Hi I have only been diagnosed with GCA last month and from what I have read everyone seem to control their own pred, mine are done by my rheumatologist at the hospital, how long does it take for the GCA to get sorted? and how long do you have to be on pred for?
Does anyone know the reason we get GCA? Could it be connected with stress as I had a lot last year and looking at the symptoms all mine started about the middle of last year.
Sue
Sue, it is recommended that those with GCA should be under the care of a rheumatologist. It is only when on the lower doses that we get to know our bodies, our GCA or PMR, and learn what dose is required and when.
No-one can tell you how long it will take for the GCA to "get sorted". We are all different and so will respond differently to both the illness and the treatment. The steroids are not curing anything, they are just getting control over the inflammation whilst the disease runs its course, and that can take anything from two years upwards. A very very few lucky people find that their illness goes into remission in a year to 18 months, but relapses can be quite common in such people.
Many reasons for succumbing to either PMR, GCA or both have been mooted, with a lot of people mentioning a period of severe stress, whilst others blame starting statins, and others a bout of flu. At a vasculitis symposium in London last weekend, one medic believed the possible cause to be something in the environment, even silica has been suspected. It is more widespread the further north in the world, and the UK has the highest incidence, particularly East Anglia. If reading these forums is anything to go by it would seem that stress is a major factor - certainly we find that we need to avoid stress at all costs whilst on treatment. Unfortunately some stresses are impossible to avoid but many of us have certainly found that stress seems to aggravate our symptoms and our steroid reduction programme.
Hi Celtic
Thank you for replying it is very interesting, yes I have found that if I get stressed or agitated about anything I get pain again well that explains it now. Can I ask what you have and how long you have had it and what meds you are on. By the way I live in East Anglia.
Sue
Sue, I have had PMR and GCA, both now in remission for the last 3 years. My worst time was the first year when a rheumy failed to diagnose me and I wondered if I was doomed to spend the rest of my life in bed and unable to walk. I spontaneously recovered within that year but it was short-lived and all the symptoms returned together with a whole host of new ones. Just under a month later, GCA was suspected together with PMR, 40mgs Pred prescribed, and I was referred to a rheumy within a week who confirmed the diagnosis. Although I baulked at having to take so many pills, steroids gave me back my life, not as it was before but hugely preferable to being in bed, in pain and undiagnosed. It took me 5.5 years to reach remission but I took the slowly slowly route with reductions following a severe flare at the 5mg stage which necessitated an increase to 10mg to control the pain.
Can't believe you live in East Anglia after me mentioning it in my previous post! There is a support group that meets in Suffolk and another in Cambridge - you will find details on the PMRGCAuk website.
Any stress mental or physical sets me back, at the moment I am being investigated for W G so the worry of that and the symptoms I'm having are not good, so back on a high dose of Pred. By the way I live in East Anglia
I border Suffolk/Cambridge
It should be your rheumatologist who would prescribe the correct dosage of Pred, depending how advanced your GCA is. After a while, it may be possible to reduce the dose by substituting in some Methotextrate, but this has to be done carefully and at the right time - often 1-2 years after starting with steroids.
I suppose I was fortunate in that I came down off preds within 18 months after losing 1 eye to GCA. Celtic covers it nicely, as usual, in his reply! All I can say is control your own reduction program when the Hospital give you the option & eventually you will get to join "Club Zero", still with some aches & pains, but these I regard as the legacy from having been on steroids for so long & are bearable in the knowledge that they exist & painkillers can be prescribed. Hope you get on well with the withdrawal!
Thanks for that it is good to see different people's experiences and advice.
notnice
Go to the following websites and read up as much as you can
pmrgca.co.uk/content/home-page
pmrandgca.org.uk/ (covers Scotland)
They all have a wealth of information on and also have people's stories who have had or have GCA.
East Anglia and Cambridge Support groups contact details are listed.
There is almost certainly no single cause of any autoimmune disorder - which both GCA and PMR equally almost certainly are. This means the immune system goes haywire and doesn't recognise your own body as "self" but attacks it in the same way it would attack invading bacteria and viruses, damaging tissues. Which tissues are affected governs which disease label you get - but they tend to overlap and you can have a version that has symptoms of several - or none - of the others. In the meantime this is being acknowledged by the names of disorders which formerly had the name of the person who described it first being changed to something describing the aetiology.
In the case of PMR and GCA there have been various hypotheses of what causes them - and most have been disproven to the satisfaction of some/many researchers. There is no sign of a viral or bacterial infection being present in all patients, no common specific environmental factor that can be identified - but of course we are all exposed to many chemicals. Genetic pre-disposition almost certainly has something to do with it - people with Scandinavian ancestry are more likely than people with African ancestry, but that doesn't mean all Scandinavians will develop it or no Africans. And stress as we think of stress does often appear in patient's clinical background. All the other suggested factors including medications are also stresses in a physiological sense so it just forms one more sort of stress.
Most of us who are apparently managing our own dosage are doing so in terms of the reduction. Most rheumatologists will suggest a reduction plan which just isn't slow enough for the vast majority of patients. The most common cause of a flare is reducing too far or too fast (too big steps) and over the 5 years the three forums have been up and running several of us realised that as people came to moan about flares and other drugs and we started suggesting to people to reduce in smaller bites: GCA patients who had failed to reduce 5mg at a time did manage to reduce 2.5mg at a time and the "threatened" use of methotrexate turned out to be unnecessary.
Then a few of us with "just" PMR who were having similar problems getting down to and below 10mg (we only started at 15mg) started experimenting with how we did a reduction and found 1mg was always better than more and 1/2mg better still - not just did we have fewer flares but to a great extent we also avoided "steroid withdrawal" pain into the bargain.
Then a few of us took an example from a Swedish gentleman called Ragnar who spread each of his drops over a couple of weeks when he found he couldn't get below 5mg without problems. Individually several slow reduction plans were developed - and I used mine right from 15mg when I was back there after a major flare. Never a problem - no flares, no steroid withdrawal pain, just steady reduction down to 5mg when I'd never been below 9mg before. Mine, which is used by a lot of people on the forums, is being looked at by one of the research groups and has been approved by several people's own rheumatologists when they have looked at it. Another is in use by a consultant in the north of England for his patients as well as the members of a large support group. You are not aiming relentlessly to zero - but you can get far lower with these plans than with the conventional plans. You also identify the "lowest dose than manages the symptoms" far more accurately with the slow process.
Rheumatologists are coming round to the slowly slowly idea - and one paper was written for the general guidance of GPs or inexperienced rheumatologists:
rcpe.ac.uk/sites/default/fi...
They provide suggestions for reduction plans that they find reduce the rate of flares to 1 in 5 rather than the 3 in 5 found with more conventional reduction schemes. In GCA they take 6 months to get from 60mg to 20mg before continuing over 2 years more to get to zero - providing there are no flares on the way. Research in the last year or two has suggested there is still evidence of inflammation in GCA and other forms of vasculitis even after 6 months at above 20mg pred, doses considered a high dose. To try to reduce faster than that is often likely to lead to flares in the symptoms, needig a return to the even higher doses and in the end using more pred than if you had gone more slowly in the first place.
I believe my PMR came as a result of the "perfect storm" of extreme mental stress on the heels of two emergency spinal surgeries. The spine surgeries relieved pressure on my spinal cord, a good thing(!!) but concurrent 6 months of family crises really pushed me over the edge. PMR hit me like a truck, and completely took over my life!
i do believe that Stress is a major catalyst, especially in conjunction with any kind of severe physical event (asthma, illness, injury, etc). I encourage you to schedule a regular mandatory rest period, every day. Consider it the same as a dose of medicine to be taken after lunch daily. It helps me.
I'm well into year 2, on 5 mg pred. And feeling much better.
Best wihes on your journey. Jerri
Hi Jerry
I am sorry to hear about what happened to you must have been very troumatic for you.
Thank you for the rest period idea it sounds like a good idea and I will put that into my day.
Sue
Hi Sue..
My name is Betty... I was diiagnosed with GCA 18 mo. ago. It is caused froom inflimation in your body. It could be stress bt it is being low on Vit, D among other things. I was put on 60 Mg when I started Bd ow down to 7mg. ( will be going to 6 this Monday) Googa "why does pred cause whelts when reducing" a whole lot of links will come up and you will get a lot of info. Dont let your rumy talk you into any thing you dont feel is good for your body and dont let them talk you into biophosphates without reserching and ck out save the bones program before you mae your decision. I will be 80 in July. Keep a positive attitude and good luck..You are going to have a lot of wierd things happen. Be alert to the changes you will be going thru...Best of luck...Betty
Hi Betty,
Thank you for your very nice reply and best wishes, the information is really useful.
What was your programme for coming down on the preds? How much did you come down each time and how long was you on each dose.
I Have just gone from 20mg each day back to 25mg as it all came back, I have to stay on 25mg for 2 weeks and am not sure what I will be going on after that as yet. The rest of my programme is to reduce by 2.5mg every two weeks until I reach 10mg then reduce by 1mg every two weeks until I reach zero or best dose for me.
What did you find best to do, carry on a normal or to rest up?
Hope your birthday is an extra special one in July.
Sue
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