Unfortunately TCZ was only trialled for a year, so that is recommended timescale it’s approved for [it is also expensive, but that not the overriding reason you cannot get it for longer]. The charity and certain Rheumies are trying to get the rules revised.
If your headaches are back [but have to say I am concerned that they never seemed fully under control] then you do need an increase in Pred… and irrespective of the cumulative dose which I doubt is higher than most people with GCA, you cannot risk a threat to your sight.
What the chances of a. contacting Rheumy department, b. contacting GP, or if neither then c. ringing NHS111.
But at the end of the day… you need more Pred. Do you have enough to increase to say 12mg or even 15mg for a few days and see if that makes any difference., until you can get medical advice.
"Last month they stopped my Tocilizumab (apparently because it is expensive)."
Not quite - in the UK it is only approved for use for 1 year in GCA. If your diagnosis was RA, its use would be unlimited. The ground quoted for its non-approval was the lack of documentation for longterm safety and lack of submission cost/benefit evidence.. Yes, I know. NICE does make some illogical statements at times. It can be used for longer in Scotland apparently.
A study is being submitted for consideration which documents the rate of relapse when patients are off TCZ which does show the need for more than a year is there because other so-called steroid sparers haven't helped either (unsurprisingly). Rheumies in the UK must be aware of the rate of relapse - and should have instructed patients about actions to take if they do.
TCZ is not a 100% answer anyway, half of patients in the clinical trials weren't fully controlled on TCZ - there are at least 3 different mechanisms creating inflammation in GCA, TCZ only works for one of them. If the others are involved in YOUR GCA, you will continue to need pred for the other two.
Not much to add to DL's comments - I agree you weren't well controlled anyway. Did you have any time without symptoms? Have you got a rheumy helpline? In the absence of that or seeing your GP within a couple of days, I think 111 or the ED may be your only resort. YOur GP should be able to contact the rheumy dept directly.
The doctors at our local practice (*if* you can get to speak to them !!) say they cannot advise because my GCA is being dealt with by the rheumy (in another town).
I was supposed to be seen by the "rheumy" once every 3 months, but the last appointment was 7 months after the previous one !! (Edit = that last appointment lasted all of 4 or 5 minutes)
She has now said my next appointment will be in 6 months time.
Again, being brief =
My headache is not severe, say a 3 to 4 on the "out of 10" scale.
Note, the Pred has never stopped the headache, though the TCZ seemed to make it less.
I have never had any other symptoms.
It is worse first thing in the morning.
For over 2 years I have had an issue with phlegm in the throat, constant and deliberate "throat clearing coughs" and constant nose blowing. The doctors just seem to pass over this when I mention it ?
I have plenty of Prednisolone here.
If I go up to say 15, how long for and will I have to restart the taper regime all over again ?
Once again, HUGE thanks to both of you for your input.
If you treat it as a flare - as described in this link - you can drop back down within 14 days without having to taper - which is what I’d try initially, and probably back to 8mg or 7mg - just to gauge the situation…
Obviously once you drop back down and if symptoms return. Then you will need to rethink. ..but try that route first. Come back to us if in doubt.
And GP can/should be talking to the rheumatologist on your behalf - if you cannot phone rheumatology department helpline direct . That’s all part of the service to you! [sorry mustn’t laugh 😆]. Does your surgery have the eConsult facility? Is so, then use that, if not sure you can check here -
I think your GP is buck-passing - they are responsible for all other aspects of your health AND should provide an emergency contact between you and the rheumy if necessary.
It sounds to me as if the pred isn't holding the full 24 hours - there is a new batch of inflammatory substances released every morning about 4am. Until the next dose of pred is taken, they then create new inflammation until the pred takes effect, The ideal time to take prednisolone to minimise that morning effect is 3am - is that an option? Do you wake during the night anyway? Is it difficult to get back to sleep?
The plegm, throat-clearing, may be a symptom of the GCA - more linked to the autoimmune part of the GCA rather than the effects of the inflammation it causes. I actually had it with PMR and also now experience it with tocilizumab.
As for cumulative dose - there are many of us who are almost certainly well north of you, mostly because you had a year of steroid sparing compared to most of the GCA patients in the UK. And my cumulative dose is definitely higher - 15 years of pred and only a few years where I got under 10mg/day. No apparent crumbling yet!!
Re flare, I read that in the link. I was not aware of the symptoms of steroid withdrawal. Paracetamol does help.
Re Upping the dose. 6 at present, I will go to 14 for a week or 10 days (roughly as suggested further up) and see what happens, and follow the advice in that "flare" link.
I find it interesting though that at no time since diagnosis (65mg prescribed) have I noticed the steroids stopping the headache much, if at all. (the TCZ did, to some extent).
Re when to take Pred, read and understood. I don't have a problem sleeping. The headache is annoying (when I wake at 6am), but I am more concerned with treating the GCA rather than the symptoms, which I can tolerate. If I were to take it at 4am, would I need to get up and have some food before taking it ?
4am - many take a spoonful of yogurt, small plain biscuit, slice of bread -just enough for stomach acids to work on [all can be prepared before bed and taken to bedroom, even yogurt].
Bit odd about Pred not controlling headaches though…
Never feel guilty - you aren’t wasting our time….as an ex GCA patient I can assure you of that!
You can't "treat" the GCA - there is no cure, just medication and lifestyle adjustments that help manage the symptoms in the meantime until the underlying autoimmune disorder burns out and goes into remission. That is the best you can get at present - they don't know what causes the immune system to go wrong and turn on the body, unable to recognise it as "self" it attacks it as it would an invading virus or bacterium.
Many take their pred with yoghurt or a lump of cheese or a banana for example. Were you put on "stomach protection", a PPI or the like at the start?
As for "I will get off your back in a minute!" ... "I feel guilty taking up so much of your time."
That is why we are here, both of us. We got left with our PMR/GCA with no handbook and GPs who didn't know much about owt. We got involved with the charity to spread the word to save others going through the same deep waters we did. You haven't taken up a lot of time, you have asked sensible questions. All we ask is that you put your brain in gear and remember - not chug back every few months asking the same question having done nothing to change in the meantime! Though you will always get an answer - no-one gets left to stew for more than overnight because we draw the line at being available 24/7!!!! That said - usually someone around as there a members in Europe, the USA and the Antipodes.
More good info, thanks, read carefully and understood.
Re = " Were you put on "stomach protection", a PPI " = Yes Omeprazole.
I will try the 3am Banana and Pred at 14mg for a week or 10 days and will report back.
Thank you, both of you. You are MUCH more help than the doctors I have, especially the consultant !
PS - In the past I have sent the occasional email to my consultant (which sometimes was replied to) stating that the headache has not gone away, but she just replies with something like "my advice is to go to A&E".
No - the ED is for EMERGENCIES, to keep you alive long enough for the specialist (her) to revise her therapy plan. Not their job to act as a catch-all for her failings.
She once reprimanded me when I said that it seems I am "Yo-Yo'ing" up and down from a low dose to a high dose, then tapering over months, only to have to go back up, and repeat, repeat.....
She was not at all happy when I pointed out that it was her (sometimes in writing) who had told me to do it !!
This was mentioned over a year ago when I was last on here.
Back then 2 folk sent me a PM (DM) asking me to name her because they were so shocked and concerned about the treatment plan and some of the things she has said to me.
She does have all the letters after her name though.
Doesn't mean she is good at all of rheumatology though - and vasculitis can be very different from the RA that is their usual bread and butter fare. Particularly in the last 10 years as pressure from patients banding together in the charity has pushed improvements in diagnosis and management. Many doctors stopped learning when they passed their exams and assume they know it all. Unfortunately for them, there are many patients these days who are quite as able to speak up for themselves having also been to university and knowing how to read the science - and access it through google. They don't always LIKE being challenged - but there are some who DO and who take up the challenge to make their patients' lives better. She isn't one by the sound of things.
Certainly not. She is more of the "do as I say and don't question it" type.
I did have an appointment with her 2 weeks ago, just after stopping the TCZ. I had made a list of 4 or 5 questions I wanted to ask, but we were in her office for less than 5 minutes before being ushered out. I take my lovely wife with me to try and back me up, but.............
My next contact with anyone there re GCA is 6 months away.
PS, I get on just fine with *everyone* else in my life, just not her, and my wife agrees !!
Sounds like a doc who feels insecure in her abilities and reacts by being rigid in her ideas. I would be looking at speaking to PALS to get another doctor as the relationship is non-functional. Unfortunately you do need a rheumy if TCZ gets approved for longer use so just going to the GP is not the solution though they may be able to facilitate a change in consultant.
More TCZ has, I have been told, is out of the question.
I did wonder about PALS, but I don't want to be labelled as an "awkward patient" because I certainly am not that !
I, and my wife, just feel she is unfriendly, and sometimes down right rude.
She writes a precis of each appointment to my GP and copies me in on it, usually about 2 months after the appointment. It often contains statements that are........."inaccurate" =
"Mr B says his headaches have ceased"
"Mr B reports that "he feels well and has no concerns"
All on the UK's NHS service here, paying for private is out of the question (costs *loads*).
I have, politely and even discretely asked their reception desk, when asking (begging) for an appointment, if I could see someone else, but apparently you have to formally request a change of consultant, and I am acutely aware that, in life, there are 3 people you don't upset, your Doctor, your bank manager, and the landlord of the pub you use
Bank manager? What's that!!! Pub landlord - absolutely! But your doctor - no, even in the NHS you don't have to put up with that poor treatment. There are a few ways to complain and I suggested PALS and your GP as potential starting points.
My GP told me I have a right to ask for a second opinion, without paying. I suppose it might take a while though. If you research the available rheumies a bit, you might find a more patient-friendly one that would be prepared to take you on permanently.
Just something from left field - would you consider going Gluten Free for 10 days to see if that makes a difference to the amount of phlem/mucous you experience? I personally was amazed at the difference it made to my breathing (consequent to lung fibrosis).
Oh dear, it is awful how doctors put us under this additional unnecessary and even cruel pressure.
From all you have said, I think it is vital you change your rheumy. If you don't want to criticise this one or complain you could ask for another one for a review (in light of fact that it is two years on, your headache has never properly gone despite being on high doses of pred on several occasions.)
Why not contact PALS and ask for advice about your situation as a first step?
Is there another hospital covering your area which you could attend instead?
Don't rule out private if at all possible. A consultation costs around £250 but after that it could be phone contact which is cheaper and only if needed. Many people on the forum who have questions about their conditions consult Rod Hughes in Chertsey. His understanding is second to none and he is supportive.
Do you read the forum everyday? That would be a good idea because you build an understanding of how people's illnesses progress and how to manage your own.
Has anyone explored other reasons for the headaches? Perhaps you have more than one condition? I have migraines and pseudotumor cerebri (aka ideopathic intracranial hypertension) which was diagnosed by my ophthalmologist. Since you never had complete relief I have to wonder if a headache specialist might find something more going on?
She has said she would try to get me an appointment with a neurologist, but that was 6 months ago. She did say at the time that they have a long waiting list. It was mentioned again 3 weeks ago but she said I have to be patient.
In view of the circumstances = headache has never gone away (2, 3 or sometimes 4 out of 10 on "the scale") --- no other symptoms --- diagnosed by ultrasound scan only - in fact the lady doing that scan (2+ years ago), said "that looks fine to me", but the official report from the consultant said I had GCA. I have read that GCA headaches are often very severe, but not in my case, 4 out of 10 on the scale is the worst I have had, usually when I awake at around 7am.
I have occasionally wondered if I ever had GCA in the first place !
I have occasionally wondered if I ever had GCA in the first place !
Maybe, maybe not…especially with your scores on the headaches … but you definitely had/have something… and if GCA was suspected at the outset, then correct action was taken initially. Shame about what came after…
I am in the US, on Actemra for two years. I have a cancer now, unrelated to the GCA. My oncologist told me he saw no sign of GCA and believes it is gone. The good news for you is that you had an ultrasound and not a biopsy. You still have two temporaral arteries. In my mind the logical course would be to biopsy just one artery, (so you have one for a future test), then treat according to the results of the physical biopsy.
Unavoidable - they cut out a piece to examine it for the giant cells. But that is why they use the temporal artery. it is only one of several in that area and the others take over the job of supplying blood to the area of scalp the temporal artery reached. They just grow more capillaries - like a tree puts out new twigs if one is broken.
Ah, understood now. Thanks to both of you. (Not that it's relevant for me now).
I have been doing your recommendation of going up to 15 (from 6) at 3 a.m. in the morning with a banana & yogurt (quite nice). 3 days in and no change yet. Still got a moderate headache with some temporal element to it. Early days yet I suppose.
I have also done a lot of reading on here, I just have to keep checking I am reading about GCA and not PMR !!
It is now 6 days since I started the "3 a.m. in the morning" dose of Prednisolone, (up from 6mg to 15mg) as recommended here by a link from either "DL" or PMRpro (sorry I forget which).
Headaches continue, and I think are getting worse. No other symptoms (I never had any other symptoms).
I have just come off the phone from my GP's reception desk. They have booked me in for a blood test, but not for 7 days. I then asked for an appointment to discuss the headaches and blood test results (ESR mainly). The soonest appointment is 2 days short of a month away.
I am going the "GP" route because the consultant (in another town) says the next appointment with her is in 6 months time and if I am worried I should go to A&E.
Not good enough for GP -you need to impress upon staff that it’s an emergency and your sight could be at risk. And should the worse happen you will hold them personally responsible!
And yes - although Rheumy is sloping shoulders on this - you should go to A& E -and tell them why..
I did as you say, reminded them about the eyesight loss thing, but they said it was the best they could do.
Re A&E - It is 20 miles away and has an average waiting time to be seen of around 5 hours (sometimes more). I don't feel my condition is *very urgent* but I just would like to speak to someone and I very much doubt there would be a GCA expert at A&E to discuss steroid dosage etc.
There may not be an GCA expert in A&E - but they have ways of contacting one!
As for GP surgery - not good enough! and although you may not want to confront individual staff, is there a practice manager to whom you can express your concerns.
The ED does have the ability to get a response from a rheumatologist. The response from the practice is not acceptable if it is 20 miles to the ED - and if asking the question and getting a timely response saves using the ED that is what should be done because the GP also has a hotline to a rheumy at the hospital. That is NOT the purpose of any ED but it is why the waiting times are so long.
Complaint about the receptionist triage skills if you ask me. In your position, I would have to call 999 to be able to get to the ED - you can't risk driving yourself and not everyone has a car anyway.
The headaches that had got worse a couple of weeks ago are not as bad now. I followed your (or was it DL's) advice re a short ramp up of pred and then back down to just above what I was on.
I emailed the rheumatologist, just to keep her up to date. She sent me for another ultrasound scan (temples and armpits !!). The operator said the results of which are "looking perfectly OK"
The rheumatologist has now said she wants me to have a biopsy.
After 2.5 years on various doses of Pred and a year on Tocilizumab , does this sound normal and sensible to you please ?
No doubt both of us suggested it!! We usually do sing from the same hymnsheet!
It's difficult to say really - if you are on TCZ then there SHOULDN'T be any active signs of inflammation and GCA. On the other hand - given it is accepted that the u/s is as good as the biopsy - not entirely sure why she now wants a biopsy as well. I'm sure she has her reasons. And there is nothing to say that when you stop TCZ it won't wake up again.
After the amount of time you’ve been on Pred, biopsy unlikely to show much.. and it was me gave advice on flare protocol - but PMRpro’s would probably have been the same.
What’s changed to decrease headaches?extra Pred or something else?
The ultrasound on armpits was probably looking for extra cranial GCA aka GC-LVV see here -
I know you talk to A LOT of folk, it was me (further up) that came off TCZ about a month ago (the "1 year limit"). It was a couple of weeks after that the headaches went from a 2 or 3 to a 4 or 5 (out of 10).
I then went on the afore mentioned "DL" Pred boost scheme for 10 days (6mg up to 12, then back down to 8mg currently). The headaches went back down to the usual 2 or 3, note they have *never* gone away, just sometimes worse than other times.
After all I have read about ultrasound scans and biopsies being inconclusive whilst on steroids, I once again question the rheumatologist's methods. I just don't trust her, and my wife, who is intelligent and very easy going doesn't trust or like her either (wifey comes with my for consultations, as a "second pair of ears").
You may remember me mentioning the "fibs" she writes in letters to my GP (and "CCd" to me) regarding things I am supposed to have said, but did not. I have an appointment with her next week, and as advised further up, I think I will politely point this out. My GP agrees with this.
By the way, when I was at the GP's a few days ago, on a different subject, he thinks the headaches might be a long lasting (2.5 years+) sinus infection and has prescribed antibiotics. (I do go through A LOT of tissues and am constantly clearing my throat).
Normally I do look back to check but bit occupied today loading the campervan for a trip to the UK!!!
It does take time for the effect of theTCZ to wear off and it very much depends on the activity of the underlying autoimmune part - the more active, the faster you feel it. I think this is most likely to be the slow build up of the inflammation now you are off TCZ on top of the possible sinusitis.
However - how certain is the GCA diagnosis? GCA is sometimes confused with another rare vasculitis called GPA which involves the sinuses, throat and lungs - is there ANY possibility they should be looking at something else? There are case reports of overlap.
I read the links re GPA. I do have some issues with sinuses, throat and lungs (constant nose blowing / occasional "snoring sound" when not asleep / short of breath) but I do not have any of the other symptoms listed. Much of what I read though was somewhat over my pay grade !
Not sure what to do really..............
~~~~~~~~~~
I have a 21 year old "hotted up" VW camper here in the middle of the UK. I it love and use often. Where are you (France?) ?
I hope you enjoy the UK and if you need any specific tips, shout out
I'm in northern Italy and mine isn't as venerable as yours - it is a California 6,1 that can only be described as an indulgence of dreams! I've camped all my life, done everything from tents to reasonable size motorhome with 3 previous VWs, but I needed something that didn't mean 2 vehicles and the California is perfect. This is my first major trip - haven't driven back to the UK since before Covid! I flew back for a daughter's 4th graduation last year - just to remind me why I don't like flying!!!
You have always to bear in mind that everything starts somewhere and comes in different levels of severity. It was just a "sinuses??? Hmmm" thought.
Still on 8.5mg Pred (after the short boost mentioned above).
Headache easily tolerable at a " 2 out of 10" most of the time.
Rheumatologist sent me for an Ultra Sound scan (even though I have just stopped Toc and am on Pred ?) It came back clear.
Sent for a blood test. I had a BAD cold and skin damage to my shin (an accident with a wheelbarrow !!) the damaged skin was a bit "angry" looking (now healing ok). I know both of these will cause raised ESR.
My ESR was 53.
Rheumatologist books me for a Biopsy (is this a waste of time in view of Pred, I was always told it was). BUT she has told me to "start again" and go right back up to 45mg and after a month do a 5 mg taper every "2 to 4 weeks" with no indication what I use as a guide line for "2 to 4 weeks". I have not done this.
I wait for the Biopsy result (I reckon it will come back clear).
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