Having been diagnosed with PMR over 2 years ago, I was down to 4mg Pred although looking back I was in a lot of pain around the neck, shoulders and upper arms. I just put up with it as I wanted to get off meds. Anyway then I became aware of scalp tenderness and headaches, so after 2 weeks went to the GP. Blood test showed raised levels so was put on 40mg Pred then had a scan a week later of the temporal arteries. It was normal, so inconclusive whether I had GCA as the inflammation would have reduced after a week at 40mg anyway. All scalp tenderness and pain has gone- I’ve never felt so pain-free, which is wonderful!
The rheum said to reduce to 30mg and then after 2 weeks to 20mg then I have another phone appointment with her. My problem is- I’m really struggling to sleep and I feel really light headed and dizzy much of the day. I still work part time as a primary teacher as well as caring for my learning disabled 22 year old son. I’m a single parent so have to do everything for him and his behaviour can be challenging at times so I really need to be awake and firing on all cylinders. I’m wondering if I could reduce the dose more quickly as I didn’t have sleep problems or dizziness when I started 2 years ago on 20mg. I’m wondering if I could reduce the dose to 20mg after a week on 30mg, instead of waiting another week?
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You can but try….. but do be aware of any return of headaches and scalp tenderness - as you know that’s a typical sight of GCA. Scan was inconclusive, that doesn’t mean you don’t have GCA.
Hope you don’t, but there is a reason for your symptoms…
Yes- it’s only because I searched this forum and saw how often scalp tenderness was associated with GCA that I decided to go to the GP. Do thank you all for that. I think I live in denial much of the time!
Unfortunately yes… for many, stress was the final assault on an already struggling immune system, and it’s a common cause of a flare.
Everyone has stress, it’s a fact of life… but it when you have an immune system that’s already under siege, it has to manifest itself somehow… for some it’s GCA and/or PMR.
Not sure there is evidence as in "study" but all the good rheumies and their nursing teams I know say there is a close relationship between stress and flares. And patients will tell you that,
If the tales here are anything to go by, stress is the top trigger for GCA/PMR, particularly unrelenting stress.
Is there no way you can take sick leave? GCA really isn’t a minor thing and the Pred is not making it go away, it’s just reducing the inflammation caused by the autoimmune activity attacking your blood vessels. Once you below what you need your symptoms will come back and you may then have to go back up in dose again which isn’t a good strategy. I had to take sick leave on these doses because of how Pred made me feel, lack of sleep and as a result impaired judgement, especially with driving.
For many of us, it is a sign that how we are living isn’t sustainable and something has to give. Iots of us here had this particular rug pulled out from under us and it’s never at a convenient time.
I take your point, yes. I’m only in school one day this week then we get 2 weeks half term, so I’m hoping after that I’ll be feeling better on a lower dose. And of course, in my primary “job” of mum, there’s no sick leave available! I just have to go easy on setting my son boundaries, and let him get away with things I wouldn’t normally do- for an easier life. But now I have less pain, I’m more able to physically care for him, so that’s a blessing.
Oh yes I hear you regards parenting; you can’t take a day off. I had to bring up two children with ADHD, Tourette’s and autism between them. Their young and teenage years were hell to be honest and we had a live-in vile relative for 10 years too, and I worked. Hmm I wonder why I got GCA? In my case work had to go and ultimately my career. This had to happen in order to keep the plates spinning at home and heal. I fear the improvement in side-effects over a few weeks isn’t going to be as massive as you want because the dose can’t go down that much or your GCA symptoms will break through. I have no doubt that you could tough out pain etc as you likely have a gold medal in toughing it out in life. However, with this condition you really can’t do that. Are there no options with getting help with any part of your life, however small?
It’s tricky as my ex (his dad) is not interested. My two adult girls have their own lives and I don’t want to burden them. I have no other family living nearer than 50 miles away but I do have respite 2 nights a week- that’s bliss!
Hi. I am down to 12mg prednisone after 9 and a half months. I was a terrible sleeper before but find it near impossible on prednisone. However I take a 7.5mg Zopiclone each night to sleep and it works wonderfully. You're not supposed to be on it long term.... but I am.
But all that really does not sit well with your comment " I just put up with it as I wanted to get off meds."
We ALL want to get off meds but you are on them for a good reason, to control various conditions. The pred cured nothing, it is a management strategy to allow you a better quality of life while the underlying autoimmune condition that causes PMR and GCA symptoms burns out and goes into remission. And that can take an indeterminate length of time, mostly some years, not months, and also rarely the claimed 2 years that many rheumies bandy about, If you go to too low a dose of pred, the unmanaged inflammation will build up until it is enough to cause symptoms again. As they did for you.
The result is often that when a flare builds up you end up going back to a higher dose and may even take more pred than if you had admitted you were on too low a dose for YOUR PMR. And high doses of pred have lots of disadvantages as you are finding.
I’ve never thought about it like that- that the Pred doesn’t cure it, and the only thing that will end it is when it burns itself out. I guess I don’t really understand much about auto immune conditions. But yes, I now know I was putting up with too much pain and discomfort. I struggled to get undressed every day. It’s only now that I realise that- now that the pains are gone. It’s a learning curve- and thank you for helping people like me to get a better understanding of this long term condition.
I have now! Thank you. That explains it in a way I have never had it explained before. I would really like a hard copy please- how do I give you my email address?
I am so sorry to hear you are in this position and the additional stress you are under. I was diagnosed with GCA following a viral infection but I had been under high levels of stress for a couple of years previously. Whether it’s connected I don’t know but my gut feeling is that it is. I wouldn’t rush the reduction at this stage as you suggest. Feeling weird at these high levels of pred is a typical side effect. It’s like the children’s book ‘bear hunt’, you can’t go under it, you have to go through it. Hang on in there. You may need some time off work. Is there any support you can access for your son?
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