I was diagnosed in early febuary with PMA. And was on 20mg pred but over 3 weeks down to 12.5 pred, which took me to last Monday 9th mar,
i started with bad jaw pain couldn't open my mouth, and then numbness and t tingling on both sides of temple and headache (but not unbearable)
i went to A and E and was started on 60mg and admitted, test were carried out next day and biopsy done early Thursday morn,
on frid head a bit sore and just slight headache and I was discharged and back in 10 ten days,
my CRP was down to 18 when leaving hospital it was (83 in early feb)
on sat and sun I had unbearable headaches,
I thought maybe I was having side effects to pred,
yesterday I went to hospital in tears with pain and jaw pain coming and going,
they took blood and my CRP was 77 why is this when I'm on 60 mg?
the consultant didn't rule out allergic reaction,
just wonder if you have side effects dose it mean pred is no working on symtoms?
im back on Friday if headaches don't improve they give it to me intravenously.
how does everyone deal with side effects like sleeping for example thanks everyone and good luck
Eliz - that is one hell of a drop in dose over a very short period. You did the sensible thing and went to hospital to get it checked. If it's GCA the high dose will be the best result for you - it can cause you to go blind!! A slow taper is the name of the game with PMR and GCA. Best of luck
Oh elizabeth, I do feel for you. I am not medically trained and I also do nit suffer from GCA so have no words of experience to offer you. Are you seeing a rheumatologist or is it a a &e Dr. 60mgs is definately the standard dose for GCA. Have you not had any improvement with the 60mgs to your GCA symptoms? And I'm wondering if not whether you should get yourself back to hospital before Friday.
hopefully, Mrs o, who has had GCA and Eileen will reply to your problem very soon but one thing is for sure your reduction from 20mgs to 12.5 in just 3 weeks is far to fast a reduction. Get this hitch sorted out then follow the slow and small reduction method. All the best, christina
Elizabeth
With that pain and the hike in CRP from 18 to 77 in just a couple of days, I'm surprised that the extra steroid dose wasn't given to you intravenously straight away. Sometimes even 60mg isn't quite sufficient to get the inflammation of GCA under control and keep it there. Of course it could simply mean that you are taking a little longer to respond to the treatment, but in that case I find it unusual for the CRP to increase to the extent that it has after initially reducing to 18. If you still have as much head and jaw pain tomorrow I feel you should return to A&E - meanwhile remain alert to any problems with your vision, in the case of which go to A&E immediately.
As for how we deal with the side effects such as difficulty sleeping, there is no magic answer in the early days of treatment, other than to catnap during the day and if/when you feel up to it take a little walk in the late afternoon. Also avoid coffee or any caffeinated drinks, especially later in the day.
I wish you well, Elizabeth - keep in touch and let us know how you are.
I am not sure I understand the chronology of this and the dose you are now on.
Are the headache and jaw pain similar to the pain you had that led them to diagnose GCA? (You say the headache is now more severe- that is typical of GCA headaches!) If so, this sounds like you need a higher dose of prednisone to control the arteritis. While 60 mg is the typical initial dose for GCA, some people need 80. I wonder why they are waiting to do the IV dose when you are in such distress.
Your earlier description of your symptoms were classic signs of GCA/temporal arteritis. Please call your doctor or go to emergency care if this is possibly the GCA not being treated/controlled. It is a real medical emergency!
I did not understand which symptoms you thought were side-effects of prednisone.
About sleeping, I had terrible insomnia when first on prednisone. I think this passed as I adapted to the drug. I take 2 antihistamines at bedtime now and sleep fine. It was really miserable being wide awwake most of the night and groggy and spaced out all day.
Elizabeth- I may not have made clear in my last message how worried I am about you! I may not have understood correctly- if so please forgive me if I got it wrong!- but it sounds like you need urgent care. At least that would be the prudent course of action.
Are you seeing the same doctor who diagnosed the GCA? Can you return to him or her? The response about your pain being an allergic reaction seems very odd since the jaw pain and headache are so typical of GCA.
Take care of yourself! This is no time to be shy!
The 2 antihistamines do help for sleep........I have taken them in the past.
Elizabeth, you say sleeping problems, everyone has answered, so far, because of NOT sleeping. However, some of us slept 16-18 hours per day at first. Are you perhaps one of those? Neither are pleasant, that's for sure. Good luck, and keep in touch.
Thank you for your caring thoughts, I'm am seen same consultant, just so worried about headaches. I was thinking at first it was the side effects of pred. But when I went to hospital on Monday. And found out my CRP had gone from 18 on Friday ( and felt ok when I was discharged) to CRP 77 on Monday, I suppose it would make sense that severe headache and jaw pain would be temporal arteritis and not side effects. Just confused and wonder why when I'm on 60 mg of pred ( on it for over a week) and seemed to work quickly at first, what going on now? back on Friday for blood test. If headaches don't settle down they take me in again. Thanks for your concern . I know we are all suffering here, and wish everyone well
Thanks Christina when I went into hospital last week with numbness and temples sore and swollen and slight headache, I was admitted and was put on 60mg pred it did seem to work and I'm am seen rheumatologist, I did have biopsy on last Thursday and felt fine fine when I was discharged on Friday. Just Saturday and Sunday severe headaches and jaw pain, it's headaches that frighten me, they have given me pain killers that dull it a little thanks and best wishes to you
thank for caring, I felt fine when I was discharged from hospital on Friday, so I'm so confused as to why it would jump from 18 to 77, and then everything comes into your mind, thinking could the biopsy have made it worse, I keep you posted x
Constance I think it's insumnia like what snapperblue said so maybe it's that, but then so afraid of headaches, but part of me dosn't want to go to sleep in case I don't wake up😳
So sorry to hear of your suffering. I have GCA and can understand how painful it can be. You MUST get help, from GP or A&E as blindness is a threat with GCA if not kept under control. Let us know how things go.
Hi Elizabeth, so sorry to hear that you are having a rough time of it. Your condition is serious and needs to get sorted as soon as possible. Please keep us informed of how your doing. Lots of healing and positive energy going your way. God Bless. Take Care. Pat
Late to the party - I'm abroad today ;-) (Austria instead of Italy)
Hope you are feeling better - but I'm really not sure I would wait until Friday if you don't have at least some improvement.
I'm not sure but I think the iv version is a different form of pred - was it iv they gave you last week? I can only say that when I had medrol tablets here they gave me a load of side effects (weight gain, muscle wasting, mad frizzy hair and awful skin and a beard!) but it didn't seem to control the PMR and I had a massive flare. All went away as soon as I was switched to prednisone.
It's possible you went to hospital in fairly early stages of a massive flare of the GCA, the fairly high dose of 60mg managed that but hasn't been enough for a very active reaction. It is known for 100mg to be required.
Hope you feel better very soon.
As Eileen pointed out in a recent post, the "standard" dose is not the appropriate dose for everyone. When I was diagnosed with PMR and put on 15 mg pr prednisone, it did almost nothing in 5 days. Even 20 mg took a while to take effect. The standard 60 mg dose may not be enough for the state of flare-up you are experiencing.
The jaw pain is characteristic of partly blocked vessels that are not delivering enough blood to the muscles. If the branch of the artery that goes to the nerves related to vision is blocked, irreversible damage is done to the nerves. The first sign of this is loss of vision- like a curtain dropped over part (or all) of the visual field.
Please don't wait for that! If your symptoms are not greatly improved by now, what do you have to lose by a trip to the emergency room?
I feel that I am being very bossy. You are an adult and can make your own assessment of the situation and decision. I'm just basing thison my own experience.
When I was faced with a diagnosis of GCA, I decided the outcome I wanted to avoid was being blind and wishing I had not been so polite, regretting that I'd been unwilling to bother the doctor or go to emergency care.
Take care of yourself!
Hi elizabeth, yesterday evening you started this thread because the pred albeit helped dramatically with your recent GCA diagnosis now appears to be having little effect. How have you been today? Remember what most of us are saying if you are still experiencing the GCA symptoms pop along to a&e again. But do let us know if you are feeling better today. All the best christina
Thanks Christina it's so comfortable to know you are all there. Still got headache today but not unbearable. And jaw pain is when I eat is painfull ( but not unbearable )and have to rest between mouthfuls. Like it takes longer to eat your food. Just wish it would all settle down. Thanks again
im sure Eileen you don't want to be getting messages from me, but just to say have headaches (but not unbearable like they were, and when I eat, a little bit painful and have to rest in between mouthfuls, should I still go to A and E, thanks again
Elizabeth, any, and i mean any difference to your vision and you really must get yourself to a&e immediately. GCA is classified as an emergency and you will be seen. I've read all the other replies and as some of the GCA sufferers have said sometimes some patients just need that little bit more of preds in the beginning. Let us all know how you fair tomorrow . Regards, christina