I just got diagnosed with GCA 10 days ago & started on Prednisone 60mg. Im still in shock as been told Im too young to have this diagnosis at the age of 52yrs. I ended up at A&E due to severe headaches & jaw pain which came on rather suddenly.
Im very tired all the tine and sleep a lot during the day & at night, which surprises me as prednisolone does not sedate
I guess Im at this point worried about a lot of things and how Im going to manage work when Im so tired all the time.
Not a lot of people seem to know this condition so Im completely worried and do not know what to expect
Any help or support will be really appreciated
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I have PMR, not GCA and I had a very delayed diagnosis because I was "too young" at 52. There are quite a few of us "youngsters" on this forum. I am now 60 and still have PMR but not so young now!!
I eventually retired about 18 months ago as working was doing me in! It is very challenging to keep on working but you will probably hear from others who are managing it.
You are not too young, as you’ve found out, but maybe on the younger end of the spectrum.
I assume your GP has advised you to be off work initially, and done necessary paperwork because you won’t be able to work until things have settled down considerably and you know what you are capable of actually doing. So to that end you need to be in contact with your HR department and line management to discuss the future. GCA is a serious illness and needs careful management, so you need to get everybody on board.
Most people on here are+older, and although many are retired, there are some who are still working, and hopefully they will come forward to offer specific advice.
In the meantime have a look at this - it does seem daunting at first read, but please keep it to hand, and dip into as and when. Also do as much research as you can - particularly about GCA and working.
I appreciate you are worried and probably scared, but there is always someone on here who will help, so please ask - anything, no matter how trivial you might think it is. We are here to help.
Thank you so much for the reply DorsetLady, much appreciated. My GP did not seem to realise how much time I would need off work & only signed me off for 2weeks! But Im feel so weak & tired. I will have to get her a little on board & also HR & OH at work.
As you have GCA you really need to see a Rheumatologist- most GPs are a bit out of their depth - unless they’ve had previous experience with other patients. Although some can be very good and of course you are likely to see them more often - but it doesn’t sound as if yours is.
As yes get your workplace involved as soon as possible - and good luck.
Hi when I was first diagnosed I was getting signed off 2 weeks at a time and the doctor I saw along side the consultant said I would know when I was ready for work, I think if it’s well managed and a reasonably straight forward case and you respond well to treatment you can look at a phased return but I think your priority now is you and resting and seeing how you feel It’s a complex condition and seems to have a very broad range of symptoms so you will see in time how it effects you, take care the early days are awful but it does get better
I was much older than you when I had GCA diagnosed. If you are anything like I was you will not be fit to go back in two weeks. You will need much more time off than that. Because GCA is not well known you will have to educate the Doctors. That is what I was told by the Rheumatologist I saw.
Hello, this happened to me aged 54 in 2017. Your fatigue could be your body’s autoimmune processes going wild (it’s very very tiring) or for some people Pred is a knockout drug from which you get the more lively side effects later. I used to use it as a sleeping tablet but then woke at 5am. So, the first thing to know is that Pred is not a treatment per se but just the fire extinguisher for the inflammation put out by your immune system that currently doesn’t know what is friend or foe. This means you have to do your bit to help your body while it decides when to go into remission. At this dose life can be very difficult, not least the feeling out of control, jitters, reeling mind, emotion and poor concentration. Most people are not prepared for just how life changing it is, not least because the docs don’t say. Getting time off work really is adviseable and how long for depends on how you are with Pred. This is a long haul challenge and certainly isn’t the type of condition where you pop the pills and carry on with your life as normal. It does get better! Others will reply with more help and information; this is a great site for specialist info and bags of support.
When I got this I decided at the beginning that I wasn’t going to pile on weight and get diabetes, so started an ultra low carb diet. This meant I could eat lots (Pred can make you very hungry) and avoid the blood sugar swings. Many on this forum have adopted the same approach. You’ll find there is much discussion about the other drugs you are given with Pred and optimal bone health. Start with DL’s link, digest and get back to us if you need any help.
Thats interesting because the rheumatologist made it look like its quite rare! They have been very reluctant to give the diagnosis, i saw 7 Doctors and so many tests!
GCA is a rare disease anyway. Just because they haven't seen younger patients doesn't mean there aren't any - and there are far more people with GCA on this forum than most doctors would see in two lifetimes. And on top of that - if you aren't looking for something because you don't think it exists you are unlikely to see it.
That is very true. Im very relieved to have found this forum ive had more information in an hour than in the last 2 weeks. So grateful to everyone whose responded to me this evening.
When you feel up to it, can you put a bit more info on your profile - a précis of original post - it would help future replies. Save those of us who answer a lot looking back at previous posts. We can just look at profile as an aide memoire as you who you are are, what you have, where you are etc.
I was also made to think I was very young at 54. Pertaining to a previous comment about GP’s. A GP within 5 years of retirement at my surgery said he had seen 3 GCA in his career but about 3 per year of PMR. I’ve seen a number of different Rheumatologists (mostly registrar level) at the hospital as I too was diagnosed in A&E and most of them did not have up to date knowledge. Being on this forum showed me this isn’t unusual. You really need to become your own expert so you can self advocate with confidence.
HI, I was diagnosed with GCA on 23 December. I'm older than you, but still relatively young and, more importantly, still supposed to be working full-time. I;m having different issues with the Pred to you, but I have been signed off now since 23 December and have no intention of going back until I am relatively free of symptoms and side effects. My GP has asked my employers to refer me to Occupational Health and I'm waiting for an appointment.
I have to accept that, although I'm pretty much bored at home, I have to manage my resources and I am simply not fit for work at the moment.
Please feel free to follow me/read my other posts.
Thank you for your reply, i will certainly follow you.
I am sure the autoimmune aspect is causing your tiredness.. Sometimes you will see a post and think oh yes I had that before dx. Sometimes the conditions have been bubbling along for a while so it takes a while to get the inflammation under control. Sleep when you need to, eat as well as possible, preferably low carb as it helps with potential side effects of pred. All questions are welcome as other learn from the question and answers. Welcome.
I too was seen as “atypical” due to my age at diagnosis (55). Now 57 with PMR still, but much better managed over time, although I have had flares along the way.
These conditions impact our mental and emotional health. Once you make it through the initial shock along with other feelings, and you come to accept your condition, peace will prevail. Adjustments will need to be made along the way, and you must sometime advocate for your health and inform others so they understand (most folks never heard of these autoimmune conditions). Get support along your journey as you need it.
Great bunch on this forum...ask us anything, we will “get it” better than others who don’t have a lived experience with PMR/GCA.
I work full time (only had PMR) but I used to work 7 -2 so I could go home & nap. Had to work. Best of luck. I got PMR @ 59.
Much has been said already here, but I would still want to give you a little checklist. I caught GCA around age 41, but did not get severe symptoms and a diagnose until I was 50, now 2 years ago. Just got of the preds a month ago.
I started at 60mg, but had 12 extra dimensions of hell added to that because I was but I was one of the handful of people with that stuff here in Taiwan, and thus no help. This forum helped me a lot. My horror blog is somewhere on this forum, but even I don't want to look there anymore, haha!
Anyways..
GCA makes tired and dizzy, and a lot of other fatigues. The high preds can make you depressed, bloated and feeling like white rotten flesh could fall off at any time. Much of this will pass once you get under 30mg. Until then, know it's not you, it's the meds.
Stay active whenever you can. Sleep when you want. Don't rust shut in depression, so-called "rest"
You're gonna gain weight coz of the preds, and movement helps. Swimming is good.
But, in the light of your body stocking fat coz of the preds, don't eat anything that isn't natural. Nothing processed, nothing with additives, no snacks or other chemical stuff. Fruits, veggies, nuts, brown bread, you know the deal. proper healthy, nothing that came from a factory.
I did so 2 years too late, and could have been getting better a lot faster, maybe even never gotten sick, if I had eaten properly, said no to all chemicals all the time.
By now, I just have enough force left to carry my 60KG from window to bed. Glad i don't have to carry 80KG's instead!
Preds will eat into your calcium deposits. I was 76KG, and lost 16 kilos when stopped the preds, 7 or 8 KG of that was just bone loss. So, eat your calcium tablets, but too many will give you kidney stones. Try getting them through natural sources. Glucosamine -pure. HGH. Both are said to help as well. I was told to do only calcium tabs, and not even until I'd gone from 60 to 30MG, and now I have serious arthritis and osteoporosis, ready to receive a new hip almost. I'm 52 and jogged, only 2 years ago.
So don't be stupid like me. Take B-complex daily, as well as vitamin tabs. Stay away from all immune-system-boosting supplements. That can get you a re-flare real fast.
CBD oil might help against inflammation, but CBD puts the liver to sleep for a few hours each time, thus your regular meds may not get processed properly. Do so with care and time your meds.
For bloating..time your meds well. Take heavy meds after heavy meals, light ones after light meals. Asperine is way more aggressive than Plavix or Pentafilline. I stay clear of asperine. Preds bloat, so antacid doesn't work. Pro-biotics help, but in large doses, and that s costly. Your doc may prescribe some stuff, but that remains a prob until you go to 20mg or so. Eat super healthy.. nothing helps more against bloating.
I wouldn't advise drinking alcohol. Also, no spicy food, for the preds mess with all your tongue-till-stomach pathways.
Blood thinners.. take them daily. I was never given any until i had stroke nr 8, that caused actual damage, and I have to face a life of fear of going blind now. Had 14 of them in total with eyesight issues for life. It can be avoided.
Preds raise LDL, and I ended up with with mad LDL issues. The statins make it go away, but cause painly joint issues and whatnot. Now I'm off the preds, I'm hoping it will normalize, but no news there yet.
Also, lower LDL numbers is no guarantee you're safe from LDL causing strokes. A lot of that stuff is not flowing in the blood, but is connected to the artery walls, and can take a long time to dissolve..
Find HDL-raising sources.
Find joyful things wherever possible to keep your moods up. Watch comedy, force yourself to mingle..Whatever works to keep smiling.
Prepare for more disease. GCA likes company. Everyone told me, I wasn't trying to hear any of that. I got 4 or 5 diseases going for me now. It was, and is an uphill battle to keep up with diagnosing new and old symptoms, adding diseases, striking meds off, etc etc.
If you change your lifestyle, combined with your young age, the best you can hope for is longer remission times, and hopefully a bit more adapted to this medical beating. But, prognoses is you're not gonna be going back to "life before GCA." if you do, fantastic, but better accept this new, most likely reality, rather than fight it all the way like I did, and still do. I am miles away from accepting the reality that is already there, that blindness or a wheel chair may be in the books sooner than later. I am already installing support bars in the house, so I don't have to crawl the floor like I did this month. I'm still not having it, haha!
Just a couple of points: you don't CATCH GCA, you develop it. There is no evidence that an infective agent is directly involved in the malfunctioning of the immune system.
I think that, while some of your points are valid, some of them are not. Living with GCA and pred is not as awful as your overall post may suggest. There is no evidence either that having GCA necessarily predisposes you to developing multiple co-morbidities.
Most people develop things as they age even without GCA and pred - it is a pretty inevitable course of life really. The picture you paint for a newcomer is unnecessarily daunting. I know quite a few people who have recovered from GCA and who are back to the same sort of life they enjoyed pre-GCA. Since it took 4 to 5 years to recover and get off pred they are of course older - but that is something else.
I wish someone had been painting that precise, daunting picture for me, 2 years ago. Lots of well wishing and support here, and that is important. I am thankful for that. But, who here has only GCA and nothing else? Who has PMR+GCA+overweight+high LDL and/or diabetis, strokes, glaucoma, cataract, etc etc? It's not a healthy 50-50 statistic, isn't it? Immune diseases like company. Lots of people, including doctors telling me not to worry too much about the preds, but they have ravaged my body from day 1, pretty much in every way I heard of, bar Diabetis, which I have not yet developed.
Presuming it will all just be fine is not preferable to taking pro-action at the beginning of this -hopefully/only- 2 year tapering period. People get depressed, feel sick, get sick in all kinds of ways, and it's important to know what is what, so one doesn't start losing one's mind when the time's there. A mere 17% of ex-GCA patients make it through 5 years without a relapse, according to studies. And, if you're one of those rare lucky ones, nothing is lost by following any of these pro-active measures, not?
Maybe YOU do, but for most patients to be told what you have written all at once and within a few weeks of diagnosis is not fair. We do talk about the bad sides of pred - and how to manage them. The comment you made that DL has quoted is extreme - yes you did say "can" but far more reasonable would have been to say "I personally felt ..." because that is true but I know of no-one else who has had such an extreme comment to make about pred so it is not correct to extrapolate your experience to every case.
In the final analysis though, the unpleasant adverse effects of pred are nothing compared with the ultimate adverse effect of GCA: total and irreversible loss of vision. There have been a couple of cases with that result on the forum in recent months so we are very aware of it.
I don't know many people in their 50 to 80 age range that don't have some of the health issues you list that don't have pmr/gca and have never taken pred. It's the nature of aging that we can develop different ailments no matter how fit we may have been in younger days. I am far more concerned about developing gca and losing sight than taking pred. During the past 4 years on the forum I have seen that people adapt by accepting the reality of day to day life asking questions as they go. Information overload doesn't help the process of acceptance and lifestyle changes. It not helpful to just say eat natural thi gs... Fruit is natural but it is not really ideal to eat lots of fruit on pred or otherwise. Fructose is just sugar. Recent animal model research comparing fructose and glucose consumption on weight showed more weight was gained on fructose. Obviously fibre makes a difference but natural is not a panacea. Low carb eating, for most people but not all, helps reduce the intensity and longevity of high blood sugar spikes we experience on pred. A serious systemic illness like gca, and pmr, is bound to lead to a need to adapt and adopt. But not all the adaptations are negative. Life goes on and can be enjoyable even when there are comorbidities. You just have to embrace the new normal and ride out the bad times until the next new normal settles.
I am here and I had GCA only. I had it for 5 years, then remission and now into 9th year.
I read your post with growing horror, if I had read that when first diagnosed........I dread to think what I would have felt like. I realise that not being diagnosed for 9 years would probably have made your problems and your journey worse. However, the best thing is that your sight was not affected. Others have not been so lucky and they still help on this forum.
I had only two problems. Psuedo Gout and that was caused by too much calcium. The other was one of the rarer side effects, which eventually went away over time.
I did take alcohol - not a lot - as I was never a heavy drinker.
I also helped to start up the national charity and ran one in the North East , back in those days, there was no charity, only one website Patient info and little or no information. Now we have managed to change things, slowly but surely.
The new GCA guidelines, which will be issued soon, they also have put the age range down to 50, exactly like the PMR guidelines which were altered previously. There is much more research and a great deal of help from this website and support groups.
Yes, GCA is life changing, but not a killer, you just need to listen to your body, go with the flow and educate yourself. Each persons journey is different, no two people are ever the same, whatever the illness.
A Lead Diabetic Researcher and Dietician came to a support group meeting and at the end wrote an article on a diet for people taking pred. Two people with Type 1 lost weight, three people with Type 2, it was reversed with 6 months. The rest of us, lost weight steadily.
Last year, research undertaken by a Rheumatologist, when two patients within a couple of weeks, complained of vertigo, dizzyness, deafness etc This led to research which established that the 8th Cranial Nerve is involved in GCA. That progress came by patient power and a sheer determination to make progress.
Yes, some people can tell of their not so good journey, best done face to face.
When first diagnosed, the last thing I would have wanted was to be overwhelmed with not so good info.
“GCA makes tired and dizzy, and a lot of other fatigues. The high preds can make you depressed, bloated and feeling like white rotten flesh could fall off at any time” -
don’t necessarily agree with that! Yes you get side effects; your comments may be how you felt, and from what you’ve said previously you had a hard time - but it’s not very helpful to a newcomer.
Hi, I am sorry you feel so tired at the onset .I was 63 at diagnosis with GCA and the immediate effect was release from pain and massive energy, so I only had 2 days off work. I was a bit over the top and my team would rein me in when my energy got to much for them. I never really suffered from confusion although, from advice on this forum I take magnesium. Not sure if it helps. I completed a PhD and I am still working at 67, 3 days a week at a challenging job. It has not been plain sailing and some days during steroid reduction I have had to force my self out of bed. I am currently not well, and very anemic, but I would feel worse if I didn't work at a job I love. The best advice I got from rhuemy was to take up Pilates because the high doses of steroids made my arms and legs very weak and I had a lot of pain. Pilates really helped. I still do it . you can carry on with your life. Let you body adjust because we are all different. I hope your tiredness ends soon.
There are people on this forum who will give you a better insight into your condition.
From my own perspective I was diagnosed when I was 55 and still have it at 69!
Once you your pred has kicked in you will be ok. It shouldn't hinder your everyday working in a big way. It's no too difficult to manage. I'm still working, part time, but still do 10 hour shifts. You will be ok, your doctor should manage your doses and will gradually reduce your levels of in take. Don't worry your will be ok and will be able to carry on as you normally did.
I was around 52 when diagnosed with PMR and my GP referred me right away to a rheumatologist in part because she felt I was too young for PMR. But I'd looked at a lot of websites and the only thing that matched my symptoms was PMR -- I was sure I had it. That was around 2010 -- much has changed since then with the condition now viewed more as 50+ but that has not trickled down to most GPs or even many rheumatologists... Also while it is still seen as a 'mostly women' disease, most of the people I personally have known of with PMR are men! And most GPs still do not manage either GCA nor PMR very well, I have met people who have been on 20mg of preds as their 'tapered' dose for over a year with the alternative being GPs who do very rapid tapers and tell people they'll be off steroids in 6 months. Yikes.
Hopefully, in the UK at least, that shouldnt happen as much now as age now 40onwards in NICE protocol of management. Might be worth you telling Dr's that other countries recognising that 40s is not impossible!
I have PMR not GCA but had one visit to a Rheumatologist and, likewise, he seemed disproportionately hung up on the fact that I was 'only 54'. He agreed with the diagnosis though because my presenting symptoms were so completely classic and I responded instantly to steroids. Meanwhile, on this forum, possibly because of its filtering mechanisms, it feels like masses are in the 50s category!
I don't want to belittle your fatigue because GCA is seen as the big brother of PMR but fatigue was a massive part of my PMR unwelless. It improved once the steroids kicked in but I have had to adapt my lifestyle.
I was on holiday when my PMR took off and I was on steroids by the time I was due back at work. I was fortunate to be able to cut my travelling time to work and I only work 3 days (at a desk although fairly stressful at times) so am able to 'catch up' on rest the other days. From the outside my work colleagues don't realise there is any problem and my boss only discovered when I explained at my annual appraisal.
I have, however, had to cut out a lot of the other things in my life like getting up on Saturday morning to take groups of kids out mountain biking, committees I was on and the amount of exercise I took. Some days I feel like I have normal energy levels. Some I feel the overwhelming desire to sit down and put my feet up by the mid afternoon.
I hope you get some of your energy back soon and can find ways to pace yourself and build up a lifestyle that works for you whilst waiting for that remission.
Don’t discount getting back to hiking eventually, just don’t rush at it, wait for things to settle down a bit.
I still do it (I’ve got PMR not GCA) but I’ve modified what I do. Shorter and lower walks than before and only one day at the weekend, not two, and with people I trust and who know about my condition and won't push me if I'm too tired and want to turn back or whatever (because we look 'well' people not in the know might try and 'jolly you along' and you end up overdoing it) and who won't mind if on the morning I’m too tired and decide not to go. Like Lovebikes I wouldn’t want to commit to taking kids out every Saturday or whatever but you can still get a lot of enjoyment and a feeling of wellbeing even if you’re not ticking off the high mountains any more.
You'll hear lots about pacing on here and I’ve found that it is the key. Good luck!
I can't walk very far due to other issues but still go to the countryside 3 times a week (early ill health retirement) and walk a bit, sit a bit. Just getting out in the fresh air and finding flat walks for the first few months will help. Even if you walk for 5 mins a time then it builds. A small circular walk is good because you are heading back to the car once halfway reached!
And remember walking is really good for bone strength as well so aim to get some in, once you are ready, just a bit less ambitious than before. I actually find walking the best exercise at the moment and open places nourish the soul as well
Lots of others have replied already but I just thought I would add our experience. Sorry to hear your diagnosis, I just want to give you a positive story.
Though she has PMR and not GCA my partner was diagnosed by a rheumatologist 2 months after her 50th Birthday. It hit her really hard with extremely debilitating pain and she went from being very active to not being able to get out of bed due to the pain and sleeping a lot of the time. We thought that was the end of her working outdoors and tree felling. At first finding the right dose of steroids to control the symptoms was tricky but within 4 weeks of starting steroids she was back at work felling trees and has not looked back. Though now she takes several meds for stomach protection, Vit D and bone protection (not all agree with this but we chose to go down that line). But my point is that she has essentially got back to normal, though she is a bit more tired on an evening than previously and more concerned about putting weight on than anything else.
Being under a rheumatologist has helped enormously and she has had fantastic care from her GP too.
All have said it is rare for her to develop the symptoms so young and her rheumatologist, who is very up on PMR, has only 1 other patient under 60, so a GP may not see a case in that age group very often, if at all.
My point overall is just to say that this online group was so informative and supportive at the time of diagnosis, so use it everyone is really eager to help.
Best of luck with your ongoing care and hopefully you can get some good symptom control soon and feel less tired.
I am so sorry to hear this, you must be going through a terrible time. I hope the preds will save your sight and that you will refind balance, and get back to a more normal situation with your life work. Is there a moderator out there who can put Tooyoung1 in touch with Professor Dasgupta?
Hi there, sorry you’ve been diagnosed with GCA. I understand your shock as I was 54 when it started with me. This forum is a great source of information and support - you’re not alone 🌸🌸
I have PMR first diagnosed when I was 46. It went into remission and came back when I was 54. So "too young" we are not Welcome to the group, you will find lots of help here xxx
Like you I was scared, angry and anxious about it all. Trying to accept that I could be ill, after a life of no illness except mild colds and tummy bugs.
The first 3 months were hard. Tired. Slow walking etc. But I have reduced without too many problems except one flare when I tried to do too much. Had pain and headaches that made me worry if I am prone to develop GCA. So I am very careful now what I take on. I’m self employed so means I just have to do less which is frustrating. But I want to get through this.
Currently on 4mg.
A bit achy at times but not pain.
Sometimes can walk or cycle for ages. Sometimes much slower.
I think I have recognised my triggers which are stress associated.
Ensure your employers know. You will probably look fine to them as it’s an invisible illness.
Take care of yourself. Take time. It will pass eventually.
Welcome Tooyoung1. I have PMR and was diagnosed at 66 and when I read about it online 70 was the usual timeframe! All of that seems to be changing. This forum has been a huge help to me and I know will be to you. Best advice is watch your diet, low carb (stay off white sugar and white flour) listen to your body and rest when needed. It’s nice to know we still have some control over this stuff!
I was 67 when dx with GCA this past March. I was retired already, but have a few thoughts re "work" too soon. After 2 months or so of extreme pain/headaches/jaw pain/ear aches etc, could not lie down to sleep for over 6 wks because of scalp tenderness, I was put on 50mg pred. 3 days later, felt so good was whizzing around gardening, spring cleaning, golfing etc. Wish I had known that in the long run this was not helpful. Not a scientific explanation, but perhaps one that many can understand: you need to let the pred have time to reduce the inflammation caused by your immune system reacting to the GCA. Instead, I think all that energy I was dispensing into action, would have been much better used to fight the results of GCA. I think it slowed my recovery, so thinking of you returning to work too soon, that could also hinder your recovery from what is a very serious disease.
About 6 months in, asked my rheumy when I could expect to "feel better"....he said 5-10 years. I cried all the way home (an hours drive). But getting out of the car, I resolved to show him how wrong he was. When hubby asked how the appt went, I told him "that guy doesn't know anything, about me or the disease." So discouraging opinions can work in many ways.
You will find encouraging posts, you will find the opposite, and then realistic ones. But find what inspires or encourages YOU. That will be different for everyone. I try for middle of the road, tapering takes unbelievable patience, and being unrealistic about how long this make impact your lifestyle is not helpful either.
Many prayers for you, there is so much information on this forum from knowledgeable people, you have so many wishing you well, and caring about you, you cannot go wrong.
Started with symptoms of PMR in 1995, symptoms of GCA about 8 years ago. I am 64, so do the math. My personal belief: While pmr/gca has previously been age related, I believe it is a disease of cellular stress. Goodness, the age we live in most certainly causes that, also bacterial infections and viruses. I am wondering how many people who are younger are walking around with PMR and are just not being properly diagnosed.
Since doctors are trained to assume pmr/GCA is just a cluster of illness in the elderly. Something to think about. I suffered for years with one doctor after another telling me I had everything from psychosis to allergies.
When all of this started I ran a fever for several months. I was tested for HIV/AIDS 7 times from November 1993 through the following March. It was the early 90s. I was a divorced woman with one boyfriend. But Jeesh!
7 times. Finally after 7 trips to Mayo Clinic I was diagnosed properly 4 years ago. I have a great rheumy, pred dose is going back and forth between 7 and 6mg. step down proceeding well for first time in years.
Hang in there. Instead of focusing on how young you are, be grateful, very grateful that you were diagnosed so quickly, not so young. Many are diagnosed in the emergency room after they have gone blind in one eye. You will get through this. Focus on what is positive. Negative thoughts make this illness worse. I am not making this up. Thinking negative thoughts, getting your panties in a twist is very bad for your immune system.. Focus on the good things that have happened.
As for the sleep, give in to it. It is your body trying to cope and heal. Listen to your body.
Hello wanted to tell you i have pmr but my sister had giant cell and has been in remission for 10 yrs.Everyone is different and the disease usually is better controlled over time.My advice to anyone one with either disease is to listen to your body and medicate according.Don t try a taper if your body is telling you otherwise.I told my reumy i would taper when my body tells me.You ll get better in time.
I am only 55 with my 2nd relapse of PMR. First time, shortly after getting PMR, got better than within weeks came down with severe jaw pain, headaches, spiking crp, couldn’t work and after having a temporal biopsy, etc, months later found out it was a bad jaw infection. Lucky I am alive and it didn’t turn into sepsis.
Learning to live a new normal with PMR and another autoimmune condition that seems to cycle with it. I am very tired most days but trying new strategies to improve my sleep quality which seems to be affected by prednisone and lack of daylight at least for me and I am only on 10 mg (I have been up to 75 mg). Hope things get better for you.
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with the alternative being GPs who do very rapid tapers and tell people they'll be off steroids in 6 months. Yikes.
Welcome to the group, you will find lots of help here xxx
Exhausted!
PMR and cough
Worry of Adrenal function
Down to 6mg but feeling it! Shall I persevere? 
So tired.
