Prednisolone for Giant cell artritis is making my legs ache so badly.
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I was prescribed 40mg of prednisolone per day to treat me for Giant cell artritis (i'm in my mid 30's!) I took it immediately after food last night and went to bed a few hours later. I finally fell asleep at 2am but am now awake at 5am with really aching legs at the top, it's like an intense ache in the bone which is now so painful that I can't sleep. I have calcium tablets also prescribed. Is this a normal side effect? I googled it and someone said it was a serious side effect and to speak to the gp. Also, the GCA symptoms have almost subsided after one dose so they obviously work well!
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EileenH victoria_26089
Posted
Who made the diagnosis of GCA in someone so young? At your age they would normally say Takayashu's arteritis rather than GCA (the difference is small and age is the biggest factor as to which they say). What were your symptoms?
There is a dedicated PMR and GCA forum on this site:
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
My daughter gets bone and joint pain when on higher doses of pred - she uses it for asthma. It isn't something I've heard mentioned on the PMRGCA forum really though - if someone has those sorts of pains it is usually from PMR which can be a symptom of GCA as well as a problem in its own right and is closely related to GCA. But a dose of 30mg would usually help PMR. Did you have any pain like this BEFORE being diagnosed?
victoria_26089 EileenH
Posted
Hi,
Hi, thank you for your reply. was diagnosed by a GP in my surgery. My symptoms started with some severe spasms in the right temple followed by a consistent cramping, burning pain on that side which later radiated around the back and left side and also the neck on the right side. My head was swollen which I presume is an artery. Jaw pain on the right side which grinds when I open my mouth. Also slight changes to my sight, struggling to focus and dizziness. Cold symptoms. This has been ongoing for a few weeks and was getting to be a worry. I was diagnosed after a blood test. I have problems with my back, neck and shoulders but never have aching in my legs like this so I presume it is a side effect of the steroids. I quite a bad ache in my right calf which was checked over as it happened after a holiday so they ruled out dvt. I didn't know if perhaps the aching legs is a dangerous side effect or if I should phone my GP to ask, I don't want to keep bothering them. I'm sorry, this was a long reply. I think i'm a little anxious about it all.
EileenH victoria_26089
Posted
I don't blame you being a little anxious about it - and you may become even more anxious at what I am going to say to you. Please don't be - but do also act on it as soon as you can.
Whilst I'm sure there may be exceptions, GPs are generally not competent to diagnose GCA in anyone - they have rarely seen more than the odd case, many have never seen one at all much less managed it. One of the criteria is "age over 50" - that is not to say that people under 50 do not develop GCA but it is VERY VERY rare.
Any patient who is suspected to have GCA should be treated as a medical emergency and referred to a speciallist immediately - just as if it were a stroke or heart attack. And this is particularly important for "atypical" patients - which at your age you are.
Since you are on prednisolone you are obviously in the UK - whereabouts? You need to be fast-tracked to a specialist for much more detailed diagnosis. This really is not something any GP could cope with safely in the long run unless they are a former specialist rheumatologist (like TV's Doc Martin was a vascular surgeon in a previous life).
What you are describing DOES sound like GCA - but at your age it is probably more likely to be something called Takayshu's arteritis and it needs a specialist vasculitis expert to diagnose and manage. Other drugs work in Takayashu's and a new biologic drug has also been approved for use in it. A blood test showing raised ESR and CRP is not specific enough to be sure - they just show there is inflammation present in your body.
I see the site is to be down overnight so I may not hear back from you tonight. I would suggest you google VasculitisUK and contact their helpline as soon as you can. They may be able to direct you to a suitable specialist and tell you how to go about it.
As I say, please don't get upset by what I have said - but get onto finding the right person to look after you. And do please keep me informed waht happens.