I am waiting for an GCA temple artery biopsy referal. A little worried about what to expect

It was not an easy ride to get the diagnosis.  My gp was reluctant as he thought I was to young to have pmr but he could not talk away all these symptoms.  I got referred to my rheumatologist and he did some more blood tests. I went away still in agony as he would not prescribe me the pred till blood test results were back. So 2 more weeks till then naproxin was taking the edge off the stiffness.  I am not an expert but you have pain in areas what does not sit right with pmr. I hope you will get a diagnosis soon and the right treatment .  D 

What were your symptoms? I just dont know what to think as I have spoken to others who say my symptoms are definitely pointing to pmr, but you think not? The other thing with me is that the week the gp gave me preds I felt wonderful, but she would only prescribe for a week, so I was told if I felt so good with them then that is a good indicator, but I am very interested if you think my symptoms are not pmr related. Any advice is welcome

A lot of people think there are areas you don't get pain in PMR shazzy - I had pain all over - nothing was excused! And I know plenty of people whose doctors have said "You don't get pain with PMR", "You don't get hand/foot pain with PMR" and a few other things - you can and do.

It really is your response to the moderate dose of pred that is most convincing. 

Thank you Eileen, i know you said that to me right away. Well I am counting the days for my rheumatology appt in Friday. I really need some kind of relief now, the pain is making me feel desperate. I am searching constantly for answers and ideas for relief. I have noticed lots of bumps on my fingers too and sharp pains often throughout the day all over my hands and fingers. My knee pain is catching up to my hip pain now too. Do you have finger nodules? After so many years of suffering various pains and being dismissed by rheumatologists I am not holding my breath for this appt, just really hoping that this one can give me answers that none other has managed to do so far. Even when my bloods showed ANA and I was told I had some sort of auto immune disease YEARS ago, they did nothing but give me standard pain relief. You really sound like you know what you are talking about and i really value your advice. Thank you! 

I had a small "Heberden's node" on the index finger of my left hand - but it has disappeared! I have a bigger one on the index finger of my right hand. I have a tiny bump on my right thumb. I also got the sharp pains all over my hands, like little hot knives sticking in me. They took quite a while to go with the pred but they did go eventually. So did the pain from my elbows to my wrists that I had thought was RSI but it does come back if I try to carry something heavy - like hauling a case around on holiday.

I suppose one of the typical things we've all noticed when people ask if there is any painkiller that will allow a lower dose of pred is that NO, nothing touches PMR pain except the pred. Some doctors maintain you can use ordinary pain killers for mild PMR. As PMR goes, my first 5 years were mild. No pain killers controlled the pain, if I was lucky they took the worst edge off it but not always.

One lady was told to take ibuprofen in the early days - after 3 days she was in A&E with a stomach bleed. Another lady whose OA pain returned at lower doses of pred was told by her GP to take paracetamol continuously for the pain, it was perfectly safe. After a couple of months her routine blood test had raised liver enzymes: panic on the part of the GP and she was sent for a liver scan. Perfectly clear - it was the paracetamol.

All the very best for Friday. Remember - don't put on a brave face! How often do people go to the doctor and he asks "And how are you today then?" - and they say "Fine!". If you were fine you wouldn't be wasting your time or his!!

I worry about the effects on my liver of all the cocodamol and tramadol I take. They dont want to give me preds for fear of causing other problems but  dont mind at all me taking 8 x30/500 co-codamol, 8 x 50mg tramadol and 2 x10 ml liquid morphine daily! Sounds crazy to me! 

I think I may have a gp on my side, he agreed that the fact that the prednisolone and the steroid injections I had that made such a HUGE difference, is something to think about. So, fingers crossed that this time next week I could be taking something worthwhile and be able to get my life back. My mortgage is going to go into arrears by way too much if I cant get back to work soon, its been a year now that I have been off sick, but even before that i struggled for years.

No - I agree wholeheartedly with you - it's fine to hand out 3 very strong and potentially addictive drugs that don't help but not to give you a moderate dose of the one drug that does do the job. Yes, there are side effects to pred, I'm not disputing that, but they are nothing like as bad as many doctors seem to think.

Being immobile is the biggest risk factor for osteoporosis - and losing your home because you can't work is a major risk factor for a lot worse things. The trouble is that many doctors just have no concept of how we mere mortals exist. When you have been working in the NHS for long enough your paid longterm sick leave is pretty good although it has to be for something genuine. 

Remember to ask about all these things - like "Why is it OK to take all this stuff that doesn't work but not the 15mg pred that was a miracle for the week I was allowed to take it?" And really make sure that the good result with pred comes out in the discussion.

I think eileen is best to ask and i see she told you a lot about it. How are you feeling.? Have you been to see your rheumatologist yet. Hope you feeling better . 

Thank you this is definitely good to hear. I will have a look for the utube video as I like to know what is going to happen. So by the looks of it I will not be waiting for weeks then. As I tought I would be. Will the pain go away with me taking 60 mg of prednisone ? Or will this be around for a while? Only been on 60 for two days so far.  Hope all is well with you and thank you again. 

If GCA is suspected and you are put onto high dose pred, as you are, the biopsy needs to be done within a very short time. The biopsy is only positive in less than half of patients so the decision to use high dose pred should be clinical (on the basis of the symptoms) and that rate falls the longer you have taken high dose pred for. If the biopsy is positive it is 100% certain you have GCA, if it is negative it doesn't mean you don't have GCA and they should continue the pred if they were comfortable it was GCA causing the symptoms.

On 60mg you should get relief from the symptoms within a few days - they may take longer to disappear altogether, they may not disappear totally. If any of the symptoms get any WORSE don't wait for Monday and the GP practice to be open, go along to A&E and explain to them what is going on and ask for advice. Sometimes they need an even higher dose of pred for a short time to control the swelling that is stopping the full level of blood flow to the optic nerve as that is the biggest risk. 

Thanks eileen for your reply.  Its great to be able to speak and learn from people like yourself. My Gp referred me and I don't know how long it will take before I hear from the hospital.  I am taking the 60 mg of prednisone as my gp said to take it till the biopsy was done. I am also taking co-codemol .. well I am trying it out as the pain is getting to me and the right side of my head is pretty painful and appears worse today . I work at my local hospital and don't like to be there as a patient but will go if I have too. I am on my 3rd  day on the high dose now my jaw does not ache as much but tge blurred vision is still there and the pain on my temple and surrounding area still persists  

If it is still getting worse do please go to the hospital.

The GP should have phoned for an emergency appointment - urgent isn't quick enough. Some hospitals have a fast track system so the patient is seen in 24 hours or less. My optician in Scotland used to phone the hospital in town and tell them he was sending a query GCA patient with a letter with the results of what he had done - he didn't even wait 24 hours.

They don't wait for an urgent appointment - which by the way can take weeks - for a heart attack or a stroke. Both of those and GCA are medical emergencies - they need to be seen quickly.

I hope your reluctance to be there as a patient isn't because it is a bit iffy! I know the feeling though - my husband and I also had the joys of being treated by colleagues ;-)  It saved his life though - but upset his GPs who had missed a serious cancer diagnosis, they thought it was asthma! But it was OK - they blamed me for interfering :-)

Hello Eileen sorry it took so long to reply.  I took your advice and went to a&e. They kept me in and fast tracked my biopsy for tomorrow.  Thank you for listening and putting me straight . Let you know how I gotten on when I am back home. Whenever that will be . 

Good - not that you are in hospital but that your A&E took things seriously. And even better that you didn't "wait til Monday". Let's hope they get a positive - because whilst GCA is not a nice diagnosis if the dx is positive then there will be no arguments later. If it isn't and they decide they have to look for something else you'l be hanging about. On the other hand - they may just decide to work on the symptoms, which they certainly seem to think are GCA  or something very similar - and you HAVE already been told you have PMR. 1 in 6 or so of people diagnosed with PMR do go on to develop GCA, the PMR was just the early stages of the GCA, it is just a milder version in some ways. 

I notice you said no one warned you of this - that is very remiss of someone. Never mind - you are in the best place now. Good luck and get well soon.

PS - what part of the country are you?

I am in north Lincolnshire eileen. Just waiting for the doctor to show up so hopefully I will get an idea of what and when things going to happen.  

Which hospital? Scunthorpe or Grimsby? My husband is from Cleethorpes ;-)

The mind boggles why my response has been moderated! It mentioned 3 north Lincolshire towns!! Good luck though!

Scunthorpe . Been funny seeing this thru a patients eyes. I am normally on the other side lol  wish I would get to see the doctor.  Only thing is I know the doctor and most of the staff. Which makes feel a bit awkward . Still no news will keep you updated 

Yes mine is too. So dont know how long my reply will take to be moderated 

I now know why! Where innocence is bliss...

Yes, I'm never quite sure which is better, to know them or not. Suppose it depends on why you are there - but it does usually improve the service. Not that my daughter would agree at the moment!

I think it helps knowing people I believe it gets you results faster.  Not had my biopsy yet. Watch this space now I got the ball rolling . 

Groovy, I had to go to my "old hospital" today to get a Dexi scan and a Brain CT w and w/o contrast.  I ran into a small roadblock in addmitting but once I mentioned I was a former emplyoee and frequent flyer and therefore a VIP the blocks were removed and things went swimmingly!  It was also so nice to see familar faces I could ask to help me as I traversed the halls!    

Hello  sorry I have been so quiet. Back home now from my hospital stay. I had my biopsy done 2 days ago. It was not a very pleasant experience but it is done now. Awaiting results.   . In the discharge letter it's been stated that I to carry on taking 60 mg of pred.  for  10 days after that to reduce it 5 mg every week till I am back on my base line of 15 mg. Does that sound ok to you?

Hello sue .. all went well.  Biopsy been done on the 3rd . So 5 days after I started the 60 mg of pred.  I know that they might not find any giant cells . The doctor recons I am to young to have gca or pmr even tho that my rheumatologist has diagnosed me with pmr month ago. He thinks it is neuralgia . I had neuralgia before this was totally different.  But I am no doctor and don't appear to know my body  

It seems quite a fast reduction down to what is quite a low dose for GCA - most people take a few months to get from 60 to 20, spending a month at each dose. However - it is probably OK as long as you watch like a hawk for a return of any symptoms. And if they get a positive result they may change those instructions anyway.

Good luck - and do take it easy for a couple of weeks. Even if you did turn out to not have GCA (not that a negative biopsy means that, about half of patients with GCA get negative biopsies for various reasons) high pred is quite a strain on the body.

I do wish they'd get up to date! Last year a man in South Wales was found to have had GCA at the age of 37 - proven. The youngest I know of was in his teens - proven by biopsy. It is a total misunderstanding of statistics: just because 85% of patients are over 50 it doesn't mean there aren't occasional patients under that age. And there is a paper discussing this, warning about missing cases of GCA because of this fixation with age.

I will wait and see. They might get a positive biopsy result and change their mind.  I will take it easy. I have a sick note for 10 days. If I am feeling ok I be going back to work. If not I shall see my gp. Awaiting follow up appointment from a rheumatologist who saw me in hospital and ordered the fast track biopsy. He was very interested in my case but I believe still unsure if it was gca even tho he said I showed all the classic symptoms.  

I know you addressed your question to Eileen, but if I may I would like to add my sixpence.  The best way to titrate down from your 60mg dose is to take it SLOW and not be in any hurry to titrate down.  Follow your MD's advice but IF you find you cannot tolerate the scheduled titration, speak up and discuss it with your MD.  I was having serious side effects from  my Prednisone and I felt I needed to get down to the lowest possible dose asap.  In hindsight this was not one of my better decisions.  This is what comes of trying to be the MD, the RN of 42+ years  and loosing sight of the fact that I just needed to be the patient!  Follow your MD's POC but if it is not working for you, once again speak up.  

We can all give you the benefit of our own personal knowledge with Prednisone, BUT ONLY YOU  can judge how you are doing with the drug!   

I hope this helps you and I hope I didn't ruffle any feathers by answering your question.  As I said, I am trying hard to learn to be the patient myself!  

Groovy, 10 days seems an awfully short period of time to R & R.  Your body has been thru hell and back and I think you will find 10 days is just not sufficient time.  I have the "luxury" of being unable to work due to my many health issues.  But each time I have a setback it takes me twice as long to get back to even close to my previous level!  Don't let a piece of paper tell you how long you need to be off work!