? wrong diagnosis

[lesley2015]

Hi All

So I was diagnosed (by a very experienced, but not friendly consultant) in June 2015 with PMR/GCA, having been ill for several years. 48 hours on 40mgs of preds and felt like a new person.

So like others had a journey to get to this point - so will try and be brief but would appreciate your thoughts on the following:

I saw a private consultant last Autumn who agreed with both diagnoses made, I then managed to get on her NHS list.

She then seemed to start to hesitate on the above diagnosis, suggesting seronegative inflammatory arthritis then following appointment adding Fibro to the mix. She put me on various drugs, which I couldn't tolerate, (Prev on Methotrexate) Azathioprine, Leflunomide, Salazaprine & Amitripyline. She also suggested my pains were caused by quality sleep depravation, hence the Amitriptyline. I must stay on 7mgs of preds she said and not reduce because of the inflammation.

So today, (4 months later) she seemed very distracted. Has decided that maybe I have none of the above. Despite temple pain and face pain in January that responded to preds, and has now settled again, and having raised ESR etc - she asked how I knew it was GCA, I said was the same pain, tight band accross head and couldnt lay on pillow my temple was so sore and jaw and face painful. She was unconvinnced because I couldnt say if my jaw hurt more whenI chewed. Now I have to reduce preds and eventually come off. Have to have scans -thinks pain in shoulders/neck and ankles could be tendonitis ............. didnt comment on my fatigue, sore hips, back, fingers, stiffness in the morning and I could go on. Just ignore the headache if it doesnt hurt more when I chew ......?!

Oh but take Deloxotine, helps with chronic pain and fibro ..... is it addictive I ask? well yes a bit! (I am not taking anymore drugs before I find out what is wrong with me!)

You may have had it she said but she is not convinced I do now. I will see my GP when the report comes. Does anyone know, do I need to be under a consultant? My GP is reasonable and consistent!

Feeling pretty fed up.

Any thoughts please? Many thanks

[Hidden]

Lesley I am having a similar problem with my new consultant! Having had problems reducing from 30mg last year with GCA/PMR diagnosed Nov 2016 I am now on 22.5mg. She says she doesn't think I have GCA or even PMR so MUST get off the steroids. I too develop a very tight head, sore temples, sore behind ears and painful top of head. I take my pred at 9pm so I can function in the morning. They last until 4pm and symptons return. I see her again on Monday so should be interesting as would like to know what it is then. This will be my second meeting with her. Saw her last time for about 15mins as she was running late. Hopefully we will both get some answers!

[lesley2015 in reply to Hidden]

best wishes then rlake, its soooo frustrating!

[Hidden in reply to lesley2015]

Thank you.

[Hidden]

Some of these consultants are shockers . You may as well report to a good old fashioned witch doctor! Or write a list of possible illnesses,put a blindfold on & select one using a pin! I am sorry this is happening for you. I feel angry on your behalf. It's tough enough dealing with the illness without this added stress. ATB

[Woodiesmum]

Ask for Doppler scan for the GCA it’s just the same as a baby scan but on your head . Then you know for sure . It annoys me the way they mess you around and it could be sorted in one scan x.

[lesley2015 in reply to Woodiesmum]

Not sure if thst would be helpful if I have been on steroids for almost 3 years?

[Woodiesmum in reply to lesley2015]

If it’s a low dose it might be ok x I have been on over 30mg up to 60mg for nearly two years x down to 20mg and once down to 10 mg then I can have my scan x

[Canygirl61 in reply to Woodiesmum]

Not always accurate, and have false negative results

[Woodiesmum in reply to Canygirl61]

It’s usually the biopsy that are false negative as mine was x I got Doppler scan and they physically saw halos

[jinasc]

Where do you live, we might know a Consultant who deals with GCA. They all are generalists, but all have particular specialisms they are fully up to speed with. You need to find one of those who are interested and deal with GCA.

[lesley2015 in reply to jinasc]

Hi Jinasc - I am in East Sussex?

[PMRpro Ambassador]

You don't HAVE to be under a consultant - many PMR patients never see a rheumy but are diagnosed and managed by their GP. Something to discuss with your GPs.

I would want more evidence from the consultant as to why she has changed her mind - it is something that seems to happen a lot. Not everyone with GCA has jaw claudication - like all the other symptoms it appears in some but not others. There is literature that quotes the various incidences of a symptom - and I cannot recollet seeing any that appeared in 100% of patients.

Do I gather you had raised inflammatory markers? That makes fibro less likely, certainly at the start, because no dose of pred will sort out fibro (I don't care what any doctor says, fibro does NOT respond to pred.

You've been privately before - is that still an option? And where are you? How far would you travel?

[lesley2015 in reply to PMRpro]

HI PMRpro

Yes inflammatory markers were high and esr is 28-31 currently (my normal was 10 apparently), so thats why at one point she decided it must be inflammatory arthritis. When I have felt awful, temples sore etc, it has always responded to preds.

If I have temple pain she said I must have a blood test to confirm this, but my bloods are not that remarkable and have never been - my GP does not rely on them.

This is the private consultant I saw, I then managed to get on her NHS list, so I am very disappointed that now she seems to change her mind each time I see her.

I am based in East Sussex - I would travel 30 -40 miles I guess ...

[PMRpro Ambassador in reply to lesley2015]

If you are on pred then the inflammatory markers may not rise as you might expect them to. And you are right to suspect that the ultrasound might be not show much after all that time on pred. You can have GCA without it affecting the temporal artery or the blood supply to the jaw which would give rise to claudication when chewing. There is a great deal of overlap - but there are a lot of doctors who appear to be blissfully unaware of such subtleties.

academic.oup.com/rheumatolo...

[lesley2015 in reply to PMRpro]

Its also so difficult to challenge them - they almost make me feel like a hypochondriac! I am really waiting now to see my GP I am really not sure how to proceed -

Thank you all for your replies ...

[PMRpro Ambassador in reply to lesley2015]

If Chertsey is an option you will be listened to carefully and heard - and all explained you need explained. Guaranteed.

[lesley2015 in reply to PMRpro]

could you give be details please, if I have no joy with GP that will be the route I have to take I think, thank you

[PMRpro Ambassador in reply to lesley2015]

drrahughesrheumatologyltd.com/

ashfordstpeters.nhs.uk/rheu...

Any other details you need - Celtic can help.

[lesley2015 in reply to PMRpro]

Thank you very much 👍

[jinasc in reply to PMRpro]

Thanks Mate, been off line................back today.