Advice please
I’ve had Pmr for 8 years and managed to be on under 5mg of pred for about the last 6 years
Had a few flare ups but now on around 2 mg for sometime
The last couple of days I’ve had a dull headache around my left temple I never get headaches I’m now seriously worried that this may now be GCA. No jaw pain or head sore to the touch
I will go to doctors in the morning Ive upped my dose
Any thoughts appreciated
Thank you
Hi Jankie 😊
I’m glad you have a doctors appointment tomorrow. It’s always best to get checked out, especially where possible GCA is concerned. Honestly your headache could be any number of things from tension to eye strain to arthritis. However, GCA does not always present with the typical symptoms of jaw and scalp pain so you’re right to follow up this headache as it’s unusual for you.
All the best tomorrow and do let us know how you get on xx
PS If the pain gets very bad or you have visual disturbances, A&E may be what you need…..you don’t seem to have either of these things, but if you do, then please don’t hesitate to seek emergency care.
Unfortunately , it could be. I was at your stage when I was diagnosed with extra cranial GCA and LVV by a specialist scan. Let us know and if your instincts tell you that something is wrong, persist.
As said, could be a variety of things -but does need checking. Please let us know outcome
Do ordinary painkillers help the headache? It is good you are checking with the doctor but I imagine since you don't mention any other symptoms and only a dull headache they may be dismissive so go prepared for that. Do you have any other problems beside this headache?
Thank you for all your replies My GP is fortunately all over this
Upped the preds immediately. Blood test
Back to see him again on Monday
If it is GCA. I’ve asked him about Tocilizumab
Any thoughts on that??
Thank you so much
You can certainly ask, but think recommendation/request for approval has to come from Rheumy not GP.. and it’s not a guarantee in UK -depends if you have issues with your illness and flares etc. So don’t hold your breath.
I would wait and see - apart from anything else you have to be under a rheumy and have confirmed GCA. At present in the UK it is limited to use for a year so if you start with it, and the GCA hasn't gone in the year, there is nothing to use if it gets difficult later. Even TCZ doesn't have a direct effect on the autoimmune side of the disorder and the hope is that stopping the process of production of IL-6 (the inflammatory substance it inhibits) will lead to a reset of the immune system but it doesn't always happen or takes longer than a year judging by many of the patients who are able to get it funded for longer.
Chetan Mukhtyar told us the other week that it is great for the right patient - but it isn't perfect. Nothing is of course but he thinks selection of patients is key to its success.
Hi. Just wondering...couple a places indicate there's nothing left to use if you go off prednisone and then off the actemra (tzc?)if time is up and/ or it hasn't ' worked'. So it sounds like going back on prednisone isn't an option, is that right? Or is it still an option albeit an undesirable one? Or is there a reason you can not start back up on prednisone? Sorry for my confusion. Sure sounds frightening to be left with no option. This is not my situation now but am concerned in general. Thank you.
The rules vary on Actemra/TCZ use country to country. In UK for example it is only authorised for one year initially for GCA -rules are different in US and other parts of the world.
That’s one scenario , but as you say the other is that it may not work for all individuals.
In that case, there are other options, and Pred is just one.
You remain on or go back to pred or try another steroid-sparer. I can't find the words to explain what I mean - sorry, and I'm sorry if I have confused you. For most people pred does work and for most people GCA burns out in a few years while they have used pred for less pain and risk on the meantime. The big guns aren't innocent substances either - they too come with adverse effects, some of them with worse risks than pred. Why use those unless you really need them because pred really doesn;t achieve the aim?
But would it be a better drug than preds which I’ve been on for over 8 years.
Not necessarily -as stated it works well for some, but not everybody. ..and as PMRpro says what happens if it’s stopped after a year if you still have GCA? Sometimes better the devil you know.
But as I said, no harm in asking and doing a lot more research on it.
Try this:
Spread your fingers through you hair and gently tug all over. This releases any tension in the tiny hair muscles at the root of your hair. Bit like shiatsu and as PMR impairs the oxygen supply to all your muscles it is always worth a go.
This does not mean you do not see your GP, even if it relieves the headache.
You are doing the right thing. My extra cranial, Large Vessel Vasculitis appeared as insidiously as that. It was diagnosed by a specialist ultrasound scan. The cells were found in my armpit. I believe that my eyesight was never at risk. At that stage. I may not have been diagnosed if I had taken more Pred. I was on 3 mgs.
I am unable to take Tocilizumab because of diverticulosis and have rejected Methotrexate. My only medication is Pred 7 mgs. 6 + years.
Definitely the devil I know.
Hi SheffieldJaneThank you for your reply. I’m sorry to hear about all your health problems. What a bummer - this condition.
After 3 days of high pred dose No raised inflammation levels and still a fuzzy head, my doctor thinks it is migraine or cluster headaches
Had a thorough eye test and no problems.
Maybe I’m just panicking but I was almost going into remission after 8 years Hope the doctor is correct but he did seem totally on the ball
I will keep on eye on it
All the best
Jan
I have an optician with state of the art equipment- better than an Opthalmologist I went to. I pay £60 every few months to have my eyes thoroughly checked. He keeps slides of inside my eyes etc and can monitor any changes. It is worth it for the peace of mind, he is also a good communicator and a very nice man.
Thanks all for your adviceEye test fine Inflammation markers fine
Still a fuzzy head so doctor thinks it’s migraine
I’ll of course monitor and hope he’s right !!
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