Hi All , well I can safely say today has been a traumatic one , thank you PMR Pro for helping me through it . I’ll keep the details as short as I can i’ve Had PMR for 3.5 years , Friday evening my temples where pounding I had been getting headaches for the last two weeks on and off but Friday was the last stray I called 111 and they advised me after talking to 3 people to take 60mg of pred currently on 5mg , till today when I am seeing my GP he sent me to the hospital , blood tests ECG the usual stuff bloods came back normal , so rheumatology advised the A&E doctor that on the basis that the bloods are normal it’s not GCA , they have told me to take 20mg of pred for 2 weeks , then 10mg for one week then back to my bass line 5mg, no return appointment date given , PMR pro kindly sent me some links explaining that just because my bloods are normal does not mean I haven’t got GCA . It’s a very worrying situation to be in but what can I do , it frightens me to think I could go to bed and god forbid wake up without sight . Also they told me that if I take 20mg daily it will be enough to save my sight Incase the diagnosis on GCA not being a factor is wrong , thoughts on that one might help me sleep at night . I am sat at home already got the temple pain back and no pred till tomorrow morning .
Is it GCA or not that is the question : Hi All... - PMRGCAuk
Is it GCA or not that is the question
Hi Gaz,
Sorry to hear all that. As you say, blood tests not necessarily reliable as you are already on Pred. Have you got enough medication to take extra? Or have they only prescribed enough to follow instructions?
I would be inclined to take an extra 10mg for the next couple of nights if only to put your mind at rest - hopefully that will ease the headache. And then see how you are in a couple of days and re-evaluate.
They only gave me enough for the first two weeks , as I was only on 5mg Blew out my extra stock on last weekends performance .
Well in that case I guess you’ll have to hope they’ve got it right! Unless you can talk nicely to doctor and get another prescription from him. Obviously if things deteriorate to any degree then back to A&E.
Sorry can’t help any more.
If I am in any doubts I will get straight back there 👍
One question,when they were treating you for PMR, did they yo-yo your dose? If the answer to that is Yes, then I would not wait.
I would sit in A&E till I saw the Consultant on duty in A&E and ask him to ring Professor Bhaskhar Dasgupta or Dr Sarah Mackie, both leading researchers in the UK. You can find there numbers on the web - just by putting in their names.
Or go to your GP and sit till they see you and ask them to contact either of the above people.
You, deep down, know you have GCA, it is your sight so fight your corner and take someone with you to help you stand your ground.
Bravo jinasc xxxx
I have nothing useful to add to the quality of the advice you have been getting from PMRPro. I would be very worried too and insist on proper care. You should be treated with the same urgency as someone with an impending stroke. I wish you every good outcome.
Gazz this is disgusting. How dare they treat you so carelessly. Do not let them dismiss you. Remember my adage that I got from Germaine Greer: “ You have to save your own life “ x
I woke up this morning not a very good night sleep as you can imagine , no temporal pain , but my eyes are very sore like I have conjunctivitis bathed then and the sting has gone , also feel stuffy like a pending cold , anyone experience them symptoms with what I am currently experiencing , the eyes where sore yesterday on and off ?
Gaz I had flu type symptoms including a sore throat & a headache like no other which strong painkillers didn't touch. Take no chances! It's your sight. I was lucky the GP put me on 40 mg pretty quickly.
Thanks , i’m Taking it all onboard
Just had contact from Dr Hughes in Surrey he said I must increase to 30mg for 10 days if the temporal pain has gone in 3 days it is very likely to be GCA . He uses this method and he said it works in 95% of patients . So I have taken another 10mg , I have to contact him in 10days in which case what has happened in those days will determine the plan of attack . Plus that will protect my sight while we determine what the situation is .
Good advice.
How do you get enough pred?
The hospital gave me 3 boxes of 5mg ,in my car and the wife’s car we have a 2.5 box each emergency supply Incase we got stuck anywhere, so I will now put in a repeat prescription , so i’m Covered 👍
When I am contacted by the hospital rheumatology department would you still follow up there appointments if only to tell them what Dr Hughes’s thoughts on the matter are ? I can already feel an effect from this 30mg dose today heads gone a bit woozy
The GP that sent me to the hospital wasn’t my regular GP but seemed to be on top of things , once I told him my symptoms after examining me he went next door to consult his colleague and sent me straight to hospital .
Yes he’s been there some time I just always used another chap, but it was a two week wait for my regular GP so got an appointment anywhere I could , my own GP was the one he consulted to decide to send me to the hospital .
Sounds like a pretty useful pair all things considered.
Question , what’s the situation if it is GCA and flying with recently diagnosed condition such as this as I am due to go to Russia at the end of March , my insurance currently states I have PMR which I paid extra for but is GCA a different kettle of fish ?
I don't know - others may though. However, if you already have the insurance it should still cover you as the ?GCA happened later than when it was taken out in good faith by you for PMR.
You might be better asking as part of a new thread because when you ask a question in the middle of a thread it may not be seen by as many people and miss the people who know the answer.
I know people with GCA do fly quite happily although there are doctors who want patients to hang around in the early stages. It depends a lot on how you are - one lady was diagnosed and immediately headed off to Spain on 50mg or so of pred for a holiday. She had balance problems, fell and ended up spending almost the entire week in her hotel room because she couldn't stand the heat.
Haven’t had a good day today in terms of the latest goings on , feels like I have tooth problems in my right jaw and a tingly face on the same side that has been coming and going also my neck has been giving me pain not like the muscular type a real stabbing pain the neck pain has gone now but still not right . Is it a good idea to take an aspirin just to thin the blood out about or should that be something they prescribe as i’m On 30mg , the other question is 30mg enough to start the healing process withvthe inflammation or is it just a safety level dose for now . It really is a worrying time till things get sorted . Sorry to keep firing questions but at the moment I feel the forum is my only support .
The aspirin recommendation has been removed in the newest guidelines - the benefit didn't justify the increased risk of gastric irritation and bleeding. If you still have symptoms at 30mg I'd email DrH.
He did say give it at least 3 days at 30mg to see if the increased dose works so I suppose I should wait and see if it has improved by tomorrow evening that will be the 3rd day on 30mg. The temporal pain has reduced but not completely gone but bearable, the others are symptoms I never had initially .
New to this forum. Did everything work out for you? I just started pred 2 days ago. My temple throbbing has stayed the same but my eyes feel way better today! What an awful condition with the possible outcome of stroke or blindness! I’m scared to go to sleep at night because you don’t know if you will wake up!? :0(
Hi kern1410, welcome to the forum. I am sorry you have had to join. I have PMR not GCA but hopefully I can help reassure you a little. What dose are you on? How long have you had symptoms? Once you start treatment at the right dose then your symptoms should start to be controlled. You might want to start a new post so you can ask questions directly relating to your needs and get some answers that may help you get some sleep, bear in mind that the pred at GCA will be a bit trippy to say the least. You might feel a bit anxious but please don't worry about not waking up. It just increases chances it's not a death sentence.
Thanks! I will try and start a new thread. To answer your questions - this has all happened this week. I had symptoms for almost 2 weeks - weird headaches and my eyes hurting - which I chalked up to other things - but when my temple started hurting and didn’t stop - I went into my doctor. I went online so I had a suspicion - but of course I wanted it confirmed. She sent me straightaway to do blood work and started me on prednisone. 2 days 60mg - 2 days 40 mg - 5 days 20 mg - 2 days 10 mg. Like I said - my eyes feel way better but my temple is still throbbing! I’m calling after lunch to get the blood results and following up with my eye doctor, rheumatologist and cardiologist. It will take weeks to see them all and I feel time is of the essence!
Thanks. GCA cannot be treated that way I am afraid. You need the 60mg for a month and/or until most of the symptoms are controlled before you start reducing. Them you reduce more slowly. I will post a link of the guidelines for treating GCA that you and your Dr should read. Hold fast.
That would be great! Another question - are you in the UK? I’m in the US - California - do you think treatment and drug dosages would be the same? I will take the guidelines to my doctor.
Yes. GCA and PMR know no geological boundaries. If you Dr is hoping to take a biopsy then there might be a reason for such a fast reduction but as you have found some relief already then you should be given to chance to have treatment. Will pop up soon or someone else might.
Sorry yes I'm in UK. Here is the link to lots of resources. You need the Bristol paper that are guidelines, especially table 5 and the Eular paper straight below. There will be people around so ask about anything and try not to get overwhelmed!!
I feel that there is a lot more research I need to do. I am afraid of having a biopsy. Did you have one done?
No I "only" have PMR. I would be nervous too as they can be inconclusive. There are people who have had it done and scars have disappeared etc. There are other ways of diagnosing. I think ultra sound is used. I presume your health insurance will dictate what happens to some extent. I think in a lot of cases once you have taken pred for a couple of weeks it pretty much means that it becomes more difficult for them to find the inflammation. It's good that Dr got you on a high dose so soon, they like to do blood test for inflammation markers CRP/ESR too. But note that there are people who don't get raised markers so don't let them tell you it's not GCA if CRP/ESR still "normal".
You should be okay at the moment on 60mg, but if there are any visual problems then straight to the emergency room. It's something we tell everyone so don't worry. As I say you should be ok on 60mg but you need to discuss your dose and possible biopsy with Dr.
If you have the biopsy within a few days it can be useful. The main reason it is useful is if it definitely shows signs of the "giant cells" which have formed because of the inflammation. Unfortunately rather a large percentage of biopsies are negative and this does NOT mean you don't have GCA. It means the part of the artery biopsied didn't contain the cells they were looking for. Your symptoms are the most important thing. The advantage of having a positive biopsy is there will never be any second guessing or questioning of the diagnosis of GCA. Whatever your doctor says, please pay attention to your symptoms and if you feel your treatment is not going well don't be afraid to seek another opinion. Do you have medicare or another health insurance?
Hi Kern , I was in a bad place for at least a month after I posted this thread , I was taken into hospital after a visit to my GP , they put me on 55mg of pred for 4 days the Rheumatologist was convinced it wasn’t GCA , I had lots of blood work followed by a CT scan and they still couldn’t find nothing but my temples felt like they where going to explode plus both my eyes started dropping . I got an appointment with a neurologist who did a specific blood test for Mythenious Gravis, it took 6 weeks to get the results back in the mean time I had an MRI of my head which came back ok , I got the bloods back and that was negative but the neurologist said that doesn't Mean it’s not MG, you can have what they call a negative positive result , anyway at the moment , I have dropped my pred dose down to 7.5 mg , and have an appointment to see another neurologist at the end of June , it looks like I have ocular MG by the way my eyes are going plus I have all the lethargy problems that are associated with the condition , MG is another chronic auto immune condition that effects your muscles from a neurological perspective not fun . All I can do now is try to stay positive and hope the neurologist has an answer . I hope your problems are just PMR based , I have had PMR since June 2015 and it’s a real rollercoaster of a journey but stay positive , take advise from the experienced members on this site ( PMRPro and Dorsey lady just to name two) , when your body says rest, rest , and you will be ok . Good luck 👍😀
Thanks for responding Gaz! I’m in your boat - my head is killing me and so are my eyes (which have improved somewhat in the that last 3 days) and I want answers as well! I’m glad you are closer to finding out what’s going on. It’s hard for me to feel positive when things keep going wrong! But I’ll keep chugging along!
All the best , let us know how you get on 👍😀
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