My story

Hello all, I have been following the blogs for a month now after I signed up in the middle of the night as not be able to sleep as usual and they are very interesting, thank you.

I was diagnosed with GCA 4 years ago at the age of 45 and put on 40mg of pred which help my symptoms within around day 3. Thought I would be ok after that but that was the start of my nightmare.  I kept getting flare ups and stayed on high dose pred, methotrexate & azioprothine (not sure of spelling) and even low dose chemotherapy tablets for two years which crushed my immune system and I have been close to dying with septic pneumonia ( they called my children in to say goodbye to me)! I have septicaemia three times in all now, the last only two months ago. 

My doctor thinks I have PMR as some days I can bearly walk or get out of bed but the rheumatologist has said its fibromyalgia.  The pain I have now is managed with bru trans patches of 20mg and daily tramadol or cocodomol as a top up. I have also been back and forth the opthamologist as my eyesight has deteriorated to such an extent as I have now been stopped driving. I now have a taxi to and from work but have lost my independence for everything else although my daughter has been very good taking me shopping. 

The rheumatologist now says he's not sure if it is GCA as I didn't have a biopsy, 4 yrs down the road.  I am down to 5mg of pred now, the lowest I have been & the rheumy says he intends to keep me this for life, unless I have another flare.

I have gone back to work 3 days a week, mon, weds & fri with a day off in between as I am shattered doing straight days, need a stick to walk as I now have osteoporosis in the spine and feet, and steroid dependancy depression. 

Now I have written all this I am sorry to have gone on but it's good to share as I have been reading, so forgive me. My motto is ' it could be worse' .

5 Replies

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  • Dear Dibs,

    "If only" are supposed to be the saddest words in the english language. I do not have GCA, but many of our members do, and I'm sure they would say, If only the doctors who were treating you in the beginning had given you a higher dose of pred, then perhaps you might not be in the state of health you are in now. Who knows?

    All I can see is that you are on such a lot of powerful drugs, is it any wonder you are getting these awful side effects? But then your illness does sound rather complicated. Difficult for you to endure and for your doctors to treat.

    Other replies will be on their way Dibs, just wait!

    Pats

  • I am so sorry for what you have gone through. I think most of us with PMR are scared to death of getting GCA.

    Just wondering if you have had an MRI maybe for MS.

    I am the same age as you and have been going to the gP for a few years with all my aches and pains and was diagnosed with PMR 2 months ago. A few months previous I asked if I had Fibro and was told to go look up CFS. I fit the bill for both but got burning legs so Fibro fit better. On being diagnosed with type 2 diabetes in March I asked again what was the matter with me (a different doc). He obviously looked at the bigger picture of my ailments and told me he thought I had PMR theough at that time he didn't want to treat me cos of the diabetes. Ended up on pred at the end of June as I just could not function properly and as I have young children who I home educate being in pain and unable to walk around was not an option.. At the moment I am down to 20mg pred after starting on that and going up to 30mg. I am also on everything else that goes with it to prevent osteoporosis and stomach ulcers etc.

    As Pats has said this support group is great and it maybe would have helped you 4 yrs ago if it was around.

    My motto is "keep smiling" because if you don't you will cry. Given what you have gone through so far I am sure you have cried a lot. But now you have found this group and hopefully others will help you.

    And don't apologise for going on, we are here to listen and help, look at my blogs you can't shut me up lol.

    take care

    Sue

  • Thank you both so much for your lovely comments. My rheumy said that he would have no problem diagnosing both PMRGCA if it wasn't for my age, as everything fits except that! My doctor however disagree's and is treating me for these, even the rheumy won't take me off pred in case it is, and that's what causes me grief, the not knowing, is it or isn't it but being treated for it all the same.

    That said I've lost both parents in the last six years and all the children have left home so I've not been myself anyway, although I have a beautiful granddaughter with a grandson on the way shortly so can't complain. The only problem is I not able to lift my granddaughter anymore or have her overnight as I'm shattered so quickly, luckily she's now four & can help nannie, ha ha.

    I'm on all the usual meds to go with pred & the doctor has just increased my omeprazole as I've just started having swallowing problems. And I'm on folic acid as I'm anaemic. In fact last appointment as she was chasing up an outpatient appt for a fluorescent angiogram for my eyes, I asked her to book me one for the vets and we both had a laugh.

    I must admit I do more laughing than crying when in public, but at private times I just hurt, like us all I guess.

    Thank you again for taking the trouble to reply as Im new to this. Have a good day!

  • LOL about the vets, I said the same thing when first put on pred to see if it worked, it did hence diagnosis of PMR. I asked the doc if I would be better off going to Cockburns (our local vet) he laughed and asked what it was then he had a good laugh.

    Keep on smiling, we are here for you :)

  • Dear Sue and Dibs, Brave ones.Nil desperandum.!!!!! Never give up.Things will improve,you are both at a critical period in your lives,as are many people at specific ages and circumstances.Nothing lasts for ever,neither the good nor the bad .Keep the faith.Hugs to you and all sufferers. xxx Aged Asrologer.!!!!! Yesterday was rubbish ......today better.

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