I've been asked to share my story, my journey with GCA starting with my misdiagnosis. I was contacted through an autoimmune registry to take part in a program called Diagnostic Journey. I've checked out the organization and where, why and how it would be published and am satisfied that the purpose is to enhance the diagnosis of GCA in a more timely manner. Actually, if I had been better educated about it, in retrospect, I would have called the doctor months earlier with suspicions of GCA. There were headaches, severe pain down the back of one side of my neck, all things I did not connect until I was living the puzzle. They have even asked if I feel my diagnostic journey is over and I would say no, I don't think it ends. That's why I count on all of you.👩🏽🤝🧑🏼👩🏽🤝🧑🏻👩🏾🤝🧑🏻👩🏾🤝🧑🏿👩🏾🤝👩🏻👩🏾🤝👩🏽👩🏼🤝🧑🏽
I feel that if it benefits one person, it will be well worth it. The Forum was my go-to source after the fact...💗
Just want to add.....NOVA SCOTIA STRONG ~!
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Grammy80
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I agree Grammy, it only has to help 1 patient or Dr to dx GCA in a timely manner to be worth it.😘🌻
You betcha~! It was an eye-opener, no pun intended, to me as I tried to read all my reports from the hospital from last August. I'd forgotten about this one Doctor who had given me pain meds (Vicodin) for my headache. As unschooled as I was I called the specialist because I didn't think I should be taking it and masking symptoms, DUH! It's scary because there are many times because of lack of knowledge or alertness...you can't be an advocate for yourself. 🌷🌺💗
I support any venture of this kind especially in view of my own experiences.
I noticed the first symptoms of GCA in March 2017 and the first symptoms of PMR the following month. As I found out later, my GP wasn't aware of GCA and didn't recognise the very obvious symptoms of PMR. I was finally diagnosed on 31st July that year. During those 4 months I could have lost my sight like many others whose GPs were ignorant of the condition.
So true!!! and my motivation. I'd never heard of GCA but was amazed at how many Doctors were standing in the shade. The very fact that immediate treatment can save your vision is astonishing. Wouldn't it be wonderful if all diseases were like that...that a Doctor could diagnose someone and save them from life-altering tragedy. GCA is a b_____, but it is manageable, blindness is not.
I can never understand why they are so ignorant of these diseases....completely puzzles me. You would think once a doctor or consultant gets either GCA or PMR they would make a fuss about it!!.......where`s the training??
Academic papers are just lots of people's personal stories, but I get your point. I would rather know what happened with 200 people and the patterns in their stories.
I just spent some time this morning re-reading my reports from the hospital ER (A&E) until I couldn't see. So classic, so many red flags....my story is so much like so many other stories...it is like we keep presenting and hoping someone will diagnose us!! xo
I'll let you know...but I don't see why not. They gave me some 'bullet point' to establish a timeline and they will be contacting me next week to begin. I'll sure let you know. What has aroused my curiosity is that about 38 years ago I had what was called a 'drug-induced lupus' for about 8 or 10 months before it went into remission. I've also read there is an autoimmune induced type of epilepsy....which may explain the seizures I had as a teen that Children' s Hospital in Boston could never find a reason for. ??? 🙄🙄
Crikey. My sister was born with spots on her legs which they thought was chicken pox and was a 'fainter'. When she meat died from a bee sting a few years ago , they determined she has mastocytosis and has had it since birth. She is still having bee sting therapy for next god knows how long. Last bee sting was ok...needed epi pen but no ambulance. Just went and get checked. But, I will get to the point, just shows we can have immune system issues that pop up from birth if people looked at patterns more. 🌻👍
It will be an interesting exercise. Particularly if it was linked with significant life events. See how you feel when you’ve done it. I would definitely have been interested in doing it. Like Poopadoopy I like to see the patterns and links.
....and it was. I don't think I'd ever been at a higher stress level in my life preceding the onset of all the symptoms, the outward manifestations. I'm glad I saw your note, Jane because I'm going to go back to the draft I've been working on and put that right at the top~!
Yes definitely put that in . My medical biography would be compatible with my periods of high stress - especially autoimmune disorders. You can’t really separate the mental and the physical and spiritual.
My tiny front garden is giving me pleasure as the Lilac is out and the scent is wonderful. We’ve planted roses for the passers by on their lonely missions. My back yard is a joy with my little Laurel tree bursting with goldfinches making a family. We had 14 last year and it is a small but bushy tree. It is around 2 am here. I don’t know what woke me up. However, it is always worth it because my Australian families post new photos and bits of film. Love Jane xx
I think that the airline industry is going to be a very different beast after this is over. The green revolution and all that. I think I am going to have to consider coming out there as a dependent grandma & grandad as the kids suggest and if you’ll have me. If we survive of course. 😐
It is after midnight here in Maine and I'm just going to bed. You wrote your Note 3 hours ago. You're the garden sounds lovely, I can just smell the lilacs. I have a feeder for the finches and sometimes there are 6 or 8 on there. I can't imagine how heavenly it would be to watch a nest and see them hatch! Good spirits there around your place and roses for the passers-by. I love that.😘😴😴❤
We have bluetits nesting in one of the boxes my OH has made....they are very busy.....can hear far more birds in the garden now because it is so quiet!......lovely.....
That sounds like the opening for a good novel. It’s after midnight here in Maine...........
I even see them teaching their fledglings how to tackle a sunflower seed in a feeder. Their song is so sweet, it’s like having an aviary only better.
I know we've been in contact over the months Grammy. You're not alone as I was also misdiagnosed and was being treated for osteoarthritis. The pain in my head, and occipital bones was dreadful. I'd never heard of PMR let alone GCA. I'm just so thankful I ended up going private to get diagnosed asap. I'm thinking had my GP recognised my symptoms and started me on steroids back in the Summer of 2019, maybe GCA wouldn't have ensued in Match 2020. If PMR is treated (like it was with my friend) with 40 mg of Prednisone for a year, no GCA would appear. Although I do know that some get GCA without PMR...so what do I know !!
Hi Grammy. I'm hailing from England but I've been in Maine. Lovely state. Anyway, 're GC A, I was also not diagnosed. Had to wait a month to see a gastroenterologist (!?). In the meantime I googled my symptoms (swollen veins in my temples, headache, weight loss) and hey Presto it came up with one diagnosis -GCA. So then I spent weeks thinking I was going to go blind any minute. Scarey. I thought about going back to my doctor to point out the Google diagnosis but felt he would just get defensive etc, so didnt. I did go to my opticians as one day I thought I saw flashing lights and thought it was the start of going blind. They immediately referred me to the eye dept at the hospital where I was seen by a youngish doctor the same day. He asked me if I had made it all up! So then I knew I just had to wait it out. Thank goodness when I eventually saw the gastro man he put me straight on steroids - the relief!! When I felt a bit better i started looking on the web about it and found that it is quite common here for GCA not to be diagnosed and for people to end up blind. I was going to start a campaign about it but funnily enough at the same time I discovered that new guidelines had been sent to all GPs about it, so thought it was not worth the bother. I'm still on steroids which are being reduced very gradually and lately have been feeling a lot better, so there is light at the end of the tunnel. Thanks for bringing this up. It is nice to know there are people out there who are in the same boat.
Sometimes it’s the doctor not the specialism that is special. Were the gastro symptoms linked at all? My doctor was very interested in mine. I had thought it was side effects.
Hi. What gastro symptoms? I didn't have any apart from not wanting to eat and losing weight very quickly. My son rang the GP up and was told that he thought I had cancer and was dying. My poor son! He immediately stopped his v important work and came to stay with me for a fortnight! He couldn't even talk to me about it as the GP had told me nothing of this. I do wonder if he was breaking confidentiality by telling my son this and not me. If he had told me I wouldn't have believed him as I instinctively knew this was nothing to do with my tummy. 're the doctor being "special", I know what you mean. I had always thought this one was a bit barmy but had just put up with it. Luckily they have now closed down so have new doc who is much better. Thanks for your interest.
Hi. Thanks for this. The awful thing was that there was a teeny bit of me that wondered if it WAS in my imagination. Lying in bed for 3 weeks waiting to go blind can do things to you! But looking back I definitely did have those flashes - but I certainly grabbed onto it thinking it would be my salvation from blindness. Ha ha.
I'm so glad you are doing well, Alison! I so thankful for the forum because it gave me the validation I needed to be a stronger advocate for myself. I would think an awareness campaign would always be in order because the doctors themselves are not presented with a great number of people with GCA. So many of us present with headache, facial pain, tenderness, and jaw pain...when there are multitudes in the reception area it is easy to make a 'common' diagnosis instead of digging. So happy you did not lose any sight...that is why I think it is so, so important, that and the risk of strokes.
After some time on the forum, there are way too many of us in the misdiagnosed boat!! Stay mindful and well and don't lose sight of that light at the end of the tunnel. xo
Happy you got to enjoy Maine...all I ever got to see of the UK was Heathrow. 😥My youngest son, wife, and my ONLY grandchild(at the time) lived in Prague for 5 years....this Grammy was there a few times a year.
I was about 9 years old. We lived in VA and drove to Prince Edward Island and went through Maine on the way. We stayed at beautiful places on the edge of lakes etc. Maine stood out to me. And we liked the people. Ahh - happy memories.
Oh, my, what a trip you had from VA to PEI. There are many lakes in Maine and some lovely scenery. I also have found people to be very warm. I just moved to Maine from Indiana in 2016 to be closer to my family in Nova Scotia, which makes me think a lot of Maine. I just had my first trip to PEI two years ago and found it breathtaking.
I hope you take Fran Benson up on her offer because I feel you have a lot to offer with your hopeful attitude. 💖
Yes, it was some trip. Mum and Dad made it into a military operation (they were both from military backgrounds) but not in a bad way. Sorry, what is PEI?
Have joined the charity but would really like to do something to stop anyone else having to go through what I went through. I worry that all the GPs who got the new guidelines just binned them without reading them, as they must get hundreds of notifications about different things every day. I wondered about writing to every doctor in Shropshire (where I live) about it.
That's the nature of real life in drs surgeries I am afraid. I tried lots of education of my Dr and rheumy nurse etc.
I volunteered for medical students to visit me at home to discuss the mental and physical issues that arise from chronic illness.
We are all ultra concerned about the people that slip through the net with GCA especially, but all you can do without millions in donations or sponsorship is do targeted PR. In the meantime I am just grateful for the group of people who worked extremely hard to even get this charity and forum up and running. Lots of people of does lots of things to help raise the profile of GCA and PMR....no one sat on their bums! Not unless the sit down or fall down feeling took them by surprise!🤣😂🤣
Hi Alison, very glad to hear that you got your diagnosis in time although sorry to hear that it took so long - your optician was right and the hospital should have taken that seriously.
I see from your bio that you would like to help in some way? First of all, have you joined the charity? It's the best way to support our work - we provide this forum for everyone on HealthUnlocked, info packs, campaign, provide a helpline and support groups etc. We also produce a members' newsletter, due out this week, which has details of the new GCA guidelines. We've been very involved in the creation of the new guidelines but there is still work to be done - which we mention in the newsletter although there will be more details coming in next editions.
Hi Fran and thank you for this. I wondered if you had any advice about what I could do to stop anyone else having to experience what I did? Is it a question of drip, drip or is there more we could do?
Fran might have better info but from my view as a patient and member....
There have been several newspaper articles over the years, national and international research groups on PMR GCA and certain rheumies that publish to get the message out there. We have seen sufferers from Royality to TV stars to journalist(s) talk about their experience or have their condition reported. I understand they had an episode on Doc Martin re GCA where he did a biopsy on a kitchen table (never watched it).
Drives, research, publicity and training drs and some rheumies takes money....and lots of it. One day I went on rare disease websites and just put various symptoms in Google. There were 10s if not 100s of conditions I had never heard of. Each one competing for cash and research, some as, or even more life changing or ending than GCA and PMR.
I have a hope that if they expect the workforce to get older, conditions that impact older people might climb up the cash ladder. As that is happening, it seems the age of people getting both conditions is being determined to be as young is 40yrs for PMR (NICE guideline). Still need to get the GCA age downwards, it still seems to be 50yrs in NICE guidelines. But being rare under 50 does not mean unknown.
Historically, in the sociology of health and illness, there is often a cultural and societal lack of will in terms of conditions that effect the elderly and women in the main. Many of the messages on here are related to how difficult it is to get family and friends to understand the mechanism and impact of PMR and GCA, unless the very worst happens in GCA. That's people who see the condition impacting their loved one on a daily basis! Look at all.tbe adverts on TV for raising money for various causes nationally and internationally. How many times do we/people in general put money in to good causes?
So until some serious cash is made available a very hard fought drip, drip, drip is route 1. And you know what happens with drip, drip, drip...eventually there's a gush. You can tell Dr/rheumy about the charity, the research ongoung, copies of research and changes in guidelines, get leaflets up in surgeries, join PMRGCAUk (reminds me my.membership may be due 🤭). You could start here if you have GCA and haven't done so already...
Thanks poopadoopy. Interesting reading and glad lots of research taking place. I was interested to read that one research project has found a link between herpes zoster and GCA. A journalist here in England wrote an article recently about GCA and misdiagnosis and she also maintained that the lack of interest/knowledge was because it was mainly old women who get it.
Hi Alison, it's a continual drip, drip, drip. Our work on the new GCA guidelines (alongside all the other people and drs involved) is a great step forward but as you say it's about getting that message to the people who need it. We had a meeting with Steve Powis Medical Director, NHS a couple of months ago about getting the message out and hired a PR person to help us raise the profile in the media - unfortunately coronavirus has meant that the NHS (and media) is focused on other things for the time being and we decided it was a better use of our money to delay the PR to when it would be more effective. We are working on letters for our members to send to their MPs and health boards and so on. So there is lots of work to be done and we are always so grateful to anyone who is interested in finding out more about how they can help. I'll message you with details if you want to find out more. Fran
Had similar experience with misdiagnosis here in Connecticut. In March 2019 primary said I hv sinus infection and gave me prescription for antibiotics. Took for only 1 week instead of 2 because of terrible headaches since taking. Primary said I must be allergic to antibiotics so then had me take allergy medicine which made headaches worse. Then swollen veins both sides temples, jaw pain. On a Fri night facing weekend of more headaches I walked into the ER. Fabulous doc there who did blood work and mri and said my sedentary rate and cri were dangerously high and I could hv gone blind. Diagnosed by him as Temporal Arteritis (GCA). Put me on 60 g prednisone . Diagnosis confirmed by a bilateral biopsy done on my temporal arteries couple wks later. Seeing a good rheumatologist here since then, tapering prednisone for a year. Having problems getting below 7 1/2 with recurring burning headaches in forehead and top of head. Then go back up to 10/12 where I am now because of bad relapse couple wks ago. Will keep going down again and hopefully get below 7 1/2! My hero in all this is my ER doc! Needless to say, I’ve gotten a new primary!
I live in NY and was misdiagnosed in August 2019 with PMR and given 10 mg of Prednisone. I researched and found my symptoms compatible with GCA. Went to rheumatologist,had biopsy and diagnosed correctly. Given 50 mg prednisone. Now on 10 mg and Actemra. Still have slight headache and jaw discomfort. I too have anew primary and although I love my rheumatologist, I decided to go to Hospital of Special Surgery where I am now being cared for.
Be hopeful!! but also be vocal. Do you recall what I experienced at the beginning of the month? (My memory is but a memory so I can't recall if you commented, forgive me) Anyway, I let my discomfort slide but last week I started with the jaw pain, etc and some pain, not too bad, but in the left temple. So, I sent the Dr. an email today, I'm presently on 6 mg methylpred plus Actemra weekly. I told him I would like to go back up to 8 for a bit. I hope he cooperates 👊🏻 because I do believe I'll do it anyway. I don't care if I take 8 until I'm on the underside of the dirt. The Actemra has helped me a great deal, but with my history, it is a roll of the dice as to how long I'll tolerate it.
I trust what a lot of the gals have said about the emphasis being on the symptoms. I know my lab work was great but I'm just not comfortable with this pain.🤎💗 (Looks like a chocolate heart to me....I dream in chocolate)
I think you have to go where you believe they are competent. You have to trust. I was so full of so much Prednisone in this process there are some really 'fuzzy' times. However, I can remember clutching my rheumy's hand telling him that I thought he was the only one really! taking care of me. I felt like a helpless passenger on a journey going nowhere. Once again...this blessed forum gave me ground to stand on, explanations and understanding. xoxoxoxoxoxoxo👨🏻🤝👨🏻👨🏾🤝👨🏽👨🏾🤝👨🏾👨🏿🤝👨🏻👨🏽🤝👨🏼👩🏾🤝🧑🏽👩🏿🤝🧑🏻
Well done going to ER. Wish I had thought of that. And what a brilliant doctor to get it right. I feel the same about my gastro man who I feel saved my life. I keep meaning to write to the eye man who asked if I'd made it up to inform him of my eventual diagnosis.
Believe me, even the ED doesn't always get it right either! Or they do but the rheumatologist doesn't agree. It can be a difficult path. A few hospitals have a fast-track set-up and that includes training for the local GPs. The recommendations are it should be roled out nationwide - but that costs money. A training programme for GPs is underway in the NE but the current situation has probably put that on ice ...
I’m not the type to run to dr/Er and am more inclined to push through. But thank goodness that evening I did! As with u and yr great gastro man there are good guys/gals out there!!
If you are up to it, I think it would be an enlightening, kind, polite, diplomatic gesture to write the chap and 'awareness' note. It just might make the doc a little more sensitive to what the patient says. I'm so grateful for all of you and your inspiring stories of perseverance.
As long as we can put one foot in front of the other....with the forum behind us....we are unbeatable.💖
What I have been puzzling over is why I kept quiet about my self diagnosis. I could have gone back to the GP (but as I said I thought he was half barmy) or i could have told the eye doctor. I think it was a) lack of confidence in myself b) not wanting to be rude (hey doc, I know what's wrong with me cos I read it online!) c) fear of putting their backs up and making the situation even worse than it already was (visions of irate docs thinking "how dare this jumped up old lady tell me what her diagnosis is - I'll show her - my diagnosis will be anything but what she thinks it is!" ). Strange though - you'd think survival instinct would have overcome any of these qualms - perhaps it's because I'm English and politeness rules over all things! Yes, I must write that letter. Thank you Grammy.
I just have to share my misdiagnosed GCA story (in Canada - Toronto area) after reading your post...after the nonstop headaches that eventually increased in severity, comparable to the crescendos escalating in a symphony and then slowly decreasing, only to again escalate in unbearable pain, flashing lights in my eyes....neurologist diagnosed me with migraines and prescribed Gabapentin. Obviously this did nothing; when I had my second follow up appointment, he said he was going to make a referral to a psychiatrist. He believed I had been abused as a child and I was dealing with suppressed memories which were causing my headaches! I have no idea how he came to this conclusion... unless he had to reach a quota for referrals to psychiatrists!
So “happy” to know that I’m not the only one who had to endure a misdiagnosis...although I now know how difficult it can be to get a correct diagnosis. BTW ...when I finally had my biopsy, the surgeon took out a section of a vein rather than the artery....had to have a second biopsy 3 weeks later. Not fun.
However, I am grateful that I am recovering...and that I have this site to educate and support me - and all of us -as we navigate this disease!
Omg!!!! What a .....I don't have a word without digging in my really bad swear words bag. If it was the psychiatrist I would have said a Freudian no doubt, but a neurologist said that! 🤯🤪
My heart goes out to you for sure! I must say....An idiot to think of sending you for therapy with those symptoms. Of all the specialists, it has been my long experience that neurologists have the highest percentage of 'ego issues'. NOT all of them, of course, but too many. I'd just love to see GCA get more publicity, if you will, so that it occurs to physicians as a possible diagnosis. The wasted time is way too costly. So glad you did not lose any vision.
Poor you having to have 2 ops! Luckily no one ever mentioned biopsy to me. I think I have been on steroids for about two years and just lately i have been feeling well as opposed to half-well, so there is hope for us all.
Yes, it has been quite the journey...I had promised myself that when I was well enough, I would address this with the hospital ombudsman/CEO /someone! ... to ensure that no one else else would be subjected to this treatment, no matter what their presenting condition. Sadly, I have not had the energy to do this yet and with the world being grappled with this terrible virus, this is hardly the time to bring this to their attention. As an aside, as a retired teacher, I can remember teaching my Grade 3 science classes about the difference between a vein and an artery....surely someone as educated as a surgeon would know the difference! (The second surgeon said this can happen; however, when the initial biopsy was being performed, the surgeon was assisted by a Resident doctor - it’s a teaching hospital; this adds insult to injury!) I’m still growing in the hair from the side of my head where the two biopsies were....and losing more...
Don't you just love the way Doctors 'smooth' things out for each other..."this can happen". Well, anything can happen but would also figure the Doc would know the difference between a vein and an artery.
How about I pop him one and OH WELL, "this can happen"....xo
You do seem to have a positive attitude which helps enormously.
I was advised I had a case of constructive dismissal when my workplace didn't make changes as recommended by the disability in the workplace pre pmr. But like you say, sometimes you just don't feel well enough to even start it then life steps in. So don't worry if you address the issue as you go on, rather than doing a formal complaint...just yet. 🌻
You are so right, Poopadoopy, when the container has a certain amount of energy we are wise to put it to the best use. A positive attitude is one of the best tools in our box. You have a great day!!💖
I was thinking about your constructive dismissal...I have a friend who has ankylosing spondylitis and worked in Human Resources for the State of Maine. She suffered and went for monthly infusions as well as steroids. If you work for any state in the US you get a state pension (which is usually generous) but you don't get the monthly checks of Social Security. If she was dismissed early she would have gotten a very small pension and was only in her thirties. She stuck it out and they even got her an upright desk and computer so she didn't have to sit. She was going through all this so she could get a disability from the Federal government which the State fought. She suffered and I'm happy to say she won but it took her two very painful years.
She then left her job and works as a greeter (pre-virus) in a large store for 2 hours a day just to 'work her body'.
Such unnecessary suffering in her case and unfairness in yours. xo
Once I had got past the shock I got my hound, which I couldn't have while working. So despite everything I got a good deal and 13yrs this year with a stroppy dog. 😁
I’m hoping the Biotin and Biosil that I am taking will help...and hopefully when I’m off prednisone it will start growing in again.. I read online that Actemra can cause hair loss as well, although not listed as one of the side effects. Two months (hopefully) for the end of prednisone, seven more months of Actemra....
I’ve composed my letter over and over in my head, and am determined to go ahead with the complaint at some point in the future. I know it will probably end up with an “I’m so sorry that you have experienced this, however be assured that Dr.... is an experienced professional...blah blah” ! If nothing else, it will allow me to feel vindicated on some level!
As for my attitude, my favourite saying is “It is what it is”...and thank you for your compliment because it reinforces that saying...we can only do what we can today and no amount of worrying or falling into the “why me?”will change our situation. Can’t change anything...so I try to get through each day in gratitude for what I have (not always successful but I try!)
You ARE vindicated.....you have won! You can't engage in a battle of wits with an unarmed person. It is the full-time job of some to c.y.a. for the medical profession.
I believe also...it is what it is, run with it. ~~ It's all good and instead of ~~Why me?, Why not me?
At least I can see out of my right eye...and if I can't someday~!.... I can walk...and if I can't walk~!...watch out because I have HOT WHEEL wheelchair experience.
ALL of you are such an inspiration to me...I'm filled with gratitude~!💖💖
An interesting article. As someone who was firstly diagnosed with GCA and polymyalgia last October. And since then the rhematologist has criticized the symptoms and side effects I experience from the steroids saying that they have nothing to do with GCA or PMR. I have been left in limbo. The only saviour has been a supportive GP. Who is supportive in me tapering down asap and start again. It's not easy Though. 40 down to 7mg of steroids in three months. With side affects galore. Hence the tag of. Unknown. Autoimmune disorder yes exact condition who knows.
I'm glad you got the help you needed. I've had polymyalgia for three years then the GCA. Since then I've been up and down, I now know what it feels like so I'm able to stop it before it gets too far. I have lost teeth, hearing on both ears has, all at once gotten bad, I had to buy hearing aids, diminished eyesight both eyes. I could go on but I think you get the picture. All of our walks are different, knowledge is power! Have a great, wonderful day.
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My story so far
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My PMR and GCA story so far...
