Hello everyone. I was diagnosed with GCA/PMR in September last year and I am really struggling with it all. I had a little window of feeling great in November but that's about it. I have had a headache for most of this year and I wonder how do you know if you are having a regular headache or if it's a flare up of the condition. All my markers have stayed low but the rheumatologist said you can have a flare up with low markers, so that threw me. I have read a lot about gca and pmr but everyday I realise that I still don't know anything. The rheumatologist is too busy to spend any time with you and it takes a week to see the GP. I feel so alone and lost and yes, feel a bit sad and sorry for myself.
I'm 62, married and legally blind for about 20 years so I have to get myself around on public transport. I have just had the flu for 5 weeks which has knocked me around a lot and have come out of it with an excruciating headache which I have put up with for a week. I have been on 10 mg of pred and so finally yesterday I took 15mg which has helped. The rheumatologist is busy and my next appointment is September. But all he seems to do is say take more of everything anyway, and the GP is afraid to change anything that the rheumatologist has ordered so I can't get much satisfaction there either.
How do you know if you are having a flare or is it just something else?
What do I do when I get an infection such as the flu? Does anything change treatment wise?
Will an infection trigger a flare?
I don't know if any of this makes sense, I have brain fog and interrupted memory a lot of the time and struggle to get clarity but if anyone can shed some light for me I would be grateful.
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julianne3
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Your questions about properly recognising a GCA flare plague us all at one time or another. Fear and worry/ panic seem to be the trigger for hospital. Alongside, eye pain, head pain, jaw claudication.
With you I'd venture a guess that your very bad bout of Flu has knocked you sideways and as you have an Auto Immune disease and this is what you are experiencing now, I mean the after effects. It would trigger a flare it's text book stuff, but not always, but it would make your recovery from a virus much slower.
Doctors have limited options with our diseases, basically more Pred or less Pred and medications to deal with the side effects like raised blood pressure, the depletion of Calcium etc. sometimes Steroid Sparing drugs and drugs to help prevent Osteoporosis ( the last two I am trying to avoid due to side effects).
Inflammation levels in our blood are not even a reliable indicator of how we are. This can be an isolating and scary disease, hence the life line we have in this site where the knowledge, wisdom and care for each other is astounding.
If you think you are experiencing a flare then it is down to you to increase your dose until you reach the level of comfort you experienced when first diagnosed. Not the blessed window of feeling great, just relatively out of pain and lack of mobility. Ring the Rheumatologist for guidance.
When were you diagnosed with GCA? If it was only 7 months ago you have reduced your steroids very quickly and by a huge amount. The dead slow nearly stop method preferred here will help things once you are stable.
I am sorry that you are feeling, sad, lonely and sorry for yourself, you have very logical reasons to feel this way and it will lift I promise. Rest, pace yourself, increase Pred. Whatever it takes until you see your Rheumie in September. You need to be kind to yourself and do things that make you happy. These diseases are an endurance test and you have already faced a major one of those with your eyesight.
Sending you strength when you need it and love because we always need it. 🌺
Thank you for your gentle and comforting reply Jane, it felt like a warm hug actually. It was the rheumatologist who reduced the pred and it was down to 5ng actually but I had increased the dose myself a couple of weeks ago. I appreciate your advice about going slow and I will try harder to listen to those who have first hand experience from now on.
I'm sure others with more knowledge than I have will be here soon with more advice. We all need someone to talk to or a shoulder to cry on and this is the place you can do that. I do hope you continue to feel better on your increased pred even if it feels like one step forward, two steps back. All good wishes. 💐
Yes we sure do need some one to talk to and I did ask my GP if he knew of a support organisation for this disease but he said "no and I wouldn't recommend one anyway." So I have changed to another doctor who is closer anyway. Thank you for your reply.
Sometimes I wonder;… Do doctors think they, and only they, have all the answers to our questions? And don't they have anything to learn from OUR experiences? And why on earth did he first say that he didn't know of any patient organisation and then didn't recommend something he knew nothing about? I know it can be hard for us to tell the dr.s that the sort of knowledge they can give us is not enough. It isn't enough for me to know only about the medical aspects of the conditions I suffer from. I also need practical advice about how to live the best Life I can with them, and most important, how to manage the new economical situation. As for my self, I know that as a reg. nurse I tried my best to give good advices to patients like where they could get help with practical problems and other things. That has given me the courage to stand up for myself and to tell the specialists I meet what I expect from them. Of course, they can't always meet my demands, but then I tell them to give me an explanation of why they can't do it. I try to keep myself calm, composed and determined. Not always easy that, of course, but it works. (and if the dr. answers me arrogantly, I answer back in the same way, and THAT works. At least here in Norway😬)
Yes, that is true. Sorry, didn't mean to sound like a grumpy old bat😖. In my own situation right now, all the specialists I have met have really done their best for me❤️
Ha ha, it didn't occur to me that you were grumpy Bitterbitt, I know what you meant and you didn't come across as grumpy at all, only caring. It is very frustrating though when you come across the one who doesn't want to help you.
The OMERACT conference was set up to develop outcome measurements for clinical studies. At an early one they realised that the people best able to say whether an intervention achieves a useful results are the patients. I don't particularly care that a given treatment makes a blood marker fall if I don't feel any better or it even makes me have an unpleasant side effect. So 10% of the 200 delegates are patients - and we are treated as equals. Our vote means the same as the head of rheumatology at the Mayo's vote. In fact - the patients' votes may even be given a higher weighting in some cases.
I live with the disease every day - it is my pain and problem. They don't and it isn't - it is easy to dismiss me.
I am 69 and have GCA and PMR. It is also assumed that I have a sort of non specific vasculitis. I was first struck down in 2012 with a mystery illness which damaged my lungs and resulted in Brochieactasis (at that time I had a Weakly positive C Anka).
I will give you a brief personal history to demonstrate how I empathise and relate to your story.
Since 2012 I have had blood levels can be normal until steroids are very low or stopped. At one stage I was transferred from the vasculitis consultant too a rheumatologist who because bloods were normal ignored the fact I said I felt so ill and suggested I was psychologically dependent on steroids (at this time I was on 26 mgs pred daily). I was struck down with heart symptoms and hospitaled my CRP rose to 123. Athis point I think she was convinced I was genuinely ill.
I have at various times had Methotrexate, Rituximab but they have made no difference.
The most difficult thing to deal with is the lonleliness and isolation. Mostly I look 'normal'. It is difficult to plan or arrange anything because of not knowing if I will be able to physically do what has been arranged. 'Friends' no longer phone.
Twoof the GP's at my surgery are very understanding and I self medicate as much as I am allowed and ask to see one of two consultants in the vasculitis clinic I am attending.
I am currently taking 26 mgs pred daily in addition to 200mgs hydroxichoroquine. I have osteoporosis. I am reducing pred dose very slowly to try and avoid the lung problems which kick in once I get below a certain dose.
I was so pleased to see your post as unlike your first reply I have not found it 'gets easier' quite the contrary.
I agree that your current dose of pred is very low.
thank you for taking the time to reply and share a little of your story, it sounds as though you have had a rough time of it and it has all been a huge struggle.
I know what you mean when you say it's difficult to plan anything, I had to turn someone down last week and told them that I am too unreliable at the moment. I have stopped ringing my friends because I'm not sure if I will be able to see them. Sounds lame as I am writing this but I don't wnow what tomorrow will be like. I thing my husband is getting frustrated too. I'm just taking a day at a time but was thrilled to come across this forum.
Nothing like a headache to really drag one down, it colours everything. I'm not surprised you are feeling down. My GCA headache was never a normal headache that feels like it's in the brain. It just felt like acid had been poured onto the the surface of one side of my head and some poking gently with a cocktail stick on the other. However, I have read others saying they have had a full on headache. So, as per usual with this darned condition, everyone's different. If it is a GCA flare proper, 15mg probably isn't enough, given the lowest starting dose for GCA is 40mg.
I can relate to the feeling isolated by inaccessibility to medical help, not that it is much help at all sometimes. The one thing they can't do is tell you what is right for your body specifically and for you to do that, it takes courage and experience, something that's in short supply at first. After a few complications like this, hopefully you get to know for next time how it'll probably go and it shouldn't be so scary. That's my theory anyway! Sounds like your body does need some extra Pred to carry you over this episode, but I'm sure those more expert will reply soon. Just a thought, has the flu left your intestines upset as it can do? In other words are you absorbing properly?
Wow! That description of your headache sounds horrible SnazzyD, I hope you don't have to go through that very often. I was trying to describe my headache to my husband this week and all I could come up with is that it felt like I have been hit with a baseball bat. You know that sharp bang where you see stars? It is amazing how different everyone's experience is. I am feeling a fair bit better today and just a dull ache now but my eyes are hurting. My gut has been pretty upset, whats that all about?
Ah, what I meant by acid was a burning more on the surface rather than a headache inside. The severity wasnt on the level of feeling incapacitated, however, I did feel like I was on anther planet.
Your headache - did it start with the feeling of a bang, before the pain started? if it did, then it would be advisable to get it checked because it could be something called a thunderclap headache which has a different cause.
Oh yes, I did understand what you meant by the surface pain.
No it didn't start with the feeling of a bang, more like quietly sliding in and increasing intensity over the days until so severe you wonder who hit you and when.
Hello Julianne, and welcome. I, too, was diagnosed in September 2016, but with PMR only, not GCA. By my reckoning, I had the illness about 7-8 months before diagnosis.
I have had one bout of flu since having pmr, and for me the effects and recovery time were greater than I'd experienced in the past.I suppose this is inevitable, as the immune system that would normally try to fight off such viruses is in a weakened, faulty state due to the pmr. And, of course, having just flu on its own can leave you feeling very low. I did up my pred dose - just by 1mg, for a couple of weeks - and found that helped me feel better.
If you were diagnosed with gca as well as pmr, presumably you started on quite a high dose of prednisolone? If so, you really have come down very quickly, and that in itself could trigger a flare up of the inflammation. When I was diagnosed (on symptoms alone, blood markers were hardly raised so I am yet another "atypical" case!) I was put on 15mg daily. Now I am just tapering down to 10.5mg using DorsetLady's 5 week tapering plan. With gca, the starting dose would have been much higher. What was your situation? If I have understood your post right, your blindness was not caused by gca. I'm certainly no expert, but I imagine that if your condition really is gca, you would get the headaches/jaw problems etc that are associated with it anyway. If severe headaches are continuing, I would say it's a good idea to get this checked out asap. Hopefully the more experienced folk on the forum will come along with replies shortly.
This really can be an isolating illness, difficult for family and friends to understand fully (the "but you look so well" syndrome!), and there seems to be such a lack of understanding amongst some of the medical profession too. I do hope it will help to share questions and frustrations with fellow sufferers on this forum - there's such a wealth of experience here! Hopefully, too, as you recover from the flu, you'll be able to get back on track with managing your symptoms. If I had such little active support from my medics as you seem to have, I think I wouldn't hesitate to tinker with my doses as necessary, just by trying to gauge my symptoms and working at pacing my activities so that I didn't overstrain myself. It's such an individual thing - for some, the pred works more effectively and quickly than others, and it really is a case of listening to your body.
Hi Patience, thank you for your flu story, I was so unsure about what to do I was racking my brain trying to think of who I could call to ask 'what should I do.'
I'm still not sure where GCA ends and PMR starts and how they work together but hoping I'll learn more now that I have found you all.
You are right, my family and friends don't get it at all because I dont look much different except definitely older. They don't ask any questions because anything I have told them sounds a bit too weird so best to just ignore the whole thing.
As a post GCA person, I would be a bit concerned about your continuing headaches. Guess your starting dose was at least 40mg, maybe more, so to be down to 10mg is quite quick, but doable providing you have no symptoms. Unfortunately you don't seem to be in that camp. You say you felt good in November last year, as a matter of interest what was your dose then?
Your Rheumy is right, you don't always have raised markers in a flare - and it works the other way I had raised markers, but no flare! That's why we say that blood tests are not that reliable in every instance - and that symptoms are always the key.
When is a flare a flare? Difficult question sometimes, but usually it's a return of your original symptoms pre diagnosis, and may come on a week, or even longer after you've reduced below the level of Pred your body actually needs.
If you get flu or anything, even much minor like a cold, sore throat etc your body has to work harder to fight the infection, so your inflammation levels naturally rise even more. That in turn can mean you need more Pred temporarily, it doesn't necessarily trigger a flare but it will make you feel worse overall! So maybe it feels like a flare. It's so difficult to know sometimes what is caused by what, no wonder we get confused.
Just as an aside, unless you have other reasons not to, suggest you get a flu injection when the time comes - usually around September, October time.
I think many GP, especially if they haven't come across it before, are frightened of GCA and don't want to be seen to be contradicting the Specialist! Doesn't always help the patient though.
I would stick at the 15mg for a while if it made things better, and just gauge how things go. Nobody want to take more medication than needed, but as we're often saying to people, there's no point in taking Pred at too low a dose - you're getting the side effects, but not the benefits.
Do you gave a support group in your vicinity you could attend, it does make a difference if you can meet others in your situation. If you look at the PMRGCA main website you'll find a link to local groups.
I'll message you my "take" on GCA/PMR - it's a bit long and may be repeating what you know, but it may help.
It must be lovely to be able to say you are a post GCA person, I can't wait for that day.
I started on 50mg of Panafcortilone and did taper off very quickly but I was under a Neurologist in hospital (September 2016) and no one was telling me anything. Within 2 weeks of being home I was down to 5mg and the pain returned. It sounds logical now to increase the pred but I was new to this and followed instructions to the letter.
The window of feeling great strangely enough was 10mg. I will definitely stay on at least 15mg since I'm hearing that confirmation from everyone here that has replied to my post.
I don't have any support groups anywhere here which is so disappointing I have even thought of starting one myself just for people to get together but i'm not sure how to go about it.
Thank you so much for the information you have sent, I will do as you suggest and read it slowly and try and digest it thoroughly.
If you want to contact people near you there are a couple of ways of doing so,
Try tapping your name on bar across top, it will give a drop down list - select "people near me" - and you see people in your area,
Post asking if anyone is near to you, just give town or if a city your suburb, and interested in meeting up. Doesn't have to be anything particularly organised, a cuppa and a chat in a local cafe is just as beneficial as a formal meeting.
If you suggest people contact you through the message facility rather than the open forum, then information is just between you and them. Some people don't want a formal setting, but most won't say no to a cuppa!
Fair point! But there are a few for sure, and although distances are obviously the great problem you still may be able to speak to someone on phone if not actually in person.
You could still put out a post though - asking for Aussies to contact you. Nothing ventured, nothing gained!
Yes, an infection can trigger a flare and that is very probably what has happened. You are possibly at about a dose where slightly more might be helpful in an infection to compensate for poor adrenal function but you got through that infection. It's the aftermath you are looking at.
What dose were you started on? Whatever dose it was, if it was a typical one for GCA, to have got to 10mg by now is pretty good. Pred itself can cause headache. If you are already visually impaired how did they diagnose the GCA? Was it just on symptoms or was a biopsy done and positive?
If your rheumy "just says take more of everything" - did he tell the GP that? If 15mg helps a lot - I think you have your answer. And don't be scared of going up a bit further if you need to for comfort. I have been on that sort of dose for a lot of the last 8 years and I haven't crumbled! To be there in less than a year after diagnosis is nothing to get uptight about.
I was started on 50ngs. I actually had a particularly severe case of the flu last year in May (I never used to get sick at all) so this was a surprise and a difficult one to get over. The headaches increased and included severe neck pain. My husband kept telling me to go to the doctor but I was on the final assignment on a degree I had been doing and could not afford the time away from my desk. To get public transport anywhere and then home takes up most of the day for me.
The pain kept getting worse and took over my shoulders, arms, back until I was unable to move at all. I realised this was something more serious and finally said "get me to the hospital." Over the next 3 days I had bloods done as well as every x-ray and scan possible and temporal artery biopsy which was positive.
Within 2 hours of being in hospital they had given me 50mgs of pred that fixed everything. But as I have explained to DorsetLady above, the taper off after discharge was too quick and the symptoms returned.
When I saw the rheumatologist on 2nd February, I told him I had had continual headache for a week and he said not to worry I'll see you in May.
My eyes have been very sore as well 24/7 and I saw an Opthalmologist who said put some eye drops in because they are probably dry and you have early cataract but since you are vision impaired already we won't do anything so I'll see you in 2 years.
I feel very frustrated.
Thank you so much for taking the time to talk to me in this way, you are all wonderful and very valuable resource for us all.
I forgot to mention that I am also having fevers and chills continually throughout the day and night consistently. They are so severe they make my whole head throb and I can't sleep.
The NE of England support group has a DVD called "You are not alone" which was developed to explain to patients, friends and family what this all does to us. They also have a booklet.
This is the direct link to the shop but you can then explore the rest at your leisure:
and on p346/side 6 in Table 5 you will find their suggested tapering scheme in GCA. Really rather slower than what you have done and perhaps worth discussing with your GP.
I really do think you need to be on a much higher dose - the sweats and chills suggest to me at least that the actual disease process in GCA is still active and you aren't on anything near enough to manage the symptoms. Which is a bit pointless.
Where are you? Maybe someone is close enough to go to you - rather than you going to them. You won't be anywhere near me - but if I were I'd be round for a cup of tea
Where? Not sure if there are Aussies on this forum but there are a few on the patient.info PMRGCA forum. I hope I'll be near Sydney next May for a rheumatology conference.
I knew you wouldn't be near me - I'm in Italy. No support groups here - and I won't be starting one here either!
I took an extra 2mgs this morning - I know, I can see everyone rolling their eyes at me but I thought I would keep adding small amounts until the pain stopped. So that's 17mgs now and I am actually feeling much better, even, dare I say, a little more normal. The headache is gone.
No, I'm a patient research partner so hopefully will get to go to this conference again where 10% of the delegates are patients. It was in Whistler last year - and I spent the week learning what I had to do in my role. Next time I can enjoy the conference...
Hello again julieann, I've just had another thought about how to try to get across to family and friends just how this illness can affect us. It's really a way of explaining the chronic and sometimes deathly feelings of fatigue that can affect sufferers of auto-immune problems - it's called The Spoon Theory, and if you google it you will find the author Christine Miserandino's website, which explains it in detail. It has to do with needing to pace ourselves so that we can carry on functioning without over straining and suffering days of being "wiped out".
I know it won't help much with the pain, or the after-effects of flu, but for the future it might help your near ones to understand a bit better.
Thank you so much Patience, that is very thoughtful of you. I read through the spoon theory and it makes such good sense so I will definitely give it a try. It is the fatigue that is extremely difficult to explain isn't it especially when you don't look much different on the outside.
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