What are these head symptoms - GCA or pred?

[todw]

Hi again. After two months on 20mg I'm still in the throes of beginners' confusion, and although I've now persuaded my dr to refer me (have got an 'urgent' rheumatology but not til 16th February) I am finding it difficult to stop worrying that I might have GCA or LVV, and feel like I'm spending my days waiting for something terrible to happen. I know the worry and stress won't be helping overall, so I wonder if anyone here can advise whether what I'm experiencing is the result of steroids or some underlying inflammation which hasn't been mopped up by the 20mg dosage.

I have a constant feeling of a tingly scalp, particularly on the top, and a dull ache at the back of my head and top of my neck. My head feels full of pressure. Sometimes the headache is much more painful than others. Mostly it's just dull. The tingling is the main symptom. The head symptoms have only come on since about a month into taking prednisolone. The first month was wonderful, but I guess that's the pred honeymoon everyone talks about!

On the one occasion I tried to reduce the pred dose to 15mg (too soon, probably) I experienced jaw ache, which disappeared when I increased the dose back up to 20mg again. Jaw ache had been the final symptom which emerged before I started taking the pred back at the beginning of November. The Dr sent me for an emergency eye exam at the time but there was nothing to see, GCA-wise, and I was advised to stay on the 20mg dose. At the time I didn't know enough about the spectrum of the disease to worry significantly about it, but looking back I can't help wonder if GCA was developing and if I should have been started on 40mg.

Does anyone else have these head symptoms on pred? The symptoms are not acute, which is part of the problem - I feel a fraud going to A and E, and if I phoned the out of hours I don't think they'd take me any more seriously that my own doctor's surgery, which I am also loathe to go back to as they clearly think I'm making a fuss about nothing. All this leaves me feeling very alone and confused.

I'm hoping to get a private rheumatology appointment but even that won't be til mid January at the earliest, which leaves me feeling a bit stuck between a rock and a hard place. Am I right to be concerned, in which case do I self-medicate and increase my own steroids to 40mg? Or does anyone have tips on how can I best approach the medical profession to get someone to take me seriously and address my concerns without just saying 'you're tense, your headache is just due to that'.

Thank you.

[jinasc]

Go to this website and read up on the symptoms and then if you still feel the way you do, take them to A&E and ask to see the Consultant in Charge.

pmr-gca-northeast.org.uk/us...

Do not wait till 6th February either, your GP can make a call.

[todw in reply to jinasc]

Hi jinasc. Thank you so much for taking the time to reply. I've seen this document and others like it before, and indeed I don't have the classic temporal symptoms, which is why I wondered if it might be steroids causing the discomfort.

My temporal artery is a little raised but not like hard spaghetti which is what my own dr wanted to see. I feel like my eyes are having to work really hard to focus, but there's no loss of vision.

However, I've read other accounts of gca/lvv which mention tingling scalp, occipital headache as classic but ignored symptoms, and put with the initial jaw pain it does feel like cause for concern. I'm already a bit (well, 1 in 5!) atypical in that I had no inflammation markers for pmr so that confuses the picture.

However you can't argue with symptoms, and all immobility disappeared with pred, so dr was happy to give pmr diagnosis. I was hoping for an easy ride, but it seems my body has other ideas!

[jinasc in reply to todw]

I replied the way I did as I came across a lady who had struggled for nearly 5 years and just could not get a diagnosis.

I sent her to a Consultant I knew because her symptoms although what seh told me was not quite classic but sporadic and sometimes fleeting. The Consultant read all the reports from previous medics of which she had copies and then came to the conclusion it was most probably GCA. It is now under control and progress, whilst slow, is being made.

Sometimes if you just tick some of the boxes the medics can struggle, and to me, all auto-immune illnesses are complex.

ESR and CRP can and do never move either up or down, they are useful if they do, but all they really do is say 'something is going on and we need to find out what'.

My CRP was useful, (ESR never moved) but when CRP went up to 242, the GP was knocking on my door at 8am. I looked at him as though he was daft.

Three days earlier, I had visited him for a pain and eyes looking a bit yellow, he diagnosed Jaundice and put me on anti-biotics.

I had also had an appointment with the Practice Nurse for a routine blood test on the same day. So when the result had come through, he had thought.............GCA flare and just go in his car with a supply of pred.

When I said, you saw me on Monday I have have jaundice remember we laughed.

I was the first patient with GCA and the whole practice were taking an great interest. He than shared half my bacon buttie with a cup of coffee before he went back to the surgery.

By the way, my temple artery was never like 'hard spaghetti'. A term I have never heard used before. I live and learn.

I never had TAB as 5 days on 60mgs meant it was too late to do it.

As an aside, have you been to a good optician? My optician, when I went to get my glasses changed, immediately wanted to send me to A&E and when I asked her why, she told me she suspected GCA. I then told her I knew and had been diagnosed two weeks beforehand.

Just remember this reply is from a non-medical person and we all need to yo make it plain that it is our personal experience.

GCA 5 years, and started 7th year of remission today.

[PMRpro Ambassador in reply to jinasc]

"my temple artery was never like 'hard spaghetti'"

After all - if the GCA ISN'T actually present in the temporal artery it ISN'T going be like hard spaghetti.

I think the preoccupation with the temporal artery amongst the non-experts needs to be calmed down. It was acceptable in the early days of GCA being described, it was what they could see on the patient, later the thing they could chop a bit out of and have a look at for the signs.

This

academic.oup.com/rheumatolo...

needs to be trumpeted from the rooftops - the top guys are finally thinking it and it must be brought to light.

[Nap1 in reply to PMRpro]

This was amazing. I will print it out and see if I can get my rheumatologist in New Jersey and Florida to read it. Most likely only New Jersey will read it. But it is about time. Thank you. This will help so many of us once a gets circulated.

[todw in reply to PMRpro]

Ah yes, I've seen this and have printed it out in readiness for next visit to dr or consultant!

[PMRpro Ambassador]

No, don't increase your dose yourself - that is to a very high dose and shouldn't be undertaken lightly. If at any point any of the symptoms you have mentioned get worse or you start to have any visual symptoms, then hot-foot it to A&E preferably - 111 takes a long time sometimes although they would be worth contacting.

Your reduction to 15 from 20mg would have been enough to cause unpleasant symptoms on its own - that is 25%, a big jump. Next time try 2.5mg but that isn't in the near future.

Where are you? There may be a fast-track option near you. Or a private rheumy who would be likely to see a patient with ?GCA immediately - which is what should happen - but these days in the NHS it is EMERGENCY that is the word to use, not urgent.

[todw in reply to PMRpro]

Thank you pmrpro. I'm in Cornwall. All the private rheumys are on leave until Tuesday or Wednesday but hopefulIy one of them will call me back then, although I already know from an answer phone message that one of them has no appointments into until the 15th. In the meantime i will heed your sage advice and not self prescribe. It's so frustrating having to wait, and feeling not listened to, and feeling that something is Not Right.

[todw in reply to todw]

Also it's worth adding that on a phone call with my dr just before Christmas he threw in at the end of the conversation 'well I suppose you can take 40mg over Christmas if you're worried' ... casual as you like. So I suppose that's where the thought about upping the dose came from.

[PMRpro Ambassador in reply to todw]

OK - fair enough. In that case - IF the symptoms get worse or you have any visual symptoms, take 40mg and present yourself to your GP as an emergency. Don't take no from the receptionist as an answer.

Have you got enough pred to do that for more than a couple of days?

[todw in reply to PMRpro]

Yes, got a months worth of 20mg so would be fine for a few days.

[Rocketronzy in reply to todw]

Regarding upping the dose before being diagnosed by a Rumi can cAuse a problem. As with me I had lots of the nasty symptoms. Panicky upt the pred to 25 enough to quel the symptoms. Then as doctor warned no symptoms

He the Rumi dismissed me.

He didn’t give me benefit of the dowt.

Makes you feel awful. 🍀🍀🍀🍀🍀

[todw in reply to Rocketronzy]

Thank you Ronzy. Had similar advice from gp this morning. It's a minefield isn't it?

[PMRpro Ambassador in reply to todw]

Tell me about it - I had 5 years of it but I didn't know as much then as you do. So I didn't worry about jaw pain and sore scalp and it did go away after several weeks.Once I was on 15mg of pred all the things that were, in retrospect, probably signs of GCA/LVV faded slowly and have never reappeared. If any of them do get back to you, do explain the symptoms that are concerning you.

[todw in reply to PMRpro]

In fairness my jaw pain hasn't come back since dropping the dose that time, it's just the head symptoms which have appeared since then which are troubling and confusing me. You were lucky to have only needed 15mg weren't you?

[PMRpro Ambassador in reply to todw]

In some ways yes - but I am still on pred after over 8 years and 14 years of PMR! Would I have done better starting on a higher dose? Who knows...

[todw in reply to PMRpro]

Oh goodness. What a haul.

[Hidden]

Hi. I certainly can tune in to your experience. Good advice from jinasc. Positive biopsy GCA diagnosis myself. It's difficult to describe the head/jaw /ear pain! My GP's picked this up after 3 visits & was put on 40mg pred. Fast appointment to QE Brum. Eye Specialists then referred to Rhumy. Then it becomes a different game on the steroid stuff! Look after those eyes. Great information on this forum.

[todw in reply to Hidden]

Thanks Pepperdoggie! I'm sorry to hear you've got gca but glad you got a diagnosis relatively quickly.

When you say the pain was difficult to describe do you mean because it was off the scale? And in what way do you recognise my experience?

[Hidden in reply to todw]

Blimey. Some difficulty of articulating pain yourself! What sort of scale are we talking about here? That's a toughie talking in your head. Best sorted .

[Gaijin]

I'm in the same boat, todw. I have headaches, stabbing pain in my temples and sometimes in my ear lasting about a minute. I feel general malaise. The rheumi had scheduled a Temporal biopsy which she canceled when my SED rate came back normal.

I see my regular rheumatoligist on Jan. 31, he wants to put me on actemra. Meanwhile, I'm scared too, thinking the uncontrolled inflammation is playing havoc on my arteries or whatever.

I was told specifically, despite all my symptoms, to stay on 7.5 migs till I see the rheumi in a month. . I did increase, though, just to try and see if I felt better and to be able to enjoy New Years Eve, I got to 12.5 but so far no relief from symptoms... I also have claudicacion in all four limbs.

Infelt kind if guilty going against doc's orders, especially after reading Kate's thread about her concern about us yo- yoing on the Pred without docs' permission. . I understand her concern.. Its easy to get into that dynamic.

But the public health system is so bad in Spain, I went to the ER iniciallybwirh these GCA- like symptoms.. I felt like I was in a third world country, waited for 6 hours to be called in the wrong waiting room, before I left.

The nature of our disease needs a bit of freedom on part of the patient to decide when to taper and when to stop tapering. But increasing the Pred beyond the starting dose would be not only self medicating but self diagnosing.. But I've been tempted, too.. 😁. Its just awful that on the forums and on the internet in general, they make our symptoms sound like a medical emergency and yet our doctors dismiss them as if we were making them up! 😤

[todw]

Yes, you can end up feeling like a trouble maker can't you?! I do hope you get some relief soon. It's all very confusing.

[Jackoh]

Todw I can associate with some of your experience. I started with PMR in Nov 2014 , at 15 mg of Pred and eventually got down to 10.5 mg of Pred in the Jan 2015. That is when the head pains started. I had boring pains in the side of my head, pains at the back of my head, crushing pain at the top of the head and sometimes earache in one ear and occasionally pain behind one eye. My readings for ESR ( I think they were 8 at that point) and CRP (-1) were very low. I had no temporal pain or eye disturbance and therefore my GP did not believe me that I thought I had GCA. By this time I had gone up, by degrees to 20/21 mg of Pred and that finally began to ease the head pain. I went to see a Consultant Rheumy recommended on this site( 2/3 hours away from my home) privately. He confirmed Cranial GCA and has been very supportive. I too wondered if I needed to go higher with my dose but as 20/21 mg was controlling the really bad head pains( sometimes felt the pressure on the top of head) I remained on the 20/21 mg for a period of time.My consultant did not want me to go higher. My GP , I believe ,still feels, that I am making a fuss, that it is probably still all in my mind but I have to ignore that. I have started to slowly come down , 1 mg a month, using the DSNS, method. I am now attempting to come down to 16 mg. I still sometimes have a few pains at the back of my head and pressure on the top but not the searing, boring pains at the side of my head which were awful. I would imagine too that if you are really worried then this would add to your stress, which would add to your inflammation, which would in turn add to to your symptoms. If your GP is not very understanding then I feel that you need to see a good Consultant, quickly, privately if necessary to help you understand what is going on and also to have confidence that someone is listening to you and taking you seriously. I personally wouldn't go up to 40 mg as that might muddy the waters. I would certainly though as has been suggested go immediately to A&E if symptoms become really bad or if your eyesight is affected. Do let us know how you get on.

[todw in reply to Jackoh]

Thank you so much Jackoh. I'm so grateful for your reply. It's awful when you think everyone else thinks you're making it up isn't it? I am going to get an appointment with a private consultant in the next couple of weeks and I'm crossing my fingers that they'll be open-minded. I'll let you know! Thank you for taking the time to share your experience. It makes such a difference.