are treated at and also which eye doctor sees you!

peanutann
peanutann in reply to DorsetLady

Do you mind telling me how the Ophamologist diagnosed your GCA and what symptoms? Im making apt with Opthamologist this week...

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to peanutann

Hi,

Short answer - lost sight in right eye

Longer answer - I had been misdisgnosed by GP for 18 months with firstly a frozen shoulder(mainly because left was always worse than right in movement/pain) and age related fatigue! Latterly the pains in my head/neck (tender scalp, jaw claudication, headaches as if a steel band over head down face vertically - not horizontally, NO enlarged or painful temporal artery) were attributed to a trapped nerve from said shoulder.

One evening my right eye started getting blurred from bottom, over the course of next couple of days it progressed upwards (saw GP when about 2/3rd blurred - didn’t know what it was, suggested eye test!) Fourth morning woke up -eye completely blurred - went to A&E - diagnosed!

Ophthamologist could see damage done (see below) , and with that and highish ESR CRP levels diagnosed.

Brief description of AION -

Anterior ischemic optic neuropathy (AION) is a medical condition involving loss of vision caused by damage to the optic nerve as a result of insufficient blood supply (ischemia). This form of ischemic optic neuropathy is generally divided into two types: arteritic AION (or AAION), where the loss of vision is an effect of an inflammatory disease of arteries in the head called temporal arteritis, and non-arteritic AION (abbreviated as NAION, or sometimes simply as AION) due to non-inflammatory disease of small blood vessels.[1]

Hope this helps...and does scare too much, but as you can see GP was on wrong track, and I was completely oblivious of GCA!

peanutann
peanutann in reply to DorsetLady

THank you very much, very informative!!!!!!

What a disgrace, your friend does need to see a Rheumatologist but it is a fact that once on steroids the risk of going blind is eliminated. My source of information is from Professor Dasgupta.

DL had to have the much higher dose as she had permanently lost the sight of one eye and thankfully the treatment saved her good eye.

I occasionally have mild visual disturbance and am nearly 4 years down the line but again I am told I will not now lose my sight! I started on 50mg Prednisolone daily and I had lost the sight of one eye but it wasn't permanent, I didn't go higher and looking back I was so unwell with an illness I'd never heard of that I was so lucky to have the top man, and still have, looking after me. I cannot imagine what it must be like to not have the support. So again your friend needs an urgent referral.

Good luck!

PMRpro
PMRproAmbassador in reply to Telian

Prof D must have been having a bad day - it is not eliminated unless you are on ENOUGH pred.

Telian
Telian in reply to PMRpro

I'll tell him that LOL

PMRpro
PMRproAmbassador in reply to Telian

He is also known to have told someone that since they didn't have a positive biopsy that meant they didn't have GCA - also not accurate! As it turned out, she did have GCA and the aorta was badly affected.

Telian
Telian in reply to PMRpro

That's true also I had a negative biopsy and he told me that I did have GCA on the grounds of positive bloods and ultra sound. It's not that straight forward anyway it's an intricate illness and individuals are diagnosed by several different professionals all have differing opinions/levels of expertise we are seeing, so there's bound to be conflict. I was given this information nearly 4 years ago - it will be interesting to know if research has changed his opinion since then as that is a huge factor in all of this. I shall take it back to him.

ValFF53
ValFF53 in reply to PMRpro

That’s what I thought.

I’m waiting to hear from my friend who is having a temporal biopsy today

That's a most surprising statement from a medic. When I was finally diagnosed with GCA/PMR, admittedly after several fruitless GP consultations and finally after 3 weeks and many tests in hospital, I was immediately given a 500 mg steroid infusion "to zap it in its tracks and ensure eyesight was safe" Consultant's words. That was followed the next day and for several weeks, by a daily dose of 60mg before reducing to 50mg for several weeks and gradual dosage reduction over the next 3 years. We quickly learn on this forum that many in the medical profession are not as well informed about GCA/PMR as many contributors to this site who have carefully researched these illnesses, treatments etc. You will find many posts very helpful for you and your friend. Best wishes t you both.

bribaz
bribaz in reply to dartmoorlass

Wish mine could have been "zapped in its tracks" with that - I might not have had the sight loss as it was still okay the night before and deteriorated a lot by the next morning on just the 60 mgs dose of oral Prednisolone - they should have given me the best possible option of saving the sight in my eye, and I feel as if they didn't - even 80 mgs of Pred would have been better!

GP misdiagnosed my GCA, next doctor was unsure, wanted specialist opinion and I was sent to the diagnostic unit in our local hospital. Diagnosis confirmed, I was put on high prednisone dosage which saved my eye/s.

Even from far-away New Zealand, wish a good outcome for your friend. She's lucky to have you as a friend.

Hello Everyone

Thank you all for your contributions to my post.

My friend understood she was returning to hospital on Monday for a temporal artery biopsy. However, there was a lack of communication and her notes from the previous two days had been mislaid and she was told she had been asked to return for monitoring.

At this visit she was told that they would not carry out the biopsy until her condition was well-controlled and that she would not be referred to a Rheumatologist until confirmation of the diagnosis was received.

My friend felt very reassured by the doctors she saw on Monday and is happy to go along with what they have said. I am concerned about her, though. She said that her eyesight/pain in her eyes have remained stable but not improved, but her scalp is less tender. Should she be expecting more improvement by now?

I look forward to hearing your comments.

Valerie

PMRpro
PMRproAmbassador in reply to ValFF53

Oh dear! I think someone doesn't know what they are talking about...

"At this visit she was told that they would not carry out the biopsy until her condition was well-controlled and that she would not be referred to a Rheumatologist until confirmation of the diagnosis was received."

If she is on pred to control her condition, the result will be that the value of the TAB deteriorates with every day - the pred reduces the inflammation. In the meantime, IF she has GCA the risk of loss of vision remains if she isn't on enough pred. After a couple of weeks at 60mg pred the chances of a positive biopsy are small - and then they may decide it wasn't GCA, reduce her high dose and put her sight at risk again. The TAB is only positive in less than half of cases anyway - it is a rather unreliable gold standard. Ultrasound should also be available somewhere in the NW - that really should be offered.

I am horrified at their decision not to refer her to a rheumatologist immediately. But there is not a lot any of us can do.

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