My GCA/LVV experience is a warning that the disease does not always present in the typical way we are alert for. I had headaches but no jaw claudication, no tongue pain, no eye symptoms, particularly light flashes in one eye.
I had, had fairly typical PMR for 4 years, predictable, bilateral pains in the shoulders and groin area. I was unable to lift my arms above my head, get in and out of chairs, bed, bath. I had low level fever and constitutional symptoms. I responded beautifully to Prednisalone within 48 hours, 20 mgs had restored me to near normality - a bit hyper but completely mobile. My Dead Slow Nearly Stop taper was fairly uneventful until I got to 7 mgs. I experienced no flares. However, when I tried to get below 7 mgs, I experienced a return of PMR symptoms. I ended up sticking at 7 mgs for a year. Eventually I managed to get down to 6.5 mgs and eventually, with many gaps I got down to 3 mgs. If I am honest my determination to get off Pred overrode my usual listening to my body and symptoms. I had begun to feel really unwell with frequent headaches but not typically PMR. I know I had episodes of coughing and vomiting. My Rheumatologist ran a series of tests including CT scans, MRI scans, a scan of the Aorta, a head MRI and finally a specialist ultrasound scan looking at my arteries. This was where the halo effect in the arteries, that is typical of GCA, was spotted in my left armpit. This was my diagnostic moment. I was immediately put on 40 mgs of Prednisalone and once it became available and my Rheumatologist successfully applied for it, I began Tocilizumab/Actemra injections. This enabled me to reduce Prednisalone in a few weeks to 10 mgs - no flares. I was grateful for this because I had developed hypertension, borderline type 2 diabetes ( now corrected) and the beginning of cataracts. Also almost irresistible weight gain in spite of my low carb efforts. My current treatment of Tocilizumab injections and 7 mgs of Pred is a bit of a leap of faith. I have never really felt well, lots of symptoms, nasal, eye, sinus infections, frequent UTIs, IBS and latterly significant, lower, abdominal pain. I just feel generally seedy and very fatigued. Following a Colonoscopy, showing normal wear and tear ( diverticulosis). I have instinctively decided to stop Tocilizumab and take my Rheumatologist’s advice on next steps. I am not sure if some or any of my symptoms relate to GCA/LVV or just the drugs that are hopefully controlling the dangerous inflammation. I have recently been diagnosed with mild ascending dilation in my Aorta ( major artery). I have yet to properly discuss this development, I believe it to be linked to GCA/LVV. It is hard to know if I will know when I am in remission. I have recently upped my Prednisalone by 5 mgs because my walking has become quite wobbly and painful. To be continued……..
I
Written by
SheffieldJane
To view profiles and participate in discussions please or .
I suspect if the truth were known - there are far more extracranial cases than "traditional" GCA but most of them are simply classified as PMR that doesn't fit neatly in their pre-conceived boxes. But since they don't look, often it isn't possible to identify the signs, they don't know.
Like you. I think that I may have had the symptoms of Temporal Arteritis years ago that went unrecognised and aborted before coming to anything. I had terrible trouble with my ears and sparks in the dark when I blinked, tooth pain and always headaches particularly occipital. I think I had a narrow escape maybe. I simply didn’t know, then I got PMR.
The thing is Jane if you explained those symptoms to most GPs they would most probably look bewildered at you. Your on a hiding to nothing. Its a nightmare.
Hi SJ - thanks for this detailed account of your experiences with this horrid disease and some of its perverse 'expressions'. You eloquently highlight for all of us the also somewhat idiosyncratic versions we might expect there are clearly many variations on the main 'themes'. Like you my PMR/GCA has been 'long term' now in to my 6th year so it's STILL 'there'. I have never been able to taper in a stable way to anything less than the 10mg of Pred I am currently on and never able to access the TCZ you have tried here in OZ (not 'eligible' according to the criteria here). Perhaps this has been a blessing in disguise given your experiences and the possibility of other 'nasties'. I have had some of the longer term side effects of Pred - weight harder to control, cataracts, more sensitive gut and osteopenia . Fortunately all of these have been generally at least partly controllable so nothing too sinister so far. Unlike you I have never had a diagnosis which is other than clinical and the PET scan I had a couple of years ago showed no vascular inflammation (I was on an even higher dose of Pred then of course). All very frustrating and you seem to have had to juggle a confluence of symptoms which would confound almost anybody - so this is all very hard. I do hold out some 'hope' for the future however when I think of my mother who (in the 1970s) lost most of her eyesight from untreated GCA and had multiple small strokes over several years. I am grateful she had times when in retrospect she seemed at lot 'better' but obviously hard to tell now if these were 'remissions' or just her indomitable spirit shining through. Anyway just to say I empathise SJ - as do so many others here I am sure - with all you have had to cope with !All the very best
Hi Rimmy and thanks for your input. None of my extensive tests showed anything either, until it was discovered nestling in my armpit. I also have psoriasis which is not bad but could point to psoriatic arthritis, maybe explaining the feat of courage it is to walk across a room, currently. Your mum did have good days, I do too, just not at the moment. The non cranial GCA can spread to the Aorta, which is another worry.This wasn’t just a howl of self pity, PMRPro and Mrs Nails are compiling shared experiences of GCA and Tocilizumab in FAQs.
Jane, thanks for sharing your experience in this ongoing journey. Are you stopping the TCZ because you attribute your general malaise to using it? or because of the diverticulosis? I find it almost impossible to be able to know if the way I feel is because of the disease or the cure anymore.
As you know, I take weekly TCZ injections and am still at 10 mg.....which for me is a huge achievement, so I'm really interested in your hopes regarding the decision you made.💕
I have never felt well on it but the final straw has been the constant gnawing pain in my lower abdomen. It is probably making existing erosion worse. Some foods are like putting salt on a slug. - which I don’t - sorry, I’ve had enough. Awake with pain now.🥹💖 I have just gone up to 10 mgs Pred, I think this is my first flare. At least I can sleep off the malaise and buy household scrubbing gadgets and a robot vacuum cleaner, which is what I’ve been doing.
I really sympathise with your difficulties and sincerely hope you find a way out of this next stage of your illness. But please forgive me for going "off piste" a little and asking if there are any cleaning gadgets which you have found helpful? I can hardly bend down and am desperately looking for anything which will help with cleaning my home. Apologies for introducing something that appears so trivial in such a serious discussion.
Have a look online for long handled tools to help -brushes/dustpans, grabbers, gardening tools...plenty of disability sites and good old Amazon - or start a new post - there are loads of people with other issues that make bending difficult...or maybe try one of the arthritis sites...
Don’t get me started. My little robot vacuum cleaner is wonderful, he goes under the beds and just tootles around picking up all the dirt ( I talk to him). He puts himself to bed to re-charge when he needs to and beeps if he gets stuck. I have found a marvellous extending brush in Lakeland. It has a rechargeable battery and different heads. It can reach the ceiling or the skirting boards and is great for the effortless scrubbing of nooks and crannies. A little baby oil on your duster stops the dust from building up too quickly ( I don’t know why, but it does, thank you Internet).
I think that Robot Vacuum is hilarious. A light moment 😄. I live alone so deep cleaning in nooks and cranies is a no no at the moment. Wooden floors throughout so tumble weeds blow freely. I have to say my whippet would love a robot vacuum hmmmm......
My husband bought himself a long-handled gadget rather like a giant electric toothbrush for cleaning the bath. There is noting wrong with him, he just loves gadgets. But it is good for getting to the other side of the bath which is at such an awkward angle!
Thank you SheffieldJane (and also Rimmy ) as I find it helpful to read others real experiences. So different to the text book descriptions some medical professionals believe apply to everyone.
I wonder if everyone with PMR should periodically have ultrasound tests like you had that showed the GCA/LVV. Thankfully I only have PMR but the worry of GCA is always at the back of my mind.
It was always an anxiety of mine but mainly the threat to eyesight. My diagnosis could well have been missed if it hadn’t been for my “ on the ball” Rheumatologist. Clearly there are other dangers such as threats to hearing and to the heart. There is a shortage of properly trained technicians to undertake these ultrasound scans. It always boils down to short term cost.
Oh Jane ! I knew you had struggles but put so clearly like this really spells it out. I know you have a good rheumatologist, and thank goodness you do. I so wish a copy of your journey could be passed through every GPs office in the country! Where I live on the Fylde Coast it doesnt seem to figure on the priorities of Rheumatologists or GPs. I get one blank look after another. Followed by a quick search on their computer screen and a quote from "the Guidelines". As if I'm not capable of doing the same. Sometimes I think I get a slight "wiff" of fear from them.
When I first read the explanation of this disease (and its nasty little buddies) on the NHS website, I naively thought " oh I can cope with 2 years - just!"
I too, like most, live in fear of GCA.
I'm currently in day 5 of Covid, having been isolating for 2 years. I've tried to see a Rheumatologist over the last year but have had 1 no-show (him not me), 2 cancellations and no re-match yet.
I do have a new private appt for Thursday this week but it looks like I will have to re-set it. Such a bummer. This disease really does try us.
Jane, your post is timely and a reminder not to be complacent.
I wish you a break on this with a hope that someone is looking down on you and thinks "enough is enough.... sort this girl out!" M
Thank you for that. It means a great deal. We really need to be our own advocate, especially now. Please push for what you need. We have to, weary as we are. Please don’t take risks - even travel for an appointment. My Rheumatologist is in another town but was recommended to me by PMRPro. She is one of the best! Well worth it!
Jane , thankyou for sharing your journey. If I remember , we were roughly diagnosed with PMR in the same year , 2016 ?? Thank goodness you have a Rheumy who listens to you! Like Mojobumble says, you deserve a break. Sending you a most gentle hug x🌺🌺
When I read stories like yours I sit back, feel very humble, and wonder why the hell I whinge so much about my own predicament. I am now two and a half years in and after many many different scenarios only now been told I have PMR but having read your story I sort of feel grateful. I wish you the very best and hope for a less painful future Jane.
Hi Jane, good post and so sorry you're having such a tough time. You write extremely good and understanding messages. I agree with one of the replies maybe we should all get these scans to make sure everything is working the way it should. Probably another paying appointment though as NHS seem to be on their knees.
I sincerely wish you well and hope you get sorted soon and start to feel much better.
I think that it is a great idea to monitor people with PMR for GCA. It is such a straightforward, non-invasive ultrasound scan. It is the training of technicians that is the obstacle.
~Thank you SJ for sharing your journey - think I have been travelling the same distance time wise as you.I am still getting around to an update as my journey now has gradually taken a different turn.
Over and above I am 9 weeks post cryo-ablation procedure to my heart and doing well.
I absolutely understand and feel the very essence of your inner being.
I hasten to extend belated Easter blessings to bring some comfort ~
I wish you every success with your ablation procedure. It sounds like you have quite a story to share. Thank you for your kind wishes, it is lovely to be understood. I wish you the same. Please share your story when you feel like doing so. 💕
As you know Jane, our PMR and GCA-LVV journeys share many similarities. I was diagnosed with PMR in 2016 and had several flares, but was tapering the pred nicely to 4mg by 2019 with few PMR symptoms. My CRP & ESR always indicated an increase in disease activity and in 2019 they rose higher than when I was first diagnosed, but without a rise in the pain and stiffness associated with PMR. My legs, however, did 'run out of steam' after walking a short distance - 200 yards or so. My Rheumatologist (and yours!) called it "claudication".
Therefore I had a PET-CT scan which showed extensive inflammation in my aorta and all its branches, including the blood supply to my legs - quite dramatic to see the images! An increase in pred began to bring the levels down, but my rheumatologist predicted that I might continue the pattern of flaring, so I started on Tocilizumab in March 2020. Due to the Covid pandemic, I have had 2 years on TCZ instead of the 52 week NHS allocation. I feel very fortunate, as TCZ seems to have suited me well and I have not been troubled with too many side-effects, other than a lowering of my white cell count, which is monitored regularly. I have continued to taper the pred very slowly at 0.5mg / month once I reached 5mg and finally arrived at zero pred in April 2022.
Now that I have to stop TCZ (March 2022) my Rheumatologist is being very cautious and starting me on Methotrexate, as she fears the GCA-LVV could flare again if I were on no medication at all.
I am aware that you know my story, but have documented it for the FAQ post.
This is an example of Tocilizumab at it’s very best. I am envious of your zero. They really can’t tell if we are out of the woods can they? I sincerely hope this thing has left you, forever. Do you feel well?
I do feel relatively well - all things being relative to the fact that I'm 6 years older than when I started with PMR. Also, 6 years of pred and reduced activity has weakened my muscles, so I will have a lot of work to do to regain some strength. Apart from my rug-making hobby, I used to enjoy toiling away in the garden - now I can do about 30 minutes weeding before I start to ache and know I have to stop - I'm not talking about heavy digging! We're having to redesign parts of the garden into low maintenance beds.
I had hoped it might have left me forever, but that is the unanswerable question, hence the MTX prescription.
However, as I keep saying "I'm still here", so it could be worse! Keeping calm and carrying on.
My husband is in good health, tall and slim. I use him as my wellness measure. Over the past 6 years he gets aches and pains and is more tired and limited in some ways. So we won’t come out of this cartwheeling. Alas!
Thanks fos sharing. I'm sorry you have such a struggle with this. I am also on Tocilizumab/Actemra, but fortunately have done well so far. I am tapering off prednisone after a recent flare when Tocilizumab/Actemra was not available due to supply issues. I do think I am more fatigued, especially at night. Hope things improve for you as you continue on your journey,
I am really pleased to hear that you do well with Tocilizumab. It is the first bit of sound medical progress that has been on offer for us. The more people it works for the better. I think it is pretty poor that we are not regarded as of equal priority to Rhuematoid Arthritis Patients. It makes no sense at all and is unfair.
Hello , I have just read your and all the additional supportive posts. All you write about could be me except I have also suffered sight loss due to late diagnosis. I did take toccilizumab for a year and I stopped just before the full 12 months. I had so many health issues, 2 aneurysms, awful weight gain, hair loss, appalling skin thinning (I am permanently covered in plasters on my arms), light headedness, chronic fatigue , bowel and gastro problems with really bad reflux. Am now down to 5mg pred per day, methotrexate didn’t work for me, dreadful mouth ulcers etc. main concern for docs/rheumatologists is that I don’t lose my remaining sight, so am continuing with pred but has anyone else been through all this and got lower than 5 mg or stopped completely? Am just about to move house, get a new rheumatologist, maybe different advice, I have been very low in spirits, having some very bad days, interspersed with some good, so not all doom and gloom. The only ‘funny’ side to this is the drug company who delivered Tocc, delivered way beyond the year and I ended up with thousands of pounds worth in my fridge. I did pass it on to my Rheumatologist though, so it wasn’t wasted. Sorry about long post, somehow putting thoughts/experiences down in writing on this website (which I don’t do often) lifts the gloom a little,
Hello Forestlady, it is lovely to meet you. Oddly reassuring for me to meet someone who battled with the new wonder drug too. You hardly dare say it out loud. I have an embarrassing amount of Tocilizumab in my fridge but my Rheumatologist says that it is no good to anyone else because it needed to be stored in an industrial fridge - I suppose for legal reasons as much as anything. Your side effects sound worse than mine but I kept stopping for infections and antibiotics.I am so sorry that you are going through a low patch. I know them well. Please let us know how you are getting on, often. It helps others too because they feel less alone.
On the question of Pred. Professor Dasgupta ( a highly respected figure in the field of our diseases) often keeps his patients on around 3 mgs of Pred for life. The side effects are negligible and it protects against relapse. Are you sorted about a new Rheumatologist? Jinasc keeps a list of recommended ones from around the country. You deserve to get someone skilled and well versed in our diseases, nice too!
Moving is so stressful. I find that it throws up stuff from the past as well - not always welcome. Sending you a big hug. I will be looking out for you. On here.🌷
Thanks for informing us of this. I have just developed double vision whilst on pred for GCA and have been told it is not a GCA flare up as I don't have any other symptoms other than PMR flare-up (aches, pains and stiffness which rapidly reduced when I increased pred). I am now trying to find a rheumatologist who can help.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
My GCA journey
What happens when you end tocilizumab 
Very Important information for GCA sufferers 
Now on the LVV journey too
