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.
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Posted
Kind regards Jim.
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Guest
Posted
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
Posted
thanks for listening it feels good to get it all out
Guest
Posted
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