I've had GCA for nearly 2 years now and have tapered down to 3.5mg pred. I thought I was doing OK but I have an appointment with my Rheumy next Monday ( not seen him for nearly 8 months). Had my blood tests this Monday prior to going & then had a phone call from my own Doctors yesterday. My CPR is up from 0.4 to 15 & my ESR from 12 to 40. My Doc was concerned that the GCA was rearing it's ugly head again but also asked me about stiffness in my joints etc as he suspects possible PMR. I've had no recurring symptons of my GCA but I'm now worried about what's going on. Am i ok to keep my Pred at 3.5 until I see him next week or should I increase it? I did think I might call the Rheumatology nurse today to ask, but don't know what to do. I have an awful feeling that my Rheumy may want to put me on Methotraxate - he was trying to get me on it for months and I refused as I have been doing OK. Don't know what to think. Am I safe staying on the dose I'm on until next week? Advice gratefully received.
Raised CPR & ESR: I've had GCA for nearly 2 years... - PMRGCAuk
Raised CPR & ESR
As stated many times, the blood test are not just specific to PMR/GCA and be raised for many different reasons - all they do is show you have raised inflammation. Have you recently had a virus, a minor accident. Even a simple cold or a stubbed toe can raise it…
Edit - just seen your previous post where you stated you had injured your neck/shoulder - so probably that.
No, I've not had anything - only problem I have is that my back is very problematic at the moment - having Physio at the moment.
I’d plump for that then!
I had no idea that something like that could raise my levels! So presumably I should ask for another blood test next week or after Christmas to see if they have gone down again?
I have a feeling that my Rheumy will try to increase my Pred regardless and I really don't want to do that unless it is absolutely necessary!
Well it shouldn’t be a knee jerk reaction on just one set of readings. They need to be repeated in a couple of weeks to see if they alter - whether that be a reduction, stay the same or increase. Obviously if they continue to rise then they do need addressing.
Thank you DL- once again, you have put my mind at rest.
And I'd have said exactly the same as DL, bit behind today!
Only geographically! 😳
Nah, aquafit etc and hadn't really started at the oldest posts ...
How do you feel. A while back my CRP went up to over 100 for no apparent reason. I felt fine but I had lots of tests for all sorts of things, as the doctor panicked a bit. The CRP then just came down again. I always have high CRP, around 30, but over 100 is high even for me. Interestingly enough the same thing has happened twice during the spring around March. Perhaps there is something that happens then that my body reacts to??
How strange! Apart from my joints hurting and the fatigue I feel fine. Unfortunately last time I went to see my Rheumy he diagnosed me with having Fybromyalgia after I said my joints were aching ( & I'm pretty sure it's arthritis & back problems I've had for years). He never looked at me or examined me, but just told me! I said - I'm sure I don't have that & he just said ' yes you do' & has written it on my notes! I really don't have any faith in him & I'm not looking forward to what he might suggest I do.
Er - not sure aching joints is a symtom of fibro! It is a kneejerk reaction from some doctors when they don't know and it is a diagnosis I wouldn't want on my notes because once it is there, they try to pin EVERYTHING on it!!!
Yes, I have a feeling he may refer to it next week, so once again I will tell him that I do not have fybromyalgia- whether he will take any notice of me js another thing! Can anyone recommend a good Rheumy in Lincolnshire?
Best to go by symptoms rather than bloods. GCA will make itself known if it needs attention.
Spoke to the Rheumy nurses before my appointment next Monday - as usual they were of no help whatsoever and said i had to wait until Monday. Then today the hospital rang to say my appointment was cancelled as my Consultant is off ill. I am getting a bit concerned as since my blood tests this week my head has that prickly, dull fuzzy feeling and although i dont have a headache as such, i do now have a dull pain in my temples. Nothing that i need to take any painkillers for, but nonetheless a bit concerning as my inflammation markers were higher when my bloods were done on Monday. I now dont have an appointment to see my Rheumy, the 'specialist nurses' dont reply until the next day and of course now its the w.e! Ive stopped my reduction of Pred & am still on 3.5 mg. Do I increase my Pred and if so, to what dose & how soon do I come down from a higher dose if that is what I do? I have no idea when i might get my next appointment and i will have to wait until Monday to possibly/maybe even get an appointment to speak to a Doctor. Advice from you lovely people please!
Have you got enough pred to try the flare protocol?
Add 5mg to the dose you are at for up to 14 days - if you don't need that long that's OK but be sure things are improved - then drop back to the dose ABOVE where you were and see if that is enough.
Yes, I do have enough Pred. So I'll go up to 8.5 (I'm currently on 3.5 but was on the first week of 2 days at 3mg - however, only did the one. Do I stay on this until my head feels 'normal' again? So, when i go back to the dose above what i was on - will that be 4mg?
Yes, that is the idea. See how it goes - if it works, it should take you to after the nonsense of Christmas is over and you have a fighting chance of seeing someone! If it doesn't, there is 111 for advice and access to an OOH doctor. And, if you really aren't well, the ED. If 4mg isn't enough - adjust up to find what feels right.
Don't know if there's anyone there who can answer this for me now. I upped my Pred nearly a week ago from 3 to 8mg as advised. Thought I was ok but my gca synoptic have started to come back- still ache in my temples ( not possibility) but during this evening the prickly site feeling has come back over my scalp. Some to the Nurse at my Docs earlier & she advised I get to a & e if symptoms got any worse over the w e. before I can see my Doc on Monday. I'm frightened, don't know what to do. Thick fog here & my nearest a & e of 30 mins away. I'm not in pain but my scalp does not feel good. What advice can anyone give me please?
Typo errors there- should say gca 'symptons' & 'dull ache' in my temples ( not painful)
Do you have enough Pred to up it to 15mg or even 20mg to cover weekend? And maybe ring 111 for OOH advice… don’t just do nothing and suffer.
Please keep us informed.
Yes I do. I rang 111 last night, spoke to am 'operater' who took all my details & a 'clinician' was supposed to call me back within 2 hours. No one has called me. I'll take more Pred this morning. I'm not in pain but the prickly, fuzzy, scalp soreness is still there- no better atall. Pointless calling 111 again but I could go to A & E if the steroids don't work?
Although the 'operater' said to ring back if I got worse. Problem is they'll probably tell me the same as you have done shall i just increase the Pred to 15 until I see or talk to my Doc or Rheumy on Monday?.
Probably a good idea…
It isn't pointless calling 111 again - you were told a clinician would call you back, they didn't. They should have. The "ring back if you are worse" is a standard to make sure they are kept up to date - they don't have crystal balls - and to catch the situation you have experienced, you have slipped through the net for some reason, easily done at shift changes, and they need to be informed.
I waited the 2 hours for a call back- no one rang-& them i must have fallen asleep as it was gone midnight. A Doc rang me this morning ( presumably from 111 last night) & advised I go up to 20mg to be on the safe side. My head feels very sore & prickly but I've taken the 20mg, now I'll just have to wait , see if it works. He's also said if I get any symptons with my eyes to get straight to A & E - which I would have done anyway.
Two hours is the government's standard target. But at present they are overwhelmed by sick people who can't get to see their GP even when it isn't a holiday. They can't know how long any call will take, it might be 3 mins, it might be 10mins - and some patients either get very upset if the call comes very late or don't hear and answer, It is why we say what we are fairly sure the doctor will say - you rarely wait that long for us!! Especially with DL doing the UK night shift from New Zealand!!!
All I can say is thank you once again to you both. I knew I would have to increase the Pred & I'm just hoping the 20mg works. I'm going to have a lazy afternoon, feet up as I feel very tired. My head doesnt feel right atall, i have no law pain or sight problems & I'm not in pain, just this awful pricky sore fuzzy feeling. Hoping it will disappear by tomorrow & if not, do I call 111 again or give it till Monday when I see my Doc?
Difficult one - if no jaw pain or visual problems, you are probably OK for Monday. See how it goes. All they can do is say take more pred - and if you feel worse, you can do that.
Thank you & yes, I will do. 👍
I'm now on day 2 of 20mg Pred. Still no pain but the prickly sore head is still here, no jaw problems either. Blood tests on Tues p.m. - unless I can get one tomorrow-& supposed to be seen or talk to GP tomorrow. Also going to see if I can get appointment with Rheumy which was cancelled last week. On the 2nd day of this higher dose, should the symptons have gone by now? Are they likely to'up' my dose even higher do you think & I'm sure my Rheumy is going to try & put me on Methotrexate. Do I have to go on it or can I refuse? I'm on my own & really don't want to have side effects of a nasty drug to deal with.
It does depend on whether those symptoms are due to GCA inflammation - and there ARE other causes. And sometimes it takes longer.
No, you don't HAVE to go on MTX , it should be a shared decision. But some rheumies get very iffy when patients refuse it. By no means everyone gets adverse effects - there are quite a few people on the forum on it without any problem. I am far from convinced it has any significant value - but it DOES work brilliantly for a small cohort of PMR patients, the question remaining as to whether it wasn't PMR in the first place as it is the first line approach for inflammatory arthritis. Prof Dasgupta, who has been the acknowledged UK GCA expert for years, once told us he didn't think there was a role for MTX in GCA. Other, self-styled, experts disagree. I tried it but with a very low threshold for saying no due to side effects - for me the fatigue was intolerable. My rheumy accepted that without question.
I think my Rheumy will be one of those who gets very iffy! He's tried twice before to put me on it for no other reason than to get me off Pred ASAP! Hes also tried to get me to go on a far quicker reduction- which I have not done after reading all your advice on here, so I think he will definitely try to get me on it. He decided I had Fybromyalgia after I mentioned a few aches , pains- had his back to me, on his computer- but diagnosed me like that. I said- no, I don't think I have that & he said 'yes you do'. He also said I said some gastric reflux problem- which I don't- & both of these are now on my medical records which I am going to talk to my GP about. I don't really have much faith in him knowing what he's doing but I have no idea where there are any decent Rheumys in my area. If I do get to see him this week I just feel that he won't listen to me again & just make decisions for me without listening or discussing it with me. Have to say, I've been amazed at the lack of knowledge that GPs, 111 Docs & other medical people have about GCA which is quite scary. If it wasn't for this forum, I really don't know what id do.
Does the pain improve with enough pred? Then it isn't fibro. That is where I think all the young cases of PMR end up - in the fibro bin ... My rheumy is on the computer too - but facing me and turning the screen so I can see it.
Where are you?
I think I did last year but I'll try again.
Update- last night the pain started in my jaw ( not had that since before my diagnosis nearly 2 years ago & I'm sure my vision in one of my eyes is more blurry than it has been.) So, I took myself off to A & E. Didn't feel up to driving, so got a taxi -£35! Entered a packed A & E - told them my problem etc & they told me to sit down & wait - I did point out that I was supposed to be seen quickly with this, but they weren't interested. 2 hours later I saw the Triage nurse who took my bloods. 2 hours after that I saw a Doctor who I could barely understand and who clearly didn't know much about GCA, checked me over & said as my blood results weren't back, he 'didn't know what to do with me'. Sent me home with an appointment to go back today( which I have since cancelled as I just can't drive there and sit for another ? hours to see another Doctor ( not Rheumatology , just one who would be there). Taxi home -£40. Rang the Rheumatology Specialist nurses at 9a.m. today. My Consultant Is now off on long term sick, so I now don't even have a Rheumatologist & they have no idea when I might see one. They are going to try and talk to another Consultant tomorrow & get back to me. My GP who was supposed to call me today is not in until next week. Spoke to another GP who told me to wait to speak to a Rhematology nurse tomorrow. I feel I am going round in circles, not getting anywhere but from putting out my message on here I have been given the name of a Rheumatologist ( private) in Lincoln, so I've phoned him & am seeing him on Friday. Other than this, I don't know what I can do. I still have the same symptons on day 3 of upping my dose to 20mg ( from the original 3mg).
"the pain started in my jaw" - what was the context? While eating or what?
I am left to ask what would happen if a patient arrive with one-sided weakness or chest pain and THEIR consultant was off on the sick. Potential GCA is ALSO a medical emergency - it too causes stroke or MI. And the GP practice should be following up faster than that.
This is appalling Janeval 😦 So glad you’ve managed to get an appointment, albeit private 👍
But what happened to the blood result from A&E?? And your GP surgery surely should have a duty doctor who can and should follow up!
All the best x
This is dreadful… do you have enough Pred to up a bit more until Friday? And do please give up an update.
My cataract deteriorated quite quickly as well, but got it done whilst on about 9mg
Yes, I have plenty of Pred & I will see what the 'Speciaslist Rheumy Nurse' has to say tomorrow but I have no idea who she is asking for advice about me! Problem is, my 2 weeks of 'upping' my dose is up on Fri & is it not at that point I can drop down again to a lower dose? However, as I still have symptons, it is clearly not under control yet, so yes, I will probably have to go to a higher dose & then start tapering all over again. I'm gutted as I thought I was doing so well.
Yes it is gutting… but as well all know [some more than others] you cannot afford to be shy with the Pred if it is GCA…
The pain in my jar started when I was eating & I still have it when I open my mouth. I fear the whole system is in meltdown- fortunately I am the sort of person who will chase & follow things up. I have a private appointment on Friday now, but the Rheumy nurse is supposed to be ringing me back tomorrow after she's spoken to another Doctor. I really don't have any faith in them now.
I also went to see my optician this p.m. - managed to get an urgent appointment for her to check my eyes- they're OK, but my cataract had rapidly deteriorated- in the last few weeks- hence why I'm getting the blurriness in one eye now. She also said to me that when I'm all sorted I should put in an official complaint. She is appalled
The typical claudication pain in GCA starts within a couple of minutes of starting to chew BUT it stops when you stop chewing - that is a critical point.
Some people do find their cataracts deteriorate very quickly on pred - that at least seems to be sortable in the UK!!
Yes, that is exactly what happened to my jaw last night.
I’d push the Rheumy nurse for advice on action if at all possible. When I started with GCA they increased my pred over the phone as a precautionary measure and then saw me a few days later….
Well she's supposed to be phoning me tomorrow but she did say she had no idea when I may be able to see anyone.
Than that is a red flag sign for GCA and should be taken seriously. If anything gets any worse - then I fear it is the ED. Preferably at a large hospital that might have someone compos mentis around. Got any friends in Lincoln? I'd say Hull except I know what their ED is like at night!!!
It is definitely a case of fighting your own corner now & persisting or no one does anything or takes any notice of you- especially when you're over 60!
That’s certainly how it feels Janeval !
And I’m afraid I agree with PMRpro that in the absence of rheumatology action, you may need to go to A&E . Preferably get there before midnight at New Year’s Eve…..
All the best x
Update.I went to see a Rheumy privately after being told i don't have an N HS Rheumy ; hasn't seen anyone for nearly 9 months! I had to increase from 3 to 20mg Pred for a flare. Still no info on when I will see or who i will see in the NHS since my Rheumy is now on ' long term sick, probably won't be back'.
Private app- he told me to stay on 20mg for 2 weeks ( I'm now 2 weeks in)& then to start reducing again after a blood test. He also said there was no need whatsoever for me to be put onto Methotrexate as I had already managed to reduce to 3mg on my own. So, I seemed to stabilise on 20mg for a week but then symptons came back so I upped to 25mg. OK again for this last week but the last 2 days the prickly head & mild temple pain are back. I go for my blood tests tomorrow to see if my inflammation markers are down but I have a nasty feeling that the GCA is still active & that I may have to increase more. The strange thing is that the symptons start late afternoon & are there in the evening but by the morning i don't have them or they're very mild- Is this normal?
He also said that I can manage the GCA on my own with back up from my own GP- blood tests etc. - I don't have any faith in the hospital any more, but what do i do when I am eventually assigned another Rheumy? I can go back & see the Private Rheumy if I need to but am a bit concerned that I shouldn't sign myself off with the NHS in case of any emergency. I suppose I should go & see whoever it is but just follow the tapering I did before- slow but sure?
You can always see the new one once and "interview" them. Maybe you will get a gem - but somehow I think it may be a while!!!
Are you overdoing things now you are on a high dose of pred? Strange it improves overnight when the pred is at its lowest and that does suggest it may be something else or, as has been mentioned a few times recently, "break through" GCA that will lurk and then resolve over time.
Yes, that's what I thought I'd do tree the new Rheumy, I'll see how long it is before I get an appointment!Yes, it is strange but I do still have the mi I d prickly sore head in the morning but no temple pain, but it feels like my GCA.
I didn't think of that- I suppose now the Xmas period is over, I have been doing more & I do notice that when I go for a short walk i get tired much quicker. I'll see what the blood tests show tomorrow.
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