Got put on 40mg Pred, I didn't realize how awful this was. Been on 9 days now, can I stop cold turkey. What if I haven't got it, my blood work was not overly elevated my eye tests came back clean, as for a biopsy I have no idea why I want to do that when only 35% come back positive and everyone gets treated with Pred as though you have it anyway, that's something I really can't get my head around. I would like to stop everything and see how it goes.
Recent GCA suspect: Got put on 40mg Pred, I didn't... - PMRGCAuk
Recent GCA suspect
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Bigwhite
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DorsetLadyPMRGCAuk volunteer
Hi,
It entirely your choice of course, but there must have been good reasons for your doctors to suspect GCA.
As you have only been on Pred for 9 days yes you can stop, but I would urge you to think seriously about it.
A cautionary tale - I was undiagnosed with GCA for some considerable time - diagnosis only came AFTER I’d permanently lost the sight in one eye, and it was touch and go whether I would lose sight in other one. Fortunately I didn’t.
Not saying this will happen to you, but do you really want to risk it?
You may feel rough on the Pred at the moment, but that will improve - if you lose your sight through GCA there is no way back! Once it’s gone, it’s gone!
Hold steady there. You’re in the early days of bewilderment and, “I didn’t order this!”. I know from experience being whacked on high dose Pred making one feel almost worse than before Pred. This is especially the case if you are one of those with no raised markers and possibly negative biopsy. Meanwhile Pred makes the mind race and be foggy, makes you feel weak and hungry. To be feeling like this on what seems like a hunch can be alarming. However, one thing we do know is that most docs hate Pred so they wouldn’t put you on it unless they had good reason. Not being on Pred risks your eyesight in the short term and large artery damage in the long term. I’d stay put while you argue the toss rather than stopping. Finally, your body will adjust to this massive influx of go juice and you feel a bit less out of control. Sleep will be difficult, so make sure you nap to make it up. Stick with this forum and ask loads of questions.
How did it go BEFORE you started pred, what were your symptoms? I cannot believe that a doctor gave you 40mg if they did not think something was wrong. As the others say you can stop cold turkey up to about two weeks of taking pred. However if you have got GCA you are opening yourself to vision loss if you stop taking it.
Looking back it started 7 months ago, shoulder pains and tinitus, in the last 3 to 4 months a sensitive head but not painful just itchy, in the last month constant jaw ache, neck ache and pressure around my temple. I am 52 by the way, I still have young kids so I have to keep active, I enjoy skiing etc. A couple of weeks ago we decided to hire bikes in Vancouver and do some back to school shopping, the 4 hour drive to Van wasn't nice, I couldn't wear sunglasses or stand any pressure on my head, the cycle helmet made it worse, my wife drove home that evening and I really didn't feel well. That was the start of my doctor's visit. Blood tests show a slight elevation but nothing much. Optician report normal, although I do feel my right eye a little blurry on occasion. Thankfully I own my own business and set my own hours and have no financial concerns, I just want to get through this and get back to as normal as possible as my life was nearly perfect.
“I just want to get through this and get back to as normal as possible as my life was nearly perfect”.
That’s what we all want, and I’m sure your family do as well - but if you have GCA, and from my personal experience it sounds very like it, you need to take this seriously.
Yes, you are on the young side, and as PMRpro says not everybody has raised markers - however as we say time and time again on here SYMPTOMS ARE THE KEY - and your symptoms are classic!
The high doses of Pred, and for GCA your dose is at the lower end of the starting scale, are not nice - we know, many of us start a lot higher, but your body soon gets acclimatised to them.
You are young and presumably healthy pre GCA, and male (which seems to make the journey easier), and I’m sure you want to “see” your children grow up - so consider yourself fortunate that your doctors have identified what they think is GCA and are treating it - there are many who were not so lucky.
Sorry if this sounds brutal and unsympathic - it’s not meant to - but I am trying to stop you have to go through a life changing experience as I did.
Dear Big White, i am so sorry to hear your journey. We are so similar, see my posts. I was diagnosed on 13 Aug, classic symptoms and low markers; put on 60mg Pred. Woah what a roller coaster that is. DorsetLady, SanzzyD have kept me going. Listen to their wonderful advice. I kept my sight but now am mindful that its a day at ta time. I am 57, own my own company, theatre and opera director, cant stop, didnt stop, looked like Frankenstein with a swollen face, raised arteries, head aches for months that I worked through, then couldnt open my jaw or my right eye and finally when the last night of my current show finished I finally went to the doctors Boom! If I had been misdiagnosed like beautiful DorsetLady I cant imagine what I would have done. It is a massive wake up call. No one wants this but see it as a positive. I am having got change my life if I want to keep on working at the job I am passionate about and have just reached the pinnacle of my career.... I am now down to 40 but think I have come down too fast (only 33 days in) and suffering still with head pain - and worry that the swelling is still active. Listen to folks on here - theyve all been on this trip. Good news is that I managed a solo holiday on a Greek island to do yoga a week ago. 21 days in I flew and had time to reflect, listen to my body and my head and come back with a very different frame of mind. I couldnt do anything but sit and breath for the first two days but by day 4 I was swimming in the sea and doing some poses that I have done for 30 yrs. I dont have young kids but i know that when I tell friends what has happened they are amazing and within reason can help but you have to be assertive with yourself and change too. I have found myself being slower with things but actually doing it better - in being slower in shops etc people around me stop and wait for me, where I was the one that was always doing the rushing dance around with the trolly. My focus is to get home without my temple burning or having to sit down. i was never in bed before 12 or 1 am and very often do a 16 hour day in production time. GCA is not great; its like your body pulled the plug out and the steroid side affects are pretty pants as we say here (think big soggy old wet jeans....) but its better than the alternative.
We are so so Lucky. Every day is a good day that you get through and we have a chance to do it differently. My Temple Artery is now called Tina and each day we have a pact that if I behave (dont try to do too much) , eat brilliantly (get the diet sorted) then she will behave...... you will have the joy around week 4 of the 'moon face'.... I was on holiday and woke up thinking I had an allergy. My eyes puffy. next day ,the wrinkles looked a little smoothed out and I had chubby cheeks like when I was 10! My right eye droops a bit, but my smile never leaves my face now in public, especially at night because I look like the full moon approaching you! I am less frenetic. i used to say to travel through life like a swan; appear calm on the surface and paddle like crazy under the water... well I had been padling like crazy for too long and on the surface too. Now i am learning (yoga and meditation) to REALLY be calm on the surface and paddle with long slow lean strokes - its still going to get me there - but with more grace and more style. Be a BigWhite Swan!
Come on BigWhite. You can do this!!! You have too, you are in an elite GCA club on here now and we will be helping you. 
Just to add, my eyesight started progressively shutting down quite suddenly over an hour or two but eye tests were ok at the time.
PMRproAmbassador
Up to 20% of GCA patients never have elevated blood markers at all. You can have GCA without the eye specialists being able to see anything - and you can have no symptoms at all and still wake up blind in one eye and then there is a very high chance of losing your sight in the other eye within a couple of weeks even with treatment if it isn't soon enough.
Doctors don't lightly put patients on 40mg pred and what you describe is highly suggestive of GCA. All of it - glasses and helmet that hurt, senstive scalp, jaw pain, feeling ill.
It's your choice - but how will you feel if it really is GCA and you lose your sight? Skiing is still possible but it is a darn sight harder. Like everything else.
Living with pred WILL get better - but you do have to be patient.
Hi, first of all let me say that none of us wanted to join this club. All of us arrived kicking and screaming, if only in our own heads. I was first diagnosed with PMR then two months later with GCA so overnight my pred dose went from 12.5mg to 60mg . Shock, disbelief, anger and eventually acceptance. It does get better, there is light at the end of the tunnel and it’s not dark all the way. All good wishes, stay with us there is a lot of information here, sympathy if you need it and a few laughs along the way. Dot.
Thank you for the support, and thanks to all the informative resposes. Not wishing to go blind or have a stroke, this morning I carried on with Pred.
Good.
You will find support and friendship on this forum- please come back at any time to talk, question or moan!
We have all been where you are, and we do understand what you are going through, and what’s to come!
Take care.
An well done to you, stick with the preds an stick with the forum . I started on 60 now holding at 40 ,am awaiting results of tab ,I hate what they do to me , but I’m old enough to know prevention is better than cure , expesially when there is no cure, ....for blindness ,wishing you well
I cannot add to the previous posts but send my best wishes to you as you are having to cope with the high steroid dose.lt does sound very likely that you could have GCA, and it is important that it is treated urgently, please keep posting to let us know how you are.
I am so sorry you feel so terrible.
Unfortunately, one of the big issues with starting steroids can be the horrible side effects as your body gets used to the medication.
No matter what you cannot go cold turkey, especially on steroids.
Stopping steroids abruptly can send you body into a spin, and you can go into secondary adrenal insufficiency, the hormones of the body become disrupted and it can have very nasty affects on your whole system , especially your thyroid system.
This is part of the reason that when people eventually improve drugs are tapered down to prevent these nasty side effects from happening , causing you a whole gamet of new health issues.
If you are really struggling , contact your rheumatologist by phone , ask if they can ring you back because you are feeling sick on your meds and need some advice.
They may consider reducing your dose and building up slower so your body can become accustomed to it, and it can start having the therapeutic effect on the actual symptoms it is meant to achieve. If your side effects are not usual they may choose to do something else, but it is better to discuss it , as getting GCA under control is vital and needs proper monitoring.
Try and drink alot of water and green tea, have small light meals , stretch your legs , do some gentle movements every few hours and get as much rest as you need when you want it, your body needs time to get used to its new regime, so will make your fatigue worse for awhile.
Try and stay calm and relax , ask for advice for any symptoms individually as you go along on this site, and I am sure all these lovely members will be able to give you lots of tips, support and advice to help you along the way. And don't be afraid to ring your local surgery for any thing, even small, you need and have the right to get as much medical advice and reassurance during this time of transition.
Please let us know how you get along , and have a gentle electronic hug from me.
Actually you can come off steroids cold turkey - just as long as you haven’t been on them more than about 3 weeks which is about the time it takes to stop your adrenal glands working normally.
Not saying how good you will feel though.
Short term use of steroids is prescribed for other Illnesses.
"They may consider reducing your dose and building up slower so your body can become accustomed to it"
It is very unlikely if the diagnosis is GCA - there isn't time to mess about and that is why such high doses are used from the outset. There is someone on the forum who was put on oral pred in the evening after being told that they would use i.v. which is a higher dose and instantaneous in action. He woke next morning with sight loss in one eye. Once it is gone, it is gone.
Yes, exactly , which is why it is such a relief that Big White said they would stay on the meds , the last thing you want to do is muck about with your eyes when they are playing up. As an artist , I am willing to go through just about anything to stop that loss of vision.
In your opinion is it a good idea for Big white to contact her doctor and let them know what's happening ?
Just to let you know how it's going. I hadn't really taken any notice of my eyes before, the opticians said there was no problem, but I have noticed fast deteriorating close up in my right eye that doesnt seem to be improving but it's stable and it works, but this morning my left eye had blurry vision (unable to read road signs with just the one eye), I was driving for a few hours so kept covering it to check, now at 945 after two and a half hours in the road I took my Pred, over the next 30 min my blurry distance vision stared to get back in to focus.
Also after taking the Pred I get a weird sensation through my temples a sort of headache but it's not painful, I feel as though someone has turned on the tap.
Thats today's update from the newbie, thank you all.
I guess your improvement in vision after taking your Pred today , is proof that you definitely need it.
The pain in the temples can be a side effect, but it is also part of GCA itself , deterioration can come thick and fast.
May I suggest that until you get a handle on the vision related problems you try and rest your eyes and brain as much as possible. Lots of driving while suffering from blurred vision and head pain is not a good thing, not just in safety terms but also because it makes you eyes more tired and aggravates the symptoms.
Unless you really need to do alot of driving for work , it may be a good plan to reduce it now until things are stabilised, let someone else be the kids taxi service!!
Also reduce your time watching TV or using screens ( unless you are checking in with your GCA mates of course, giggle!)
Have a pair of sunglasses that both shade your eyes from the light sensitivity , even indoors in places with those glaring fluorescents, they help to reduce eye tiredness in bright light.
I keep a little spray bottle of distilled ( or boiled then cooled in fridge) water , to mist spray my eyes if I go out in the wind , hot weather or busy doing close up work to reduce the irritants and soothe the throbbing. Particularly important for outdoor lovers like ourselves.
And get sleep when you need it , when the pain goes from the eyes into the temple and head sometimes it is all I can do to stop the throbbing in the temples and sinus.
Although an unusual feeling sometimes the tap like feeling in the temples can be a positive sign of things happening like reduction in inflammation , others times it can mean you need extra help. It's important to keep a diary at an early stage of your symptoms , new and old, rate your pain, note things that make you feel better or worse and note your side effects or physical and mental feelings just after taking your meds and show it to your consultant. It really helps them get a better picture of how things are progressing , and means the clinic brain fog doesn't make you forget something you noted that may be nothing but could be important.
So tomorrow is a new week, it would definitely still be a good plan at this important early treatment stage to let your doctor's know what's going on, ask for some advice , and organise a follow up appointment with the Rheumy or GP to discuss your symptoms and concerns.
Keep in touch , keep asking the amazing members for help , and if you want just a chat or rant feel free to message me via the private chat too, after you have given yourself a much needed rest of course!
Yes you can under three weeks on steroids but as you say you may feel worse than you did on the steroids.
There is still alot of research going on , everybody can have a unique response and the type and strength of steroid , your overall health and the type of illness you are taking the steroids for can all make a difference to the three week guideline.
Adrenal side effects can happen, with many forms of medications, especially on stronger or higher doses of steroids if these are abruptly stopped or changed even if you have only been on them for a few days , even with steroids for minor illnesses. My friends , generally healthy 18 year old daughter , who is now on mood moderating drugs and has had to buy a wig is a case in point. She had only been on a high dose new steroid for a week before an abrupt stop because of side effects.
The amount of time you have struggled with growing pain and other symptoms before beginning a treatment can also make a difference to both the side effects you suffer and how much your adrenal function , or vitamin and mineral levels had already altered before beginning a new drug. Unfortunately, we don't generally get offered a full MOT blood test before starting strong or new drug regimes which would probably actually help us all when first starting medication , in case we need some sorts of supplements to help prevent or reduce the side effects of nausea and fatigue that we get.
We are a race of wonderful variety, and we are all in agreement that we should check with our medical care before making drastic changes to our meds , we all know how flares can happen from all different things , it is not worth taking the chance .
Thanks for the reply.
Welcome to the club that no one wanted to join. Take the good advice that’s offered, especially from the ‘aunties’. It’s a horrible illness but things do get better in time. Sending a hug.
Welcome to the forum Bigwhite. As others have articulated, life will certainly be different moving forward for you and those closest to you. Your diagnosis is very recent and with it, and high doses of pred, comes an array of feelings.
I have PMR, so others with GCA have a better understanding of it all, but I can identify with feelings in the early days of shock, panic, sadness, worry, loss and anger. I had just married my sweetheart, we bought a house to renovate, we moved and retired at age 55. PMR symptoms started 3 weeks after we moved and I remained undiagnosed for 5 months. Those were the darkest times.
I will say, however, that things do get better! With acceptance comes a sense of peace. Gather all the info you can, these folks are a wealth of knowledge. Utilize your supports whether that be family, friends or medical professionals. I have found that reducing stress and changing my diet/lifestyle has been key.
We are here for you! And I’m so pleased to hear from a fellow Canadian.
Wishing you all the best moving forward, keep us updated.
I had GCA, was on high doses of prednisone. It was a hellish journey for 18 months (till I tapered off the drugs in June) but was assured it was treatable and manageable. It wasn't easy but I advise - please stick with it. Some days will be good, some will be disappointingly bad. Don't give up hope.
I was lucky, had a good GP, a good rheumatologist and they kept me informed of what was happening. The most important advice was knowing what are the effects of the disease and what are the side effects of the steroids. Once GCA has been 'knocked on the head' after the high doses of prednisone, the bad stuff is mostly steroid withdrawal. You just can't come off it, cold turkey, or else the disease will come back with a vengeance. The forum helped too.
All the best.
So today, my specialist called. She is unsure if I have GCA and desperately wants me to have a biopsy. I am a mathematical person and as we all know there is a very high chance it will come back negative, we are still waiting for second blood tests which were done 5 days ago, they may be in tomorrow.
Now the biopsy may come in positive (obviously this would not be good) but the biopsy may come in negative (obviously this also would not be good) So why do we have a biopsy? Doctors seem to think that knowing you have it helps, but in reality it still gets treated because the biopsy in reality does nothing for you.
Current conditions - So today was a busy day, a little driving about 1.5 hrs and a 2 hour meeting with a little thinking required, my temple area is currently throbbing with quite a lot of pressure even with my 40mg Pred this morning. This morning my left eye on distance vision is a little blurry until about 30 mins after the Pred then it sharpens up. (no idea why) When I take the pred I also have this crackling sensation in my temples. Last night by the way my temples got so large my 6 year old said to me "Daddy you have lots of bee stings on your head" I had been driving all day and my temples were inflamed.
So, lets just go through this - Started with shoulder pain and tinnitus last January, 3 to 4 months ago a sensitive head but not painful just itchy, in the last month constant jaw ache, neck ache, and two weeks ago pressure around my temple so bad I couldn't wear sunglasses or a helmet and physically felt ill all over. The next day I saw the doctor where I felt a huge improvement after just resting no meds, but now two weeks later even though I am on 40mg Pred I have a lot of pressure in both my temples.
So my doctor will be calling me tomorrow with blood work results, no doubt wanting me to have a biopsy.
The uncertainty of this disease is just awful and if I don't have it, what else could it be.
The symptoms and response to pred really do suggest GCA - but you are possibly no longer on quite high enough a dose.
Have you had your eyes checked for signs of poor blood supply to the optic nerve (not always obvious) and retina? If there is inflammation that is obstructing full blood flow to the optic nerve or retina then once the pred starts to kick in the blood flow will improve. I'd have expected it to take more than 30 mins. The prednisone has to get into the blood stream from the stomach and be processed to prednisolone before it works.
Yes I had my eyes checked and he could not see any problem. I have just woke up and again the distance left eye is not as clear as it should be. My temples are not very swollen this morning and I actually feel a lot better than the last few days.
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