I’ve been diagnosed with GCA age 41 but no follow up. I’m really confused :(

Lotus, sorry to hear of your predicament. I was never diagnosed with GCA so may have a few facts wrong, however, the diagnosis of this condition is most unusual for someone of your age although not unheard of. Because of your young age as a patient you would be classed as ‘atypical’, meaning you are a patient outside the ‘typical’ group of people expected to be diagnosed with this condition. Atypical patients should be referred and under the treatment management of a consultant, yet you did not even have a follow up. This is a very poor treatment plan, and I say that because GCA is no walk in the park and there must be a proper treatment plan in place in order to approach the progress of this condition. 

Your GP is adamant that his original diagnosis of GCA was correct, well it’s a pity he has no idea on treatment best practice for it then. Most patients are prescribed 60mgs as a start of dose and the reduction is much much slower than has been suggested. Most PMR patients will be on preds for years (4 years in my case, although not on high doses) so to expect you to reduce by 5mgs every 3 day’s is not good. This is far too quick a reduction planhence your feelings of unwell. Others with more experience will hopefully join thethread soon and i’m Sure they’ll concur that your treatment plan should be spread over years not weeks.

i would definitely request a referral, which I believe you should have had in the first place. I read too many stories on this site of patients whose recovery is simply a journey of too quick a reduction followed by numerous flares and all the trauma of never ending uncertainty of when the condition will ever burn out. Both PMR and GCA are conditions that are there for the long term and GPs need to get to grips with best practice treatment plans. I was extremely lucky in that although classed as atypical (51 when diagnosed with PMR) I was referred to a consultant that did not look along steriods as an enemy but as a friend that simply needed careful management. He accepted my request to implement the dead slow and almost stop method that although patients will be on steriods for longer, because the dose is managed far better, the reduction is slower and so reduces the yo-yo effect of any reduce quickly method. 

Definately request a referral to a rheumatologist and personally I would be tempted to up the preds without delay. Clearly the level of preds are not sufficient to cover the inflammation and you will need to jump on that PDQ to avert a flare. I wish you all the best, regards, Tina

Well I think that tina-up cwall said everything I was going to say only she said it much nicer than I would have. As she recommended you need to see a rheumatologist as soon as possible. And I'm not trying to alarm you by saying that but your doctor is clueless and that's scary. At least he didn't tell you to stop prednisone without tapering. I've read where GPs have said that to patients before. And as far as your thinking your pain was just from working too much, I had the same thoughts when my hands started hurting me so bad I kept blaming it on holding my phone too much. Now that I think about it that's crazy. I hope you get to a doctor who can treat your PMR / GCA properly.

Welcome to a wonderful site full of good information. As you begin your journey through this autoimmune disease you will probably find all kinds of information and wonderful caring people in this group.

There is an article, circulating on healthunlocked, that explains how PMR, GCA and LVV(large vessel vasculitis) are all part of the same spectrum of disease. LVV, I think,is more normal in younger adults, even children. I think the classification of these conditions has changed and that's why people younger and younger are being diagnosed with GCA. But wherever you may be on the spectrum, if you have headaches and facial pain, you should be seen by an rheumatologist ASAP. . I'm sure Eileen and the other experts will explain it better.. recommend a particular doctor in your area.

You'll see that all your questions regarding anything related to PMR/GCA will be answered on here..

Good luck, Lotus

Lotus 76, I second what the other to responders have stated. I think it is a crime how many bad doctors there are out there without a clue. Find a Rhemy, hopefully one who has a clue. Do it quickly! Think positive, welcome to our journey. Smile it helps! 🙂

Hi Lotus76

Your doctor should have referred you to a Rheumatologist for further treatment and you should have had a biopsy of your temporal arteries to diagnose GCA along with ESR and CRP blood tests, although the temporal artery biopsy doesn't always show positive for GCA, but that doesn't mean you don't have GCA perhaps a few biopsies will have to be carried out. Your doc should not have prescribed prednisolone and just left you to your own devices. You have to be managed and monitored whilst on preds by a Rheumatologist..GCA requires a high dose of preds and then tapered really slowly...Your doctor needs to refer you to a Rheumatologist as soon as possible..When you see him show him the posts from the PMR and GCA forum.....best wishes..

Good grief - talk about ineptitude - a doctor like this one really needs some education fast - especially with a condition like GCA which I'm sure you will know from this forum and from other info can lead to irretrievable loss of eyesight. It was with facial pain (I also thought was sinus related) and a prior diagnosis of PMR which turned out for me to be GCA. But I am 65 and you are certainly in a younger than average age group for this - although as others have also said it is not out of the question. I concur with everyone else that you must see someone who 'knows their stuff' to be sure of what's really going on. I hope you manage to sort this all out soon as you sound like you have lots on your plate - good luck with everything !

Possibly it's your age that's confusing them. I was diagnosed with PMR in Nov last year and at 55 Dr thought I was quite young but said you need to be over 55. Could that be what's confusing your Dr's?

I do feel for you not knowing what's going on, that's terrible.

I was told by them that I would only be on steroids for two to three months which is not true. I've also lost confidence in Dr's.

I would definitely push for a specialist referral. Please do, you need answers.

Thank you all so much for the advice. It has certainly made me feel much more confident that I am not going mad! I will be going back to the GP tomorrow ready for a discussion about the next steps...... 

Happy Sunday to you all 

Your GP is an idiot. For a start, at your age it is very UNUSUAL for it to be GCA (not impossible) and if it were then you are so atypical you MUST be sent to a specialist rheumatologist as an EMERGENCY (the same level as a stroke or heart attack).

Your GP has obviously no idea about diagnosis or management of GCA and not even googled how to manage it - it is a longterm disorder, not dealt with by "here's a moderate dose of pred [it is a PMR dose he has given you] and taper off after a couple of weeks. Once it is sorted out a complaint to the practice manager would be a start and possibly even to the GMC - his actions on the basis of his "diagnosis" are medical negligence.

The others have already said pretty much everything I'd have said so I won't repeat it. However - inflammation of all sorts would raise the ESR (which is what I assume he did) and 33 isn't actually that high. It would be very high if it were the CRP and a lot of different causes of your symptoms would probably respond to pred. There is a relative GCA called Takayashu's arteritis which is "assigned" to young patients and other forms of vasculitis could also cause the sinus pain etc. in their early stages - and NO GP is well enough trained to make a certain diagnosis, especially on the basis of a blood test which is so non-specific.

Where are you? Maybe we can direct you to the best local option.

Hi Lotus76 - my GCA was diagnosed around the same time. The CRP was high 76 and when put on a high dosage of prednisone it went down to 4. Initial symptoms were severe temporal headaches, jaw claudication that made chewing painful, and visual disturbances where one eye would partially lose sight for a few seconds. All indications that there was insufficient blood flowing to the eyes and jaw. A temporal biopsy confirmed the diagnosis. Once the CRP level reduced to normal and stabilised (it's about 10 now), maintenance has been the very slow tapering off prednisone that will take two years in total. I don't make decisions for myself as the tapering plan by the hospital rheumatologist is working. I was lucky that it stayed in my head, had a positive diagnosis early (that included a temporal artery biopsy), put on steroids and escaped the nightmare scenario of losing the sight in one or both eyes. Prednisone is a wonder drug but comes with a litany of nasty side-effects. Drugs to counter these effects are necessary: Omeprazole to prevent stomach ulcers and Fosamax to maintain bone density. Calcium is also important, so is eating a lot of fibre prevents constipation. As the doctors said, it is manageable, treatable. Understanding what is happening is paramount. I found joining this forum was very illuminating. It's a scary journey and somehow comforting to know one is not alone. 

Concerned about your reduction plan. It seems too fast. Most importantly, you don't need the added stress of uncertainty. Do you have PMR as well? Or did you even have GCA? You need to know. Have a talk with a rheumatologist as they are more qualified to treat vascular diseases. 

Best of luck - cheers from New Zealand.

I want to add some mitigating comments to Sandy's comments.  It is often NOT necessary to take a PPI for gut protection, or if something is needed there are other less problematic meds (omeprazole itself is implicated in bone thinning).  It is also usually NOT necessary to take medications to treat pred-induced osteoporosis - which isn't inevitable in any case.  However cautions about your rate of tapering should be heeded - slowly is best!