anyone under 50 with GCA

Hi, I have atypical Polymyalgia have had the symptoms since OCT 2011, but did not start steroids till Dec 2012 due to Rheumy undertaking many tests as she felt I was too young to have Polymyalgia, despite having all the classic symptoms. My inflammatory markers have always been near normal.

At the end of March this year started getting burning pain in temples, tingling tongue and jaw cramping, whilst waiting to see Rheumy my GP and A+E increased Pred to 30mgs. This helped but did not remove the symptoms. When I saw Rheumy in May she insisted it could not be GCA and instructed me to reduce back down, and ordered a CT of head. When I saw her in July I was on 10mgs but the temple pain, tongue tingling and jaw cramping were continuing, she said CT was fine and asked me to continue to reduce. I am now at 8mgs and due to see her tomorrow. However since reaching 8.5mgs I have started getting tinnitus in my left ear, which is the sound of my pulse and it occurs every night keeping me awake, my tongue has also started twitching and making a noise in the night. The other symptom I have had since this all started is excessive sweating and exhaustion. I had put sweating down to hormones, I am 48, but my hair can be soaked up to 5 times a day. I seem to be developing more and more symptoms of GCA, but Rheumy is adamant Im too young, GPs agree it is unusual. Im struggling to cope day to day as I work and can lose 2 nights sleep a week, any suggestions on how I should approach Rheumy tomorrow?

14 Replies

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  • Hello Runrig

    I am 67, not under 50, but feel so strongly about this I thought I'd reply anyway.

    I have had RA for 4 years, and GCA for 15 months, with all the symptoms you mention. When I asked my GP about the treatment my then consultant was giving me for GCA, she advised me to change consultant. It took a while, but I am now under a different consultant and am making progress. Have you thought of doing the same?

    All the best

    Venezia1

  • How frustrating for you Runrig. Firstly, although not common at your age, you are definitely not too young to have GCA - even younger people have been diagnosed. Secondly, if you haven't already had them, it might be worth getting tested for a hormone imbalance or thyroid problems to see if they reveal a cause for your symptoms. It might be an idea to seek a second opinion from another rheumatologist as Venezia has done, and some local pharmacists can recommend a good one from their conversations with customers - that's how I found my wonderful rheumy. I hope the appointment goes well tomorrow.

  • I feel that your current Rheumatologist is a bit behind the times and echo the others in saying that a second opinion should be requested.

    I was diagnosed with atypical PMR some 12 years ago now and although I wasn't in my early 50's at diagnosis (I had a very gradual onset) it's now believed that the onset was at that time. I have never had raised inflammation markers with either PMR or GCA, and I know I am not the only one who has presented in that way.

    Not sure if you have had a Vit D test, but a deficiency in Vit D can cause muscle pain, too. Might be worth asking about that.

  • Thanks polkadotcom, I have been taking Adcal D3 so assume my bit D levels would be ok, but will check with her. My excessive sweating started in March along with my temple, tongue and jaw pain. My GP says sweating is probably hormonal so has given me HRT to try. I spoke to my GP about 2nd opinion he says unfortunately because it is unusual under 50 most medics would say the same, and says I could have a long wait. He suggests I ride it out with current Consultant who took a while to come round to Atypical PMR, and feels eventually she will come round. Thanks Runrig x

  • I hesitate to get into this, but: (1) Your age does NOT exclude PMR or GCA. (2) "temple, tongue and jaw pain" suggests GCA. (3) Iinflammation markers, ESR and CPI, need careful interpretation. "Normal" is meaningless. What are the numbers? Most doctors do not understand this. (4) GCA can do a lot of damage if not treated and the only treatment is prednisone (prenisolone in UK) at sufficient level. New GCA is treated with 60 mg for a few weeks and stops the symptoms in a day or two. Learn all you can and teach your doctors if necessary. Perhaps you do not have GCA and I am talking nonsense, however you may be helped by reading my website:

  • Taking Adcal D3 doesn't necessarily mean your Vit D levels will be good, mine weren't and I take the same. I found excessive sweating came along with the PMR and they appeared while I was already on HRT and I remained so for some 10 years but nothing seemed to tackle the sweating problem which I still have to some extent today. Of course it is possible that the HRT will do the trick and I hope that happens for you.

    I am worried that your medics are playing around with your meds and appear to be dismissing the possibility of sight loss. I wouldn't wish that on my worst enemy!

  • Hi runrig

    In my opinion, you sound menopausal and maybe a good dose of HRT will help if you can take it (no contra indications). This will alleviate some of the nasty symptoms you are getting now.

    I don't think it's a coincidence that women often develope auto immune diseases during and after the menopause. Oestrogen and progesterone are powerful steroids and when our ovaries start to fail it often throws our other glands out of kilter. The adrenals for instance.

    People do develope PMR/GCA in their forties and doctors should treat the symptoms. Have they come up with any other reason for yours?

    Perhaps you could ask for a second opinion from another specialist, ASAP!

    Pats.

  • Runrig

    First of all not being diagnosed with PMR can and does lead to GCA. Your Rheumatologist needs changing like yesterday. At least that low dose of steroids is holding your sight. A CT Scan, why not a temporal biopsy or the use of a new machine which is being tested in some hospitals under the Tabul Study. I know a temporal biopsy does not always show, but you have classic symptoms. I don't want to worry you but there have been two cases where because they did not fit the age profile they both lost their sight. Advise your Rheumatologist that most statistics used are Bell Curves and they take the middle ones. People can fall on to the lower parts of the Bell Curve. Medical Symptoms must prevail in both PMR and GCA. Google the British Society of Rheumatolgosts Guidelines on both PMR & GCA diagnosis and Treatement. Reduce, I don't think so.

    Send me a PM, where do you live?

  • Hi Folks, The CT scan was organised because I had been on Prednisolone for 5 months and it would not show anything after having steroids so long. The CT should have been a contrast CT which shows blood vessels, but radiologist declined saying they only use contrast for CT head when suspecting tumours. My inflammatory markers are normal as usual.

    Todays visit did not go well, when I try to discuss the symptoms I have from the neck up, it is like talking to a brick wall. When I told her I was losing sleep 2 nights a week, due to tinnutis with pulse noise or tongue twitching and clicking, there was no response. When I asked if I could go up slightly on steroids to get rid of the noise and sleep I was told NO!. These symptoms have only occurred since dropping below 10mgs, I am currently on 8mgs having struggled just to reduce to please her. Have made an appointment for end of August to see GP who initially referred me and discuss seeing another Rheumatologist.

    I would even be willing to travel to Southend to see the Consultant who specialises in PMR/GCA, I appreciate I am an unusual case, and would accept its not GCA if only they would investigate what is causing all these symptoms. Very frustrated and tearful tonight.

  • Hi, sad to hear your problems. I have been on steroids for 15 months, and have awful side effects. Weight gain 2 1/2 stone. Breathlessness, Sleep problems. My Rhmy wants me to stablise on 10 mg. That was in June, my next appointment is October. In the mean time I am suffering. I am going to try and reduce the steroids myself, using the gradual method as on the web. Will see what happens. Feeling fat, sad, fed-up / a bag of nerves. Need some sleep, and the sweats arte really a problem. At 77 I think this is not hourmonial

    regards June

  • Just thought I would tell you that I was diagnosed with GCA nearly 5years ago and I turned 50 in march this year. I was put on 40mgs pred and all the rest that goes with it and am now down to 5mg after many flares. My rheumy wants to keep me on this maintenance dose indefinately, unless I have a flare of course.

    Two years ago a new consultant dissagreed with the first consultant and my GP and is trying to get me to have a biopsy as he says that I am too young! But will keep me on medication as it may be lupus as well as GCA as he is not sure! I am still on pred and am due to see him in Sept.

    Meanwhile I have had many a stay in hospital, once I had septic pneumonia and nearly died, as a result of the high dose steroid decreasing my immune system, so I am making sure that all of my suffering from steroids and all that goes with it is not in vain and that I get a correct diagnosis.

    I have been on methotrexate and aziathorprine but my liver didnt tolerate these hence the maintenance dose. I am on anti depressants for steroid induced depression. I have had sight problems and can no longer drive and the ophthalmologist and rheumatologist are arguing over the cause.

    I think that unless you are text book the consultants are wary. I say this as my ophthalmologist has told me that he doesnt like things out of the norm which doesnt help if you are not text book.

    Please do not lose heart and keep trying to get answers as there will be someone, be it GP or consultant, that will suddenly click.

    Take care

    Debs

  • Hi dibs Im 50 got large vessel vasculitis and prob gca consultants diag.I had a temporal biopsy while in hospital,getting iv pred to save eyesight.It was negative ,still not conclusive tho. Its not a straight forward illness this ive had consultants tell me im an very unusual case,ive pppolyglandular autoimmune failure,type 1 diabetic,addisons disease,vitiligo,esophagus prob accalasia,needed surgery.Now this prob.Its like detective work to them.The steroids aggravate my diabetes and there keen to get my dose down lst time went from 70 to 20 in 6 weeks got bad double vis 20 times a day.On cyclophosphamide and pred in fusions now.2nd one tomorrow.They have mentioned aza for long term maintanancde instead of steroids,hope so coz on 40 at mo there awful things,trade off I suppose.Dont get me wrong im been well monitored, I think its a illness which has top people baffled which gives us mere mortals less chance of understanding it.The nhs is a great service which we all may need .As you say don't lose heart.More awareness of this illness is needed I think.Keep in touch on here im interested to hear how your doing coz we are same age.All the best......

  • I have just been given steroids for GCA and my symptoms are the same as yours but I have also within in the last week lost peripheral vision in my right eye and hearing in my right ear, so make sure you tell them that you don't have to be over 50 or 60 to have this. (I am 49) I am sure my doctors thought everything was down to blood pressure and hormones, I also have anaemia, and headaches were just diagnosed as migraine even though I said they were different, I even went to the hospital walk in emergency room about 4 months ago with terrible head pressure, with severe pain in temples and forehead but was told it was a combination of blood pressure and migraine and should change my BP medication.

    Good luck hope they take notice and you get the appropriate medication/treatment.

  • Hi, that was 2 yr ago I posted this. I am 49 and little has changed. My GP referred me to an expert in GCA in Leeds, who has said probable GCA but wants imaging studies or further biopsy as evidence. My local Rheumy is refusing to do any of the tests because he says she's not convinced. He has referred me to the legendary Prof who writes the guidelines on GCA. At present on 8mhs Pred. I came off Azathioprine for 2 weeks and all the head symptoms intensified, I am now back on it but it has only dampened pains a little, back of head feels like a migraine and intensifies with any activity. Since this happened I have been sick (early January), and I don't see the Prof till 10/3. Thank you for your post, unfortunately I have a stubborn Rheumy, this is my 2nd Rheumy as first was the same dismissive of GCA symptoms. I have some photographs which show discoloured patches on tongue and blood clots, also red streaks on temples when they burn more fiercely. Leeds say definately vasculitis and probable GCA. Thanks again for your post. Best wishes, Runrig x

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