Hi, I am relatively new to GCA and feeling very at sea with it. I’m very grateful for all the replies I received to my previous post.
I was tapering Pred happily down to 15 mg when I think I had a flare, though it could have been withdrawal - my nurse helpline didn’t suggest that at the time and I had no idea that could happen.
At the time I had had a building headache for 6 days so the advice was to go up by 2.5 mg. This didn’t improve things so I was advised three days later to increase another 2.5mg to 20mg.
At first this seemed to work but as the days went by I got headaches in the evening. Five days later I increased to 25mg. I felt better and resumed my exercise activity - cycling.
I saw my rheumatologist last week and was told to stay on 25mg for a month and then go back to the taper regime. As an aside the ultrasound scan didnt seem to show any change in result to the one she did in Jan when I was first diagnosed,
All was going fine until two evenings ago when the evening headache came back and again last night and I have woken with it this morning.
I am coming to the conclusion having read Dorsetlady’s advisory article that I am too active for the Pred to deal with the inflammation in the artery as well as what naturally happens in the body during and after exercise.
Are evening headaches a sign that the Pred is struggling to keep the inflammation at bay? This is two evenings now that I have had one and I have woken with one this morning.
Can anyone give me advice on whether I should increase my dose now or should I wait a bit longer? (Ive tried paracetamol and it doesn’t seem to have much if any impact).
If so whatlevel of Pred to go up to now and how to taper down?
I also have very loud tinnitus does this give any clues?
Sorry for a long one and all the questions..your help and advice is much appreciated.
It’s so helpful to hear from others who have been through the same experience especially at this higher level of dose which I gather is unusual.
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As an athlete - what would you do if you had flu? Not a flu-ey cold, real, knockout flu. Even professional athletes reduce their training regimes when ill and it is well known that excessive exercise affects the immune system. There has been a suggestion in the past that excessive exercise can trigger a flare of PMR>
GCA is a serious systemic illness - even when the pred is successfully managing the inflammation, the underlying autoimmune cause is still active and attacking your body and making you unwell, even if you try to ignore it.
I really do think you need to moderate your exercise regime - not stop altogether necessarily, but notably less.
Not sure quickly you tapered down to 15mg….and although 5mg steps are relatively easy on higher dose for GCA, once you get to around 25mg you do need to ease up. So to that end once symptoms are back under control… and properly under control cut the amount dropped each time.
Just re-read your profile - and see you’ve been reducing at 2 weekly intervals… much to quick. It can take 2 weeks - sometimes longer - to know current dose is sufficient before you drop down.. do that 2, 3or even 4 times, and you may have reduced 20mg before - as you rightly say, hit the buffers. Much more difficult then know what you last ‘good ’ dose was… it’s guesswork. For example could have been anything between the highest and the lowest dose… who knows!
So maybe give the exercises a rest for a week and see if the 25mg resolves the problem of headaches - if so then a month on that dose as advised. If that doesn’t worked work then you may need to up to 30mg for another week. And then re-evaluate… but easy on the cycling- definitely not full pelt..
Whatever dose you finally get relief, then when you do taper.. only 2.5mg every 3-4 weeks - no quicker [and to be honest slower the better, so at least 4 weeks] until you get to 15mg - then 1mg a time. But only provided no issues.
As we said previously, and PMR-has re-iterated here, you cannot return to previous level of fitness at the drop of a hat… need to build up slowly.
Ive been learning the lesson re exercise the hard way and I will definitely ease up as I am sure that is what is causing the problem.
I don’t think I can carry on with this headache as it is now constant and I worry that the inflammation is getting hold and and the symptoms might get worse, so wouldn’t going up a dose be a good idea? And in tandem dialling down my activity levels.
Im really struggling to ignore the advice from my rheumatologist about the tapering regime - why are they so categoric when there is so much evidence on this forum that they may not work in the way they suggest?
Thank you for helping, your article is it a flare or is it steroid withdrawal is also invaluable.
Because they have never had GCA themselves and probably never taken pred either - those who HAVE experienced either are very very different.
If the headache is constant then you need to speak to your medical team and if they aren't available, possibly even go to the ED and tell them the symptoms have returned when you tapered the dose and going back to the previous dose hasn't been enough. Is your local ED in the same hospital as the rheumy team? Or is that too much to hope ...
I think PMRpro meant does the hospital you go to for rheumy appointments have an ED... Not all do, especially if they are smaller sites, or part of a trust where ED is only located in one site.
The nurse is trying to get hold of Dr Quick by email for advice on what to do. This might not be forthcoming until Thursday.
The nurse would not authorise a larger dose of Pred.
When I saw Dr Quick I asked her about pain management and she suggested paracetamol and ibuprofen together but I understand there are risks to this from gastric bleeding.
i think, but cannot be sure she also said increase Pred for a couple of days to a higher dose like 40mg and then drop down again. I am hoping the nurse will confirm this or some other treatment.
I have rung 111 to seek their advice too. The lack of medical advice is very frightening.
i think, but cannot be sure she also said increase Pred for a couple of days to a higher dose like 40mg and then drop down again.
That sounds about right, but you might need longer than just a couple of days.. we usually suggest at least 7 days on higher dose in the case of a flare [but only increasing by an extra 5mg] - but in your case the scenario is slightly different.
However, if it is GCA - and there seems to be some query on that - then dropping back to current dose is probably not a good idea.
But see what advice you get…
..and if it is GCA then paracetamol will not help, and the ibuprofen shouldn’t be taken with Pred…. that’s why there may be gastric issues.
Just keeping you in touch with how things have developed overnight and hopefully it might be useful for others if they find themselves in the same position.
The amitriptilene at 20g plus paracetamol and (one off) ibuprofen meant a good night’s sleep and only a slight headache today.
Since been told not to use ibuprofen routinely and only in extremis and to carry on like this - with the 25 mg Pred for another two weeks. After that continue the taper regime.
On exercise, not to stop cycling but dial it down, not to do it in heat and keep well hydrated. I wont be restarting until I am well over the current situation!
A high dose like that would be typical - and since you remember that being said, you could do it and stand your ground later. If she didn't - then she should privide written instructions for patients.
Are you on a PPI? If so, the paracetamol and ibuprofen taken with a meal would be OK short term - but the only successful pain management in GCA is enough pred. Have you tried it?
I’ve just heard back from the rheumatologist via the nurse and the advice is to take 20-30 of amitryptiline plus paracetamol and ibuprofen for a week. She is also ordering a CT scan and wanted details of an MRI scan (unremarkable) that I had earlier in the year.
As you said earlier I think her recommendations are possibly doubt about whether it is GCA.
I know rheumatology doesn't have an ED of its own. In which hospital is the rheumatology department based that she travels out from? Does THAT hospital have an ED - how far is it away?
She told us a few years ago that she still uses the taper she published when she still worked with Prof Kirwan at Bristol. And that definitely isn't reducing every 2 weeks - but it has been a very successful taper used by quite a few on the forum.
The headache needs addressing as a matter of urgency - and we cannot say how much is required for... for a couple of reasons...
a. we aren't your medical team, so it would be remiss of us, and
b. because your tapering was so quick it's difficult to know what your last "good" dose was...
We could suggest 40mg is enough, but it may not be... so medical input required.
As for rheumy's advice, they are following guidelines for a perfect patient... and we aren't all that... but some do seem to have difficultly in grasping that fact,,, so go by the book!
Sorry to hear about the headaches … although I’m in my 4th year of GCA, strangely ( and mercifully) I’ve never had the headaches. I’m not in any way an athlete but I did do ballet and yoga.. had to drop everything for quite some time because of lack of energy and weakness. Had a flare, just tapering down again now. I do try to walk, and do short exercise workouts, but it’s a fight. Really, trying to keep the muscles working. Not easy, though, and of course your previous advice on here is right… take your time and go more gently. Good luck
Thanks for replying and well done for pushing through and carrying in with the things you love doing. I’m afraid I might have too much energy for my own good which I know is strange!
Sounds like DL’s plan is worth a try. Annoying Rule #1 - Resolution of symptoms does not = go back to what you were doing exercise wise; you are not better.
The Pred is like the plaster cast to a broken leg. As PMRPro has said before, when the doctor says, “keep exercising”, they are likely not referring to those on the elite end of the spectrum and are generalising. I don’t think there is much or any research on this aspect so all one can do is watch for signs in your body. Everyone is different too but bottom line is, your body is clearly not happy and is needing more Pred to keep you afloat. Taking extra moderate to high levels of Pred for longer than you need is debatably not a good long term tradeoff in order to keep yourself in the saddle now, though that is your choice. The effects of Pred will make the musculoskeletal system less happy about intense exercise so you don’t want to keep having flares. Your descent down the dose ladder is already fast so if that is the plan you need to stop poking the hornets’ nest with too much physical on top of that.
Withdrawal doesn’t tend to ramp up and should be gone by a week. Perhaps there is a viral thing going on that is giving you a headache and stuffed up ear, but the pattern of morning headache that isn’t helped by Paracetamol is not reassuring. Add in the tinnitus and Pred wearing off by the evening says watch your step. The GCA may be in other head vessels not in the area scanned.
For sure this is an infuriating situation but it’s not forever.
hi I’m not much of an expert only being diagnosed with PMR 6 months ago but Prednisolone did affect my blood pressure at 30 mg by making it higher and gave me headaches - might be worth checking.
Rather than 'dialling down' exercise, this is the time for getting stabilised so you need rest, pampering and minimal exertion. Personally, I would stop the aerobic/strength stuff altogether for at least a month; focus on rest and relaxation. I know giving up beloved exercise can feel like a bereavement, but you need to reintroduce it very gradually and cautiously.
If you think about it, with GCA our immune system has gone haywire - this is usually for an identifiable reason like intense stress, overwork or vaccine. The IS needs time to readjust and sort itself out. The early months of GCA are vulnerable so you have to give into the body and listen to what it is telling you.
Have you started a symptom diary? This is really helpful in the early days of GCA because symptoms can vary a lot and there can be weird things like sore spots on the head that come and go. Tinnitus is common with GCA and with high doses of pred so it is difficult to say what the cause is. In the short term, taking pain killers and introducing amitryptyline will probably make you feel rough so a diary will help track how you feel.
According to my rheumy most people on 25mg pred are safe from the worst effects of GCA, but there is always the exception so, as I expect you know already, the red flags are jaw pain when eating, headaches getting worse, and of course visual disturbance - the latter means straight to ED.
Really sensible advice thank you and it has definitely dawned on me to slow down. I have been keeping a record during flare times and will keep that going. What you say about 25mg is reassuring.
Good morning, I have five days to go until I pass the four year mark for being diagnosed with the tricky GCA. Like yourself I was very active, horses, gardening and long walks in the beautiful New Forest plus running a pretty busy business with my husband. I had to stop pretty much all of that apart from very low level gardening. If I didnt take notice of the GCA I felt very unwell and had a few flares. I still after four years cant do things anywhere near the level I once could. I had major steroid side effects and the going up and down of the steroids was not great. Its much better to take the steady approach. After starting on 60mg I am now down to 5mg with the help of a brilliant rheumy. I reduce 1/2 mg every two months and that is good for me. Paracetamol didnt touch my headaches. I think I know your cycling area and its pretty challenging. Maybe try to reduce things and listen to what you body says otherwise you can set up a battle between the GCA and yourself and one thing my four years has taught me is that that wont work. I fairly regularly as do others on the forum have a lie down in the afternoon and feel much better for it. I have also kept the demands of family and friends at bay. Especially family who have never really understood. Just as an after thought and I am sure others on here will know this. I have never thought getting really hot helps GCA.
Thank you for sharing your experience and great news that your steroid use is now so low.
Can I ask did you still feel like you could carry on with all those activities or did your body tell you you were too tired? My problem is I’ve got lots of energy and it seems that the GCA only tells me retrospectively that I’ve done too much.
Lots of energy… for many on higher doses of Pred it happens - because it affects the hormones that help you feel energized (cortisol) and sleepy (melatonin) but it’s a false energy- and runs out very quickly- and you come back to earth with a bump.
That is a false "high" that pred causes, mostly at higher doses but for some people at suprisingly lower doses.
And the retrospective bit is the reason we bang on about starting very low with the exercise and doing a strictly programmed build-up to identify what you CAN do without pay-back. For some reason the body doesn't have the same warning system for you knowing you are getting close to your limits - you have to anticipate it. I don't think that is the pred - it is the disease. We do see people like you and cycli, for example, who have been used to high level performance and "pushing through", getting into trouble for exactly that reason: you CANNOT "push through" with PMR/GCA at any level. But even mere mortals have similar experiences with, say, gardening! "Just 5 more minutes, I feel so good" can result in real trouble next day. And it can take a very long time to recover.
After diagnosis and starting the 60mg treatment of pred I felt so much better it was almost like a miracle. I think my high inflammatory markers both over a hundred showed how ill I had become. I was so lucky at the very start of the first lockdown getting a doctor at our surgery to take notice and arrange blood tests. The first morning after 60mgs pred I felt so much better but I was quite scared as I knew how serious GCA is. I continued to get so much energy that I felt I could run a marathon. I went mad sorting the garden out and suffered for it. This was quite early on in the process. My husband became very good at keeping an eye and suggesting I stop. I certainly couldnt have carried on with everything I did before but was lucky as we were in lockdown with glorious weather and the pressure being taking off for doing business stuff and everything else was such a relief. I go into the habit of being a bit kinder to myself and not living at a 100 miles an hour all the time. I got into the habit of lying down in the afternoon with all the windows open just revelling in the warmth and peace and quite of that time. Also feeling lucky that I hadnt had my sight effected. If I did to much in the early stage I would get a headache and then scared the GCA was looming its head again. I also got GCA symptoms every time I reduced the pred. It was hard to work out if the headaches related to GCA or over doing things. Is this happening to you do you think? Sorry this is a bit rambling, I am not very good at talking about myself but felt your situation was similar to mine.
It is very similar so I really appreciate that you’ve taken the time to send this reply and to know that someone else has gone through the same headache episodes. No one tells you that this might be a feature of the illness and indeed I was encouraged to keep up with my vigorous exercise!
What did you do when the headaches came back when you did too much or you were tapering the dose? Did you wait it out, or did you have to increase the Pred dose? How did you manage the pain?
After too much activity how quickly did your headaches come on and were there any indicators that the headache might be approaching eg tiredness or something else? Same question when you were tapering the dose?
Your experience is so helpful so sorry for all the qs!
There’s a private chat function on the profile page if you’d like to continue the dialogue privately there?
At the start of my illness I was quite scared as I had heard so many bad tales and the pred effects were weird. In the early days I contacted my GP about the headaches all the time. I think I must have driven him mad. When the headaches came back I would lie down and put a hot pack on my neck or cold depending how I felt. Quite often I would fall asleep and then it went off. I took paracetamol or codeine and paracetamol which helped a bit. I eventually persuaded my GP to prescribe stronger paracetamol 15/500mg which he did. They helped a lot. I also got used to the pattern of things and not so worried by it all. I didnt increase the pred just changed what I was doing. I think that I gradually learned that I needed more rest and to be kinder to myself. After to much activity the headaches came on gradually at the base of my head and If I didnt stop they would spread and get really bad. I had had Migraines before GCA so was scared that I would trigger one of those. Tiredness has always been a warning for me that a headache is on the way. With GCA and pred the tiredness was a lot worse.
The start and progression of your headaches sound very similar to mine and I have been panicking that they are the onset of the GCA symptoms all over again just like you. It sounds as if unless there are other symptoms it is simply a headache to be managed by rest. I am sure my worrying hasn’t helped the situation!
When I had the first headache it was less painful after a nights sleep but still quite intrusive, With the second one I kept waking through the night with it and it seemed to get worse during the next day, I probably should have just gone back to bed! It sounds like I j need to wait out the pain until rest sorts things out.
Paracetamol hasn’t made much difference but I will try a higher dose and maybe codeine as well in the future.
Thank you for all your help it is so reassuring to talk to someone who has had such a similar experience.
I think you may find taking it a bit easier will be a great help. Maybe check the headaches out with your GP or Rheumy just to put your mind at rest that you arent having a flare. I also think maybe high levels of exercise particularly at the beginning of GCA are culprits for giving us headaches.
Yes it is very hard for the super humans among us. We like to go for it and get rather used to being able to do so regardless. My headaches weren't long lasting thankfully apart from one occasion when I think I triggered a migraine and another time I was up on and off all night worry about a heart MRI scan I was due to have next day, which proved to be nothing to worry about at all. I haven't had a holiday apart from a four day arty retreat with some friends last November. Very calm and quite. I wouldn't be up to coping with the travel especially going through an airport and sitting on an aeroplane full of noisy people. The last four years have allowed me to say no to things I realise I don't want to or like doing. I quite like the new me, she is much calmer and less driven to perform at 120 miles an hour.
I was thinking about you yesterday and it came to mind that a lot of my headaches are related to my shoulder and neck . If I do a lot of bending over weeding, digging, sewing etc anything that involves a lot of forward changes in posture even to long on my computer will do it. I wondered if there is a chance that yours might be triggering post cycling. Just a thought as I think you area is hilly and you may be putting weight forward onto your arms and shoulders. Just a wee thought that may be way off the mark for you.
You might be right, I ride a road bike and although I have the handlebars adapted to be more upright I am bent over. Like you I seem to get a sore neck before the onset of the headache,
I got my blood test result back yesterday which confirmed a flare but interestingly it seems to have calmed down without taking an increased dose of Pred and just by taking it easy and adding in amitriptilene. I do feel is might be lurking though!
I would really miss travel but having cancelled two hols already this year feel completely unreliable now. I have a 70th birthday celebration booked in Mallorca with friends in June and feel very anxious about whether I’ll make it!
You will make your birthday celebrations - if you have a few weeks of peace and quiet beforehand. .. and a bit of forward planning…
it’s not rocket science, but it does require a change of mindset… and (said in the nicest possible way) I realise that may be the difficult part for you! 😳..
Slightly different scenario, I flew to NZ about a 15months after hubby had died [so on my own] to see daughter, and was on 6mg. Flew business class and booked special assistance at airports so well looked after, although did have stopover at Singapore, so a bit more active than a straight through transfer...
Felt great on arrival and for first couple of days, but on day three I fell asleep in chair in the afternoon for a long time.. it took my daughter and grandsons ages to wake me up!.😏 She got in a bit of panic and thought the worse... and said to me afterwards "I thought I'd have to ring N*** [her brother] and say I've killed mother! as you can see she hadn't, and I was perfectly find for the next 6 weeks. Looking back think it was down to adrenals [GCA was fine].
But as Bluey-1 has said, don't leap straight into celebrations...
That far more ambitious. Than my travel plans! Very heartening to know you did that though and had the confidence to do it too, I’m terrified if doing anything atm😂
You will make your holiday but as DL says, a few weeks of planning and resting up beforehand. It’s so tough having to plan life like this but I find even if the occasion/s are sometimes harder work it’s rewarding having time with friends. When I was very ill with GCA the resulting depression I experienced (steroids, insomnia, general GCA misery?) was exacerbated by my flakiness and lack of socialising. For a while I felt as if I were in a glass box watching the world go by. Can’t say I don’t get frustrated by having to be ruled by what my body needs and what my head wants to do but c’est la vie. Like you, I would miss travel but with planning it is possible to get to places. Book airport assistance at airports and rest up the following day, likewise on return, don’t plan a busy week.
Thanks for sharing your experience, it’s a major adjustment isn’t it? Still having difficulty getting my head round it but I am listening hard to what you are all saying.
Interesting isnt it when you try to piece things together. I think its good to try to strike the happy medium. You are obviously very fit and you most likely want to maintain that but at a lower level. It is possible and as Dorset lady says in her comment with planning your holiday and celebration will be possible. I was afraid early on but you get used to living and managing GCA . Explain to your friends the situation and take it easy and plan the holiday over the next few weeks. I can tell after four years when the dragon is raising its head and I need to moderate things in my life and get a rest every afternoon. Then said dragon goes back to sleep. It will be ok just listen to your body.
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