Dear Everyone, Last year I asked for help in putting together questions to be answered in a book I am writing with Professor Bhaskar Dasgupta. I’m the journalist/GCA sufferer and, of course, he is the expert.
It’s a book on which he has been keen for a long time, not just for patients but also as a reference for GPs.
I’ve had the most enormous number of emails with a vast variety of questions. Unfortunately, due to having to learn to cope with the effects of an antibiotic-resistant hospital infection, there has been a delay.
But I want to assure everyone the book continues - I’m now sorting and grouping all the questions. Once that is done Professor Dasgupta and I can work through them and, hopefully, put together a reference work that will answer all those questions we all face as we strive to cope with PMR and/or GCA. Greenlander AKA Eric Clark.
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Great news about the book, Eric, although not so great to hear you've been suffering from a hospital infection. I do hope it didn't upset your GCA too much and that you soon make a complete recovery from the infection. All good wishes.
Hello, I was at a meeting last week, where Prof. Dasgupta gave a talk and spoke about the importance of recognition of the symptoms of GCA and the new fast-track referral to hospital when GCA is suspected. It was very interesting and informative and especially comforting to the 90% of the audience, who had PMR and were worried about the possibility of contracting GCA..
There wasn't an opportunity for me to put my question and I am wondering if there is going to be anything in your book about "the other end" of GCA. I was diagnosed two and a half years ago and had the familiar high-dose steroid treatment, with some of the effects of that. Also the well-known reduction with a flare along the way, until now I have been on 5 mg for about 3 months.
My question would have been - is it possible to find out if GCA has gone into remission? The symptoms I have are not exclusive to GCA and could simply be old age. Is there a test that could establish that GCA is no longer active?
Then, my next question would be - does it matter? Need I know if GCA is present? My reduction plan from 5 to nil steroids would probably be the same and I have become quite philosophical about life in my 86th year. It is still a very full and active life, fortunately. I still work at my craft, hold Spanish conversation sessions and "jump" on and off 'buses to go places. Do I really need to be able to say, or think, "I had GCA", instead of "I have GCA"?
There are people, I know, whose GCA or PMR is in remission and I wonder how they know. Is it just by reaching the end of steroids and not experiencing any problems?
Is there anyone elso out there who wonders about it?
So glad this is coming! I'm a journalist too and the more information out there on these conditions, the better. LizML, what did Dr Dasgupta say that was consoling to the PMR sufferers? I see so many varied predictions of how likely someone with PMR is to later on, get a return of it or have the risk of GCA.
For what it's worth, I'm at the other end of PMR -- just over a year off steroids, was on for two years. It has taken that year off, to slowly regain flexibility etc -- it sure isn't like two years on steroids, reductions then bang! back to a pre-PMR state. But I have to remind myself how much worse I was with PMRand in the immediate aftermath. I can climb a fence now and am learning to ride horses, for example. Can swim back at my old 'fitness swimmer workout' level, but would not be able to run very fast!
So many of these kinds of things aren't explained anywhere. I found Kate's book to be a fantastic help in addressing many of these gaps, even now that I am off steroids. Will be looking forward to this book too.
I haven't got any answers but more of a question... I'm interested that you still needed a year to regain flexibility etc after you stopped steroids completely, which suggests that you were still symptomatic when you got to the magic zero. While you were in the final stages of reduction, what were your symptoms like? How did you know when you were ready to make the next reduction? I have been slowly slowly reducing and am now on 4mg, but I have always waited till I felt pretty OK before I made the next reduction, and sometimes wonder if I've been going too slowly.
It's so useful to hear other people's stories. As you say there are so many gaps in our knowledge and together we can patch them up!
Pipistrelle, Prof. Dasgupta was very positive about the information that GPs are being sent, alerting them to symptoms such as vision problems, jaw claudication, sensitive scalp and "educating" them into recognising them to be signs of GCA and the importance of immediate action being taken. He also spoke of the hope of a successful outcome with the use of Tocilizumab in GCA. I wish I could remember all that he said that day.
I think it is great that you have recovered enough to be enjoying all those activities, what a boost for the morale of other sufferers of PMR, to know that there is a light at the end of the proverbial tunnel. I too found Kate's book very helpful, as she went into greater detail about things than is usual.
Thank you, Eric. I hope you get rid of the infection soon. I look forward the book. I was at the Roche weekend in January, 2013, but we didn't happen to meet. I was probably the oldest there - I feel I am different from the usual PMR/GCA patient, as the majority are in their 50s and 60s and, therefore, have a different outlook and expectation for the future. I feel very sorry for people of that age who have the diseases. At least I had 83 years with very little wrong with my health.
Corallie, I find it very difficult to "think outside the GCA box" or not to blame everything bad on steroids. I also find it confusing, but I think we are lucky to have escaped losing our sight by being put on steroids. We have both had around 2 and a half years of GCA and you have had PMR as well, so let's hope, as we are in the "third age", we'll get off with a lighter sentence. You are on a lovely low steroid dose now. I shall try to get down to zero from 5 mg. by the end of this year. Liz
I would say, that before anyone comes off pred completely they should ask for an adrenal function test. It can be that as you age and have been taking pred for some years that the glands may not get up to speed or indeed function again. Some people who have been on longterm pred find that they are on 5mg for the rest of their life.
A synacthen test checks the function of the adrenal glands. It can help to see whether your body is producing enough steroid hormone (cortisol). patient.co.uk/health/synact... read up on this site which is well administrated and is run by two GPs and is used by GPs and medical professionals.
Once you get down to a low dose, ie 7.5mg and below nearly all the side effects disappear. There are other auto-immune illness, and they occur in children, where patients are on pred for a lifetime. Pred is a very powerful medicine and without it - well I don't like to think about that at all.
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I see so many varied predictions of how likely someone with PMR is to later on, get a return of it or have the risk of GCA.
Prof. Dasgupta talk, very interesting
Prof.Dasgupta on PMR and GCA
GCA and PMR
New & Confused with GCA
