Me again. Can I ask if its normal to still have headaches when on Pred? I am down to 40 mg per day at the moment and wondering when it starts to hurt if i can take paracetamol or if I should be pain free if I am on enough Pred? I an 32 days in (began on 60 mg) and have head aches at some point every day. Is this normal as I adjust? Its soooooooo much better than it was though so I am not complaining. I am of the school that if it something is hurting then I need to stop doing what I am doing so dont want to mask the pain. I want to change the way i do things to manage it.
I have to do some work gradually or I lose the career I have built up. So, second part of question is which work colleagues do you tell? i work in an industry which is time sensitive and pressurized (but wonderful and creative too) and I am usually in the directorial role so everyone is looking to me for energy, and leadership lol (poor them) so they are going to see a change because I am normally superwoman doing 6 jobs at once.... now if I can manage a focused hours work I am very lucky.
Its such a roller coaster isnt it. Insomnia has kicked in now so I am wide awake at 3 am, but I am going to bed earlier and I expect my body is still adjusting to 8 hours sleep a night - I havent had that since I was 10 probably as i am usually a night owl working at 1 am lol.... If I were a painter I can imagine a paining of GCA would be very colourful, then dark and interesting like a big fun fair gone wrong and the machines going bonkers..... some days it feels tranquil.....
But today will be a very good day!
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Fieldofdreams
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Hello. Sounds like you’ve got your hands full! Personally, I only ever got pain in the early months in my temple if I was not absorbing, was doing too much or was ill (rarely). People usually find that Paracetamol etc does nothing for GCA pain so if I’m having a scare, I pop one as a test.
I was 54 when I got this last year and had had a career built up over 30 years. I had to give it up not only because of the side effects but I made the decision that this is a long term condition that requires my body to go into remission. Pred is not a cure, it is merely reducing the potentially dangerous effects of the runaway inflammation while your body decides whether or not to stop attacking itself. The Rheumatologist in the ER made it sound like Pred was going to take 18 months instead of at least 2 years like I would have to take 2 Paracetamol a day but lead a normal life. The other reason I gave up was because of side effects that are not conducive to being a professional and a safe driver such as sleep deprivation, fatigue, muscle weakness, emotions all over the shop to name a few. I felt through all the racing thoughts that I was sharp and alert but actually I couldn’t martial my thoughts, was terribly forgetful and frankly a bit weird; I could not function. The other thing they don’t tell you is that as time goes on, the side effects build up not to mention physical appearance that you won’t be able to hide, like a moon face. Weight gain and development of diabetes are a big risk but can be avoided by a strict avoidance of carbs such as pasta, grains, rice, flours, sugar. Not one doctor told me this, but luckily this site made me aware on day 2 so I didn’t put on weight. Another thing to research is bone thinning which required an excellent diet and specific attention to certain nutrients. However, the moon face and redistribution of fat to hips and tops of thighs still happen. Keeping it quiet may end up being not an option if you want to avoid speculation. Some people continue to work but not many and you may need a higher Pred dose for longer. I don’t mean to be a spoiler, but keep in mind a plan B, just in case. It appears that those who get this are usually go getting people, who are mega busy and Superman/woman or have had a trauma. It broke my heart to stop working but acceptance of this condition and that it plays itself out in its own time, not your head’s, makes a huge difference. I am waiting for new doors to open as and when it is time, trying not to be impatient or crying over my old life, some of which I may get back. There have been huge benefits too for other forms of self development made easier because I have so far avoided PMR and pain that goes with it. I hope you get some replies from those who do work to get views from ‘the other side’.
Dear Snazzy, gosh thank you so much for your post. I am so sorry that you had to give up your career it must have been devastating and I can feel the sadness and heartbreak in your post.
If I had to give up mine then I cant think what I would do. I am 57 and just this year reached the where I want to be! I am a theatre and opera director and have been in the arts all my life - it is my life! It has resulted in me changing a few things already and putting into place the help that I was always able to get but never thought I needed to ask for - and I did do too too much, way too much which is maybe why i am where I am in terms of GCA! I am lucky too, I have avoided PMR so far.
As an x dancer too putting on weight is not a good prospect. I have so far maintained my weight with a strict diet although at first I was having a luxury one piece of toast in the morning, that has now gone! I am also vegan so I have to be careful to get enough protein. The moon face has appeared but I am learning to love that I have scoured the internet for a Pred diet but cant find one so I am researching it and making my own full of lots of good quality food.
I haven't as yet been in a work situation where I need to do a full rehearsal day... and I can avoid that for a little while yet - and then I will have an amazing assistant. the only thing that is keeping me going is the positive way I am changing and feeling that if I take this 100% seriously I will be able to maintain a balance. I cant get here now and not be able to enjoy all that I have cherished and worked for all my life since being a young girl. I also do work in schools and community groups to inspire working class kids like me who left school at 15 that they can be creative and express themselves. Theatre is part of my DNA - lol.
Hello from a fellow vegan! Your work sounds amazing - I'm sure if you pace yourself, you'll be able to continue with it, although as you said, with help from an assistant.
A book that was recommended to me is Go Lean Vegan by Christine Bailey. It's geared towards losing weight, which I don't want to do, but it's very useful for low carb meal planning.
I recently had a consultation with a vegan nutritional therapist, which was very useful. Basically, I'm doing everything right, but she just tweaked a few things, and suggested some supplements.
Re telling your work colleagues, I think it would be advisable to let them know about your illness and, although you'll continue working, it won't be at the same pace they are used to. I did that with my work colleagues (no 'bosses' because it's a cooperative!) - I just forewarned them that there may be days when I come in late and/or leave early. There have been no problems - so far! I'm very fortunate in that I'm now pain-free and more or less fatigue-free (touch wood!); but I do still have a very fuzzy head and find it difficult to concentrate. (I was diagnosed with PMR a couple of months ago; started on 15mg pred; will be going down to 10mg this weekend.)
Aren't the twists and turns of life strange?! We just have to go with the flow...
Dear MhairiP, great to meet a fellow vegan! i will definitely get the book by Christine it sound great. i was thinking too of going to a nutritional therapist. where did you find her?
what you say about colleagues is so useful. I just had a meeting with someone today who is a new colleague and told him and then I set out how I will be able to work. Because he didn't know the old me he just accepted it as normal! The shock will come when I tell people who have known me for 20 yrs and they see me taking a break and not being first in last out .... lol
it is brilliant that you are pain free and fatigue free. I do think a great diet helps and a positive mental attitude... the alternative is fat and moaning! I can cope with most things but getting fat! (x dancer... lol).
Heres to another good day tomorrow going with the ebb and flow..
You are obviously very highly respected in your field - before you know it, your new 'normal', i.e. a gentler pace, will be accepted by your colleagues as the norm!
I'll direct message you with details of the nutritional therapist - I don't think we're allowed to mention businesses/brands, etc., here.
You are still early days, and maybe through your circumstances are trying to do too much - that’s maybe why you are getting intermittent headaches. As SnazzyD says paracetamol will do nothing for a GCA headache, so that’s always a tester - if it gets rid of yours, it’s not GCA!
Work colleagues do need to be aware of GCA, I understand maybe you don’t wish to impart too much information, but if you try and carry on as normal you will just make things worse - for you! Give them a brief outline of how you feel, and emphasise the fatigue that may affect you. A good employer who values your work will try and accommodate you as much as possible - but they do need to know!
Thank you so much Dorsetlady. I haven't tried it yet but as you and SnazzyD both rightly say I have to tell people and I am doing to slowly as things move on. I think I am trying to change and do too much - I should have stayed on the Greek island longer ..... I am self employed so I cant take the normal sick leave etc. I work in theatre and opera as a director so its quite a pressured job.... but I work with amazing people and I think when I take them into my confidence they will be only too willing to help. I have built up a career slowly and just reached my pinnacle at 57 this year!!! I was in love with my life and then wham! I had worked too much and my body couldn't cope any more i suppose. i will take your advice and work out the GCA strategy a day at a time, its the only way isnt it. thank you so much.
I understand that being self employed you don’t have the safety network that others do, but you must come first - in a different sort of way.
Your story epitomises so many - busy, stressful, fulfilled life that suddenly can take no more - and it Says STOP!. It comes as a shock, but as in recent discussions - life does go on, it’s just in a more sedate way than before.
You may feel better because of the steroids, but the underlying illness is still there- so it has to managed as best you can. Some people achieve that better than others.
Thank you DorsetLady, you are so right. I need to listen to those on here like yourself who are much further down the line than I am and remember the underlying illness is still there.....
As my doctor said when I asked what Temporal Arteritis was she looked at me and said, "its quite serious....its not flu and it isn't going to go away too quickly...."
Actually it can be more than “quite serious” - as I can testify. But she is correct, it’s certainly not flu, and it isn’t going away quickly. But at least she seems to have more understanding than many, so that’s good news for you.
The sooner you can get your head around the fact is going to be around for some time, the better.
As I’ve said in other posts, life does go on with GCA, but you have to realise it has to be in a slightly slower lane, and you will probably need to do more planning beforehand to make sure on days that you need to go at full pelt, you have covered all the options, so you can make it as easy as possible.
The biggest thing most people find difficult is the fatigue, so you really need to build in rest periods - for some it might just be 5 or 10 minutes, for others it's longer!
yes; my doctor has quite an ironic way with her and you are very right about the planning. I have begun to shift my diary especially when I may need to travel. Making sure I have good food and enough time and also somewhere to go for a rest break.... at the moment the slow lane feels right and actually, the quality of what I will do will be better as i am not trying to do too much......
From the income side, i will adjust to that too....
Yes you will adjust to reduction of income. It’s very nice to earn lots, but as you get older and wiser you realise that’s not what life is all about. Your health is paramount...what’s the point in having money in the bank if you can’t enjoy it! As the saving goes “there are no pockets in shrouds!”
I have never earnt a big income sadly and a single lady been independent all my life... the arts appear very glam but in reality not so. At 57 this year I finally said i felt financially ok because of the future work in the diary rather than living show to show and running around for small jobs to make up. lol. Well, fear = challenge = opportunity so with my new found self i will look for other opportunities and as one door closes a window will open warmest wishes x
I think SnazzyD has says it as it is about working with GCA...difficult though it may be to accept. There may or course be others who have GCA who can work but who never need the help of this forum.
Were you completely headache free on 60 mg? As if you were not, then maybe you needed a higher dose to ZAP the inflammation at the beginning.
How did you taper, because 20mg in 32days seems mighty quick. This would mean that even if the inflammation was ZAPPED initially you may be at risk of a flare.
And are your headaches at the beginning of each taper? And then settle down?
Withdrawal symptoms from pred give headaches for the first few days, but should settle. Original GCA symptoms kick in after a week or so of dropping dose, and are a sign that dose is not high enough.
So if your taper has been too dramatic a drop in dosage, and it is not zapping the inflammation either you will get a double whammy of headache a lot of the time. Mamici1 will be along later. Her story is very similar re symptoms, tapering and problems.
Try paracetamol to see if it helps, as it won’t help if it is a GCA headache.
Finally....your job. It sounds as though you love it! And it is admirable you are willing to make changes in order to get better.
Are you employed? As you may need some help from your employers regarding normal, phased return, or part time working. There are people on this forum with experience in how to manage your kind of work dilemma, And they I’m sure will be along later to offer some advice.
I wish you all the best in a very difficult situation when you re young and flying high in an interesting job. (What do you so, by the way?)
thank you so much for your great advice. I have tapered twice now - both at 10 mg each time. The rheumy says that that is the method at the hospital I am under. But maybe I might be trying to do too much too soon as well..... ?
I am self employed - therein lies the rub! and I work in the arts.... I am a theatre and opera director working nationally and internationally and have my own theatre company.... this year I just reached the pinnacle of where I want to be but pushed it too much with too much work and favours for other people. Now I have to change and have a good plan in place because no work equals no income and for me no joy. To lose my work in music and theatre would not be an option., its part of who I am and I have done it since I was 5. I also do some work in schools to inspire other working class kids like me that they can do it too (not work too hard bit though :). So we will see how we go; its been a big wake up call but as SnazzyD says, its up to my body now and me to give it the best chance i can.
I am being very optimistic and dropping some jobs and re-planning others. I will test out the paracetamol and all the advice on diet I have been soaking up so I don't look like moon face (which has appeared) and moon belly and mitchelin tyre woman.
Tapering is such a minefield. Many find themselves at odds with medics who stick to a schedule on paper, ignoring the small print that says reduce as the patient can tolerate. I have had to smile sweetly but remain quietly belligerent, but have had a couple of docs trying to scare me with tales of doom. I just say that it’s my decision to avoid a flare from going too fast and ending up back on higher doses and also avoid withdrawal so bad I can’t function. I could just about cope with 5mg drops at your level but soon had to change to 2.5mg. This is the time when you so don’t want to give up your life but Pred makes it hard so you want to get off it. I was on 40mg after 60mg for 6 weeks before furhter reduction started and I do think I needed it because it was deffinitrly active. However, listen to your body and if you are totally floored in the early days of a reduction, slow down to make your days smoother. I did get a stinking headache about day 1-4 for 1-3 days or something like that.
By the way, moonface happens anyway, but you can stop putting on loads of weight elsewhere. I grew my hair longer.
(However, listen to your body and if you are totally floored in the early days of a reduction, slow down to make your days smoother. I did get a stinking headache about day 1-4 for 1-3 days or something like that)
What you say above here is exactly what has happened to me!! 10 mg is a massive drop. A doctor I met on holiday did say she would advise dropping by 5 mg stages .... everyone seems to be different... as you say its best to listen to your body...
I am also letting my hair grow longer and now I can stand someone touching my scalp I have had the sides re-shaped
Hi Fieldofdreams, Everyone is different, for sure; and I have suffered with headaches most my life, but after starting on Pred (11/2017) I have had maybe 3-4 headaches and they don't last all day like they used to.
You are "32 days in," and down from "60mg to 40 mg," right? So that's like a drop of 5 mg per week. That was exactly my first taper (5 mg per week), which was way too aggressive and ended in a bad flare! When that failed I had to go back up and start all over again. When I started to taper again, we we went to 5 mg every 30 days and that seems to be working well.
Could you be experiencing steroid withdrawal, or just reducing too fast? Any other symptoms?
thanks mamici1. SnazzyD responded and she said ( listen to your body and if you are totally floored in the early days of a reduction, slow down to make your days smoother. I did get a stinking headache about day 1-4 for 1-3 days or something like that).
What she says about 1 -4 days for 1 - 3 days is what is happening to me.... today no headache, a bit of tingling at side of face but copeable. Yesterday I felt shocking and had to go to bed at 6 pm after a relatively easy day .... I felt sick, nauseous... but today has been a good day and i was a little more active ... but once again during today I off loaded some work and did it in a more relaxed way.... As I have not experience steroids before I dont know what the normal withdrawals are.... I am less anxious and shaky than when I started on them except when I have tapered..... its a mine field and a day at a time isnt it.
What a fantastic job! I can totally see why you cannot lose that bit of your life. But it does sound like telling colleagues what is going on is possible, probably essential, so they can take some of the burden from you so you can cope.
You are doing well to research lots of ways to help yourself.
Do you feel different at 40mg to the way you felt at 60mg?
When do you see any doctor next?
Where is your next production? And can I come? Only joking...
yes, i will be telling close colleagues - I've got to when I work at bigger organisations for H&S reasons anyway on Pred in case of emergency. When I was on 60 mg i was in the early days, very frightened and they did make me very anxious, hot, shakey. At 40 mg (6 days now) and I feel less anxious but insomnia has kicked in... lol. I have just seen the rheumy this week and my next apt is in 3 weeks during which time he wants me to go down to 30 mg in 2 weeks time before I see him....
My next production is in Swansea on 2nd Oct.... do you live any where near?
Nowhere near Swansea unfortunately. South London/ North Surrey borders.
I just have a little niggle in my head from what you say that the 60 mg did not deal with everything well enough and you dropped down too much and a bit too quick. This is not because I have GCA...PMR only, but because I have read so many posts on this site in the last three years, and there are themes and patterns which keep coming up.
I know you felt horrible at that dose, as most people do, (as you say anxious, shaky) but it might be worth asking your doctor if the rigid guidelines should be adapted to the individual in your case?
Ah what a shame. We were in London in July. Now we are on tour.
its interesting what you say about the dose and I think I will ask the doctor about it before I drop again. I dont want to drop before I feel confident. Each time i have dropped I have noticed a pattern and I feel awful before I start to feel better again....
Did you stay at 60mg until the symptoms were resolved? That can take 2 weeks, even a month, even at 60mg. To have dropped to 40mg in 4 weeks is pushing it - it may work for some but the guidelines ALL say that a reduction may have to be tailored to the individual. I have this hope that the doctors who say "This is how we do it and tough" will one day have to take pred and reduce the way they told patients to do so. Doctors I know who developed PMR have said they see it all very differently now.
mmmm, this is interesting. The severe symptoms reduced but I was still having head pain, but minor in contrast. Would be interesting to hear from a doctor who has PMR and GCA...
We've had a few on the forums who developed PMR - who had some really bizarre ideas about managing it. One arrogant creature (not on here) who informed us that if it lasted over 2 years it by definition WASN'T PMR - he never did tell me the definition he was working on! One lady who never offered any help of any shape or form and one lady who admitted she had always tried to force patients to reduce and now realised a mg or two here or there wasn't that important in the great scheme of things!
mmmm. Met a few but very lucky so far. One of the eye chaps was a bit 'well Ive never seen someone go flushed and nearly faint like that before when I asked them to look to the right....' I think we will do an MRI scan says he, 2 weeks ago and then forgot to order it... so my rheumy chased him up about it. The eye chap wrote to him and said this is very unusual symptoms and may not be related to GCA... my rheumy just insisted he book the MRI as belt and braces. He is fab - very cute too
Trying to smile through all of this I did pay to see him privately first as I couldn't bear to wait 6 weeks on my own...he then transferred me to his NHS list and they have been amazing; appointments every week for 4 weeks. waiting for bone density now. had chest x ray too.
I am looking for now is a really good vegan Pred diet sheet. I have been to my great nutritionist and got some supplements. Never did I think I would be choosing a little day to day pill carrier
I have a proper bonny moon face but determined thats the only bit thats going to go round! In 5 weeks I have actually lost a llb. if I can stay as I am I will be happy. Mentally I dont cope if I am fat (x dancer.... dont even ask)...
thank you so so so much for being on this forum. Its a life line. None of my friends know what I am talking about and just ring me after they have googled it to say - gosh we didnt realise ,we just thought you were tired..... lol.
Great excuse now to get out of things. I have developed a code when I have to do some work with colleagues. Different signals to my ear mean give me 5 mins then I am out of here for a rest .... if i touch my left ear as well it means I am not coming back ... lol... cant manage big groups yet. I find talking to more than one person at a time irritates me and my temple starts to ache - all the animating and concentrating....
Hi there, the experts will advise on the headaches. I have managed with gritted teeth to carry on working with PMR. The early days were the worst before pred kicked in to smooth things out. I would say you need to tell your colleagues. You will be slower physically. I found it difficult to get out of my chair and to walk. Not easy in a busy office. My colleagues were kind and supportive. It's what you need. Good luck and you'll find lots of sound, good support and advice on here.
thank you teesher. I hope that you are coping a bit better now. I had a little test with a colleague today and he was wonderful... alongside the support on here i dont feel so nervous any more.
Even though I was the boss at work, whilst I didn't tell everyone everything by no means, if there was something going on with my health I told them if I felt it was affecting my performance or attitude. They appreciated my telling them and I didn't have to feel guilty when not up to par. They told me it went a long way to making me human rather than superhuman. Though they were gobsmacked when they heard that I was taking time out to care for husband who was dying if he didn't get a transplant, since they were not aware that he was even ill until the situation became dire. Except of course my secretary and deputy head who respected my wishes for a tight lip at the time. I found everyone to be extremely supportive. My husband did get the transplant and lives to tell the tale ten years on. Hope you are given the same level of support from those around you.
Dear Marilyn1959, wow thank you for sharing your journey with me, how inspiring too. i had a little tester conversation with a colleague today and approached it with humour and she was gobsmacked with some of the little changes i was proposing, in a really good way. I work freelance at several places and feel very hopeful after this first approach (underlining that it is a serious health issue) that i will get the support. Warmest wishes
Have just read what you do. How wonderful. A person out of my own heart. Music, art, dance and drama - I love the arts! Was once referred to as a frustrated thesbian by a work colleague many moons ago!
Education was my chosen career pathway and, passionate about the arts, I always ensured children in my care had ample opportunity to explore and express themselves through the arts!
After retiring from Headship of a junior school, landed a part time job with Music Services advising leadership in schools on arts and music curriculum, lead CPD for staff across the borough, work with school choirs as well as directing one of my own. I also work closely in partnership with the Royal Opera House and am this year one of their partners for working in schools delivering singing workshops. I have been fortunate enough to work with local school choirs teaching them commisioned ROH works and conducting them as a combined choir in the local music festivals involving over two thousand children aged 7-11 years Amazing! A wonderful job, that is flexible around my needs so I am really blessed. I know where you are coming from in terms of what you do, how much you value it and what it means to you. It will be tough, delegate where you can especially with any hands on delivery, since it takes so much energy. It will be frustrating but you may need to work back stage for a while just manipulating the strings for a while to give your body a chance to catch up with the mind! Best wishes.
Wow Marilyn what you are doing and have done is incredible! I bet if we dig a little deeper we may know each other and or have worked with the same people. i will send you a private message. It would be good to have a touch stone in the industry who knows what its like to cope with PMRGCA....
You mentioned in an earlier post that the headache was not completely gone at 60 mg. I wonder if you did not stay long enough at that dose. Especially as you are down to 40 mg already. I wouldn’t drop again for a few weeks, and consider talking to your doctor about all this. Is it GP or rheumatologist you see? If unhappy get a second opinion.
The ‘feeling worse’ at the beginning of a new dose is down to withdrawal symptoms, and should settle within a few days.
thank you Mary. yes it is the rheumy who is doing the tapering. My head is not really free of little niggles.... sometimes its worse than others. I feel I may need to stay at 40 mg a bit longer.
Even then it might not help - everyone is so different and they would be bound to be the person for whom 40mg worked in a day and the taper wasn't a problem! Added to which - given it is a disorder of the older generation, I bet most GPs/rheumies who did develop it would be off sick and take retirement on illness grounds. They are allowed to retire early at 55 anyway and always tend to go at 60.
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lol (poor them) so they are going to see a change because I am normally superwoman doing 6 jobs at once.... now if I can manage a focused hours work I am very lucky.
Do you know how to tell?
What should a GCA relapse feel like and can it happen on a high dose of pred?
What do you do to get yourself going?
Do you increase pred for 3 or 4 days when traveling?
What should I be doing about tapering prednisolone?
