Suspect Giant Cell Artritis, should I act or wait a day!
Posted , 9 users are following.
Hello, I'm new to the group and am going I can get some opinions from you! I have RA, Fibromylgia & psoriasis ams am seeing a rhumathologist. In May he diagnosed me with PMR, gave me a steroid injection and prescribed 5mg prednisone daily. Was doing well on this and it was taking care of the pain. Was back to see him 2wks ago and told him about headaches I've been having on right side in head. He checked for tenderness and asked about jaw cramping. He was going on 2 wks holidays that day but was sending me to get ESR & CRP blood tests done and said he'd look at then as soon as he got back. In the meantime the temple pain had been getting worse and more local, my tongue gott painful one day and horrible taste but eased of the following day, various other symptoms during the couple of weeks. Then yesterday night woke 3 times with pain in both temples and radiating across my forehead, back of head and up to crown, stayed most of yesterday plus felt really ill and generally awful, eventually went away almost completely but back again this morning on both sides, more local to both temples. Got blood results on Wednesday. My ESR was 24 down from 27 in May and my CRP was 7, and had been 7 in May. My doctor didn't want to make a call on Gca and said wait to see what Rhum doc said when he got back from holidays which is tomorrow. My question is this....should I go to see a doctor today, it wouldnt be my own doctor, or wait till tomorrow to see/talk my rhum doctor? I have to say I am worried sick. Thanks for any advice!
0 likes, 75 replies
Guest Mrs_Hobbles
Posted
With a confirmed diagnosis of PMR and being started just recently on only 5mg Pred, with the symptoms you are experiencing it does sound as though GCA is jumping on the band wagon. With that head and tongue pain, you would be wise to seek immediate expert examination and advice. The rheumatologist was wrong to dismiss your head pain two weeks ago saying that he would check your latest ESR and CRP results after his return from holiday. In the case of GCA affecting the temporal artery, there really is no time to lose in treating the inflammation to prevent it worsening to the extent that the giant cells block the blood vessel leading to the optic nerve, thereby putting your eyesight at risk. I note that you have a rheumatology appointment tomorrow but with what I now know about GCA/TA, if it was me I would have been hot-footing it to A&E/emergency room before now. Nothing to lose but everything to gain. Lots of good luck wishes.
Mrs_Hobbles Guest
Posted
Thank you so much for your advice and apologies only getting to reply now! My wifi was down until the Monday night so I'd stupidly put up with the pain. During Monday pm/Tuesday am pain became almost unbearable and my husband and i considered A&E but the idea of having to explain everything to a new doc while feeling so dire weighted against having an appt with my Rheum doc 3 hours later, I opted for the Rheum doc. I know it was probably foolhardy as something could have happened in seconds. When I originally told him about the headaches I wasn't aware of this condition, in fact had never even heard of it and only since diagnosis have I learned about it and the catastrophic consequences! I'm now trying to come to terms with having to take such high doses of steroids, irony is up to a year ago I was only taking painkillers and supplements, was dead set against being put on medication, I also have Fibromylgia, rhumathoid arthritis & psoriasis, now PMA & GCA. To say I'm aggrieved is an understatement!! Anyway, i ramble, once again thank you for your care and thoughtfulness, I really do appreciate it!
Guest Mrs_Hobbles
Posted
It's so reassuring to hear back from you and to know that you have been given a definitive diagnosis and the right treatment to protect you from the risk of loss of vision.
I do both sympathise and empathise with your initial shock at being so diagnosed - we have all felt as you do now. However, once you have got your head around it all, and the steroids have got control of the inflammation and thus the pain, you will feel start to feel so much better and more in control of the situation. Just be sure to have as much rest as possible in these early days following diagnosis and let the steroids do the rest. You will probably have loads of questions so just come back and ask away - there will always be someone around to try and help from their experience.
Meanwhile, there are a couple of excellent books available, one by Dr Kate Gilbert , 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' which can be purchased either direct from the Charity or from Amazon; the other 'Living with PMR & GCA' available from the PMR&GCAuk North East Support Group.
Also, if you are in the UK, there are support groups dotted around the country - if you can let us know your rough whereabouts there might be one near you.
Mrs_Hobbles Guest
Posted
Thank you again! I'm in Ireland, and yes it would be good to know if there were any groups here. I'll definitely get those book thank you, feel I need as much info as I can get now to try and understand it all. I felt quite good on the Wed and Thurs after starting the steroids but yesterday it all went downhill. I did alot in Thursday and felt it might have been that but think it's the steroids kicking in now! Was absolutely exhausted but also have a pain in my throat since early yesterday and now I'm thinking it's my thyroid! Do you think this could be the case and what can I/shud I do for it? This is 2nd night awake after 4 hours, although so tired! Thanks again for the advice 😊
Guest Mrs_Hobbles
Posted
You're in luck if you're anywhere near Sprucefield - a small group have a cafe meet-up at the Premier Inn there on the 2nd Monday of each month from 11am to 1pm. Let me know if it's a place you can get to and I'll send you further details by personal message on this site - if I quote the contact number here my message will take a while to appear as it will be checked by the moderators.
Oh dear, you have fallen into the trap of so many people when they first start treatment - you cannot expect to do a lot on one day and not get payback or go back to square one on the next. Such a shame when it sounds as though you had a good response to the starting dose so quickly. You will find that that steroids will take longer to get control over the inflammation if you don't take things very easily at this stage and give yourself plenty of TLC - you need to learn to pace yourself. It takes lots of patience but if we learn anything when going through PMR/GCA/steroids, it is patience, and we need it in bucketloads. It is quite common to find we lay awake for hours on the very high starting doses needed for GCA as they can put us on a "high", but do make sure you are taking the dose as early in the morning as possible to lessen this side effect. If you have any queries about your thyroid then you should get that checked out by your GP. But at this moment, it sounds as though you have simply overdone things - "being exhausted" is par for the course especially in the early days, without even exerting ourselves. So take it easy.....and stay positive, you will get better but you have to help it along by following the 'rules'!
Anhaga Mrs_Hobbles
Posted
MrsO hit the nail on the head. This week I experienced a demonstration of what overdoing it does to someone on pred. Circumstances beyond my control meant that on Thursday I did far far more, physically, than I usually do. All that day I was telling the various people who enquired that I had been feeling better than I had for some time. On Friday morning I woke up, as I'd half expected to, feeling very stiff and exhausted. But I knew what to do, which was, don't do much of anything, and by day's end I was back to my new, improved, PMR under control self! It was a great excuse to sit quietly and watch a lot of Olympic coverage. 🐎🏃💃
EileenH Mrs_Hobbles
Posted
What should you do? Behave like a poorly person for a few days!
Although there is nothing to see GCA is not a common cold - it is a serious illness involving much of your body in some way or another and then you are on a high dose of pred, a very powerful drug. You must look after yourself and rest to give your body a fair chance to heal itself. Pred will stop you sleeping but lying and relaxing is the next best thing.
You have to learn to pace yourself - here's some useful reading:
https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000
It will get better - but for now: indulge yourself and be a Precious Princess! It's allowed - in fact, required!
Guest Anhaga
Posted
Anhaga, I'm loving the Olympics, too - won't know what to do with myself when they end tomorrow.....well except for all the exciting household chores that have been neglected over the last couple of weeks!
Guest Mrs_Hobbles
Posted
Mrs_Hobbles Guest
Posted
Thanks re the name, my daughter started calling me that affectionately & it's stuck!! Checked Sprucefields on Google maps and is a 4 hour drive from me so not an option unfortunately! But it is a great help to have you genuinely lovely people who take the time with help and advise, I'm really blown away (& humbled) with all the responses Thank you again!
Guest Mrs_Hobbles
Posted
Oh that's a pity. Do give PMRGCAuk a ring though on 07722 827 947 or 0300 999 5090 in case they have someone on their waiting list who is nearer to you and interested in meeting up.
EileenH Mrs_Hobbles
Posted
Mrs_Hobbles Guest
Posted
Thanks for the info, I'll definitely ring them!!
EileenH Mrs_Hobbles
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As MrsO says - I'd be seriously considering taking a book to A&E, together with a support person to vouch for how bad you are!
That ESR is actually fairly meaningless after 2 weeks so a repeat would be called for but a fifth of patients may not have raised blood values anyway. It's a clinical diagnosis - on the basis of symptoms.
However - if you have any visual symptoms AT ALL, don't even consider waiting until tomorrow. And go to an A&E in a hospital big enough to have a rheumatology department - where you see your rheumy is ideal. He may not be there, but there will be a rheumy on call at the end of a phone.
Mrs_Hobbles EileenH
Posted
Thank you also for your reply and advice, as I said in my last reply, my wifi was down do Diddy even see your trollies till Monday night, would definitely have acted so much earlier if I'd seen them earlier. Got more blood tests on Tuesday and need more done before I go bk to him in a month but he said the same as you that the blood don't even count when weighted against the symptoms. Have to say the whole thing has been quite shocking, given the catastrophic consequences! One again thank you so much for your cate and thoughtfulness, I really do appreciate it!
Mrs_Hobbles
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*didn't * replies *care!! Sorry bout that!
EileenH Mrs_Hobbles
Posted
An edit would be SOOOOO useful!
Glad it is now all under supervision - better late than never!
Here's a link for links to reliable info and other sites:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
which includes the northeast support group site where you get a lot of info and access to the booklet MrsO mentioned.
I'm also very glad you seem to have a good and broadminded rheumy (some think highly of blood results...) - and I also know they are rare birds in parts of Ireland. Ireland or NI?