GCA New Diagnosis

[TimTooYoung]

I am disappointed, I have been diagnosed with PMR since the beginning of November, having been prescribed Predisolone 15mg the symptoms disappeared within 24 hours. I have been reducing slowly since then. Each time I reduced the dose my symptoms returned not quite so severely and cleared after 4 to 5 days later. I have read all about GCA. I was hoping never to suffer from that but this was admitted to hospital with GCA. I was taking 10mg of Pred but in Hospital this was raised to 60 mgs intreveniously. My biggest concern besides the pain was damage to my sight, I was experiencing blurred vision. I have never liked taking pills but now I'm going to rattle with all these Pred tablets and all the other pills to stop side effects. The best post I have read is skinny jonny coming off Pred, I look forward to that day and hope it's not too far away.

[olive2709]

It's a long road I acquired this illness last September out of the blue .Like you my sight I was the most important thing , let your body do the talking no reduction of more then 10% a month be good to yourself.skinny jonny did not have GCA our road is very long iam expecting this to take 24-30months check some old posts some will make you laugh some make you cry

[TimTooYoung in reply to olive2709]

Thanks for the nice reply, my doctor has been good his diagnosis was quick ie on the first visit when I could not believe it. I think you are right it's a long road and dosage management and general health management is key to any recovery. I,m just disappointed that my PMR has developed to GCA must keep spirit up to recover.

[PMRpro Ambassador in reply to TimTooYoung]

I think it is more likely not that the PMR has developed to GCA but that you had the PMR as the first sign of the already existing GCA. Whatever which way - yes, not a good way to start the new year.

However - let's be positive: your sight has been saved, the doctors reacted fast. I spent a lot of Christmas hearing of people trying to get doctors to take them seriously when they complained of horrendous headaches - that improved with pred and no other painkiller but the doctors were insistent it couldn't be GCA because "it wasn't typical".

Look after yourself for now and rest. GCA may be a longer road or it may not. I know a youngish patient who had difficulty getting a diagnosis at first but was back at her heavy shiftwork post after 2 years. We often see that PMR lasts longer than GCA and the Mayo clinic uses the word "cure" in relation to GCA where they don't for PMR.

All the very best.

[TimTooYoung in reply to PMRpro]

Thanks for taking the time to reply, I am hopeful of a recovery or at least a way of controlling the symptoms. The longest I have been off work is one week. I have had op on my knee recently and enjoy to run, I realise that I should not over do because it's not good for PMRGCA. I,ll keep posting

[PMRpro Ambassador in reply to TimTooYoung]

Remember that GCA is covered by disability legislation - not sure of details, just know it is. So don't force yourself to go to work out of fear of losing your job since you have a diagnosis of GCA. Someone whose doctors dispute what they have is GCA are in a far more precarious position and it is possible to work with GCA - just not very good for you or your employer in the final analysis. Neither GCA or pred make for efficient brain work and good concentration - so bear that in mind too!

You will recover from GCA - the only question is how fast the recovery will be and not overdoing any aspect of it will speed it up. The bigger problem in some ways is the pred dose - the high dose is far more likely to bring side effects with it than the PMR dose. But don't be tempted to reduce too fast - there is research evidence that the signs of the inflammation in GCA are still present after 6 months of high dose (over 20mg) pred. If that is so, trying to reduce too fast will just allow a flare and, in the end, slow down your recovery.

By the way - can I be rude Timtooyoung - how young are you? Order of magnitude will do.

[TimTooYoung in reply to PMRpro]

Hi no problem 58

[olive2709 in reply to TimTooYoung]

Toy boy

[TimTooYoung in reply to olive2709]

How did you know I was lol

[olive2709]

Forgot to ask you if you are on calcium if not get from GP on script they may try to give 400mg daily talk then into 800mg daily. Need to protect bones

[TimTooYoung]

I have bought an over the counter vit D and calcium tablet that I take daily, i,m not sure of quantity, i,ll let you know but thanks. Feeling tender just had Temporal biopsy

[mickt]

hi im a male Tim not many of us on here.I have pmr/gca was diagnosed at 51.Im not a typical case I also have type1 diabetes ,and addisons disease as well as sticky blood hughes syndrome .And vitiligo to top it off.I like yourself was worried about work ,but as has been said already GCA is covered under the disability equality act of 2010.This site had been helpful to me on my vasculitic journey, good people with good knowledge of the subject.If you have access to occ health in your work use it ,I was ill health retired in march 14 after a year off.I did manual work so may differ from office job as far as using your body.I suffer fatigue with all my autoimmune conditions and couldn't do office work due to lack of concentration .It sounds like your reducing too quick also,folk on here tell you better than me.Good luck and don't let this crap illness grind you down.

[TimTooYoung in reply to mickt]

Hi Mickt, thanks for reply, I did notice GCA is a little more common in women, or perhaps Men don't like to talk about it too much. My job is PC work 50% and the rest light manual and driving. I believe mentally I can continue with the job, physically it's not too demanding. The area I don't know would be the driving and the general fatigue of the job. I would like to work for a few more years but will be sensible about it and reasses as I go along. The thing that frustrates me it sounds to me as if you have a few other health issues that don't help. I have never had anything wrong with me more than a cold until this. It's all very strange to me. I do find exchanging information and getting to understand the whole thing helpful, I wouldn't,t have got to hospital last week so quickly if I didn,t have the knowledge gained from here. Good luck with your problems speak soon

[mickt]

Good news on your eyesight I was in the same position they saved my sight too.