my name is Monika, I'm German and live in BC, Canada. I'm 67 years old and on Prednisone for 29 days with now 40 mg tapering down.
First I would like to express how much this community already helped me to educate myself about GCA/ PMR.
Your world is new to me and I'm actually not really sure ehat my story is about.
In hindsight it probably all started with a cough, dry cough. This cough is with me for more than two years now. I suffered from exercise induced cough sometimes when I workout really hard, but that was different. And now five weeks ago after snowshoeing for two hours we came home and I felt unwell. The nausea stayed with me for 8 days and I developed temple headache and headache on my left side. Not very strong, nothing I could not endure, but I never have headaches! And nithing else.
Did see my GL and she diagnosed GCS immediately. Bloodwork CRP was 59. Prednisone 50 mg. Now I entered your world. I don't even have words to describe how I felt. Never ever did I have such an experience before. I would summerize it as being out of this world now, not here and alien to my own body sensations.
Insomnia is bothering me the most. Biopsy was negative, ESR was negative. I did see a wonderful Rheumy and he suggested to taper down and gave me some advice to take addtional precautions for bone loss etc.
I'm not even sure what causes the inflammation in my body. I can't be shre it is GCA. I did have hip pain, I did have jaw pain, all gone. Cough is gone.
For me right now it would be so very helpful to get diagnosed with what is really behind it.
I needed to 'talk' about this.
To all you wonderful people thank you for listening and make the best of your day today. I'm going to bake a chocolate cake for my husband today. It's his birthday.
Best wishes, Monika
Written by
Akino
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Even though your biopsy and ESR were negative that's doesn't necessarily mean you don't have GCA, your symptoms are very familiar to many of us.
Lots of us are never sure what causes the underlying conditions of GCA and PMR, but having them means that your immune system is not working properly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessels and means that the blood and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff muscles and fatigue.
The only thing that control that inflammation is Pred, it does not cure the problem, there is no cure, but it keeps it under control. Usually it goes into remission, but that can take a number of years, around 4 seems to be the average. The initial high dose takes control of things, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works.
You also have to learn to rest, your body cannot do as much as it used to before GCA, and sometimes that's not easy.
Try and read as much as you can about GCA, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.
There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA PMR.
There are a number of contributors on here who also live in Canada, so maybe you could chat to them. If you put out another post with a heading asking for Canadian contacts I'm sure you get a good response.
Your insomnia should improve as you reduce the Pred.
Please come along with any more questions, or as you say, just to talk. There's a lot to learn, but there's lots of people on here willing to help.
Thank you so much for your reply. I don't feel so alone when I'm in touch with all of you. It's comforting. I'll do what you suggested and I'll stay in tiuch with this community. Thanks again and have a lovely day.
Where in BC do you live? There are people in the Vancouver area I know.
Hip pain, jaw pain, temple pain, cough - all gone with pred? Sounds fairly typical!
But you have your diagnosis I think, GCA - it is an autoimmune vasculitis that causes the symptoms. And not even the doctors know much more than that I'm afraid.
Hi Monika. As you taper down, don't go too fast and if you ever notice any problems with your vision, please have it checked right away, go to hospital emergency if necessary. Hope things go well for you.
thank you for your encouragment. I have blurry vision once in a while for a few hours and then it goes back to normal. I had my eyes checked on October, everything normal so far. BUT I'll pay attention to my eyesight for sure because I need to see and drive a car. My husband got Parkinsons and he suffers unfortunately many symptoms. One is Dyskenisia what makes his body move in unexpected and not predictable ways. So, there will be a day when he can't sit behind the steering wheel anymore and I must. That us my deepest fear.
I'm so glad I found this forum and can be part of it. Thank you.
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