Firstly, I want to say this is a wonderful and valuable forum. Although this is my first post, I think I've already read just about every post in your archives. My autoimmune history is long and too involved to explain but two years ago, I developed dramatic new symptoms which presented like PMR/GCA. However, bloods were normal, I was very thoroughly investigated and the docs decided it was a flare of the other conditions. The symptoms eventually pretty much subsided on their own, except for this feeling that I'd aged 20 years. Then a few weeks ago, I developed a fever, right-sided head and jaw pain returned and this time, the bloods showed inflammation - ESR 107 and CRP 14. The other difference is that unlike last time, I responded well to a shot of Depo-Medrol which improved the symptoms, albeit just for a few days. There are numerous reasons why steroids are dangerous for me but my rheumy decided I had to be put on 40mg daily while he organised a biopsy. Because I was so scared, I chose the private route but this hasn't worked too well and I've had to wait 2 weeks for the biopsy, now scheduled for next Thursday. I didn't initially respond at all to the steroids and took myself off to A & E at our local eye hospital... twice... where they did thorough checks of my eyes and found no signs of vasculitis. Then after a whole week of Prednisolone, I suddenly woke up feeling a lot better. Still very weak but the head and jaw pain had subsided. Sadly that only lasted 2 days and today, the jaw pain's returned. It's confusing me though because it's not the type of jaw pain most commonly described, i.e. claudication. It isn't connected to chewing. Of course my main concern is sight loss and I'm very worried that 40 mg of Prednisolone is not high enough to protect it. So I'm sitting here, wondering if I should risk my credibility and return once again to A & E (eye hospital closed at weekends) or if it's safe to wait until tomorrow when I can hopefully contact my rheumatologist. Any advice would be very welcome because I'm scared to death and that's not helping anything.
Likely GCA but not yet diagnosed and scared to de... - PMRGCAuk
Likely GCA but not yet diagnosed and scared to death!
Hi,
No wonder you are scared, most would be in your situation. Would hazard a guess that 40mg is not enough if it is GCA, that's usually the low end of the starting dose. Why does Rheumy think they are dangerous for you ? It can be just as dangerous if you aren't on the right dose!
You could try taking an extra 5mg or even 10 mg and see if that helps, but if you're really worried then A&E it has to be! Better safe than sorry.
Thank you for replying so quickly. Some years ago I took 10mg of Prednisolone and within days, developed cold sores all around one eye and a vile ischeorectal abscess that caused sepsis, had to be operated on as an emergency, and took 3 months to heal. I also have immune deficiencies so not much natural defence at the best of times. Bladder infections and diverticulitis lurk all the time but are normally just about controlled. My rheumy, who's been treating me for years and whom I've always trusted, still doesn't think this is GCA but after everything I've read, I do! I agree I'm not presenting with typical symptoms but after reading posts on here, it seems many people don't. I should have added that on the last visit to A & E, after just 4 days on steroids, my ESR had dropped from 107 to 47 and the CRP from 14 to 0.9 but I'm not clear on whether that decreases the possibility of sight damage or whether symptoms are more important. This certainly is one complicated and confusing disease.
Hi AnnS
Welcome. I have had bilateral glaucoma now for 14 years and so I am end stage now...I have GCA and a few months ago I had such pain in my right eyeball and was to due see my scheduled ophthalmologist to in a few days. He sent me for an MRI scan of my eye and immediate blood tests and put me on a weeks worth of 40 mg it did the trick although it is not the GCA that caused my glaucoma although it doesn't help!! Hope all goes Well for you AnnS and when you get a confirmed diagnosis then you can start the correct medication. This is a brilliant forum so keep in touch
Oh I'm sorry you have such horrible problems with your eyes. Eye pain of any kind is alarming so I'm glad the 40 mg sorted it out. Thank you for your good wishes and I'll certainly keep posting. I think this is a fantastic forum.
What hospital would it be?
But pred isn't the only answer these days - there is a biologic which is approved for GCA and maybe that is an option?
I've got myself in a bit of a muddle with hospitals really. I went straight to my regular rheumy on a private appointment at the London Bridge Hospital. It's a specialist Lupus Unit and all the consultants there also work for the NHS at either Guy's & St Thomas's or St George's, Tooting. My local hospital is the Royal Sussex in Brighton and also has a specialist eye hospital but my (many) past experiences with them have been awful and I wouldn't really trust them to remove a wart from my finger. (The hospital has now been put on 'special measures' so it's obviously not just my paranoia). My new GP is very good but it's hard to get hold of him and last time I did, he said as I was seeing some of the best rheumatologists in the country, at some of the best teaching hospitals in the country, he had nothing to add. I think the docs in A & E ( who seemed very nice and very thorough) felt the same so didn't want to interfere with my treatment. They also felt the 40mg dose was ok. After I saw him, my rheumy cleared off on holiday, leaving his secretary to find a vascular surgeon to perform an urgent biopsy but the best they could do is next Thursday, which is one day within the 2-week 'window' after starting steroids.
Oh I should have added that my rheumy said there is no alternative to Predinsolone at this stage.
Not for PMR and perhaps not until he has a diagnosis - but it IS possible to get funding for Actemra/tocilizumab for GCA. Normally I suspect you might have to have "failed" pred - but to be honest, it sounds as if you did that quite comprehensively in the past...
Yes and he only prescribed 40 mg for 2 weeks, then told me to drop to 35 mg for a further 2 weeks. I think he certainly expected to have the biopsy results before then but he also told me that he has quite a few patients with GCA and not one of them had a positive biopsy. He wasn't even sure whether to do one. Last time I had the symptoms, I had a cranial ultrasound but that wasn't offered this time.
Biopsy results should be available in a day or so - and a good surgeon would recognise some signs of inflammation with the naked eye. I would expect the biopsy to be treated as urgent...
'Urgent' didn't seem to be on the vascular surgeon's radar. During the pre-op consultation, I did raise my concerns but as he was just carrying out the procedure for the rheumy, he wasn't interested in discussing the symptoms and assured me the biopsy would still be viable, even after 2 weeks on steroids. I will certainly refuse sedation so that I can quiz him both during and after the procedure, as necessary.
Funny - fast-track allows for a couple of days, not weeks.
Perhaps should have gone privately to Southend...
I was diagnosed with GCA in May this year, put immediately on 60mg Pred. The symptoms had been coming on for ages but I attributed them to my pre existing problems, RA, osteoarthritis, osteoporosis etc but I woke early morning and couldn't open my left eye, it felt like I was being stabbed with a red hot poker, terrible headache left side, sinus blocked, just awful. My biopsy was done after 2 weeks of steroids and the surgeon removed a section of a vein instead of an artery! So negative result. I've been tapering the Preds very slowly and now on 45mg/day but I really struggle every time I reduce by 5mg. Also I've now been told I have Polymyalgia Rheumatica which frequently happens with long term RA and onset of GCA apparently. It's all so scary and confusing but this website and the Vasculitis Support UK are so helpful and full of information, I don't think I'd have coped well without them. I wish you well and hope you get good results. Maggie
Hi AnnS Temporomandibular disorders (TMD)
I have had Temporal Arteritis since 2015 and this forum is where I get most of my education from!I may be able to help offer another explanation for the jaw pain that your Spidey sense feels it is not claudication. I had a flare in July that came with a new symptom. I have not had jaw claudication yet. Just in front of the ear involved a circle the size of a large coin started to pulse pain. About five minutes later that stopped and the pain moved forward to the jaw joint. The area it covered went down to the jaw line and formed a pear shape. It lasted about twenty minutes. I too felt it was not jaw claudication. It wasn't ,as verified by the rheumatologist but was up to me to solve what it was. My dental office helped out and I got in to see a special Dentist that also specializes in Orofacial pain. The diagnosis was Temporomandibular disorder (TMD) which is pain in the muscles that encircle our head. It can also cause headaches which is my first symptom of a flare so I need to be able to eliminate symptoms. My cause is clenching of the teeth. I do it so much when I am stressed. I forgo the $2500.00 treatment plan and am doing things to treat it myself. I am the type of person that is ok as long as I know what I am dealing with.
Don't be afraid, I felt the same way until I found this "Island of Others"!!
You are just not sure of things and that will come with experience. I was afraid to add any Prednisone when I was in trouble but have come to learn you can and the first priority is your sight. And at 2am there is only you.
Best of luck, Welcome,
Lin
Good advice
Thanks for this post Lin. I had a mystery jaw pain that fits this description a year or so before my PMR diagnosis. It has always worried me. Once the hospital had checked my heart it was left unexplained. I had a single reoccurrence of it the other evening accompanied by a sensation in my oesophageal area and preceded by a stomach ache. It was a stressful evening. I took an ordinary indigestion remedy and it disappeared after about 20 minutes. I know I clench my jaw, I keep catching myself sucking hard on the back of my tongue ( a stress thing). Perhaps you have provided an explanation for the jaw symptom with temporomandibular disorder. Of course I think it is a manifestation of GCA at the time. I have constant headaches, particularly at the base of my skull.
The question is when and if to jump and get help?
This is very good advice, thank you. At the moment, and due to past experience, I'm just as scared of the Prednisolone as I am of the disease itself. I definitely need to get a grip of the fear because I know that is bad for the body at the best of times.
Lin, thank you for this reminder. I've had a recurrence of jaw pain and I know I'm a clencher, with past TMD problems. Going to try my self-care routine ...
Thank you everyone for your interesting replies. I did go to A & E last night but after sitting there for a dismal 3 hours, I saw a doctor who said she didn't feel there was any cause for concern and saw no need to increase the steroids because I've had no visual disturbance or new symptoms, even though I told her the steroids didn't seem to be doing their job. Because my bloods had been done less than a week ago and were going in the right direction, she didn't want to repeat them either. Then... she went down the inevitable path of asking whether I live alone and suggested that I'm just getting over-anxious. So I was sent away to wait patiently for my biopsy on Thursday. I get furious when they go down the 'anxiety' route but I have to admit that I do feel a bit better today so far and the excessive head sweating has subsided again so maybe there is an element of angst involved.
Your experience of jaw pain is particularly interesting. I first developed a problem with both jaw and tongue more than 2 years ago which was originally investigated by dentists and a maxillofacial specialist with nothing whatsoever found and no diagnosis made. Then when I had the first suspicion of PMR/GCA a few months later, it was a constant feature, along with right-sided head pain and stabbing pains in the eyes, but again nothing was found to suggest any kind of vasculitis. So I just lived with it and after about a year, it completely resolved. The weakness, aches and pains in my body and general lack of energy did not resolve but I just presumed it was impending old age and a general deterioration of my existing autoimmune conditions and lived with it the best I could. But during this latest dramatic illness, back came the jaw, head and face pain with a vengeance so there is obviously some kind of connection to inflammation. Really I'm feeling like I've left my body to medical science before I'm dead and I do hope the docs will be able to get me some answers eventually. If someone could identify a definitive test for GCA, they'd deserve a medal!
If it is affecting the temporal artery or another artery that is easily accessible using ultrasound that does do an excellent job when it is available. Unfortunately GCA also affects other arteries - and the NHS baulks at giving every suspected case a PET-CT which will light up like a Christmas tree when inflammation is present.
I wonder what they looked for before saying nothing suggested vasculitis.
Two years ago when I experienced the first 'crash and burn' I had a lot of investigations. A cranial ultrasound, full-body PET/CT, a thorough examination by an opthalmic specialist and nerve and muscle tests. The only thing they found was on the PET/CT which revealed some inflammation in the spinal process - lower back where I'd had pain for a long time. My doctor said it could be polymyalgia but didn't see it as signficant.
This time however, I personally think things are signficantly different because I've had a fever and highly elevated inflammatory markers in the blood, neither of which I had last time. So I don't know why I'm not having all the tests again. My rheumy wasn't even sure whether to order the biopsy because he said ALL of his GCA patients were negative but decided to go ahead because it's one more test that could aid diagnosis. I normally trust him implicitly but I think I'm presenting him with a bit of a challenge so I'll wait for the results of the biopsy and then see what he thinks. In the meantime though, I think I might call him about the planned steroid reduction. He only wanted me to stay on the 40mg dose for 2 weeks, then reduce to 35mg and I'm not sure that's right, given my very slow and incomplete response to them.
I know the NHS is so cost-driven these days that I might not be offered the optimum tests or treatment so I've been hammering my health insurance again. However, this time I think it will increase my premium beyond my reach so that's yet another thing to stress about. I used to work for the insurance company and have had the same policy since I was 16 years old but that apparently doesn't earn me concessions any more.
It is likely to be only a matter of time before private insurance refuses to cover you at all and you would probably be better spending your money on a private appointment with a good rheumy who does NHS and is likely to transfer you to their list.
He is wrong to say stay on 40mg for only 2 weeks - particularly if your symptoms have not fully resolved. If he is reasonably convinced that it is GCA then he should stick to courage of his convictions.
However - with your comment about the original episode - has anyone considered and looked for a spondyloarthropathy? It can present very similarly and cause psuedo-GCA symptoms. Whether that is well known I don't know - but I know at least 2 people who were originally diagnosed with PMR and had the dx revised later, one of them had apparently had GCA. The spinal inflammation is suspicious.
For my other autoimmune diseases, that's exactly what I did back in 2008 when they were finally diagnosed, having started off locally and failed to get proper treatment. I tracked down the so-called Centre of Excellence and had a few private consultations and tests to confirm the diagnoses properly. Then one of the doctors there transferred me to his NHS clinic at Guy's & St Thomas's for ongoing monitoring. It's worked pretty well but I do tend to return to the private centre when it's urgent, sometimes paying for it myself and sometimes claiming on insurance.
I've just quickly read a bit about spondyloarthropathy and there are certainly some features I have but some I don't. Over the years, several rheumatologists at the centre where I go have conferred with each other regarding my conditions so I imagine that was considered somewhere along the way. As far as they're concerned, I have antiphospholipid syndrome, Sjogren's syndrome and undifferentiated connective tissue disease (lupus-like) which, of course, covers a multitude of sins. Add to that a recent addition of hypogammaglobulinemia and it seems my poor old immune system is having a real struggle.
I will definitely phone the doc before reducing the steroid dose because he needs to know about the slow response. It's obvious he's not yet sure at all whether it's GCA but whatever it is, it's obviously some kind of quite dramatic inflammatory process which will probably only be controlled by the dreaded steroids anyway.
Thanks for that. I'm on the south coast in Hove but could drive to Chertsey and will pretty much go anywhere if I need to. There does seem to be a problem with having too many doctors though and I've been battling for years with it. My GP gets quite sniffy about me going to London (and to the neighouring Trust in Worthing for dermatology) and says I would be easier to manage if I was treated locally. Then at the Eye Hospital and at A & E they clearly became less interested when they found out where I'm treated as they would obviously normally refer locally too. I had exactly the same problem when looking after my terminally ill husband. His cancer had been treated throughout by Guy's but when he became too ill to travel, they asked the local cancer centre to get involved. Their response? We're not being told what to do by a London hospital and I had a devil of a time fighting for everything he needed.
However, I digress. At the moment I am my first priority and will go wherever I have to to get looked after properly. It's just not so easy to travel anywhere when you're really ill, which I have been for the past couple of months.
I know steroids are wonder drugs and save a lot of people. The only reason I'm so scared of them is because I am so immune deficient anyway, meaning that I get struck with tenacious infections very easily - some of which have been really nasty - and suppressing what I do have is likely to make things even more dangerous.
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