First time posting...I was diagnosed with GCA in Mid May. 10 days after diagnosis I temporarily lost sight in my left eye and had to have 3 consecutive doses of 1G Methylprednisone IV infusions. I have since tapered slowly down from 60 mg to 10 mg and although had return of mild symptoms each time I reduced, my blood markers were normal. However last blood sample (29th Jan) showed raised CRP & Plasma Viscosity. I had been feeling increasingly tired during January with headaches, scalp sensitivity, aching body (PMR). I was trying anti-inflammatory diet all along but did lapse during Christmas & New Year period. Could that have contributed to the raised levels? I am trying to find a reason why this has suddenly happened and is it common? Any tips regarding what might help would be much appreciated. Thanks
Flare up: First time posting...I was diagnosed with... - PMRGCAuk
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I was diagnosed with GCA in August of 2019 because I lost sight in my left eye; it will not return. I was on prednisone initially but was switched to methylprednisolone, 3 days 1G IV, then 60 or so mg per day. I've only gotten down to 10 mg 2 or 3 times; I forget, but I had blurry vision in the right eye trying to go to 8 mg. Not worth the risk for me.
A few months ago, my rheumatologist switched me from methylprednisolone to prednisone 15 mg per day. Prednisone comes in 1 mg tabs in the states, and methylpred comes only in 4.
When I would have a flare and have to increase the dosage, my bloodwork was within the normal range.
It all sounds like you need a higher dosage than you are taking especially given that you have elevated inflammation markers. Dorset Lady and PMRPro, as well as a few 'seasoned' folks, can give you a better clinical answer.
If it were me, I would be taking more steroids rather than risk my vision. I figure I will be fortunate to stay on 10 mg, maybe 8, for the rest of my life, and that is OK. This forum is fantastic...it is empowering and educational, to say nothing of supportive~! Let us know how you do....💖
Hello Hiland, I just joined the forum recently and I've found it interesting and helpful to hear other people's experiences. This is the first time I have replied to anyone. I live in France.
I was diagnosed with GCA last April. I was sent to hospital as the inflammation markers were very high (CRP 129 mg/l), I was anaemic, had had a cough for 4 months yet a scan showed the chest was clear, I had very bad neck pain, jaw pain. dizziness, breathlessness and migraines. I lost weight because I couldn't eat. I couldn't bear the thought of food and everything tasted horrible.
In hospital the CRP inflammation marker started to reduce naturally and came down to 90, then 40 mg/l on the day of the diagnosis. I was immediately given 40 mg of prednisone and was put on a reduction plan before leaving the hospital. I had weekly blood tests which showed the inflammation reducing until I got to 25 mg of prednisone. If I tried to go below that the inflammation went up again. At this point the CRP was 11 mg/l.
The specialist at the hospital said this was no good and it needed to come down to normal and that I needed to take another drug as well in order to gradually come off the prednisone. The other drug was Tocilizumab (called RoActemra 162 mg in France) and I had to have this in a weekly injection. I have been on this treatment since last August (2020).
The inflammation reduced to less that 0.5 mg/l almost immediately and it has stayed at that level ever since. I reduced the prednisone very gradually and came down to zero in January. So now I get the injections every week and blood tests every 2 weeks. If all stays well, the plan is that I will gradually reduce the injections too. This will take until the end of August at the earliest. I feel well and back to normal.
I think if you lived here you would have been given the same treatment as I have had. Prednisone alone doesn't work for everyone. I was lucky that the illness was caught in the early stages and not to have had my eye sight affected but all the major arteries were inflamed.
Thank you. Your GCA treatment journey is very interesting. `I suspect I may have to go on a steroid sparing drug but I am currently waiting for repeat blood results and for the Rheumatologist to advise what I should do next. I have upped my prednisone to 15mg over the last 2 days to see if it helps.
Good luck. I look forward to hearing how you get on.
The CRP and ESR markers are reduced by the action of the tocilizumab - it doesn't mean the disease is not active and about half of patients require pred ongoing. You are obviously in the lucky half!
Yes, my specialist explained this to me and she also asks for the fibrinogen levels in the blood tests now, since I came off the prednisone. It's still early days from that point of view and she has given me a plan if the blood results were to change. Luckily it is all being carefully monitored. I hope I am in the lucky half but it's not certain yet!
You must be - you got to zero! The other half need probably 5mg or more ongoing. But still a lot less than they had needed without tcz.
Thank you for giving me confidence. It can get to the stage, sometimes, when it's all you think about and what the next test will show. Had a blood test this morning and will get the results later today. I'll let you know if anything changes.
I am also on Tocilizumab, but still need 5mg prednisolone to keep my GCA-LVV symptoms at bay. While ever you are on TCZ your CRP will be rock bottom - only when you stop the TCZ will you know if your GCA is in remission. Symptoms rule over blood results!
Thanks for your reply. How long have you been on both?
I started pred in May 2016 for PMR. GCA-LVV joined in 2019 and I started TCZ in March 2020, so on both since then. My year's 'ration' of TCZ (UK NHS 'rules') will be up soon, then I have to decide whether I take up my Rheumatologist's offer of another DMARD such as Methotrexate or Leflunomide or continue with pred alone..... Decision time soon.
You've had a long haul so far. Does PMR ever go away and how is it diagnosed conclusively? I thought I might have that too but all my aches and pains have always been put down to "ordinary" arthritis. Some past x-rays back this up. Until last January, I used to play golf 2-3 times a week, all year round but I was never without pain somewhere and quite often in the hips. When it got really bad the doctor would send me for a dozen sessions of physiotherapy and that along with paracetamol is how I've managed it. How would I know if it was PMR? The GCA seemed to come on suddenly, last January but as usual nobody seems to know why. Have you had a covid vaccine yet? This was one of my main concerns with being on tcz.
There is a lot of information on PMR and GCA on the charity's website pmrgca.org.uk.
PMR generally presents as pain and stiffness around shoulders, arms, neck, hips and legs - but not always all these at once, or for everyone. Most of us would not be able to swing a golf club! It can make getting out of bed or climbing stairs hard work or virtually impossible. Some people become wheelchair dependant. The 'diagnosis' is often secured by a good response to the initial doses of prednisolone. The dose you were given for GCA should have more than covered any PMR symptoms.
PMR and GCA are said to go into remission with time, but it can take many years for some people.
Physiotherapy and paracetamol generally would not help most of us with PMR pain. Our muscles are intolerant of firm handling and pred is our 'painkiller'.
The advice for us all is to have the Covid vaccine. I had mine last week. With our immune systems being suppressed by our medication, we may not have such a good response to the vaccine, but better to have it than not! That is the advice I have been given by my Rheumatologist, who is a 'name' in this field.
Best wishes.
Thank you for taking the time to reply. I've got a letter from the GP to have the vaccine and I now feel more confident about going ahead with it. The hard bit is getting the appointment here in France!! My GP joking said, "the English have taken them all"!!
He isn't far out! Distinct lack of vaccine here too 
If you have been diagnosed with GCA and had symptoms beforehand that fitted with the PMR clinical picture, the chances are that it was PMR rather than "just arthritis". It doesn't show on ordinary x-rays and you can have both - they aren't mutually exclusive. However - if those aches have improved a lot now you are on medication, that would be a sign it was PMR. The most definitive diagnosis is inflammation in the relevant places being shown on a PET-CT scan - but they aren't easy to access and very expensive so not done routinely in most healthcare systems. The clinical picture plus response to a moderate dose of pred are the usual means - 15-20mg, if they use too much at that point, a lot of other things will respond to it. Some people need more than that to get a good response but you start at 15-20mg.
For about 95% of patients PMR goes into remission eventually - but it can be anything for 1-2 years to over 10 years. Half of patients with PMR are off pred after 6 years, 1 in 5 manage it by a year, by two years a third are off pred. 40% of patients still need a low dose at 10 years - but it could be that is due to poor adrenal function rather than the PMR itself.
If it was PMR that was never recognised and managed with pred, it is felt by some that is more likely to progress to GCA as the inflammation just builds up until it causes problems with blood flow in the relevant areas. A lot of patients with GCA also have signs of PMR - about half.
academic.oup.com/rheumatolo...
Thank you for taking the time to write a detailed reply. Although I have pain, I still have a lot of mobility. I have lost some of the stamina I used to have but I'm trying to build it up each day with short walks.
When I was in hospital last April (9 days) waiting for a diagnosis I had lots of blood tests, a full body MRI scan, a PET scan and a biopsy of the temporal artery. The latter was done first, simply because the surgeon was available on Good Friday. The other scans happened when the machines became available. The biopsy results didn't arrive until after the diagnosis and I'd left the hospital. It was after the final scan which was the PET one that the doctors came "rushing" into the room, carrying prednisone and saying they were 99% certain it was GCA and that the biopsy would confirm it 100%, which it did. I started on 40 mg of prednisone and on that day the CRP was down to 40 from 129. I don't understand how this reduction happened without any medication.
It was only afterwards when I was reading about the condition, which I'd never heard of until then (they were calling it Horton's too), that I read about PMR. I then began to think is this what my pains have been about all these years? From what you and others have said, I think I would have been told that at the time if it was the case. However, I will ask about it next time I have a medical.
It would be interesting what on the PET-CT suggested GCA because it tends to not always show much in the head because the brain takes up the contrast (lots of glucose needed in the brain!) and swamps what is round it. But it might have shown LVV extending into the carotids.
It can fall quickly with pred but there are cases where the disease activity varies - and even aborts altogether. I had scalp pain, jaw claudications and other typically GCA symptoms for a few months which then disappeared and never came back. I'm fairly sure the underlying a/i disorder cycles, alternating between more and less active periods and it all depends when you take the bloods or reduce the pred. It is a very strange disorder.
I had GCA symptoms when I went into hospital (Easter 2020), although I didn't know that because I knew nothing about the condition. My GP sent me suspecting "Horton's".
All I knew was that I had gone from being perfectly fit and well in October 2019 (with blood tests to prove it) to not being able to function. I was in Spain when this happened last January (2020).
Two months beforehand, just after my arrival in Spain, my eldest sister died suddenly of a brain haemorrhage. I made 2 trips to the UK and I was really affected by her death. I thought maybe I was depressed and that was what was making me feel ill. I had a feeling of neuralgia on the scalp and face, pain in my jaw and ears, a persistent cough (I couldn't speak with out coughing), a fever, night sweats, terrible neck pain, breathlessness if doing anything physical and groin pain. I didn't really have headaches but I would get the flashing in the eyes that precedes a migraine. I usually managed to stop it developing by taking paracetamol. I also had stabbing pains in my right eye and temple but not all the time. I couldn't stand the light and wore sunglasses in the house. I felt freezing cold all the time. The worst symptom was not being able to eat, and food and drinks tasting bad. This caused me to lose a lot of weight at the time.
I was treated in Spain for an ear infection and cough, with antibiotics and ear drops. Later I was given inhalers. Still no improvement so I had a blood test which showed some scary results including anaemia which I've never had in my life. I had a chest x-ray which was inconclusive so, due to the blood results, I was eventually treated for pneumonia with antibiotics. I was given iron as well. This was during a 10 week period until arriving back in France in March, during lockdown. I don't know how I made the journey by car!
In France a new blood test showed that the anaemia was worse in spite of taking loads of iron and the CRP was 129 mg/l. The GP sent me for a CT scan of the lungs which were completely normal. He didn't think that I had had pneumonia.
The hospital consultant therefore, was looking for GCA but wanted to rule other things out. She is a specialist in infectious and tropical diseases amongst other things. She told me she wanted to do 3 things but the order would depend on availability. I had the biopsy first (but no immediate result), then the MRI the same day, which included the head and was with and without a dye. Those results were available the same day and all I was told was that they were normal. The PET scan was 4 days later. The day before I wasn't allowed to eat any carbohydrates. It was from the neck to the knees.
I was shown the image afterwards of all the arteries that were inflamed which was just about everywhere. She said she was 99% certain of her diagnosis and that the biopsy would make it 100%. She said the cough was due to the pressure of the inflamed aorta on the lungs. I stared prednisone immediately with a dose of 40mg but by that time she told me that the inflammation CRP had reduced to 40 mg/l on its own. I always wondered how that could happen so quickly without medication. About 3 hours after taking the medication the desire to cough had eased off like magic and it was gone in a couple of days. When I think of all the medication I had taken in Spain........ There was no iron deficiency either.
I know the doctors say that no-one knows what causes GCA and it can come on suddenly but I think that doesn't mean that there is no cause, it just means that people don't know what it is. I can't help wondering if the shock of the death of my sister had something to do with it.
I don't want to burden you, expecting answers to everything. I just hope that my experience might compare with that of other people and maybe there are some common factors that we share, that existed before we got ill, which might point us to causes or links that can trigger these illnesses.
They do know - in that it is a disorder of the immune system - in autoimmune disease it is unable to recognise body tissue as self and attacks it as if it were an invading organism. There are a lot of things that can affect the immune system - including environmental factors, illness, trauma of all sorts including emotional. No one thing does it but over time the immune system is abused until something is just the final straw. And emotional stress figures high on the list.
Did I give you this link?
academic.oup.com/rheumatolo...
Fig 1 shows the areas affected by each form - and you had/have the LVV version.
You aren't burdening me at all - I read pretty much every post and reply because that's how I find out so much about what can happen in PMR/GCA. I've heard the experiences of thousands of patients - far more than most doctors! Even rheumatologists ...
Hi, thank you very much for your reply and for sending me this link. I found it very useful but it took a bit of time reading and studying it as a lot of the terminology is in medical speak. Thanks to the internet I was able to look things up which occasionally took me off on other useful tangents. I've learned quite a bit about something I knew nothing about until I was given the diagnosis.
Also, I have received the dates for my Pfizer vaccine - 1st on 26 Feb and 2nd on 22 March. I'll let you and the others know how I get on.
Personal experience regarding confusing osteoarthritis with PMR: I've done it this year and have ended up with a major PMR flare. I think it's best to err on the side of caution and assume that arthritis is more stiffness, which can be painful, which eases with activity so you are often better in the evening than the morning, but PMR keeps coming back throughout the day, no matter your activity level.
Thanks, that's is a big help. I know the osteoarthritis exists in my hands, pelvis, hips and neck as wear and tear was seen in those x-rays some years ago, dating back to 2009. Movement and staying active has always helped even though it sometimes hurts in places. Certain aspects of everyday life are a bit more difficult now, like taking the tops off jars and lifting things, for example the cast iron casserole dish. I can honestly say that I'm never pain free and haven't been for years but I have been able to bear it, with the occasional use of paracetamol. So that's perhaps the indicator that it isn't PMR as well as LVV-GCA.
Well they do say that if painkillers other than pred are effective it helps to rule out PMR. However I swam on for several months last year thinking that aspirin or acetaminophen was working so it wasn't PMR and now I'm pretty sure it was, in it's early stage flare. I do definitely have OA issues at the moment. My terrible neck and shoulder pain eased up after about three days on higher pred, and that had been one of my serious problems prior to PMR diagnosis in 2015, but one shoulder is still a bit stiff, and my neck has troubled me one way or another since childhood. Interestingly, one of my knees which has made me rather disabled for months has improved also with the pred, but I think that's because pred has relieved the inflammation. I have worse OA in the other knee, but I didn't inflict a soft tissue injury on that knee so it's just mildly uncomfortable from time to time, like my fingers and toes!
Hello there, the first year with GCA has the highest risk of flares and you are 8/9 months in. I’ve got a few questions if that’s ok. When you say your eyesight failed 10 days after diagnosis, were you on Pred at that time? To have got to 10mg in this time is on the fast side I’d say and you may have got too low for your current level of autoimmune activity. When you say you had mild symptoms when you reduced, do you mean the temporary withdrawal symptoms in the first few days that resolve? Or did some symptoms stay a bit each time? Blood markers can lag behind symptoms so symptoms usually trump blood numbers, but now they are going up it suggests 10mg is too low now. Have you been advised what to do if you flare?
As for your diet, I wouldn’t beat yourself up about it. Some of us were on this kind of diet when GCA/PMR hit and whilst it is a key part of being well the it is Pred that is critical. People here have reported not feeling good after ‘falling off the wagon with diet, me included, and perhaps if your inflammation was already being allowed to build it won’t have helped but not been the cause.
You really do need to tell a doc about these symptoms. Presumably if you know the levels have gone up, they know too? Was there no recommendation to increase the dose?
Hello SnazzyD, Really appreciate your response. In answer to your questions, yes I was on 40 mg pred at the time. That is what I was started on when I was diagnosed but as soon as the eye sight loss happened I took an extra 20 and an aspirin and then made my way to the hospital. Eyesight returned after a few minutes but in the car on the way it happened again-- and lasted around 15 minutes. After the 3 days IV infusions I was prescribed 60 mg. I would say that the symptoms after each reduction were probably temporary withdrawal but lately symptoms have been staying and worsening. I would say I felt really good when I was on around 15mg. My blood tests in January were a routine check so I was disappointed with the result, but not totally surprised as I had not been feeling good. My Rheumatologist asked for repeat bloods before recommending increase in dose. I am waiting, results today hopefully. No--have not been advised what to do in the event of a flare, I will ask when I talk to him. Both my GP and rheumy are aware of my symptoms.
The fact the symptoms are staying suggests some action. It isn’t unreasonable to recheck an abnormal blood test to make sure it isn’t a blip, but the fact stands that you are not feeling well. I hope that they treat your symptoms. I don’t know how quickly you went from 15mg to 10mg but if you go too fast you’ll never know with any accuracy where your latest minimum dose is which looks like it’s not 10mg yet. To support your recovery re diet, it’s worth looking at the numerous discussions on the forum by putting words like turmeric, anti-inflammation diet etc into the search box.
Thank you .I went from 15>12.5, then 10mg. I agree 10 mg is too low ,still waiting on latest results but hopefully will just go back up -- and revert back to anti inflammatory diet.
You are never reducing relentlessly to zero - you are looking for the lowest dose that manages the inflammation as well as the starting dose did. To have gone from 60mg to 10 since last May is incredibly fast by most standards and you have simply overshot the dose you need. It may be you need 11mg - you have to find out by a slow taper from 15mg
I wouldn't accept any steroid sparing drugs yet - you are at a relatively low dose and GCA doesn't go away overnight, it is prone to flare for the first 18 months. In the UK the regulations for using tocilizumab/Actemra are very strict - only for a year and only for people who have had relapses.
Thanks for that . I really don't want steroid sparing drugs. I was predominantly looking for any advice re what could help alongside pred e.g. diet, turmeric etc and wondered if anyone had any other suggestions.
I'm just popping on again...reading all the comments and still learning every step of the way. It is exchanges like this that remind me of the knowledge and assistance available on this forum....🕺👩🏾🤝👩🏾👭👩🏼🤝👩🏼👩🏽🤝👩🏻👩🏿🤝👩🏻👩🏾🤝👩🏽 I'm so grateful for the help of all these folks on my GCA journey!!
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