Returning symptoms

[CathT]

My initial dx was GCA. The it was unspecified vasculitis, then it was more likely a lupus/ vasculitis overlap. Last was it is autoimmune but don't know what! So they took me off Methotrixate to see who I faired. My eyes sight is worse and had this confirmed with eye test, my temple pain along with jaw pain is back. I have had a telephone consult with the clinic and see them in December. Has anyone else had a similar expericence and if so what happened.

[Hidden]

I have LCV and have eye problems with sinuses infection and inflammation. Use eye drops because the vasculitis causes dry eyes. It is a help.

[Hidden]

Hi CathT,

I have a very similar story.10 months of joint pain, fatigue, anemia, weight loss etc. ? PMR, started 15mg pred, then developed blurry vision, jaw pain and headache. High dose pred, temporal artery biopsy -ve.

Am being told now some sort of auto immune inflammatory disorder which may be vasculitis. On 10 mg pred and 15 mg methotrexate. Still very symptomatic, lost weight but can't eat much due to jaw pain. Vision worse and now need reading glasses.

Have been all over the UK trying to get diagnosis. Am being seen at multidisciplinary vasculitis clinic, have been told will need to give higher dose MTX chance to work, as I have no end organ damage.

Off work for 6 months due to fatigue, joint pain etc.

I'm not sure I have been much help but it is comforting to know I am not the only one in this position.

John Mills at VUK has been a great help to me. You can phone or e mail him, ( contact details on VUK website ). Maybe you need to see a different specialist.

Good luck. If you come across a miracle cure/ diagnosis let me know.

Best Wishes

Keyes

[CathT in reply to Hidden]

Hi Keyes, which clinic do you go to? I go to Addnebrookes in Cambridge. They are great and trying hard to sort me out. I was on 25 mg of mtx, it worked well for first 7 months then symptoms started coming back. Can I ask you about your jaw pain. Where in your jaw is it and when do you get it. Mine originally was from top of jaw and radiated down. It only really bothered me when I ate. Now it is at the top in joint area with some radiating down and is there even if I don't eat but can be worse when I do. It seems to start in my temple to and move down. No one has ever asked where my jaw pain is just if I have any!

[jinasc]

I would advise that you look up the diagnosis and treatment of GCA on the British Society of Rheumatologists website.

There is also a pmr and gca thread on this website.

CathT - were you ever put on prednisolone when diagnosed with GCA?

[CathT in reply to jinasc]

yes i was put on 80mg, down to 5mg now

[optimist-ok]

Hello CathT, I have had PMR/GCA for just over 2yrs. Medication has varied in amounts depending on symptoms returning when on lower doses. On 15mg Methotrexate + 10mg prednisolone after a flare in August when the head, jaw & tongue pains came back. Your symptoms certainly fit with GCA so do get help as soon as poss. because of eyes. My eye sight deteriorated a bit before GCA was finally diagnosed. Seems stable at the moment.

[Jane1175]

It sounds like gca, I had pain in my right jaw and i also had polymyalgia , i started on 20mg prendisolone for polymyalgia and got down to 4mg but when they diagnosed giant cell I went up to 60mg, I'm seeing doctors at hospital and I do believe the steroids saved my sight.

[johnyenglish]

CathT and Keyes, before being diagnosed with WG I displayed many of the symptoms that you mention; fatigue, temple and jaw pain, anaemia, joint pain that would move around my body, diplopia (double vision), weight loss, malaise etc.. It took three attempts to be taken seriously at the hospital, eventually a GP friend got me into the QE in Gateshead at the point that I couldn't even sit up for more than 30 seconds. Took 6 months of cyclophosphamide to eventually get things under control and a further 18 months of pred. Take care, John.

[Hidden]

Hi John,

Thanks for posting. I have had my ANCA tested a few times and it has always been negative. Have been reading some interesting articles about WG/TAK crossover which appears to be more common than first thought ( though still very rare! )

The pain that comes on in my jaw when I chew always ends up in my nose, it becomes painful, feels a bit numb and when it is really bad it feels like the centre of my face is going to explode.

The annoying thing is the lack of definitive diagnosis. Maybe one day, will just have to keep hoping.

Regards

Keyes

[AndrewT]

Dear CathT,

Forget who said what, when and if...just get yourself back on MMF! No really, don't muck about. Can you get referred to Addenbrooke's? It is in Cambridge and Dr David Jane, one of our consultants, is based there.

Anyway please let us know how you get on, will you please?

Sorry that I can't be anymore help.

AndrewT