Daily Mail

[Dovelady]

There is an article about GCA in today's Daily Mail online. Spread the word.

[Celtic PMRGCAuk volunteer]

Thank you Dovelady, I have just read it after hubby woke me up to tell me about it! Here's the link:

dailymail.co.uk/health/arti...

Hats off to the Daily Mail for once again highlighting GCA and PMR. Just wish someone in the NHS would act so that no-one else has to suffer loss of sight like Sue Chandler and those who post here who are also affected.

[PatMat in reply to Celtic]

It's a good, clear article - delighted to see something in print.

[DorsetLady PMRGCAuk volunteer in reply to Celtic]

hi Celtic,

As a long time member of this forum you may have guessed who it is. Guilty I'm afraid! Have had lots of positive feedback, which is what my aim was. Am speaking to local paper tomorrow, so may get 2 days of highlighting PMR/GCA and it's problems, before it becomes the following days fish & chips wrapping!

[Dovelady in reply to DorsetLady]

Well done Dorset Lady, the article was well written and really informative and if it saves just one persons sight it's done a great job. Maybe a quick email to BBC Breakfast time while it's hot and current. They are always looking for something to make a change from just election stuff. Thanks for getting the word out, I recently joined the St Andrews University Medical School team of expert patients to spread the word too.

[Celtic PMRGCAuk volunteer in reply to DorsetLady]

Hi Sue

I thought it might be you and I was waiting for you to post! Big thanks to you for drawing attention to this sorry state of affairs - I'm just so sorry that you and others have had to suffer loss of sight because of non-diagnosis Your whole story is so very similar to mine in the battle for a diagnosis (you may have read the small extract about me in Roger Graef's article in the Mail last November?). I just don't know who was watching over me but I am so blessed that my vision, though affected, was not lost.

The forums are a wonderful way of getting the message across - look how many people whose sight has been saved because we've pointed them in the direction of A&E. I always wonder how many people are out there with symptoms but without internet connection who may be at risk - Press articles like your's can only help to reduce that risk.

Members of my support group are taking copies of the article in to their surgeries, and I am awaiting a call back from my local MP.

Stay well, Sue.

[DorsetLady PMRGCAuk volunteer in reply to Celtic]

Hi,

Thanks for your kind words, and yes did read about you in earlier article.

I know I always bang on about looking after eye sight in my responses to posts, and I'm sure people get fed up with me sometimes, but I make no apologies for doing that, nor will I stop being adamant about getting another opinion if someone is not happy with their doctor.

It's not that I don't trust doctors or try to belittle them, but they do miss things sometimes, and the effect of that can be life changing.

As I said before, I shall always be enternally grateful to Ophthamologist who diagnosed me in time to save other eye.

Nuff said! DL

[PMRpro Ambassador in reply to DorsetLady]

When you bang on about it, it has the backing of personal experience - I bang on about it too but my knowledge remains theoretical (and long may that continue).

On another forum in the last couple of days an American chap said something to the effect that he thinks it is the end of the world that he had 2 months of pain and stiffness before PMR was identified. I had it for 5 years. It was rotten - but it is the driving force behind the hours I spend a day on these forums and I do know that I and Celtic and you (and no doubt others) have probably saved the sight of several people when we begged them to go to A&E because the symptoms they talked about could oh so easily have been GCA (and they were indeed).

For once the DM did a good medical report - most of them are awful - so obviously the GCA guardian angel is looking after us! Wonder who else you can get to do a story? Sky??? I'd love to see you on my breakfast TV...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Hi,

Have spoken to my local paper today, but I guess you don't get that in la bella Italia! My daughter also put it on her facebook page, so hopefully it's gone around parts of NZ as well. In fact she woke me on Tues morning to say a friend from her school days who lives in UK recognised me and had texted her to wish me well!

Will try to make the most of it whilst I can for the good of all!

[PMRpro Ambassador in reply to DorsetLady]

I could if they have a website - lots of local papers do these days. So tell me if they have!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

The reporter said she would send me a copy so I could email to my daughter, so I could do that. Or if not then their web page is dorsetecho.co.uk. Not sure if in Thurs or Friday. Hopefully Thursday before the election takes over everything on Friday.

[PMRpro Ambassador in reply to DorsetLady]

We are in Innsbruck with our camper for OH's research work until Saturday. He was beside himself yesterday when he couldn't get the satellite to work. Big sigh of relief all round when he experimented a bit and discovered the azimuth was wrong (it was my fault of course). So he WILL be able to keep me awake all night on Thursday with Sky and their new digital technology...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

wow, you know how to live.....zzzzzzzz....

[PMRpro Ambassador in reply to DorsetLady]

Doesn't he just...

[Old_Bedfordian in reply to DorsetLady]

I recognised you straight away, and I am so glad you managed to get this article published. Well done, Sue (sorry I mean DorsetLady), and I do hope that the nhs take the trouble to take note. I am to copy this to my GP....can she read...? er... Dave (I mean old_bedfordian!)

[DorsetLady PMRGCAuk volunteer in reply to Old_Bedfordian]

Hi Dave aka OB,

Not down to me really, just volunteered when this forum asked! Something my late hubby, ex Army, always maintained you shouldn't do! But then I never was very good at doing what I was told! Very often stick my head above the parapet, not always wise, but that's an Arian for you! Storm in where others don't.

Don't mind what you call me, have answered to many things in life! Hope you are feeling happier about things and take care. Sue (DL)

[Old_Bedfordian in reply to DorsetLady]

Thanks for this, and I would like to ask you and others a question. Maybe I should post it.

As you know, I am not taking any pred and have a constant TA pain that varies in intensity. The intensity is usually max at 2am to 4am. I am down for a biopsy, but being Bedford and not in the ''fast track'' system, that will take about three months to happen, (my guess).

All my medical advice with exception to this site, is not to worry, keep and eye on it and see. (excuse the puns, but I am quoting here).

My question is: Can the TA pain with GCA vary up and down during the day, and also can it be a gradual process.

I am monitorign it all daily, and am keeping an excell spreadsheet with the max values noted each day.

Really a question for a PMRPRo, I suppose.

I have written letters to the rheumy and GP correcting their mistakes in my med records etc, but they are both on their hols until the 14th May.

Keep smiling, you are a wonderwoman.

Dave

[Hidden in reply to Old_Bedfordian]

Dave, you sound like you made a massive leap from the previous situation! How did you do it? have I missed any updates? So pleased for you re biopsy scheduled!! Well done to you also.

[Old_Bedfordian in reply to Hidden]

It was hard going. So far only a promise but no letter yet. Thanks for your thoughts. Plodding on as always.

[DorsetLady PMRGCAuk volunteer in reply to Old_Bedfordian]

Hi Dave,

Probably would be a good idea to post again, it then stands on its own rather than in someone else's post. You could always refer to your original and use as a follow-on.

My TA/GCA pain was gradual in that it started at back of head (nape) and then progressed over the top and down to my jaw and throat - presumably following the various arteries. Can't recall that it was particularly bad at any time of day, except for the jaw when I was eating. Could only get through about half a sandwich before I had to give up, and as for a proper meal, then forget it! Sue

[Old_Bedfordian in reply to DorsetLady]

Well, the symptoms that you suffered are different. That much is clear. It seems that my lot are never present at the same time. I no longer get the jaw pain, or tongue pain. The scalp is hardly ever, and the temple on the left side is there all the time raising and lowering, but worse at those early morning times. My body is as varied, sometimes I need my walker all the time and others only rarely. It is very strange. I have still not had any eye degradation, that I know of. Waiting patiently (another pun sorry), for the GP and Rheumy to get back to me. Each have their corrections, which are very clear, and according to the PMRpro's are indicative of PMR and GCA, and the only thing that helped was the short dose of pred, which over the five days, cleared all pain. That was a first for me for about seven or eight years. Short lived, though. Plodding on, Sue. Thanks for the extra info. It all helps.

[PMRpro Ambassador in reply to Old_Bedfordian]

I would think so yes - and the level of natural corticosteroid is at its lowest between midnight and 4am so that could lead to an increase in any inflammation.

In Yorkshire the paramedics are being taught about GCA and that if they have any reason to suspect it, it is a medical emergency the same as suspected stroke or heart attack. Whether there is an official fast-track system or not you can be sent to A&E with a letter in your sweaty little paw!

My optician in Scotland did that if a patient appeared with any GCA sort of symptom - and he was doing it 20 years ago. It doesn't NEED an official fast-track system - it needs the door-keepers to be taught better about GCA, symptoms and sequalae. Unfortunately it isn't just the GPs - there are a load of sceptical rheumatologists too.

[Old_Bedfordian in reply to PMRpro]

Hi PMRpro. Thanks for this info. There is a school of thought in my case, that all the symptoms presented could be caused by my spinal spondylosis. The GP is against the pred that is clear, and the rheumy is full into RA during her part time job. All I can do is cope with any pain and monitor things overall. Taking notes etc. Today has been good, low pain in head and moderate mobility. Yesterday was bad, second worse day. Unbelievable that it can vary so much. I am coping well, but the brandy is increasingly being used..... off to bed now as I will be awake at 2am no doubt. Dave

[DeliaGray in reply to DorsetLady]

DL, thank you for that article. On Monday I saw a new opthamologist after my relapse of last week. By the way after raising the pred to 20 and now 17.5 I am feeling a whole lot better. Since my visit with the opthomologist I am extremely encouraged. I was fed up with the lack of response from my rheumy and really thought that my eyesight had been compromised. This opthamologist was a beautiful very young Asian woman. I could not believe it when she told me that she was very familiar with GCA. The first person in San Francisco who has told me that. She did a very thorough examination of both eyes, and told me that neither optic nerve had been damaged, I had no signs of glaucoma developing, or pressure out of the normal range. She also said that my cataracts are still tiny and have not changed in 7 years. The problem of one eye being constantly half closed she believes is due to inflammation caused by my rheumy reducing the original doses of pred too quickly. I had that start 2 years before diagnosis of pmr and GCA. When I was on 80 mg. at first, it was fully open until the pred was reduced. Then she asked if I would like to see a new rheumy. I jumped at the solution. To see my old one I have driven about 20 mies each way. The new one I see this afternoon for the first time. She is here in San Francisco. I am really excited for this visit, as she told me that it is a lady from Ireland who is extremely knowledgeable about GCA and has seen many cases. I have all kinds of questions ready for her.!!

I have a retired veterinarian friend living in my building who literally saved my life before I was first diagnosed last year. I had lost a load of weight and was not eating. Each night after cooking for his wife he would bring down food to my apartment and actually almost force feed me.! When I told him about my new DR he said "Delia you will be much better off with a woman Dr. These male Drs. here are so full of their testosterone that they cannot get past the fact to hear you.!" Loved it.

I am rambling on, but wanted you to share in my encouragement. Have a good day.

[DorsetLady PMRGCAuk volunteer in reply to DeliaGray]

Hi Delia, so pleased you are feeling much more positive. It does so much for your wellbeing when you feel that you are being listened to by somewhen who really knows about your illness. And is prepared to discuss rather than preach to you or just ignore your thoughts. I feel much more confident with my new GP- he (unusually) listens, discusses and takes my views on board.

Be interesting to hear what your new rheumy has to say! Take care.

[optimist-ok in reply to Celtic]

Thank you for the link. I have forwarded it to my family to read.

[Celtic PMRGCAuk volunteer]

Never think anyone gets fed up with seeing things repeated on this forum as they all will understand that there are always 'newbies' coming on board looking for advice. Like you being grateful to your ophthalmologist, I have a pharmacist to thank for pointing me in the direction of PMRGCA having done some research on her computer. I passed the info to the lead GP at my surgery over the 'phone (the fourth consulted). The first GP I had seen prescribed pills for an allergic reaction; the second prescribed anti-sickness pills to stop the vomiting; the third said he didn't know what was wrong but told me to follow up with the head of practice at my routine appointment the following week. When he eventually saw me, agreeing GCA and adding that I was at risk of losing my eyesight, I told him that I never wanted to see anyone else in the practice again. He's since retired!

[Hidden]

Dovelady, thank you for sharing!

Dorsetlady, that looks wonderful (not what you had gone through). I'll certainly show it to my GP, who would pay more attention than some lengthy "Guidelines" she wouldn't have time for (if I put it bluntly). Well done !!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hi ferntree,

Thanks for that. I just wish I had heard of GCA and this forum before my late diagnosis, perhaps then things wouldn't have happened then as they did. But I didn't, so my aim now is to arise awareness in others who may have similar symptoms but be unsure of what it is. If I can stop just one other person from partially, or wholly, losing their sight then I feel I've done something useful in life.

[Hidden in reply to DorsetLady]

Dorsetlady You're such a wonderful person. you have already helped me today! I have been wondering what info to add when I'm writing to my GP. I knew my GP wouldn't bother reading any lengthy materials. Today, thanks to you, I found exactly what to enclose! For that, I'm truly thankful Have a superb evening and wishing you well xox

[2watsons]

My GP RECONISED PMR as soon as i saw him ,three years later feeling off and when swallowed a stiffness in jaw,wokeup in night no sight in right eye.

Biopsy back on steriods 5mg for ever .

So little seems to be know how and when this can happen i still some days wake up withgreat fear .

AS a lot of you say GP DO NOT ALWAYS reconize it ..

[DorsetLady PMRGCAuk volunteer in reply to 2watsons]

hi 2watsons,

I know we have spoken about this before, and your fear of losing your sight. Very understandable I know, but what I would say is, once you get the specific head pains associated with GCA (tenderness, jaw pain etc..) along with the aching muscles, fatigue etc if you go to doctor and impress upon them the real possibility of sight loss, then it would be a very stupid GP who does nothing. So long as they act in a timely manner then your sight will be okay. My case was extreme, in that GCA nor PMR had been recognised nor treated for 18 months so therefore was much more advanced than in most people.

Once you have been diagnosed with PMR or GCA and are on steroids then the likelihood of oss of sight is hugely diminished. So please, do not let the fear of losing it ruin the rest of your life. I most certainly do not let it spoil mine, there are many things that are more difficult to do with only one eye, but enjoying life is not one!

As you know, I went to NZ over Xmas on my own, stopping over in Singapore on the way out. That experience boosted my self confidence immeasurably, so as far as I'm concerned it's onward and upward! Take care, DL