57 yo male diagnosed with biopsy for GCA May 15. Was on 120 pred for a few days in hospital. Now on 60 a day. Starting the Actemra injection 1x per week at rheum appointment In 2 days. My pain seems to be building back up quite a bit the last few days. I have a general feeling of weakness and a lot of pain in my hips which is new to me. I have a physical job and mostly I feel like hell.
I guess I’m wondering what’s in store for me. Anyone use the Actemra? How long before I feel better ? Any thoughts, tips, words of wisdom would be appreciated.
Regards, Glenn
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GlennStephen
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Hi Glenn,Sounds like you got hit pretty hard with this illness. It is difficult to navigate in the beginning when you are on a high dose of prednisone. You will have a hard time sleeping but be thoroughly fatigued. You could gain a lot of weight if you don’t watch your diet and carbohydrate consummation. I don’t have any great words of wisdom for you, I was approximately 63 years old when I was diagnosed and have been at it 5 1/2 years and feel like it is slowly going into remission. It is a serious illness, but if managed well eventually goes into remission. Hang around here and read all you can about it.
When the non-insomniac Brits wake up, they will send you some useful information about our conditions. You will find FAQs and commonly asked questions to the right of your screen in the meantime.GCA is a serious systemic disease. I am sorry you got it. I am afraid it is quite a journey that may take several years to resolve. I take weekly injections of Actemra that enabled me to reduce my high Prednisalone dose to 10 mgs in a matter of weeks. It is going to be incredibly hard to manage a heavy physical job with this disease. Is there any scope for lighter duties or early retirement? You will be constantly battling your recovery unless you can pace your activities. I had a lot of groin pain in the early days of PMR. This made life difficult in terms of getting in and out of chairs, bath and bed. Weight gain becomes very easy with a voracious, steroid induced appetite and changes to the way we process food. The sooner you adopt a low sugar/ carb diet the better. There is a tendency to develop high blood glucose leading to steroid induced type 2 diabetes. Keep an eye on your blood pressure and have regular thorough eye checks.You will have many questions as time goes on. This forum is a trustworthy, informed and supportive place to get answers. I would recommend sticking around. The best thing Actemra did for me was spare me from a high steroid dose. I was able to taper down much faster than usual but stuck at 10 mgs. It has to be said that I do not feel great on it, others do though.
I hope some of this helps. Be very alert for any eye symptoms. The loss of sight is the biggest danger at this stage. You won’t be alone on here. There are quite a few men but the women make the most( helpful) noise.
Sorry to hear you have GCA .... this is a bit of general information for you.....it doesn't include anything much about Actemra - it’s not used as regularly in UK as it is in other places, and I was never given it during my GCA (now in remission for almost 5 years) -
As SheffieldJane says please have a look at the FAQs, but will say that having a manual job you are going to find life difficult, and the fact that your pain is building up again suggests you have gone below the level of Pred you actually need.
You are not reducing relentlessly to zero even with the Actemra, you are trying to find the lowest dose that controls your symptoms.
You will feel better, but only if you can get, and keep your illness controlled with the correct level of medication,.....plus adjust your lifestyle accordingly.
Please let us know how you get on with Rheumy/Actemra and remember there’s always someone about to help with specific queries, or if you just want to have a rant!
Hi, Yes it’s a bit of a shock to the system, I too have GCA, I was diagnosed sept 2019 after becoming very ill, headaches, weight
loss, sight problems, severe night sweats and generally feeling ill.
I think at first you just go into shock, I know I did, I tried to fight it, deny it and eventually accept it.
I was on very high dose of pred for some time, it really exhausted me as I couldn’t sleep.
My rheumatologist put me on various med which all had adverse effects and eventually put me on AZT which I took for a while but wasn’t happy taking this drug, I suppose I took it for 6 months and then decided I didn’t like the side effects so stopped taking it.
I’m still having problems with various things going wrong with this illness, but stick with these lovely people and they will help you through it.
You eventually accept and try to live the best you can, I don’t know how long it takes to get better ( I’m still waiting) but you will cope I promise.
Hi Glenn, I'm sorry to hear about your recent diagnosis, but good to hear that you may be starting Actemra so soon.
I've been on Actemra for just over a year. I was diagnosed with GCA in 2019, having had PMR since 2016. Here in the UK, there are fairly rigid prescribing guidelines for Actemra and we have to have tried other things first. We're limited to a year's treatment, but Covid has allowed an extension of that.
My GCA seems to be well controlled on Actemra and 5mg pred - I have been on that dose for 6 months during 'lockdown', so as not to rock the boat. I'm expecting my Rheumy to suggest a very slow taper of the pred when I speak to her next month.
Although none of us want these conditions, there are worse diagnoses and the prospect of remission helps us to carry on!
As the others have said, do take care of yourself and best wishes to you.
I'm a year into GCA. I was diagnosed at the age of 64. The original symptons of severe headaches and shooting pains around the temple area have gone away; they stopped as soon as I was given a massive dose of steroids in hospital. I'm now on 5mg Predisolone.My symptons of tiredeness, forgetfulness and irritability are most likely due to the steroids. I wake up early, around 4:30am with a feeling that the steroids have worn off and I need another dose- almost like a junkie on drugs. I get up for a couple hours, go back to sleep, wake up and sometimes have to go back to bed again during the day or early evening.
Thankfully I retired several years ago; I'd never manage to keep down a job in my current state.
I'm tapering down one mg every six weeks, so who knows what will happen as my dose reduces to zero?
I was diagnosed with GCA at 54 in Jan 2020 although I had undiagnosed pmr for a couple of years before that. I really struggled with the high doses of pred and found it hard to function. Actemra is not really an option here in NZ so out of frustration I made the choice to try Methotrexate. Wasn't able to taper until it kicked in(about 3 months) but after that I haven't had any problems. I'm now down to 5 mg Prednisone and 20mg MTX. I'm feeling 80% my self again and improving all the time. I also have a very physical job and am back to working 50 to 60 hours a week. For me I had to ease back into work slowly, went back full time March this year. I changed my diet, low carb, salt, and just made better choices. I set up a gym in my garage and did what I could every day to keep my fitness. Maybe I've been lucky I don't know but it's worked for me. Now just the very slow taper to hopefully zero, I haven't had any adrenal problems so far so I'll carry on as I have been. I don't know where I'd be without the information from this site, haven't had much help from the medical profession I've just made it up as I went along. 😀
"My pain seems to be building back up quite a bit the last few days"
What sort of pain? What you mention (hip pain) is typical of PMR being a part of GCA which does happen but PMR-type symptoms should be well controlled by 60mg.
The feeling of weakness is your body reminding you that you have a serious systemic illness - this is not a bit of a cold that will go away quickly and rest and pacing is an essential part of management:
Then you must contact your doctor immediately because that is possibly due to the 60mg dose not being enough to manage the ongoing inflammation - and that continues to put your vision at risk.
The 3 days at 120mg is quite a low dose for the pulse therapy approach - some doctors use up to 1000mg per infusion. That does clear the inflammation well but some patients need 80mg or even more of oral pred to maintain the effect. Once you are on the Actemra you will need a lot less pred and that should be achieved quite quickly but initially, until the Actemra kicks in, you need pred to protect your eyesight.
You do need to get help. Other people here have struggled to get on an even keel in the early weeks due to needing a higher dose for longer and until that happens it can be a bit fraught, but advocating for your sight is important. I was diagnosed with GCA at 54 and at the time was fit, active, always busy and working. It comes hard when this hits you and the realisation that it isn’t a quick fix with some pills. In the early months, if I tried to do very much I could feel the symptoms starting to not be controlled. Judging by my and others’ experiences, working a physical job as well is, I’m not going to pull my punches here, madness.
High doses also make you very tired, weak and impairs judgment. The trouble is, because one is so wired, it can make one think that actually the brain is sharp as a razor. Also, the effect of Pred on muscles, ligaments and tendons makes them more prone to injury and possible longer lived damage.
The first 6 months to a year can be hairy but it won’t always be like this. It is common for busy people to think, “I’m too busy for this” and “this Pred is awful I have to get off it ASAP”. Toughing it out, reducing the Pred to quickly and being resolute doesn’t work, you have to really look after yourself.
I hope the Actemra helps. It can be a really useful steroid sparer (as opposed to replacement for) in many and not so for some. See how you go, get on a really strict low carb diet now and REST.
Hello there I have not been diagnosed with GCA although the ER doctor and my family doctor suspect that's what's going on I had a massive headache going from ear-to-ear went to bed woke up the next day left side of my face was numb no vision issues no joint issues just pure brain freeze pain and the side of my face hurt when I touched it I've had three rounds of blood work CT scan everything is normal I am now waiting an MRI which is due to occur June 8th and then I see the neurologist a week later unless I find something really bad in the MRI and they deal with it immediately I hope the pain is just unbearable I'm using a hundred mg per millilitre c b d oil plus Tylenol ones + 1 amitriptyline at bedtime and I'm just managing to make it through the day I'm getting a call with my doctor tomorrow I need to up the amitriptyline I just want the pain to stop I don't have PMR at least I don't yet now we'll see what happens with the MRI and the neurologist in the next couple of weeks I'll give you guys an update Everybody Take Care make it through the day guys that's all you can do
Having lived through undiagnosed GCA for 18 months I know where you are coming from pain-wise....but have to say Amitriptyline did absolutely nothing for my pain......do hope you get a definitive diagnosis and treatment ASAP.
Sorry to hear that your pain is so severe. Facial/Head pain is hard to ignore. I had pain down the side of my face and was diagnosed with Trigeminal Neuralgia 16 years ago. It is treated with Gabapentin. Look TN up as it may explain your pain symptons.I was diagnosed with possibly GCA 19 months ago because of headache/vision change but after arterial biopsy PMR diagnosed. Hope you get treatment soon.
welcome to the forum it is very helpful. I have GCA diagnosed 13 months ago. roller coaster ride with Prednisone and on Actemra for 6 months weekly injections. Good news is i am feeling better and Actemra has been instrumental in PRED withdrawal. Keep up a rigorous slow downward trend and ride out the hangover Pred causes (we have similar symptoms). i am at 6 mg Pred now and hoping my body kicks in to give me the energy i need now that i feel better. keep posting your progress! oh and i don't know how anyone could work under these meds i am a 3 hr a day active exercise/ work that all i can take as my battery runs right down.
It’s been a pretty rough start to my journey. I’ll tough it out the best I can. That’s all I can do. Thanks to everyone for the kind words and encouragement. I’ll post an update after my appointment tomorrow.
I have had PMR (the “sister disease to GCA) for 3 years now which started when I was 55. I was in shock when I was diagnosed. I had just retired early and my dreams of what retirement would look like were dashed.
I will say the early days are the most challenging. I went through all the stages of grief. I was angry that this disease ruined my retirement and caused my parter to be a caregiver in the early months before being diagnosed (I was newly married). I was sad, even depressed about being dealt these cards. I tried to bargain with the disease, promising to change my lifestyle in hopes it would go away. Finally, after about 6 months, and adjusting to a life with prednisone, I accepted my fate. This was a major turning point for me as I was no longer “fighting” my chronic condition.
I focused on what I could control (diet, rest, activity and stress level, and support from others). I cannot control disease activity, if/when I go into remission, how much pred my body needs, or even understand how/why I got it! I made adjustments where necessary, adopted a low carb/sugar/salt diet and started to SLOWLY incorporate physical exercise. I secured a wonderful GP and said goodbye to an awful rheumatologist. I learned to listen to my body. My relationships with others changed to, due in part to their support or lack thereof. I try and stay calm and avoid stress as I’ve learned it is detrimental and has brought on at least on flare in the last 3 years.
I can honestly say it gets better (for me anyway). I was overweight and lost 25 pounds, got off high blood pressure meds, live a more active lifestyle, and most times forget I even have PMR. I even survived getting my first vaccine dose while not know I was positive for Covid which put a strain on my immune system.
Be mindful of the effects of pred at higher doses...I was more intensely emotional in the early days (at 20mg). With GCA you will be dealing with much higher doses, but eventually you will settle at a dose that works for you. As others have mentioned, your eyesight is a priority!
I do hope you get your headaches and pred dose settled to get some relief. Please know you are not alone, and this forum is comprised of many compassionate folks who “get it” as we have a lived experience of PMR/GCA. Post your questions, or your woes...we are here for you.
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