Improving picture with GCA

I was diagnosed with GCA in November, 2010 having experienced chest pain, fatigue, neck and jaw pain. My ESR was 115 and CRP elevated. After angiogram and scans, which were normal I was commenced on 60 mg. Prednisolone. I never felt I looked ill, others would disagree, but generally I felt I looked ok. I had no improvement for at least two weeks, but then when blood results improved I was put on a gradual reduction in Prednisolone.

I felt generally weak in my limbs, but no signs of PMR. I continued to live a normal life despite at times feeling very fatigued, even when sitting.

I had Osler's nodules on several of my fingers with vascular splinters in my nails. I thought the nodules were warts and filed them and treated them with wart treatment until I was informed that they are related to inflammatory conditions particularly vasculitis.

As my Prednisolone was reduced I asked my Consultant Rhematologist if I could be put on steroid sparing drugs. He agreed and prescribed Azathiaprine, but within two weeks I had to stop as it was causing liver damage. I continued on the Prednisolone at 7mgs. daily. I was then prescribed Methotrexate 15mgs. weekly but continued on the same dose Prednisolone gradually reducing this by 1mg. per month.

When I got down to 3mgs. Prednisolone per day and 15mgs. Methotrexate 15mgs. weekly I began to feel less weak and more my normal self. This was two years after diagnosis.

I am now on 1mg Prednisolone daily and 15mgs. Methotrexate 15mgs. weekly. My blood results are normal and are monitored monthly. I feel much improved so there is light at the end of the tunnel.

Good wishes to all.

Tomasina

5 Replies

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  • Dear Tomasina

    Thanks so much for sharing the good news of your improvement with GCA. It's really important for people to know that light is there, when they are not so far down the tunnel!

    All best wishes for a complete recovery

    Kate

  • Hi there.

    I am so pleased that methotrexate is working for you [ It didn't for me ] and that you are feeling better. Once you are off the steroids, will you be weaned off the Methotrexate over time,?

    Pat

  • Hi,

    Sorry to hear Methotrexate didn't work for you. Have you tried Azathiaprine? How long is it since diagnosis?

    I certainly hope they will reduce my Methotrexate and see the Consultant in two weeks' time. Fingers crossed.

    Tomasina

  • Hello tomasina

    I was given a leaflet on Azathiaprine when I last saw my Rheumatologist, however he knew I was reluctanat not to try another medication as I had such a bad time with the Methotrexate, but said for me to read it anyway. I dont think I will try it. I next see him in May.

    I was diagnosed 14 years ago at the age of 54, It was a locum who diagnosed me, [ my own Dr. was on holiday at the tme, she was previously treating me for headaches ] and he sent me to hospital for tests. I'm not blaming my Dr. as they can't all know everything.

    I have never been off of steroids, but have managed in the past to get as low as 1mg. which took me a year to achieve, but then all went pear shaped.

    I am just getting over a kidney infection, and now I have a chest infection, which has caused a flare of GCA, so I have had to up my steroid dose yet again.

    I saw my GP this morning who put me on antibiotics for the chest infection, I also have some blood in the urine, so looks like the kidney infection has come back.

    Pat

  • Hopefully the antibiotics for the chest infection will also work on the kidney infection. I do hope you improve soon.

    Tomasina

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