GCA worries update

[JustKath]

Well I’ve just been discharged from A & E and I’m still none the wiser to be honest!!

I was reassured at first because I was given 60mg pred, had blood tests and was sent for a precautionary CAT scan of my head. I was told by the doctor, who I didn’t see again, that this was normal with suspected GCA. I then waited and waited, lying on chairs with a terrible headache and jaw pain (which has been slightly better in the last hour) - A & E was packed......!!

Then, because it was so busy I think, I have just been sent to see a medical doctor in the out of hours clinic, instead of an A & E doctor again. She said it was highly unlikely to be GCA because of my age, my blood tests were all fine and the ultrasound of my temporal artery (over a month ago) was clear and the fact that these headaches had been coming and going since the end of August. She said if it were GCA the headache would just stay and not come and go. Is this right?

She then said my CT scan ruled out anything else causing my headaches and said maybe I could be referred to a chronic headache clinic.

I said I had only had this type of headache 3 or 4 times since the end of August and my concern was that I already had polymyalgia (which she knew) and the possibility of GCA. She dismissed my jaw pain and hoarseness / sore throat as being to do with Sjogren’s.

Then she offered to prescribe me amitriptaline for my ‘chronic headache’ which I refused as I don’t want unnecessary medication and know it has the side effect of a dry mouth which I already have due to Sjogren’s!!!

So I’m still worried - is the headache now slightly better because I had 60mg of pred 3 hours ago? Should I be driving home? Why was I given it as a precaution and then given no definitive test for GCA? The initial doctor I saw knew about the negative ultrasound!!!

I’m still worried, fed up, upset and now have to drive 30 minutes home.

Please could someone reassure me????

[PMRpro Ambassador]

I'm so sorry. This is always a risk I'm afraid. She sounds like the sort of doctor who is blinded by an existing diagnosis and happily blames everything on that.

How old are you? Though how you can be old enough to have PMR bit not GCA defeats me!

Has the headache improved at all? Do you know if the medical doctor was a rheumatologist?

[JustKath in reply to PMRpro]

Thank you for replying. I’m home now.

I’ll be 50 on 2nd January. The improvement in my headache and jaw pain in the last hour is amazing! My jaw pain has practically gone now, the tightness around my throat has lessened and my headache is just a dull headache now. Is this a good or bad sign???

[PMRpro Ambassador in reply to JustKath]

Depends on the way you look at it! It is another brick in the wall for diagnosis of GCA - typical symptoms relieved by high dose pred. But you had a doctor who missed it.

She can't say age rules it out - 50 is what they say everywhere but that doesn't mean you can't have it younger, it just means it is less common. But no-one told GCA it can't happen a week before your birthday!

I'm not sure what to advise. The doctor you spoke to this morning would have been good but the chances of that are minimal I suppose. If the symptoms return after about 24 hours then you need to speak to a doctor very urgently and get more pred. But if you were to go back to A&E and got her again it wouldn't be good. 111 and speak to a doctor might work.

Where are you? Which hospital was it?

[JustKath in reply to PMRpro]

I’m in Warwickshire and it was Warwick Hospital. I will monitor things and keep notes as DorsetLady helpfully suggests. I do have the Alexander Hospital in Redditch, Worcestershire not much further from me in the other direction. If things get worse again (which they hopefully won’t) maybe a change of A&E may be an idea?

[PMRpro Ambassador in reply to JustKath]

At least you have another option.

[JustKath in reply to PMRpro]

Good morning PMRpro and thanks for your help yesterday. I’ve just remembered something else that the final ‘medical’ doctor said to me that did actually reassure me a bit at the time. She said that it was highly unlikely that someone would develop GCA whilst on 20mg of pred for polymyalgia. Please could you tell me if this is correct?

[PMRpro Ambassador in reply to JustKath]

That is a common misconception! If that were true, then they would only need to use a 20mg dose for GCA wouldn't they? I'm sorry, I know that isn;t what you want me to say.

The actual disease process continues - the pred has no effect on that at all. If you ask others with GCA diagnoses you will find that in the early stages they needed more than 20mg to combat the inflammation and may have flared at doses well above that while trying to reduce the dose. If the disease process has moved from the PMR regions to the GCA areas of trunk and head, then it may need more than you were on to manage its effects. It all depends on how much activity and where it is.

Having now read all your conversation with DL last night, I agree with her, the more you say, the more it sound that GCA is a very real possibility and you need a rheumatologist or eye specialist who knows what they are talking about.

[JustKath in reply to PMRpro]

And the doctor was just a general medical doctor not a rheumatologist...

[DorsetLady PMRGCAuk volunteer]

Oh dear...obviously a busy Friday night in A&E...and not a particularly satisfactory ending.

She is partially correct in that a GCA headaches doesn’t usually come and go - once you’ve got it, it’s there all the time although it can wax and wane a bit.

Yes you can drive, but I think because you are still upset by the whole thing, if you can find some quiet (some hope!), have a decent hot drink and calm down first it would help.

But I suspect you just want to get home - understandably - but please take care. 🌷

[JustKath in reply to DorsetLady]

Thank you but I’m home safely now x

[DorsetLady PMRGCAuk volunteer in reply to JustKath]

Good - now have a nice hot drink.... or slightly stronger if required. 😉

[JustKath in reply to DorsetLady]

I’m dying for a cup of tea to be honest!! But concerned that the head and jaw pain are so much better and that this may be down to the 60mg pred about 5pm - do you know if this would work so quickly if it were GCA??

[PMRpro Ambassador in reply to JustKath]

It can do judging by others on the forum.

[DorsetLady PMRGCAuk volunteer in reply to JustKath]

Probably - can’t exactly remember how long my 80mg took, but certainly not all that long - hours rather than days.

Plus of course some of it may have been due to tension as well - and although you didn’t get a definitive answer some of the tension will have been reduced.

Might be a good idea to keep notes of how you feel over the next 72 hours or so - for your info as well as for next time you see doctor. And try and have as quiet a time as you can.

Hope you have a good night’s sleep - let us know how things go over the next few days.

[JustKath in reply to DorsetLady]

Thank you. I’m in bed resting now. Not sure how I’ll sleep though - I was so exhausted earlier but now the pred has kicked in.....!! Keeping notes is a good idea, I’ll definitely do that. Just wish I didn’t have so much to do before Christmas. Don’t think I can do it all, especially the housework, but my partner will expect it to be done and I want to make everything nice for my two sons who are 18 and nearly 17.

[DorsetLady PMRGCAuk volunteer in reply to JustKath]

Your partner will have to do some then - and your sons are big enough to be told you’re not very well and need a bit of help - and are quite capable of mucking in and helping!

You have to look after you - for a change - and I know that’s not easy, but it had to be done sometimes.!

Christmas Day doesn’t have to be perfect (like the ads on tv) - so long as there is food on the table and gifts to open it will be fine! Just enjoy!

[JustKath in reply to DorsetLady]

Thank you x

[JustKath in reply to DorsetLady]

Good morning DorsetLady. I’ve had a good 5 hours sleep so that’s something!

I would just value your opinion on a point you made earlier that GCA headaches don’t usually come and go. When I think back to the headaches in my temples, they have all initially improved as a result of steroids. The first one was actually when I was in Spain at the very end of August. I had had the jaw pain (which has always come and gone) and then this seemed to spread upwards into my temples and scalp and it got to the stage where I could hardly move my head it was all so painful. My friend who lives out there persuaded me to see a spanish GP, with her help, explaining that I was on Naproxen because of the jaw pain due to Sjogren’s and now had this awful headache. He said I needed a stronger‘anti inflammatory’ and before I knew it I had had a huge dose of corto steroids in my bum!! Within a couple of hours I felt human again.

I felt a bit better during September but the polymyalgia symptoms started, the neck and shoulder pain, lower back/girdle pain, upper arm pain and weakness, finally spreading up the back of my head and into my temples, giving me a painful scalp. I was bedridden for days before venturing to my ‘helpful’ GP. She didn’t give me steroids immediately but did mention PMR and monitored me, finally starting me on 15 pred which was increased to 20 that settled things down relating to the PMR symptoms anyway. The jaw pain and nagging headache did not disappear completely and then flared up again on Wednesday, the rest you know...

[DorsetLady PMRGCAuk volunteer in reply to JustKath]

Morning,

Glad to hear you had a few good hours.

I would say (and of course it’s opinion only not fact) that the more you tell me about the headaches the more like GCA it sounds. Is your scalp now tender to the touch? Does it now hurt to brush/comb/wash your hair at all?

Your description of neck pain creeping up the back of your head to your temples replicates mine - except my temples per se weren’t affected, but the pain then seemed to travel down my face in two parallel lines straight through my eyes to my jaw (does that make sense?)

Does jaw hurt when you chew - and then go away when you stop eating?

I see you told PMRpro you have enough Pred; -20mg per day for a week - is it possible to get a script on Mon for more?

I do think you need to impress upon GP or whoever that despite what the hospital told you it does sound very much like GCA - sorry!

[JustKath in reply to DorsetLady]

Thanks for replying. My jaw pain and headache are creeping back now although I’ve taken my 20mg pred early. Would the 60mg about 15 hours ago be wearing off already?

The jaw pain is constant but worse with chewing or talking for a long time. My throat feels constricted as well. Almost as if someone had a finger either side of my trachea, right on the pulse point. I should point out that the jaw and throat symptoms have been present for months but feel worse. I have had my throat checked out by ENT.

As for my face, and this started this week, I have almost like sinus pain, which then turns into a toothache above my top outer teeth, my face is tender to touch in these places.

My temples are a little tender to touch and the lower back of my head on both sides, but massaging them gives me pain that almost ‘alleviates’ the headache for that brief period if that makes sense?

[DorsetLady PMRGCAuk volunteer in reply to JustKath]

To be honest not totally sure about the throat & sinus type face pain - personally I didn’t have either, but that’s not say others haven’t as part of their GCA.

Quite possible the 60mg is wearing off - but having said that, if it’s NOT GCA then Pred wouldn’t be helping. I really think it needs more investigation- not what you want to hear I know.

Perhaps you should ring 111 and get a second opinion- you can then explain what has been done and what’s happening now.

[JustKath in reply to DorsetLady]

Thanks DorsetLady. I have been thinking of phoning 111 as the 60mg pred definitely helped and I’m sure it is wearing off now. I’ll see how the next couple of hours go.

[DorsetLady PMRGCAuk volunteer in reply to JustKath]

Please do!

[PMR2011 in reply to JustKath]

I actually did not have a headache or jaw pain with GCA but did have sinus pain. It felt like when one has a cold and is descending on a flight. Pain and pressure but not clogged.

Your symptoms do seem to fit, sorry. I developed PMR when 51 then GCA a few years later, so you are not too young!

Do take care of yourself. OH and Sons expectations are going to have to change. Which will actually be good for them!

Keep us posted.

[PMRpro Ambassador in reply to JustKath]

And quite big enough to help mum when she isn't well. If he were my partner he'd have to carry on expecting I'm afraid. Dust is very patient - it will always wait.

Have you plenty of pred to keep taking it until Monday?

[JustKath in reply to PMRpro]

I’ve enough for 20mg per day for the next week I think.

[Portobello]

So sorry to hear of your unsatisfactory experience at A&E- have been thinking about you all day. At least you've now had 60mg as a precaution- what did they advise re dose? Drive safely and try to have a calm night's rest. See what tomorrow brings.

[JustKath in reply to Portobello]

In the last hour my jaw pain and headache have improved dramatically. I’ve just been told to go back to the 20mg dose now.....don’t know what to think really??

[DorsetLady PMRGCAuk volunteer in reply to JustKath]

Well - as I said above -monitor things and if it worsens you know what to do. Hopefully it won’t- and the 60mg will help.

[Grammy80]

PMRpro and Dorset Lady are sharing some wise words. I went to a general practitioner July 30 of this year with the same symptoms...the most curious one being the jaw pain. Yes, the prednisone can reduce the intensity of those symptoms quickly...GCA does usually respond very well to prednisone in a fairly short time period. I was given 5 days of prednisone that day but seven days later I was at the hospital with serious sight issues. Like the others, who are probably more tactful and subtle than I...I hope you see a rheumatologist.

Do they do a biopsy of the temporal artery as a diagnostic tool in England? That way they see the inside of the artery and the 'giant cells' if that form of vasculitis is present.

I'll keep you in my prayers and hope to hear something definitive from you soon.

[JustKath in reply to Grammy80]

Thank you Grammy80. I do still feel uneasy. Yes I believe it is the usual diagnostic tool but ultrasound is starting to be used more regularly as a ‘first’ test. However, I think that if this is negative, it can be followed up by a biopsy if GCA is still suspected. Please someone correct me if I’m wrong?????

I’m going to monitor things today. x

[SheffieldJane]

I wonder if your GP would give you another prescription for a GCA dose if you quote the first doctor you saw at A&E. They don’t like to look as if they are missing something that could cost a patient’s eyesight. The three men in your family are looking a bit shabby at the moment. You seem to be battling this alone. I hope for your sake that they catch on quick, and are sweet really! Keep us posted.

[JustKath in reply to SheffieldJane]

SheffieldJane thank you. My sons are away this weekend, my eldest since Wednesday. My eldest is helpful around the house to a point, my youngest not, but I think they both dismiss my pains and fatigue - the fatigue has been going on since the Sjogren’s symptoms started in 2016 but has got much worse with polymyalgia. I have always pushed myself through the Sjogren’s fatigue, napping in the afternoon and then just getting on with stuff. The worst that happened was a few aches and pains which I coped with. It seems different now with polymyalgia though, not only is the fatigue worse, but if I push myself I feel terrible physically. My partner, well, let’s not go there just now..... xxx

[HeronNS in reply to JustKath]

In your shoes I'd just go to bed. I wouldn't even try to organize them to pick up the slack because that will be even more stressful for you. They want Christmas, they've observed you do it for years, they can muddle through!

[SheffieldJane]

Oh JustKath! What’s the biggest job your boys could do over Christmas? There’s hope for them yet. Could they cook a pared down Christmas dinner under your firmly seated guidance? You need to explain these horrible diseases to them and their potential consequences. You need so much wise support in your life that you just aren’t getting. My own son who we visited at Edinburgh Uni was so helpful, cases, getting me in and out of cars and up and down steps. I think he’s been reflecting since he’s been away. I hope yours has had an epiphany too. I feel worried for you.

[Dilly-B]

I really feel for you.

[JustKath in reply to Dilly-B]

Thank you Dilly-B. I really appreciate your support and everyone else’s who has shared their support/experience/knowledge. I don’t feel quite so alone now x

[Grammy80 in reply to JustKath]

You aren't alone anymore!! I am alone, and this group has filled a place in my heart and kept me supported! I was definitely at the point where... I just didn't know how many more times I could go get up in the morning and go through another day! Everyday was the same old movie! Everyone walks with you here! XO

[Daisyfield]

That sounds really tough.

It sounds as though your family need to know how you feel and the potential seriousness of the situation.

Can you write a list of the things that need doing and share them out?

If OH go out to work they often don’t realise how much work goes on behind the scenes.

I am self employed and so have cut back on work to get Christmas ready. I have pointed out how much I have done. Even online shopping takes time.

Even writing a long list shows how much there is. Then you can decide together what things are worth leaving.

We are having friends round. I usually do a three course meal but I’ve said we’ll have soup and bread. Just trying to reduce work but still meet up w friends.

Look after yourself.

GCA is serious as we know.

Also write out things that would help on Xmas day. Sounds like you have to spell it out a bit.

Hope things work out.

X

[Kath567]

I totally get your frustration. I was 53 when I got PMR basically overnight, then came down with horrendous headaches and jaw pain shortly after, within weeks. I was told I was too young for GCA but the jaw pain and headaches were so severe I was given a temporal biopsy.

From October to February I nearly went out of my mind, actually they started thinking I was imagining it until the doctor witnessed an attack. I was unable to work for six months.

I went through Pred withdrawal so severe I couldn’t walk, going from high 75 mg doses to 20 suddenly. I had seen 2 dentists and ENT, admitted to hospital, neurophthalmologist, etc.

Finally begged for an MRI, bingo, massive jaw infection from cracked molars on both sides.

How in the world did that happen? Btw an ultrasound showed a tumour in my neck. I could have died from sepsis. I too have other autoimmune conditions.

Just sharing my experience because if I hadn’t been persistent, I wouldn’t likely be here today. My son and daughter were my angels, the only ones there for me. Keep pushing for answers, take it easy over the holidays and all the best in getting the right diagnosis quickly.

[Luciejc]

Wish I saw your post sooner. I had a biopsy of the temporal artery for my positive diagnosis of GCA.