Higher CRP with jaw and temple pain

[KTHE]

Quick summary. PMR for the last 2 years, managed by GP. Started on 15mg of prep but never been able to reduced below 5mg without symptoms of PMR. 3 months ago started to have painful jaw especially when eating to the point do no finish meals as too painful, also pain up through ears and temple and back of neck into head. GP did bloods and CRP are raised to 20, so repeated twice I've 8 week period and still raised now 17.

GP report, haven't spoken to them as yet now stated CRP abnormal but to be expected no further action.

Think I need to discuss results as they haven't even rung or asked about my symptoms during this retest time?

Any comments and advice welcome.

[DorsetLady PMRGCAuk volunteer]

Sounds very GCA like to me - all are classic symptom - so never mind NFA…., action needs to be taken -and now!

Certainly increase in Pred -so please contact surgery today. ..and if they don’t diary then A&E -you need a dose of at least 40mg.

Perhaps print off guidelines (see link) and take to GP surgery….and tell them you could be at risk of sight loss if they don’t take things seriously..,

pmrgca.org.uk/wp-content/up...

Please keep us updated.

[KTHE in reply to DorsetLady]

thankyou, I'm going to contact them today

[EdithWales in reply to KTHE]

Good. Let us know how you get on

[KTHE in reply to DorsetLady]

quick update, I've been in A&E for the last 24 hours to cut a very long story short, in depth investigations carried out now on on 40mg of pred and followup consultant and scan appointments for Monday and Tuesday.

My advice to anyone with GCA don't delay!

thanks for all your comments and advice

[DorsetLady PMRGCAuk volunteer in reply to KTHE]

Crikey, what a wait, but so glad you persevered and have got the ball rolling -good luck and please keep us informed … a lot to get your head around -but that’s why we are here . 🌸

[PMRpro Ambassador in reply to KTHE]

Result!!! I'd like to be a fly on the wall when your GP gets the letter ...

Did the hospital have a protocol for suspected GCA? It isn;t so bad being stuck in the ED when they are at least DOING things!

[Carriemetz in reply to KTHE]

well done!

[PMRpro Ambassador]

As I called this up to reply I realised what I wanted to say was a bit naughty!

They are all red flags, ESPECIALLY the jaw pain if it starts while eating and eases when you stop and it alone should result in a referral. You can test too - chew gum at a rate of 1 chew per second for 2 to 3 minutes. If the jaw pain appears it is strongly indicative of possible GCA,

The CRP is NOT expected to be abnormal IF you are on the correct dose of pred. However they want to look at it, you are not on the right dose.

[Carriemetz]

Please be careful. This sounds so like my experience of GCA and if ignored/misdiagnosed for whatever reason, the potential sight loss is not usually reversible. Please make a fuss and ask every medico u have contact with to consider and test for GCA. The jaw pain when chewing that u describe is a ‘cardinal sign’ - do not let them ignore it even if yr markers are stable bcos have been on pred for PMR. Persist! The squeaky wheel gets the grease and it’s your sight not theirs. Good luck. Carrie

[piglette]

You have to be pro-active if you have those sort of symptoms. GPs nowadays seem to wait for the patient to come back to them sadly.

[Suffererc in reply to piglette]

it becomes quite scary the way they work now. On the news last night a piece about Surgeries and how this new system is failing peeps.

[piglette in reply to Suffererc]

What is the new system? I seem to have missed it!

[Suffererc in reply to piglette]

ask my GP

[piglette in reply to Suffererc]

Is it just your surgery or is this nationwide?

[Suffererc in reply to piglette]

nationwide. Some are not doing it because they don’t like the system.

[PMRpro Ambassador in reply to piglette]

I was wondering that!!!

[PMRpro Ambassador in reply to Suffererc]

Is that surgeries as in operating theatres or as in GP practices?

[Suffererc in reply to PMRpro]

either. Ours is just a GP surgery. You can phone from 7am to make an appointment until 830 unless it is full. You explain your reason for phoning and they respond within hours and either telephone, message or f2f which ever they decide is appropriate.

They do not take telephone appointments. You get a GPor NP whichever they decide or the nurse. PM is for emergency appointments only.

Most dislike it when we ask around, but they sen to love it

[Suffererc in reply to Suffererc]

ps. Invariably the system is full by 8am. Plus you need a smart phone.

No smart phone then phone reception who fill out ASK my GP for you. Then just wait

[Suffererc in reply to Suffererc]

plus that can mean a 25 minute wait on the phone to be answered.

[Suffererc in reply to Suffererc]

I am in Lincs and my daughter is a NP in Suffolk . They are also doing it

[PMRpro Ambassador in reply to Suffererc]

That'd be me then!!!!

[Suffererc in reply to PMRpro]

what ring reception 😂🤣😂🤣😂 not when you wait in the queue for 25 mins get to No 3 in queue and get cut off so have to start again . Only to get to number 3 and cut off again . Gave up in the end and went to surgery only to be told they had a problem with the system. They had asked me to phone to rearrange appointment THEY cancelled

[Suffererc in reply to Suffererc]

after last nites Nat TV some GPs mite be thinking twice about the crappy system as the Doctor said folks were dying because the care wasn’t good enuff

[piglette in reply to Suffererc]

My surgery have changed their telephone system and it tells you where you are in the queue now. It takes ages to answer as before. I had a call from the practice manger the other day to say that a cat had got locked in to the surgery over the weekend and could I help find the owner, DC Piglette at your service! I found the owner and when I contacted her she said she was sitting on the phone waiting for them to answer as she was number 9 in the queue. On the plus side you don’t need a Smart phone, just an ordinary phone. Why does your surgery’s system need a Smartphone?

[Suffererc in reply to piglette]

because that is the only way to use the system. ‘Buy a smart phone’ they have shares in them. They assume everyone has a smart phone today 😂🤣😂

[PMRpro Ambassador in reply to Suffererc]

No - don't have a smartphone!!!!!! Don't need one - don't particularly want one. I do have one in the house, my daughter gave me an old iPhone but I do everything on my computer and can't get the hang of Apple stuff.

And one of the joys of living here is I can phone my GP, she answers the phone! Or I can turn up and wait at her surgery hours. Sometimes it is a bit of a wait but she doesn't go home until the last patient is gone. I just take a book. She does do home visits if necessary.

[Suffererc in reply to PMRpro]

you are very lucky. I have a smart phone . Had one for years. Do everything on it except calls cos can’t hear. We can also get into our records and read what they have put. Makes interesting reading sometimes 😊

[Suffererc in reply to PMRpro]

most Covid reminders are sent by phone. Tough if you haven’t a smart phone because you can’t book your appointments . I had to book a few people 😊

[PMRpro Ambassador in reply to Suffererc]

I think we are old-fashioned enough to be able to book by phone! Last time I just turned up at the place they do them - it so happened there was a walk-in session that day but it didn't seem a problem, A nice Italian soldier gave me the form to fill in ...

[piglette in reply to Suffererc]

So if I understand it you phone up between 7.00am and 8.30am and ask for an appointment. You then get contacted on your Smartphone and no other way to tell you the type of appointment you have and when? Is that correct for this new system?

[Suffererc in reply to piglette]

sorry lost my reply.

Yes. If the system is full you don’t even have those times. They decide who should deal with you unless you ask for a specific GP. They always phone back albeit mite be a receptionist. (Receptionist now trained to deal with queries 😂🤣😂🤣😂

[PMRpro Ambassador in reply to Suffererc]

"Receptionist now trained to deal with queries"

I don't accept a receptionists opinion on medical questions ...

[Suffererc in reply to PMRpro]

neither do many but who are we the patients to reason why!

They are a protected specious now. Most are so young they couldn’t have any life skills

[PMRpro Ambassador in reply to Suffererc]

Had to laugh at autocorrect - specious seems very appropriate ...

[piglette in reply to Suffererc]

I still don’t understand why you need a Smartphone. They can phone people back on their land lines or do they refuse to?

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Our surgery always sends a text message to confirm all appointments - if you opt into that service.

[piglette in reply to DorsetLady]

you don’t need a Smartphone for that though I assume?

[DorsetLady PMRGCAuk volunteer in reply to piglette]

No you don’t, but I have one anyway…

[piglette in reply to DorsetLady]

It is just I do not understand how Suffererc’s surgery works. It seems terribly complicated having to phone up between 7.00am and 8.30am and then having to sign into an app on your Smartphone to see the reply. Unless I have completely misunderstood.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

No I don’t either - it just sounds bonkers.

Fortunately I don’t need many appointments nowadays and no urgent ones. Urgent ones have to be called in from 8.30 so I imagine they might be a bit torturous,but run of the mill after 11.00 - and as soon as it’s made you get text confirmation-sometimes before you’ve finished phone call!

[piglette in reply to DorsetLady]

My surgery sends texts, which you can do on landlines as well as mobiles. I don’t understand on this new system where the Smartphone app requirement comes in when you want an appointment, as the patient is told they must contact the surgery at certain times, ie between 7.00am and 8.30am which you can’t on an app??? 🤯🤯🤯

[Wallysma in reply to piglette]

you can get a text on land line there??? how does that work. I was like PMRpro never wanted cell phone once I stopped working. But now nobody wants to talk just text. Then covid hit and and all docs and even vets would use text to talk while you are in car with pooch if for some reason you were phyically there. So I gave in. Now here in Delaware everyone has portals and text everything. Go to.appt and their head is on computer hard to have conversation.....anyway sorry I got on my soapbox when I wanted to ask 1 ues. Lol

[PMRpro Ambassador in reply to Wallysma]

I do have a phone - an Italian one that receives and makes calls and texts, not that I text much. It is a basic Nokia though. Until now I have had a UK phone but that is now gone thanks to Brexit - it must be registered on a UK provider every 90 days. That isn't going to happen. It is my original number from the 1990s in my first small phone, a Nokia that was bought in 1999 - still using its original battery! Quite a wrench that.

[Wallysma in reply to PMRpro]

wow.....I had a Samsung like that for years and years. So it's a cell or landline? I need more coffee obviously.

[PMRpro Ambassador in reply to Wallysma]

Yes - a basic cell phone for the hospital to send me texts and as a contact number. It is a pay as you go - and I struggle to use 5 euros of credit a year - about 5 dollars now. I have a landline but that seems to be for cold calls! Not too sure why I have it but it comes with the wifi package!

[Wallysma in reply to PMRpro]

got it. Sorry I misunderstood. I did the same thing for years after I went on disability. My landline was only used by telemarketers and scammers as well. One nice thing about moving from DC to Delaware...new phone at home no creep calls! Now I use my cell but the whole 4G/5G change pushed me to get a new better phone. I do like it because it's kind of intuitive but not apple. Since covid had me using it more making the change made sense....I still don't chat on it. But it has been good but I hate to.admit that.

[piglette in reply to Wallysma]

Yes you can get a text on a land line in UK. It comes as a recorded message. I think it is digitally created from a typed in message from the sender.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Yes it is-I got one at midnight at New Year a few years ago from a reveller (friend) who obviously selected landline number instead of mobile!

[Wallysma in reply to piglette]

wow...that's pretty cool.

[piglette in reply to Wallysma]

It can be a real nuisance as you can have messages coming through early morning when you are asleep. I then discovered that you can postpone it until later in the day. The other problem I have had is that my insurance company use it as security using a Microsoft system. You get phoned up and they say the code. If it is 100000 they say one hundred thousand not one zero zero zero zero zero, which makes my brain hurt. I have to listen to the message several times to work out what the number is! Goodness knows who decided to use that idea. I also have to have a pen and paper for it which is a bit annoying.

[Wallysma in reply to piglette]

so can that be moved to a cell phone or not.....

[piglette in reply to Wallysma]

Instead of using the landline number when you send it you use the person’s mobile number, so it is the choice of the sender who can send to either. I sometimes get messages on my landline to say that something has been delivered for example.

[Wallysma in reply to piglette]

OIC. Pretty cool. I know here in the states.a lot of people don't have funds for cell or even internet...it's upsetting to me that tose two things have become so much a part of medical care. One thing I am struggling with is my rheumy comes into the room.and sits in front of the computer and usually it's on a table in corner. I understand the need to m figure out who is in the room and what is going on....then look at labs and then ask questions and answer questions but I think it is part of the reason my last appointment went sideways. My pain doc sits facing me two feet away and doesn't keep his face in the computer. Technology can help but it's a tool.that's all. Ok enough about that!

📞☎️💻🔨😀

[piglette in reply to Wallysma]

You are right everything you do seems to require a Smartphone and the internet. Doctors normally seem to look at a computer screen and never actually look at the patient. Even then they do not seem to read what is on the actual screen!!

[Wallysma in reply to piglette]

or really listen to the patient...sometimes not making notes on the computer as to what the patient reported. Arrrrgggg. Ya know being sick is A lot of work. But there are many places where the workload could be reduced.....especially here in the states if you are a pain patient. Anyway....have a good rest of the weekend.

[piglette in reply to Wallysma]

Spot on. Being sick can also be expensive!

[Wallysma in reply to piglette]

REALLY spot on. I worry that I will get something serious and expensive and will have to sell my.house and live in my car. And I love my house....it was a smart move for me.

[piglette in reply to Wallysma]

Someone said why not get sent to prison as everything is paid for there and you have medical help!

[Suffererc in reply to piglette]

it is like a message service. Landlines don’t do that. You go into a site at your Surgery then ‘Ask My GP’. You records are connected and you need yr dob

Everything is digital today. Yes they mite ring you on your landline with the help but that is all.

They assume everyone has Smart. Can’t do it on a normal mobile

[PMRpro Ambassador in reply to Suffererc]

We get a simple text. Amazon does something similar don't they? I get messages that are useless to me. Just as well I have email though

[Suffererc in reply to PMRpro]

yes. Peeps with ordinary mobs get message or text to tell them to phone. Or that GP will ring them at some point in the day. So hang around contours got nothing to do 😂😊😂

[piglette in reply to Suffererc]

I still don’t understand. You phone the surgery on your landline between 7.00 and 8.30am. How do you know they have come back to you if you have to log into an app?? Don’t they contact you any more about your appointment? I am sorry to be so dense, but I would like to know how the new system works and why you must have a Smartphone.

[Suffererc in reply to piglette]

it’s ok. Until you have to use the system it is very confusing.

We log into our surgery name, then go to Ask my GP. It asks for you name and dob. Then it go to the programmes, all diff. Diabetics, blood pressure etc. pick Ask my GP and it then asks questions about you and what your problem is . They phone back or message, text you with a result or telephone consult or if you have asked for f2f you get an appointment. All done on a smart phone. Ordinary mobile phones can’t do it. Wrong that cos it means you are forced into buying a smartphone.

That is our system at the moment. Hopefully it will change back. Makes you feel nobody cares

[piglette in reply to Suffererc]

We do have eConsult where you tell your GP what the problem is on-line, accessed from their website. You are then contacted with a prescription, an appointment or just advice. I find it works very well. We also can phone the receptionist any time, for test results, emergency appointments etc. I can also use patient.co.uk to look up my test results etc. I don’t understand about the phone calls you have to make between 7.00am and 8.30am you were talking about and need a Smartphone.

[Suffererc in reply to piglette]

we have to log on to Ask my GP between 7 and 8 30. After that you have to wait until next day. Those are the times for making requests for GP. If the service is full then time is shortened. We can phone if you have 25 minutes to spare just to get thru to reception then you are told to go to ask my GP or they fill in a form for you.

[piglette in reply to Suffererc]

So you could access MyGP any time in fact. It is the phone calls that must be within specific times.

[Suffererc in reply to piglette]

No we cannot phone the surgery. We have to log on between 7 and 8 30 or until the spaces are full b4 8 30. If they are full then you have to wait till next day. You can phone reception after that but appointments will all be gone and the receptionist takes you thru the process of the log in system. Afternoon sessions are for emergencies only😊

[Suffererc in reply to piglette]

we don’t make phone calls. We have to log on and put our request thru Ask My GP. Phone calls to our surgery are a not for making appointments unless as a last resort you don’t have a smart phone.😊

[piglette in reply to Suffererc]

Ah, I thought you had to call between 7.00am and 8.30am as in your original post you said “Ours is just a GP surgery. You can phone from 7am to make an appointment until 8.30am unless it is full.” You also mentioned waiting ages for them to answer “We can phone if you have 25 minutes to spare just to get thru to reception ”. You are saying if you don’t make a phone call you have to use an app which I assume you can use at any time??

[Suffererc in reply to piglette]

have you got a laptop. Look up As my GP. Think that may explain better than I can. 😊

[Suffererc in reply to Suffererc]

Ask My GP