I am in Majorca at the moment, I have just had a 4night girlfriends break in Palma which was fun but very full on, lots of walking, late nights etc, I was diagnosed with GCA in Dec 2022, delayed temperal scan negative, I also have neck problems and symptoms I believe can be very similar, I was originally prescribed 30mg of pred and within days my symptoms had gone, I managed to taper but after being scared witless by my original Rheumy started yo yoing, I had steroid injections into my cervical spine C3-C6 about a month ago and has made no difference, last Saturday I met my husband at the airport to continue our holiday, I had a large suitcase and bag which I stupidly pulled along, (hubby wasn’t with me at this stage) I also had my hair done on Friday and the washbasin was quite high(sorry I’m really going on here) Sunday I woke up pain at back of scull top of neck, pain in right eye and felt exhausted, I upped my pred on Monday to 17 and a half, no difference, today 22 and a half still no difference, I also have slight jaw ache which I have never had before, I messaged Jody, Rod Hughes sec to ask for advice but I think being Friday have not heard back, so feeling quite off colour and here until 30th do you think I should go for 30mg and see if it is a flare, it could still be my neck but the sad thing with all of this is there’s no 100% yes or no, I have enough pred with me, I’m just wandering as I have been on above 12 and half mg(that’s my lowest) for a good while that even going up doesn’t have the original affect as my body is used to it
Sorry for the long post, but I feel a bit anxious with it all, want to enjoy the rest of the holiday, I think maybe I just pushed myself too much, I will make an appt with Rod Hughes when home as I have really lost my way with all of this, and so many side effects have taken hold that are causing other health problems, many thanks for listening and always being here x
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Mumdadlove
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I’d be inclined to try 25mg- but you need to give it time to work -you can give it another week without worrying about dropping back down. Solong as you aren’t on increased dose for a total of more than 14 days it’s okay
Think it’s probably a combination of overdoing things… in fact everything you could do to cause an issue , you did! One or the other may well have cause a flare - but you really went for it! 🤦🏻♀️.
If the 14 days is up before you get advice from Prof Hughes, then maybe drop back to 20mg for a 5-7 days then to 15mg.
Eeps, what a pickle. All I can do is think what I’d do in your situation rather than say categorically it’s what you should do. So, you’ve likely over done it in terms of physical reserves and no doubt you have done a number on your neck and shoulders as well. Whether that has triggered an actual flare who can say. Your symptoms, could all be triggered by your neck muscles, particularly the sternokleidomastoid muscles which can do a good job of mimicking GCA. Been there, panicked that. Have a look at this link below, especially the lists of symptoms. This muscle joins at the base of the skull and can cause quite a lot of pain if it is aggravated.
If I had no access to medical advice and in a stew I would probably try 30mg and see what it does for a couple of days with strict rest. If there wasn’t a big improvement by Monday but no worsening I’d try the doctor at home again before upping it. I’d also suspect SCM upset too; you did plenty to upset it!
Thank you both so much, I know I’ve been stupid but just wanted to feel a little bit normal, think I was on a high, I’m not going to tell you how many steps a day we did, so silly I know, I will up dose tomorrow, the worse bit for me is the horrible feeling at the base of my scull, it’s just constant, but I’ve read about the sternokleidomastoid muscle and it sounds very like that too, I’ve also read your comments on it before snazzy D, it’s always a juggle and I just wish I knew for sure which it is, I hate to think I could be taking this high ish dose of pred and not need it, thank you both for being here, this illness can make you feel so lost and alone sometimes, will up the dose tomorrow, rest and go from there, thank you both so much!
I’m 66 and one of my friends is 75, she kept going but has now crashed, it was great fun but we are paying the price, 4 of us go away every year, Cotswolds, Bath, mini cruise, think Palma a bit too much to do and see plus the gorgeous weather!
Thank you so much for your help as always, just felt a bit anxious today, we are staying in a lovely hotel as of tomorrow, so feel very lucky, will rest and up the steroids and go from there, thank you again and have a lovely weekend x
Late to the party - the site wouldnt let me on last night so I gave up and went to bed!! I agree with the others really - try more pred first. And have a good rest.
But just another point - be VERY careful with back wash basins if they try to force your neck into an uncomfortable position. It can trap the carotid artery and damage it - and even cause a stroke.
I had trouble with the site last night as well, but lovely to hear from you today, I actually feel a bit better today but not saying much, just keeping everything crossed, I took a couple of co codamol last night and 25mg pred today, so I’m really hoping it calms down.
I must admit I was desperate to have the Brillo pad washed and blow dried, we just about managed to communicate but I am quite short and did feel I was hanging on the basin and it is a lot of pressure on the base of the scull, my own hairdresser is very good and I don’t even let her do a scalp massage, but I think it was Palma high and I let it slip
Do you think I should ask Rod Hughes for any different tests, can GCA affect the carotid Atery, this is the area that I get a lot of pain, thank you for your reply
I feel it mainly where the occipital artery is, I also get very tight and tender along the carotid area, maybe just all tight muscles, as I have been told by an orthopaedic consultant …… I’m complicated lol
Just having a little chat on here last night and this morning has lifted me, we just all get each other❤️
I, too, am a GCA-er like DorsetLady; I would be increasing to protect myself. Though I was not diagnosed until August 2019, while on a cruise in December 2018, I was constantly bothered by neck pain on the left, and the pain would travel up my head. Who knew? Don't take chances. Can you set up an appointment now for when you return? Easy but enjoy💞
Thank you so much, I have followed your journey and I’m so sorry you are going through it all again now, I felt better earlier on today but the scull pain has returned, I have messaged my consultants secretary and hopefully she will get back to me with an appt for my return, you take care and look after yourself x
When you look at the arterial diagram that DorsetLady posted, that occipital artery up the back of the head is precisely where my pain was. It sounds like the same for you. In 2018, I would sit at the computer on the ship and rub and rub behind my ear and up my head. I would think age is in your favor. So, have fun, don't go crazy ~~ I believe that is possible? To a great weekend.💞.
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