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I was diagnosed at age 52 (5 years ago). I`d had severe ...

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I was diagnosed at age 52 (5 years ago). I`d had severe headaches for about 3 weeks and flu like symptoms for about 8 weeks but never developed flu, and felt generally awful, and had some blurring of vision in my left eye. A blood test (esr) was very high at 123 (NORMAL is 1-10). I was seen by the eye doctors at the hospital and they started me on steroids 60mg a day. A biopsy of the artery was negative but because i had all the symptoms they still thought i had Temporal arteritis and i have been on steroids ever since ,gradually decreasing the dose or increasing temporarily as needed. I am now on 5mg prednisolone a day plus drugs for osteoporosis, Aspirin, iron tablets. I recently had a mini-stroke and have severe carotid stenosis and am due to have a Carotid Endarterectomy in the near future. I am feeling better now than I have for the past 5 years,even though I had to take early retirement from work. I also had cataract operations on both eyes. these may have been caused by the steroids. I try to walk everyday and do some exercise. Its hard when you don`t have much energy but worth it. Its important to pace yourself , and do things in short bursts when you have the energy, and not try to do it all at once.It took me quite a long time to get the hang of this,and I often ended up exhausted after only a short time.I was under the care of a rheumatologist who is experienced with this condition .hope this helps someone else with this condition.

[i:330285b5f7]This message was automatically imported from the original Patient Experience[/i:330285b5f7]

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  • Guest
    Guest

    Posted

    So sorry that you have this problem, the good thing is, you are not alone. I am sat at my PC, one eye closed, severe pain in both shoulders, neck, arms, lower back, and hips. My tongue is very sore, my jaw aches and i just feel ill, that is the besy way i describe this condition to my doctor, feeling very ill. I am on 11mg predisilone, down from 40mg, but can`t` stand this pain so i need to go back up again. I am only 5ft.5ins, and i now weigh 13.5 stone, have a 17 inch neck size, i keep wondering, will this ever get better, will i ever be able to make a cup of tea in the mornings without this pain, you have my sympathy fellow sufferer.

    Kind regards Jim.

    [i:cf5b51ac1e]This message was automatically imported from the original Patient Experience[/i:cf5b51ac1e]

  • Guest
    Guest

    Posted

    I am now mid sixties, diagnosed by a GP who listened attentively to my symptoms, quickly asked for blood tests, which then led to a couple of days in Hospital....all that was 14months ago .....initially my ESR was 140 and the diagnosis was confirmed as Temporal Arteritis.

    I started on the roller coaster of those dreaded Steroids 40mgs.During the last 12months my blood results have as low as 9, but the latest result was 32. Presently I am taking 7.5mgs daily............The side effects of the Steroids are not very pleasant to say the least and I see no end to this cycle. Insomnia, mood swings,extra weight,( Fat) a feeling of being \"spaced out\", spurts of energy, no energy........the list goes on.

    I have done lots of research to try and find a cause, or at least an inkling as to what caused this Ugly disease to manifest itself, all to no avail.

    It seems now due to the Steroids that further investigations are required. namely Renal .

    I know there is nothing else as a treatment other than steroids,but for how long? I should not complain because I know if it had not been diagnosed I could be 100 times worse off health wise.

    Is there anyone with the same disease /or has had the disease who could shed some light on the out come.

  • Guest
    Guest

    Posted

    I started having severe headaches in September, 2008 and my jaw hurt so bad I couldn't chew. so I went to my dentist to see if I had TMJ, I didn't. My Dr. ran all kinds of blood tests, MRI's EKG's, EEG,s you name it. finally he did the blood test for Temporal Arteritis and low and behold my SED rate was 102, normal range is 0-10. I was immediately put on 60 mg. of prednisone (hate that stuff) and scheduled for a temporal biopsy. the biopsy confirmed it was Temporal Arteritis. I had to quit my job that I loved so dearly. there isn't enough room here to tell all of the side effects I have from the steroids. I have gained 30 punds in 4 months, my neck, shoulders, throat, back, stomach, legs and arms have these scary looking bulges all over them, I can hardly swallow or talk most of the time. My eyes are so swollen, I look Asian, and I am not. My vivsion in my right eye is very blurry, my back hurts so much, I can hardly move, I still have the freakin headache and jaw ache, I have no feeling in 3 fingers on my left hand and my left arm is in constant pain, I am down to 20 mg. but now they think they took me down too fast because the side effects and symptoms have increased, so I am sure they will increase them again. My SED rate was back up to 30 last week and who knows what it will be tomorrow when I go in. My life is a mess, I cry a lot, I feel like I can't walk across the room and before this I was a very active 59 year old female construction manager, with 3 grown kids aand 4 1/2 grandchildren. I have missed weddings. parties, almost missed my own birthday. will this ever end????? Will I ever be able to go back to work???? I love what I do and we need the 2nd income. No one wants to hear about it by now, they are done, and so am I. I wish I had the nerve to just throw the steroids in the trash and see what happens. I am now seeing a rheumatologist, a neurologist, an opthamalogist and a dentist. I have never taken medication in my life and now that seems to be all I do. I am so fed up with it, and from the sounds of things I have a long way to go since I am only 3 months into the treatment. All of the Dr.'s keep telling me they have never seen anyone have such dramatic reactions to the steroids. You would think that if they can transplant a heart they could find some better relief for this monster

    thanks for listening it feels good to get it all out

  • Guest
    Guest

    Posted

    nanniesue

    I am sorry you are having such a rough time with GCA.

    I am now in beginning my third year of living with GCA.

    I started on 60mg then it was reduced by 5 mgs per week. In November 2007, I was down to 20mg and from then on it was reduced as follows monthly 15mg, 12.5mg, 10mg, then drop by 1mg per month till 5mg reached, then a three monthly drop of 1 mg each month.

    I have been as low as 6mg, but two flare-ups,meant I had to go back to 40mg and then a quicker drop. The CRP rate is better for GCA patients and should be read in conjunction with the ESR rate.

    But from your symptons as you describe them, it sounds to me as though you have PMR as well.

    GCA symptoms are normally in the head alone. Have you checked this with your Rheumatologist?.

    If you google ' pmrfighters' or Tayside PMR-GCA - we can send you more information and perhaps direct you to a support group.

    Meantime hang on in there - the medics will do their very best and although steroids come with side effects - they are what we have for a no known cause or cure and with GCA you run the risk of partial or total loss of vision - so do not throw the steroids away.

    mrs K

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