Advice regarding possible Giant cell Arteritis

[Runrig01]

Hi there, I am 49year old. Almost 3 years ago I developed pains and stiffness in neck, shoulders, bottom, hips and thighs. After 14 month of suffering I was diagnosed as "Atypical Polymyalgia Rheumatica", and started Prednisolone in Dec 2012. 3 months after starting steroids I developed symptoms of GCA, which I'm at risk of getting. Initially it was burning temples and jaw cramping, followed shortly later by tongue pain with ischaemic patches. The tongue until recently kept me awake 2 nights a week with continual spasms. My Rheumatologist calls them fasciculations. I also have pain behind both ears which is tender to touch. After 7 months of continually expressing my concern re symptoms, Rhrumy did a temple biopsy. By this time I'd been on Pred for 10 months and was told to expect a negative result. I then had MRI of the brain and orbits which were normal.

I was then transferred to another Consultant, as mine left the a Trust. This new Rheumy refuses to discuss these symptoms, when I mention GCA he states "not in my lifetime" . My friends and family feel I should take the route of a specialised vasculitis clinic. What are your views on this, and if so scan anyone recommend one with a specialist who is open minded re age, bloods etc. I live in a Deal and am prepared to travel. I have a daughter who lives near Hammersmith, but would be prepared to go to Cambridge if needed.

I am currently on 4.5 mgs of Pred, and 150mgs Azathioprine. Since being on top dose of Aza my tongue has stopped twitching, and the burning sensation I had along the sides of my tongue is gone. Still get discoloured patches that throb. Each time I reduce Prednisolone I develop more GCA type symptoms: pulsatile tinnitus; cramp in right arm; vertigo - some of these have also improved as Aza has been increased. I am however nervous each time I reduce hoping it's not my vision this time. I would value your opinions on if a specialised vasculitis clinic would be beneficial and any recommendations you may offer.

I apologise for the length of this post, Regards Runrig x

[mickt]

hi runrig I have gca pmr click me name to see rest.I feel for you when experts seem to be ignoring your symptoms.With me at 50 when eyesight in one eye went straight into hospital on metyl pred iv pmr pains eased and eye ok this was june 13.Ive been yo yoing for over a year on pred im currently on 30 mg day after one of about 6 episodes of double vision .Im on second lot of cyclo for immune system.It would be good to see someone who believes you and will treat your symptoms.I had negative biopsy also.Ive been pensioned off work with ill health,been a topsy turvey year to say the least.But im thankful to my medical team rhuematoligist and opthalmogist been very good ,and if feeling shit and no energy is the price I have to pay for my eyesight so be it.Good luck when you get someone who believes you,im sure all will be well for you.Mick.

[BronteM]

Hi runrig, it sounds as though you are having a terrible time. It is so hard when you feel so ill and no one seems to believe you. Lots of us have been there! If you can get to Hammersmith easily, Professor Justin Mason runs a GCA/Takayasu's clinic there. I found his email address and emailed him directly two years ago as I was looking for a second opinion. His secretary replied very quickly and I saw him within about three weeks. Definitely worth trying, and you are entitled to a second opinion, whatever your current doctor says. He and his team were great, really thorough and very understanding. I've moved on because I found it difficult getting to Hammersmith on a regular basis, but would definitely recommend that you try contacting him. Good luck.

[Runrig01 in reply to BronteM]

Thanks so much for your reply. I try hard to continue working despite all this. I am in nursing in the NHS, so may be able to email him direct for his opinion, I have a 20 year old daughter living near Hammersmith, so that would be great :-). Thanks again, Runrig x

[AndrewT]

Dear runrig01,

Having read your post I am, quite frankly, furious NOT with you but for you! How DARE 'they' ignore your worries/fears like this! I don't know your age, if you are a boy or girl, indeed anything about you- 'they' do! I think, in fact I know, you need at the very least a 'second opinion- if not a new consultant/doctor. I am under Dr David Jane, at Addenbrooke's- who is also on the board of both Vasculitis UK & Health Unlocked- for vasculitis care. (I had a kidney transplant, a year ago now, and have just been referred back to Ipswich hospital, for that part of my care.)

I was also on Azathioprine, for about fifteen years, prior to my transplant. I was, and indeed still am, on Prednisolone although only a low dose (6mg).

Here's me 'rambling' on (and on and on...)....SORRY! Basically you, and as many others as you can possibly muster, need to BARK, and BARK, until you are listened to! If you get no 'joy' then consider asking for a referral to Addenbrooke's- a 'treck' I know but maybe worth considering?

Please do let us all know how you get on please?

In the mean time all our thoughts are with you (I'm sure of this)

AndrewT

[Runrig01]

Thanks for your support Andrew. I am 49 years old and because of my Polymyalgia Rheumatica I have a 15-20% chance if developing Giant Cell Arteritis. That's what makes it do frustrating, you are asked to look out for these symptoms. Then when they start appearing, they tell you it cant be possible because of my age and normal blood tests. I plan on speaking to GP to see if he will agree referral to a vasculitis clinic. I'm looking for an open minded specialist. I reduced my Prednisolone by 0.5mgs and tongue pains have Increased. Is Professor Jayne open minded?

Hope you keep well these days. Cheers Runrig

[BronteM]

Looking back at your first post, I'm concerned about the level of drugs that you have been prescribed. When I was first diagnosed, I was put on 60 mg of prednisone a day, and have only got down to 4.5 mg nearly three years later. The divide between PMR/GCA/Takayasu's is pretty fluid, and age really shouldn't be part of the diagnosis. Technically I am 'too old' for Takayasu's, but Addenbrookes have finally decided that I do have it, based on my symptoms, scans etc. my diagnosis was also delayed because of my fairly normal blood tests. Looks much the same problem as yours? So you MUST get a second opinion quickly. If it is GCA you are risking too many nasty side results if your GP waits....a point that the Hammersmith made very strongly when I saw them.

[Hidden]

You are totally right BronteM, unfortunately Runrig and myself ( our cases are fairly similar although our symptoms differ a little ) have really struggled to get that elusive diagnosis and effective treatment.

Since I spoke to you last my Rheumy has decided that my symptoms have a " significant psychological component " and that there is now no evidence to support an ongoing disease! I am waiting to hear if I can get a cross border referral to Addenbrookes, lastchancesaloon!

[Suzym2u Moderator Vasculitis UK in reply to Hidden]

Where are you seen Keyes if you don't mind me asking. Wales or Scotland?

[BronteM in reply to Hidden]

Grrrrr! Why does it always come back to our psychology? Good luck with the Addenbrookes referral.

[Runrig01]

Hi Bronte, when I was initially diagnosed with PMR I was on 15mgs. It was raised briefly to 30mgs by A& E when the head symptoms started in March last year, but my Rheumy then threw her teddy out the cot stating I could not be that unfortunate to have "atypical GCA" as well. She insisted I drop back to 15mgs over 2 weeks.

I have had a confusing email from Prof in Hammersmith staring the symptoms I describe seem more neuropathic in nature! I have most of the symptoms listed for GCA, I have already seen a neurologist who ruled out anything neuropathic. At times I feel I'm heading up a dead end and will never find my way there to a diagnosis. Prof also says being on low dose Pred with Azathioprine I am not putting my health at risk! Then why do new symptoms keep appearing as I lower Pred dose. frustrated

[BronteM in reply to Runrig01]

I really can understand that you are getting very frustrated. It does seem to take forever to get the medics to consider vasculitis....even with no pulse in either arm and bizarre blood pressure values, I went through diagnoses as varied as frozen shoulder, GERD, fibromyalgia and 'stop fussing and take a couple of paracetamol each morning and then forget about it'. The latter from a rheumatologist that I saw privately! We just need to keep fighting....but both Prof Mason, and then Addenbrookes were the people who actually listened to me with open minds.

[Hidden]

Hi Susan,

I am in Scotland. I post here under my alter ego but under my own name in the closed Facebook group. Still waiting to hear if I can get to Addenbrookes, because I haven't heard anything I am hoping the CHP is still considering it and it isn't a definite no!

[Suzym2u Moderator Vasculitis UK]

We attended a Vasculitis Masterclass at Warrington last year for GCA and TAK ( Giant Cell Arteritis ) ( Takayasu Arteritis ) some of the top specialist from Europe were speaking about both types of Vasculitis. There were around 50 Clinicians there. One of VUK's trustees wrote a brief summary of the day for the VUK newsletter.

Prof Justin Mason was one of the speakers his special interest is in TAK but I believe he sees patients with GCA too.

David Jayne and his team are part of a "multidisciplinary centre" based at Addenbrookes so manage all types of vasculitis plus Lupus.

The link below is to the Spring 2014 Vasculitis UK Newsletter, the article I mentioned above is on page 11.

vasculitis.org.uk/content/d...

[Runrig01 in reply to Suzym2u]

Thanks for that Suzym2u, I have already approached Prof Mason, and he has agreed to see me in his Vasculitis clinic if I wish. Have a lot to think about, it appears that even if I was diagnosed with GCA, little would change in my current treatment due to being on tapering dose of steroids for 18 months. I also take the DMARD Azathioprine, which all medics so far feel stops me bring at risk of the complications of GCA. I'm not sure as the charity PMR/GCAUK state the evidence for use of DMARDS in PMR or GCA is weak. I tend to lean towards this view as each time I reduce my Pred another symptom occurs, and worry one day soon it will be my vision.

I will read the article in more depth and am grateful for your help. Kind regards, Runrig x