Can GCA keep 'coming & going' without medical treatment?

[foolsandhorses]

Hello to you all . I'm a newbie on the forum looking for Members' opinions or perhaps similar experiences of the painful and ( to me) quite strange symptoms I've been experiencing recently. I apologise in advance for a lengthy post but hope that providing some background leading to these more recent symptoms might be worthwhile?

Im a 57 year old female and i do have osteoarthritis . The pain and stiffness related to this has always eased over the summer months ,whereas this year at times it seems far worse regardless of weather etc. . Also, I had 2/3rds of my thyroid removed several years back but as my TSH remains within normal range my GP Im not on any thyroid meds.

Over the past year or so at times I have felt generally very unwell for no apparent reason. I have episodes of feeling greatly fatigued, a significant increase in joint pain in upper back/ neck area , it also takes far longer to shake off joint stiffness when I awake.

Around 6 months ago a flattish swelling appeared above my cleavage but apart from feeling slightly tender at times didn't bother me. A few months later a new swelling appeared above thyroid (Adams Apple area) which is the first time this has occurred since my thyroid op. An ultra sound scan appointment was booked for several weeks later by which time both swellings had virtually disappeared : NHS Technician: "swellings, what swellings?" I felt like a right time waster! But the scan result showed single nodule on remaining portion of thyroid and adjacent Lymph node was swollen, but as nodule appears ' clean' no follow is deemed necessary.

The newer symtoms..........

Around 8 weeks ago I suffered what I describe as the very worst headache of my life - but it was only on the left side , particularly around my jaw , ear, temple and front of my scalp. The pain progressively increased over a few days and over a weekend became agonising but was gone by Monday evening. Alongside this the swellings described above became noticeably larger and the skin over them reddened and felt warmer and the left side of my neck also appeared red - as the pain diminished so did the swellings and redness and were virtually gone by the time I got to see my GP on the Tuesday.

My GP mentioned GCA as a result of my description of headache etc and took blood tests for enthrocytes and ( I think it was something like ??) C reactive as markers of inflammation but these come back clear. A blood test for rheumatoid arthiritis a few months ago was also clear.

Over the last 8 weeks I get similar episodes every 6 -10 days. They last between 2 -4 days and after the pain has subsided I feel 'drained' for a day or two , then im ok again. The last two bouts have not been quite so severe ( but still enough that two co-codamols achieve little) . The swellings I mentioned are linked to these episodes and increase in size and diminish alongside the headaches.

Frustratingly, I have never been able to get an appointment with my GP during the peak of such episodes so she has only my description to go off. I am booked in to see my GP this Thursday although I feel like I'm not being taken seriously and getting nowhere.

I realise GCA is potentially a very serious condition ; likewise steroid treatment for GCA to be avoided unless medically necessary. I would like to ask members of the forum if the symptoms of GCA can 'come and go' as related above and given blood tests don't show markers of inflammation is GCA a likely/unlikely cause of the symptoms I have described?

Thanks for bearing with the length of this post and please don't feel the need to be diplomatic in any replies if you feel what I describe bears little relation to typical cases of GCA.

Thank You

Lesley

[DorsetLady PMRGCAuk volunteer]

Hi Lesley,

Don't worry about the length of post, sometimes it's difficult to explain in a few words, and very often people try to do that - and then we don't get the full picture and have to keep asking different things.

Lots of your symptoms do sound like GCA - fatigue, shoulders & neck stiffness and pain in particularly early morning, and the problems around your head etc.

Cannot explain the swelling though - others may have come across them.

Not everybody has raised ESR or CRP markers with GCA - although the doctors do place a lot of credence on them, so sometimes they dismiss GCA too quickly.

Most people also find their symptoms increase in severity over a period of time, although I guess some days are better than others, although mine never disappeared completely. I was 18 months before diagnosis, others even longer, so it's not unusual for it to take a long time.

Many of us have OA as well, but I think that's more likely to be an age thing, than necessarily related to GCA even though it has inflammatory connections. Your op on your thyroid may have a bearing, stress of any sort can trigger GCA, but don't think it's normally associated., and probably too long ago. Although having said that, I have a family history of over active thyroid and had radium treatment in my teens - but nobody's ever discussed a connection.

Yes GCA is a serious condition, if not life threatening, certainly life changing - unfortunately I lost sight in right eye before it was diagnosed, and only large doses of Pred saved the other. So it's not an illness to be taken lightly - by anyone, and yes, some the side effects of Pred can also be pretty nasty, but unfortunately there is no other drug that works on it.

I can understand how frustrating it is when you go to the GP and everything appears okay, but I think you have to try and convince him/her that you have serious concerns about it being GCA. Is there anyone you could take who can confirm just how bad you are when you have an attack. I know you shouldn't have to, but sometimes another person can get over to the doctor just how bad you are.

Do hope you get some satisfaction in Thursday.

[foolsandhorses in reply to DorsetLady]

Thanks Dorset Lady - Until most recent headaches etc . Id never even heard of GCA or PMR and felt it was likely I had some kind of auto immune thyroid issues. Obviously, I'd be quite happy to be barking up the wrong tree with the GCA thing , I am uncertain

It's just so very frustrating that my GP seems to think there is nothing much wrong with me other than the usual aches , pains and tiredness that comes with getting older and appears to have no interest in considering or investigating other potential causes. I'm not overweight, reasonably active ( far less so recently) and dont often see my GP until more recently. Ive never bothered going with every little ache or cold etc and just accept my arthiritis for what it is and do my best to 'get on with it'.

If my GP offers me anti-depressants or HRT as if it they are some magic 'cure all' one more time!! ...... I will politely decline ( whilst inwardly saying some not very nice things)

[HeronNS]

Not to take away from the GCA discussion here, but I was interested in your description of the swellings which came and went away, although leaving traces behind. Has further investigation of this been done? It could be a sign of another inflammatory disorder. I, for example, have a long ago diagnosis of sarcoidosis (non-symptomatic as far as I knew except for an enlarged lymph node which was removed and provided a definitive diagnosis). I've only recently come to learn that this disease may still be impacting me in an insidious way (high Vitamin D level, low iron, bone thinning). Diagnosis was when I was in my early to mid thirties. So little is known about any of these inflammatory disorders but it seems if we have one the likelihood of also having another is pretty common. I learned by accident that I have what are called granulomas, undoubtedly caused by sarcoidosis, which showed up on an x-ray of my spine for another reason and were given "incidental notice" in the report by the radiologist. Sorry for this long account, didn't mean to hijack your post, just trying to point out that the swelling you experienced may not be entirely irrelevant.

[PMRpro Ambassador]

About 1 in 5 patients don't develop raised ESR/CRP - particularly if they have an "atypical" presentation. And yes, it is atypical for GCA - bit it doesn't mean it isn't something serious that needs to be investigated. There other things that could cause at least some of those symptoms - that warrant expert cnsideration.

If it were me I wouldn't waste my effort waiting for your GP to cough up with an appointment if he can't offer you an EMERGENCY one - go to A&E while the symptoms are present. That is what they are for. Take photos when it is at its worst if you haven't got to A&E by then (just in case it disappears) and take someone with you who will politely ensure you are taken seriously.

If you have been treated so far only by a GP they seem a bit lacking in background for rheumatology - there is no test for RA that would be "clear". Being negative for rheumatoid factor does not mean you don't have RA - it means you are negative for rheumatoid factor. There are forms of seronegative inflammatory arthritis. That isn't the same thing.

[jinasc]

Re-read PMR pro and do exactly what she has recommended.

GCA if left untreated you run the risk of partial or total loss of eyesight.