I have GCA/PMR, diagnosed in May 2018 and started on 60mg Pred. I am now down to 25mg. But the last two times I went down from 35mg to 30mg and then from 30mg to 25mg, I had bad headaches and body aches for a few days then it was better. I told my rheumy and she said maybe I don't have GCA. What??? I was classic GCA and improved within a day of starting pred. She wants to send me to a neurologist that specializes in headaches. Ugh!!! Sidenote: my TAB was negative due to being on steroids too long before the biopsy (2 weeks). Now she is questioning my diagnosis.
Tapering symptoms: I have GCA/PMR, diagnosed in May... - PMRGCAuk
Tapering symptoms
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kay7954
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Oh dear kay7954, I would have thought that your withdrawal pains were normal. I guess she wants to be ultra-cautious. It can’t do any harm. Try not to get too stressed, these autoimmune diseases just feed off it. Good luck with everything.
Thank you for getting back with me. I understand her reasoning about the headache doc, but a 2 hour drive to UCLA to see a doc that will order more tests and more stress. We just retired this year to the country and this stupid disease is messing with my plan. lol
Once the doubt had been planted in my mind, I would just have to see it through. Hopefully it’s just a blip in your plans and you go on to have a wonderful, healthy retirement!
• in reply toSheffieldJane
YES! Me too. I have terrible withdrawals each time I reduce... but they only last 5-6 days and then they disappear. They "feel," just like the disease symptoms; aches, pains, fatigue, lethargy and yes headaches... but they all go away on their own within a several days. Best of luck. Let us know how you get on.
Let me get this straight. You have, not unexpectedly, withdrawal symptoms when you drop your pred dose by somewhat more than the recommended 10%? And she uses this to question whether you ever had GCA? Makes no sense to me. On the other hand, if the symptoms were staying bad and getting worse it would be indicating you had tapered too low too soon. So what does she think you should be feeling like now?
Btw you are now at a level where normally you mustn't reduce by more than a couple of mg in order to minimize the likelihood of flares as well as avoiding pred withdrawal symptoms.
The doctor says because my SED rate is 11 and has been stable for the past month, I shouldn't have any PMR/GCA symptoms. But even while we are on the prednisone, isn't there some inflammation still going on in our arteries? I guess my question is; is it normal to have some symptoms while tapering down. The headache is quick, stabbing on one side and only last for 10 to 15 seconds. Yes, she said once she gets to 20mg, then she will taper down 1-2mg at a time.
There are others on this forum who have earned the t-shirt. But to the best of my knowledge evidence of inflammation can be found many months after symptoms are relieved. Your improved SED reading shows that pred is doing its job, not that GCA never existed or that you are already better. Your pain description, however, sounds a lot like trigeminal neuralgia. Does it feel like a knitting needle going into the side of your head near your eye? Is this what your GCA presented as? There is, or course, and unfortunately, no reason why you can't have more than one thing going on....
My headaches from the start have been stabbing and sharp pain to the temple. It was 24/7 dull ache with the stabbing pain usually on the left side off and on through out the day. I had all the classic symptoms. Weight loss, severe sudden onset headaches, jaw pain when chewing and blurred vision along with horrible shoulder and hip pain. When I tapered my dose down to 25mg, I had some awful stabbing pain in my left temple, it was only momentary, but it was off and on for 3-4 days. Now it is back normal and only a few times a day I have some sharp little pain, but it is only momentary.
I'm sure the others who've had GCA will be able to address this, although the UK and Europe may be asleep by now and you'll hear from them in a few hours. There's always someone who will have experienced the same symptoms and had similar experiences and they will share. Certainly the jaw pain sounds perfectly classic and I believe the sharp stabbing pain is also often a feature. I think if you're experiencing a return of the symptoms it would be extra wise not to taper too quickly from now on, but it's good that these symptoms seem to be lessening.
It sounds to me, and I am no expert, that you are having both withdrawal and PMR pain at the same time. I have GCA and experience short sharp headaches every time I withdraw. I started at 80 in May 2018 and am currently at 5. But I stress I do not have PMR. The headaches could be withdrawal, from my experience, and the residual pain could be PMR., which could last for years. Wait until the experts wake up. They will help you.
• in reply toMikb
Phew! That is an amazing reduction in so short a time Mikb. What increments of reduction did you taper down with. I assume you have had no flares either. GCA myself.( Just looked your profile up & see you probably have a couple of typo's with the date & dosage on the above. Or maybe not!)
Mikb• in reply to
There are quite possibly inconsistencies with dates but I know I did start at 80 mgs late May 2018 and had a positive biopsy early June. Things were fuzzy at high doses (as in my brain...) but I believe I decreased 10 mgs per month to 40. From 40 to 20 I think it was 5 mgs per month. Then 2-1/2 mgs per month. At 12.5 mgs I had a flare and went back up to 40 for 2 weeks. I decreased as above, only decreasing every 2 weeks instead of monthly. When I got to 10 my rheumy said to decrease by 1 every 2-3 weeks. I have been decreasing every 2 weeks and so far so good 🤞🏻. I do get those fast sharp head pains, but as they are nothing like the original head pain, I put them down to withdrawal. They could also be weather related as the last two days here were in the mid 30s with the humidex making it feel like over 40. And no air conditioning... I have also been waiting for the much heard of deathly fatigue, but so far so good. Hope your tapering is going well!
• in reply toMikb
Still seems a fast reduction Mikb. I can believe that some are fortunate to be able to achieve it. Hope it continues to go well for you.ATB
Are you sure you started pred in May 2018 at 80mg? Based on what you say you would have spent at least eleven months reducing. Did you mean May 2017?
Thanks to piglette I realize I started May 2017! Obviously still have the pred head....even at 5.
Hi Kay, too fast I`d say. 1 mg a month reducing is the rule of thumb, unless the consultant says otherwise.
Hi,
at higher doses with GCA you can probably do 5mg a month down to about the 20s, then 2.5mg a month, but once you get to single figures then definitely 1mg a month., even 0.5mg under 5mg.
I started at 80mg, and if I’d only reduced 1mg a month I’d still be on them now, and my overall consumption would be well in excess of what the doctors think it safe!
Hmm, she might be right, but honestly that’s a flakey reason for doing an about turn on diagnosis. I got exactly those symptoms on withdrawal plus pain in my biopsy scar that tended to lag behind the main symptoms of fluey aches, monster headache and fatigue. I also get niggles from what I now know are Temporomandibular joint dysfunction and Sternokleidomastoid tension. If you search these, there’s plenty
They are very similar to GCA and cause headaches, probably due to the muscle weakening effect of Pred. I know it’s not GCS because normal painkillers help and my Bowen therapy helps like a charm.
PMRproAmbassador
The pred hasn't CURED the GCA - does she not know that? It is managing inflammation to reduce the symptoms until the underlying cause burns out and goes into remission. It is similar to using DMARDs for RA, they manage the symptoms but the disease is still there. Pred is our DMARD - there is no other option. The TAB is only positive in about 40% of cases - if it is positive it is 100% accurate - if it was negative it means little other than they didn't find what they were looking for and there is a whole range of reasons for that besides the patient already being on high dose pred.
Top tapering experts have said for years that in a taper like this any reduction should be no more than 10% of the current dose but for many people even that is too much and they suffer what is called steroid withdrawal where your body objects about not getting the amount of pred it expected. It usually resembles the symptoms of the illness for which you are taking the pred - which is confusing as you wonder if it is return of the disease. It starts as soon as you reduce and then improves over the following few days. As yours did - it is a very normal experience in GCA and PMR.
A study done in London with Prof Dasgupta, an acknowledged world expert in GCA, found that there is evidence of active inflammation even after 6 months of high dose pred even though the blood markers were normal and the patients had no symptoms.
The conclusion of this study
ncbi.nlm.nih.gov/pubmed/258...
was "Among patients with GCA, relapses are common, often occurring during treatment. ESR and CRP are frequently normal at times of clinical relapse, highlighting the need for better biomarkers to assess disease activity in GCA. There remains a need for effective therapeutic alternatives to glucocorticoids in GCA."
The impression I get is your rheumy doesn't know much about GCA - you are only 4 months into your journey and she has already reduced you down to 25mg. With many rheumies you would have done a month at each of 60, 50, 40 and 30 - which doesn't sound much difference but 5mg can be a lot. If she wants to have any doubts then she wants to look at her management - not immediately cast doubt on the diagnosis and send you to a neurologist.
Or can I be very cynical - does she get a cut of his fee from the insurance?
My Goodness PMRpro! I love the knowledge you have - and I love the way you tell it.
The big dilemma I face is - What to make of the pains - imaginary, or otherwise, I get each time I reduce the preds. I started at 60mg after losing an eye to GCA (misdiagnosed as trigeminal neuralgia and treated with codeine). Now I'm down to 8 mg after about 9 nine months. Each time I reduce, as governed by a Dragon Lady Rheumy who I trust (so far), I find myself thinking - "Is that jaw pain again?" - "Is that scalp pain again?" - Oh God - Should I panic? You know what I mean, So far I have told myself that it's probably psychological, and so I soldier on - but my remaining eye is very precious to me - You have no idea! And I'm just so unsure. So very unsure.
What to do PMR pro - That's the question.
Keep on as you are - your rheumy now seems to know what's what.
Thanks for that PMRpro. I do believe that she is good - unlike so many I read about on here.
It's just that I only get to see her every three months or so. - Plenty of time to panic in between. Heyho.
Oh believe me I know! and yes it is quite natural to assume every ache/pain/niggle is a recurrence of GCA, although invariably it isn’t! However you have got to 8mg quite quickly, and that dose in itself can be problematic for many so you MAY find reducing a little more difficult, so don’t let the Dragon Lady push too much!
I love you to bits for that DorsetLady. I do know that you know all about this first hand. We have talked before.
I actually have a lot of respect for The Dragon Lady. She warned me that others (who didn't know the background) may try to alter her tapering Diktat - and that I must not let them, on pain of death!. She was so right, as it turned-out - I was in hospital four more times after the eye loss event - with chest infections and pneumonia - (hospital acquired infections arising from the first visit, I believe) - and most recently wit (false alarm) chest pains. . Anyway - one hospital Doc wanted to stop the preds as quickly as possible - and another (a few days later) wanted to increase the dose by quite a bit. What? I had decided to stick with The Dragon Lady's taper, to the extent that my wife was smuggling in extra preds at one point. So funny! - my wife is not a natural-born criminal - So you can imagine the furtive shuffling - bless her.
You are right - The Dragon Lady is pushing a bit because I have heart failure, and the preds have played havoc with breathlessness etc.. They have also given me crippling osteoporosis and diabetes 2. She says her taper is " a balance of risk" solution - and I tend to accept that - for now! I do seem to have a better Rheumy than so many others on here.
Yes - I have read on here that trouble can occur as I approach 5 mg. That's why I am mincing around like a nervous Ballerina!
Thank you so much for your thoughts DorsetLady. I gather from other correspondence on here that the new knee is doing well - Hurrah!
Knee coming along nicely thank you! Got all clear from surgeon on Tues!
It does sound as if Rheumy is a sensible lady, and I guess there is a "balance of risk" always in medical matters - and real life!
Good job we ladies have capacious handbags sometimes - I was guilty of same when hubby in hospital! Although it was probably goodies rather than medication.
Ho-Ho DorsetLady - Though I thought Hubby was no longer with us. - maybe this tale was from a while back.
I am so glad that the knee is mending as it should, Do keep me posted on progress.
You’re correct, it is a tale of long ago!
Hi Kay
I have to agree with some of the other posters, your tapering for GCA seems to be far too quick.
I was diagnosed with GCA in January 2017, started on 60mgs of Pred, even before the TAB I was told that they were almost certain I had GCA as the first 60mgs of pred relieved my symptoms so quickly.
I had my first relapse August 2017 while taking 10mgs, the relapse symptoms were extreme head pain, in my case on the right side. It seemed that the pred was only helping for twelve hours. I upped the pred to 15mgs and was OK after a few days so I stuck with that for over a month. Doctor ordered bloods and the CPR was 1.
I had another relapse when I got down to 10mgs and again the symptoms were extreme head pain, not helped by taking codeine. I upped the dose to the time when I was OK i.e 15mgs and that seemed to sort me out.
Just by the way the preds have alleviated your head pain is, as far as I am concerned GCA.
It annoys me that some of the consultants are oblivious to some diseases.
On looking at the NICE web site it states somewhere that the patient should go back up the dose on which they were OK on, so I took the advice of NICE and it worked.
As an aside and quite funny now. I rang the out of hours helpline when I had my first relapse, they got my notes up on the screen and told me that I had temporary arthritis and take to codeine every four hours.
Was that temporary rather permanent, it's a new one on me!
Anyone every had temporary arthritis??
Not enough research has gone into the diagnosis of GCA and far too may folk have suffered severe consequences, unfortunately; I think that Dorset Lady will back this one up.
Yes I will, and after my eventual diagnosis in 2012 I’m still astounded that some so called experts still seem to have such scant knowledge of how to treat GCA. GPs can be excused, but not Rheumatologists!
I like the idea of temporary arthritis - I could manage that easy peasy! 😊
I've only seen the consultant the once but my doctor had been helpful, in letting me sort myself out.
It is disgraceful that GCA is missed or should I say "dismissed" far too often.
Sounds a bit like a call handler who couldn't read... Though I can't imagine who on earth thought codeine 4-hourly would manage GCA ...
Temporary anything would be preferable to PMR/GCA!
It was a doctor I spoke to but he wasn't English, I started to argue with him but he was emphatic that I had temporary arthritis. You're quite right codeine was no use
I wish I had got that!!
Might be worth a complaint. If that WAS a doctor being handed temporal arteritis being flagged up as a potential diagnosis by the algorithm - they need to have ones who know what to do about it. Someone could have lost their sight as a result of that. 111 is even worse than NHS reDirect was - they send out a lot of unnecessary ambos (that is info straight from the horses mouth) so I really wouldn't waste my time with them if that were the sort of info they gave me.
I did report it to my doctor and he laughed at the time. He knows I'm not that daft!
You are quite right though, the relapse could have turned very nasty if I hadn't got my own information about it.
I just told my husband (a former healthcare professional at consultant level) and he immediately said it should be complained about. You knew - your doctor knew. But what about the person having symptoms for the first time who doesn't have a clue? Who could wake up blind tomorrow morning as a result.
I agree with you, someone else may well have had grave problems. I actually put it down to the out of hours doctor not being very fluent in the English language and thought that he was just being ignorant. On reflection, he was ignorant.
In fact my daughter said that if the surgery was closed she would ring for an ambulance next time.
I will mention it again to my doctor to reiterate that fact that what he thought was funny could have had disastrous effects.
Thanks for your take on this PMRpro, it is not a laughing matter at the end of the day.
Ignorance and poor language skills in the OOH service have already killed people - remember the locum who gave 10x the morphine dose to someone? Post-Brexit when they are filling posts with more people from the subcontinent or the Far East who technically "speak English" it will be an even greater problem when foreign doctors don't understand native English speakers from the UK and the patients don't understand the doctor.
But codeine for GCA??????? Temporary arthritis????????????
Oh My Goodness Primarose! Temporary arthritis! - That's a first. You poor lamb! My GCA was misdiagnosed as Trigeminal Neuralgia, and I was given codeine - in my ignorance. So I lost the sight of my right eye, There is something seriously wrong in the Medical "Profession" - is there not?
We all despair and cry out about this disgraceful "Service". I would so love to identify what we can all do about it.
You do sound as though you have GCA - So take good care, my friend. Be fierce with those who stand in the way of proper treatment. Be insistent - and be nasty too if you must. You know - Grrr! You can do it - You must do it. Demand that you see someone who really does know about GCA. You only have one pair of eyes, my love. I have half a pair - So I know.
Good on you arthur463 saying it as it REALLY is !!!
Ever since I joined this forum i have found myself all too often FLABBERGASTED at the frequency of inadequate or downright BAD or WRONG (mis)treatment of so any people. About this someone (a medico actually) said 'but on these forums you are more likely to hear the opinions of those who are disgruntled or UN-happy rather than'happy' with their treatment. Even if there is some truth to this there are clearly far too many examples of serious negligence or clearly a terrible and widespread lack of education about our conditions - ESPECIALLY when the consequences of misdiagnosis can be so devastating.
I am so very sorry for what happened to you and I know I am among many others who really appreciate your efforts here to prevent anything similar happening to them !!
Many thanks
Rimmy
Thanks for that Rimmy.
The question remains though - What is to be done? - and what can us lot do to kick it off? Oooh - I so want to define a path to Action!
I can only think more 'education' is the answer - and I know PMRpro and some others here are involved in that in various ways. For the rest of us lobbying our own doctors is important - obviously - and we can't be shrinking violets when it comes to disputing certain things we KNOW to be wrong - just by demanding appropriate and contemporary (in terms of 'proven' research/medication etc) treatments. Getting 'change' will be an uphill battle I think when many countries are struggling with their healthcare systems and everything that relates to them.
I know we complain at the seeming lack of knowledge, but I am finding we are not the only ones. Fibromyalgia patients have the same problem and also a lot of others. My hairdresser died well over a year and his daughter has taken over. She was saying that the surgery had sent a letter to her father reminding him his diabetes check was due! Her mother was terribly upset. Ghost patients we are paying for.
And yet some 15 years ago my mother turned up at the practice to request a repeat prescription - to be told according to their records she was dead. Two patients with the same name - and, incredibly, DOB. They hadn't checked the address. It took ages to sort out...
PMRGCAuk are in the process of setting something up to educate GPs - but it is a question of how to do it best to really get it to the place it is needed. Sending out leaflets does nothing - they end up in File 13. Something that counts towards their CPD would seem a target - but I'm sure that isn't easy to achieve quickly.
I think that is why the drug companies offer free food etc to them, particularly as they do not seem to have learnt to read. I know that the letters from my various rheumies are never read, nor letters from consultants or hospitals. I think they just hope we tell them if things go wrong.
Hi arthur, yes I've had GCA since Dec 2016, diagnosed in Jan 2017. On an emergency visit to a walk in centre, would you believe it, I was told exactly the same as you; that I had Trigeminal Neuralgia, I was even given a leaflet about it plus a prescription for Co-Codamol.
By the time I was actually diagnosed with GCA I was on me last legs, in hindsight I was very lucky not to loose any eyesight. While in hospital I was repeatedly told that I had a very rare disease, hence the difficulty in diagnosis. I'm not so sure that's the truth now.
Who knows what damage has been caused by the GCA.
Thanks for the post, take care now.
Thanks Primarose. I'm so glad that they (eventually) sorted you out in time. I was eventually correctly diagnosed by a local optician - and he made an emergency hospital appointment for me - there and then - "Don't go home - go straight to hospital". - would you believe? - but by then it was too late to save my eye - Heyho Primarose.
Hi arthur, you seem to have come it terms with your sight loss but you must have been very angry that the GCA was missed.
The opposite for me, I was turned away from the A & E Eye hospital as a time waster "suffering" from grinding my teeth!!
In hindsight it's no wonder GCA is missed; far too often IMHO.
Well said Arthur, i'm cheering you along as it can't be underestimated how important your advice is that no one should be afraid to 'be fierce' if necessary - so so sad it being due to your terrible outcome. Keep shouting from the roof tops as many times as you wish, if it helps save someone else going through the same as you, and DL, then you (both) have done your bit! I count myself one of the lucky ones, my GP knew about GCA and had me on his radar, was treating me for migraines initially, and only waited for a second visit to decide enough was enough as I'd briefly lost the sight of one eye. I was fast tracked and diagnosed within 24 hours and on treatment. I truly am forever grateful to him and I've told him so, he seems so humble - a very nice man indeed.
Your story is exactly the same as mine, negative TAB too, I see my Neurologist next Friday for the results of my latest brain scan. Go for the tests and I hope all turns out well for you, try not to worry as they take time. ATB.
Thank you all for the responses. I see my Rheumy on Tues and I will stand firm that she can only lower my dose by the 10%. I do not want to go through what I went through a couple of weeks ago.
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