I was hit by GCA just under two years ago. The symptoms were strong headaches and then pain and tenderness plus swelling under my jaw. I went to the doctors thinking I was one of those rare cases to have a second - later in life - bout of mumps.The problem was diagnosed as a viral infection. The pain got a lot worse, so much so that I had to get up in the night, wrap myself in a blanket - it was February 2012 - and walk continuously from the hall to the dining room, then to the lounge and back to the hall doing this loop continuously for two to three hours at a time. I looked so dreadful after one particular night that my wife called the NHS advisory service as she thought from the appearance of my face, particularly my eyes ( a very drooped right eye socket) that I might have had a stroke. The call was referred to a mobile medic who decided it was best for me to go to hospital. At the hospital the diagnosis was again a viral infection. It was not until a few days later when I forced myself to do a short walk along a footpath that suddenly I got complete double vision. I could not tell which footpath was real. Fortunately my wife was driving our car and after I had rested took me home. There were two following incidents of double vision and I decided to keep a doctors appointment that previously I had had a mind to cancel. My doctor asked me to take a blood test and said it might possibly be Temporal Arteritis (GCA is the other name). He said he would phone the next day if there was a problem. He phoned the next morning and asked if my wife could drive to the nearby town and pick up a prescription. I was to start taking the tablets immediately. This was my start on Prednisolone at a high dose level.
Before GCA hit me I was a reasonably fit 69 year old who enjoyed doing a lot of walking. I was very happy to walk distances of about 12 miles on steep terrain and even managed 18 miles one day on the Wales Coastal path; it was all ups and downs. My first walk after treatment had commenced was to our village hairdressers, about a twelve minute walk on fairly level ground. I had to phone my wife to take me back home as I could not manage the short fairly level walk back home.
There is a lot more to tell but I truly wish I had come across Kate Gilbert's book "Polymyalgia Rhumatica and Giant Cell Arteritis a survival guide" a lot earlier. It is so very helpful and has given me a perspective on how I am progressing. I am down to 6mg of Prednisolone now and hope to drop to 5mg shortly. If you have not read the book I recommend very strongly that you do so.
I would be willing to give much more detail than contained in the outline above if it would be helpful to others with GCA. One more thing before I go. I have recently gone on a wheat free diet at the suggestion of my doctor. It appears from recent medical research that wheat in the diet can act to prolong a condition of inflammation. I am just into the experiment which so far has been going for two months. I do my own wheat-free baking and I enjoy experimenting to produce food that is better than shop bought wheat-free food. It is also significantly cheaper. Of course there is nothing scientific in my observations but I have noticed a definite improvement, so much so that I am keen to continue with the experiment.
If there is sufficient interest I will write more to share my experience, including about my decision to go on a 5+2 diet. I was gaining weight and was becoming significantly over weight. I have lost a couple of stone in weight and really feel the benefit of it. The decision was reinforced when later I learnt that my sister who is 18 months older and a bit overweight had suffered a stroke. I told my doctor after I had started the 5+2 diet and he approved my action - thought it was a good idea.
I must stop now and wait to see what response I get. I don't want to bore any details of my personal experience with GCA. But perhaps there is some virtue in GCA sufferers sharing their experiences and especially if they have discovered any measures that are helpful.
Richard
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I too have benefited from the 5:2 diet, being able to lose weight whilst still on pred although it alone wasn't enough - I had to reduce processed carbs too.
But wheat-free? No, not so sure about that. I was wheat free from at least the early days of PMR, possibly even pre-PMR. I am allergic to something in wheat, not gluten, gluten doesn't pose a problem, it is something else since the gluten-free stuff in the UK was at one time made of "washed wheat starch" - no gluten but the rest of the wheat cell - and I reacted to that. It has made no difference to the inflammation. I've had vasculitis for 10 years.
You might be interested in another forum, pmrandgca.forumup.co.uk/ where you will find a group of us with PMR and GCA who have being exchanging our experiences for the last nearly 4 years in a way slightly different from here. You will be heartily welcomed I'm sure.
Thank you for your response, the details and for the link to the other forum. I shall sign up shortly. Just a bit more background to myself. I have been a vegetarian for about 35 years - no meat or fish - so that affects my intake balance. The reason is history but one not related to any allergies.
I 'seem' to be doing well on the wheat free diet and will pursue it for the time being. The result seems to be more energy and the satisfactory resolution on a longer term colon inflammation problem. This outcome has surprised me. Also, I have received a response from CELTIC who tells of a member with PMR who went on a wheat free diet, who became pain free after eleven years with pain. However, I think these matters are not simple ones to evaluate. Indeed, I have a black 'T' shirt with bold white lettering on it thus " I THINK YOU'LL FIND IT'S A BIT MORE COMPLICATED THAN THAT: WWW.BADSCIENCE.NET" and that sums up my belief also. I hope to learn a lot more through the forum contacts and perhaps, just perhaps, I will be able to be of help for others in some way.
Ah yes - one of my "liked" sites! Always good for a read...
Interesting though that you are veggie - many would have us believe omitting meat and dairy (yes, I do know the difference between the two) would cure us or being veggie would have saved us from PMR.
I could do with your t-shirt as a copy and paste for many of my replies
Diagnosed in 2012, unfortunately after loss of sight in one eye, never heard of GCA before then.
GP thought my shoulder problems of eighteen months was a frozen shoulder, and then subsequent head problems related to trapped nerve from that shoulder!
On diagnosis in local A&E, started on 80mgs Pred, now down to 6.5mgs.
Would be interested more in your wheat free regime. As you say, it may not be scientific, but if it works then good. Am always on the lookout for anything that will help this condition.
Sure you will get plenty of responses. Keep in touch, and good luck, DorsetLady
I'm another long-term GCA person, but I don't have TA - which is lucky for me (I think). I've lost 2 of the 3 stones I put on following a GCA flare 3 years ago, but now have osteoarthritis and lack of mobility is making losing the last stone difficult.
I'm not totally convinced about diet making a difference (unless, of course, you are on a junk food diet) as I've tried most things but nothing so far has had any noticeable affect. However, I loathe cooking, so my experiments have perhaps been fewer - I love food as long as I haven't cooked it and my stomach will allow it!
Thank you for your response. I'm sorry to learn of your CGA flare up and your ensuing osteoarthritis. That must be very difficult to adapt to, especially as you don't care for cooking. I have attached below a copy of a reply that I sent to another member. I hope there is something that you find helpful?
"Hello PMRpro,
Thank you for your response, the details and for the link to the other forum. I shall sign up shortly. Just a bit more background to myself. I have been a vegetarian for about 35 years - no meat or fish - so that affects my intake balance. The reason is history but one not related to any allergies.
I 'seem' to be doing well on the wheat free diet and will pursue it for the time being. The result seems to be more energy and the satisfactory resolution on a longer term colon inflammation problem. This outcome has surprised me. Also, I have received a response from CELTIC who tells of a member with PMR who went on a wheat free diet, who became pain free after eleven years with pain. However, I think these matters are not simple ones to evaluate. Indeed, I have a black 'T' shirt with bold white lettering on it thus " I THINK YOU'LL FIND IT'S A BIT MORE COMPLICATED THAN THAT: WWW.BADSCIENCE.NET" and that sums up my belief also. I hope to learn a lot more through the forum contacts and perhaps, just perhaps, I will be able to be of help for others in some way."
The question of diets is difficult. I set myself targets, made charts and monitored myself very regularly- in fact very much a man's approach. For women it is, for many, more difficult because of the emotional element. My wife joined me on the 5+2 and we managed it fairly well because on the fasting days we had a calorie limited intake but in the knowledge we ate normally on the days in between. However, the other thing that helps me are the words of a very dear friend, sadly now deceased. She was a psychologist, someone who helped people to escape from Nazi Germany, and who dedicated her life in this country to helping people. Her story was a remarkable and her words once to men"Remember to be kind to yourself". Those word have played their part over the years.
I see my doctor tomorrow and hope to reduce my dose to 5mg. I think I will be very content with a 1mg gram reduction every two months but that is a guess. I wonder what your taper down pattern has been? Please respond only if you really want to and in the meantime best wishes for better progress towards being steroid free.
Richard, I think I'm being a bit dim, but I am not sure how you think this would help? I am aware of the 5:2 diet et al but as I also have a hiatus hernia which rules out many things in any case, am reluctant to limit my diet still further. Thank you very much for your thoughtfulness though - I wish you a smooth journey downwards!
Richard, don't worry that you might "bore us with sharing details of your personal experience with GCA". Sharing experiences is exactly what these forums are for, and they are a virtual support group for those who haven't got a real support group in their area.
I too, like many others, had a very difficult journey to diagnosis of both PMR and GCA which began some 8+ years ago (my bed and a wheelchair became constant companions!),. I could so have done with a book such as that written by Kate in those early days! It is now some 2 years since I recovered, and it sounds as though you are certainly heading in the same direction having reached 5mgs. Do be very careful with your reductions from here, slowing them down considerably - not to put a dampener on things but for many the 5mg point can prove a bit of a stumbling block. From 5mg, I had to reduce in just 0.5mg decrements, tapering over a longer period than previously after suffering a major flare when trying to continue my reductions by 1mg a month.
Good luck on the 5:2 diet. Rather than follow any particular laid-down diet, I researched anti-inflammatory and pro-inflammatory foods and stuck to known helpful foods throughout, finding that if I veered off my diet for more than a week or so, I would certainly notice some increasing pain and stiffness.
Thanks for your response and my thanks also to the others who responded to my post. Tomorrow I see my doctor and I expect that I will be reducing my Prednisolone dose to 5mg. The pattern I have learnt is that upon a 1mg reduction I will experience about three to four weeks of not feeling so well (variable by the day) and have a slightly stronger headache whilst my body adjusts to the new lower dose level. This pattern did not exist when I was on a much higher dose of Prednisolone but then the percentage reduction was smaller. I know someone, a retired medical consultant who was a sufferer from PMR and he got stuck for a while on a 2mg dose. Put it in terms of going from 2mg to 1mg, that is a 50% reduction. As I understand it the endocrine system outputs hormones that circulate in the blood stream and the level of output is controlled by a feedback loop system - so the hormone output is controlled. The Prednisolone interferes with this system and as the dose is reduced the body has to learn how to adjust or switch back on (in stages) its own hormonal output. The reduction in dose at lower levels has to be done very gradually or else the risk is that symptoms will return. I am fully open to correction on this if my understanding is wrong. However, knowing an explanation for the pattern following a dose reduction is very helpful and removes for me concern on the progress of my illness.
On the wheat question, I am under the impression that going wheat free has helped me quite a lot. It is too early days for me to be to be sure about this but I have had another inflammatory condition affecting the colon and that condition has disappeared within a few weeks of going wheat free. I won't go into details yet as the trial has only been running for a short while and I wish to rule out coincidence. It does seem to me that if wheat plays a part in blood vessel inflammation in the colon (by aggravating or causing the condition) and going wheat free resolves that condition, then it is possible that wheat also plays a part in aggravating or extending inflammation in the temporal blood vessels? I wonder if anyone else has information on this?
When GCA (TA) was suspected for me, and I had read up about it on the web, I had expected to be referred for a biopsy to confirm the condition. However, in reading up I had saw that there was only a 50% chance that the biopsy would be taken on a length of blood vessel where the giant cells were present. My doctor did not wait to act. He must have decided that there was a big risk of my eyesight being affected by GCA whilst I was waiting for a biopsy appointment and the return of the laboratory results. The hospital consultant to who I was referred was satisfied that there was no biopsy taken and that I was responding very well to the Prednisolone - in itself a good albeit indirect indicator of the GCA condition. Also, a later/ delayed biopsy would not have been very accurate as the Prednisolone would already have acted on my GCA condition making detection of the condition less likely. In hindsight I believe that both my doctor and the hospital consultant were right in their assessment. Delay in waiting for a biopsy result could have resulted in my sight being permanently affected. The problem that GP's have is that the GCS condition is uncommon. When it was decided that I had GCA doctors/trainee doctors and senior nursing staff at the practice were invited (with my agreement) to sit on my appointment consultations with my GP. I mention this as I wonder whether all practices are as thorough and as forward thinking in training their staff?
My 5+2 diet has been very helpful. I have been monitoring my blood pressure (systol +diastol), pulse, visceral fat, body fat and BMI for quite a long time now. My blood pressures have dropped significantly (eg systol about 108 now) and now have little variation in value compared to when I first started measurements ( whence I had much wider and higher fluctuations). The vf, bf and BMI is now down in the mid 'normal' range.
I will close now and hope the above is helpful to someone. I will update my post in a few weeks time when I have been able to assess the effect of the drop in Prednisolone dose and the continuation of the wheat free diet.
Richard, high steroid doses can suppress our adrenal glands. Our adrenals manufacture their own supply of natural steroid (cortisol) when well, equivalent to around 7.5mg of artifical steroid, Prednisolone. Hence the need to reduce from around the 7.5/5mg dose in much smaller decrements and tapering over a longer period of time. If we reduce in too large amounts at this level, we can have a shortfall of cortisol until our adrenal glands catch up and, if we are unlucky, can experience a flare in inflammation necessitating an increase in steroids.
On the wheat question, as we are all quite different in our reactions to certain foods, it is possible that some people can benefit from a wheat-free diet to control certain ills. As far as Polymyalgia is concerned, a member of my support group who has had PMR for 11 years, has recently tried a wheat/gluten-free diet and has experienced total relief in his pain. He has also lost a couple of stones in weight so of course may be responding better to his low steroid dose (higher steroid starting doses are recommended for those who are very overweight). Another member with PMR had tried her hubby on gluten-free food after he had been suffering for a very long time with stomach problems - not only is he now without pain and bloating, but she has also found that joining him in the diet has eased her PMR pain.
Celtic, firstly let me say how much I appreciate the responses you have given to my posts. Secondly, I am very please to be able to say how my wheat free diet is being very helpful. I shall shortly start my research into wheat as I understand that it has been considerably modified to suit farming production. I will be writing to Aberystwyth university to see whether they are able to supply me with information on what modifications, in a form that I can understand.
There is another matter upon which I would value your insight. I have noticed that there is a lot of comment on Prenisolone dose reduction. In particular there seems to be quite a lot of variation in the prescribed size of the steps taken when tapering, and many reports on flare-ups. The psychological impact of having to resort to a higher dose is stated either directly or more subtly from the mood / tone of the writer. I have wondered whether some use could be made of the information that flows into the HU site? Let me explain briefly:
In my working life I had to deal with data sets produced by others which were often very useful though on several occasions I found errors that affected the conclusions. Nevertheless, most of the data was extremely useful for solving problems. The thought that arose within me the more that I read on the PMRGCA site was, in these days of public participation in collecting data (eg, Nature Watch) there may be a role for PMRGCA contributors to submit data about their condition which could, just could, help with the understanding of the two conditions and how to resolve the problems for making progress against the disease more satisfactory.
I realise that the data set would be complex for some of the following reasons;
1. How often are the prescribed doses Pred adjusted to take account of a patient's size / BMI?
2. To what extent do doctors take into account the fitness level (including the pre illness activity level of the patient. Recovery rate could be related to the patient's pre illness fitness level?
3. Were there any pre-illness indicators that were present before the illness hit? In my case I was pretty fit for my age ( walking 12 miles fairly frequently) but I did have a problem with piles and in the year before GCA hit me my leg joints were becoming a lot stiffer plus some aching in my hips. Looking back on it I was amazed at how taking Pred quickly and suddenly freed up my joints, particularly leg joints. Since going wheat free the inflammation and discomfort at my colon end has disappeared. If going wheat free had this effect on my lower end it seems unsurprising that I have noticed an improvement with my GCA also including a much shorter length of discomfort period following a taper down in the Pred dose.
4. The above suggests to me that diet may be a very important factor in relation to PMR and GCA. AS for me I have had a very healthy diet for years and am a long term vegetarian. I wonder to what extent a poor diet and being overweight affects the course of PMR and GCA? There can of course be a very significant psychological dimension to being overweight, eating for comfort etc. I used to attend psychology courses at Wansfell College given by a remarkable woman Dr Susanna Bano. We became close friends and eventually she invited me to take some of the sessions on her courses. As a result I became very aware of the psychological element to peoples lives. The several support groups for PMR and GCA could of course be important in this respect.
I have many more thoughts in addition to the above. However, a little more about DATA. On the 1st January this year I started to monitor my weight, body fay, visceral fat and BMI plus my Pred dose level. The data I collected now includes blood pressure: systolic, diastolic and pulse rate. I plot his in tabular and graph form. I can see how my weight and blood pressure have dropped and have stabilised at a most satisfactory level for my age (eg, at age almost 72 my Systolic is in the range 100 to 112 mmHg and other indicators are very satisfactory). I don't know whether I will suffer a first flare up in the future but if I do perhaps the data set will tell me something.
I have several thoughts on the data that may be submitted by PMRGCA uk members: 1. The first is to what use the data may be put and who would do any analysis. This is an unknown at present but it is possible that the data might, just might turn out to be very useful.
2. A concern about the data would be the accuracy of the content but I think a researcher could evaluate that to some degree.
3. The economic cost of these illnesses is an important dimension, given how debilitating these illnesses are. The main factors are I think: the economic consequences for the individual, the economic consequences for the employer (where relevant), the medical costs including longish demands on the medical services, the cost of support for those who require help from the social services including manpower, aids and psychological help etc. If a cost could be put on these then perhaps there would be an argument for research money to help study the conditions and medicinal solutions.
4. Awareness. I include in this information in well written and presented form for: doctors, specialists, making Kate Gilbert's book more visible such as exposure in the media, especially television and on U-TUBE, newspapers and magazines and of course radio, especially Radio 4 (Woman's Hour etc), and guides for new patients as to what to expect / progression for all scenarios. I will just give you an example from my own experience. My doctor diagnosed suspected Temporal Arteritis, later confirmed by the hospital. I looked on-line for a local support group without success. Our village gardening club made a collection donation to PMRGCAuk as one of our members was suffering from PMR. That PMR member passed on to me a copy of the PMRGCAuk newsletter. Connection made between TA and GCA.
Perhaps there is a possibility, through connections, of raising interest and getting a grant from a medical foundation for related research?
Celtic, I feel sure and in some part know that PMRGCAuk is already doing a lot about what has come into my mind. I don't want to tread on anyone's toes with my thoughts especially as I am a newcomer to and contributor to the group. That is why I would very much appreciate some feedback from you. And don't hold back as I believe that all feedback, including negative feedback is actually positive; there is something to learn from it all.
Please don't hurry to reply. I believe there is much lost these days with so many making very quick responses to all sorts of situations and information. So please take your time if you want to reply.
There is plenty of reason why removing wheat from the diet would improve a gut condition - and not necessarily because of an effect on vasculitis so in your own words: it isn't quite as simple as that!
You must have an exceptional GP practice - most of them seem to have no time to see their patients, never mind train their staff in an orphan disease like GCA where they are unlikely to see more than a couple of patients a year - if that.
I am very interested in your 'GCA journey'. I was diagnosed with GCA 15months ago & had similar problems to you before that. I have had a difficult time with pred side effects, managed to get down to 8mg on the slowly, slowly method but I am suffering with a flare at the moment, back up to 10mg. I find my spirits get very low & I have difficulty sleeping. I, also have Kate's book which is so helpful, also the good advice on this forum is a must for me.
Good Luck with your wheat free diet, it is something I will look into.
Thank you for your response. To deal with the wheat diet question first below is an excerpt from a response that I have given to another forum contributor;
"I 'seem' to be doing well on the wheat free diet and will pursue it for the time being. The result seems to be more energy and the satisfactory resolution on a longer term colon inflammation problem. This outcome has surprised me. Also, I have received a response from CELTIC who tells of a member with PMR who went on a wheat free diet, who became pain free after eleven years with pain. However, I think these matters are not simple ones to evaluate. Indeed, I have a black 'T' shirt with bold white lettering on it thus " I THINK YOU'LL FIND IT'S A BIT MORE COMPLICATED THAN THAT: WWW.BADSCIENCE.NET" and that sums up my belief also. I hope to learn a lot more through the forum contacts and perhaps, just perhaps, I will be able to be of help for others in some way."
The reduction in Prenisolone dose is a difficult one I think for many people. Since getting down to a 10mg dose my reduction pattern has been 1mg every two months though there was one period when I decided to stay on an 8mg dose for double that time. I have been wary of reducing more quickly as I have read on the web quite a few comments on the occurrence of flare-ups. My pattern following a reduction by 1mg is to have a period when I do not feel too well, have less energy and a slightly stronger headache. This lasts for a few weeks before I get back to my 'current normal'. My headache is still with me all the time, day and night but it has been becoming less strong. I think that this is a fairly normal pattern whilst the body has to make up its own output of cortisol to make up for the reduction in Prednisolone (cortisone).
I am sleeping somewhat better now but my solution to waking up in the night has been, for a long while, to look things up on my tablet. I look at the little screen and follow my interests until my eyes begin to feel heavy. I still do this night time reading but less often now as I do get more sleep. I remember well my first 'better nights sleep' after such a long, long time with very little sleep. My sleep pattern varies now and some nights it is relatively good. It has been consistently better after going wheat free though this did not happen instantly - took about two weeks plus.
If you do go wheat free please let me know how you have got on once you have given it a trial of a couple of weeks. As to how you are, how you feel, if you want to share things with me that's O.K. I would like to help if I can.
I have lost one and a half stone over the last 6 months with a very good local Slimming World class. The diet is really not a diet to me, just low fat lots of fish, meat and fruit and veg and I have cut out bread completely. I am now down to 2mg pred daily and about to go to 1mg. After reading this and because my father had coeliac disease I think I will cut out the small amount of wheat I may be eating. Possibly cutting out bread is why I feel so much better eating as advised by Slimming World. (I have reduced from 60mg pred over about 2 years).
Thanks for your response to my post. I saw my doctor today and I am pleased to be down now to 5mg. I too started on 60mg. Have you had any problems in reducing the Pred dose level? I am aware that some do. I know someone who got stuck for a while on just 2mgand some people have to step back up a dose before tapering back down again. This is a problem which is difficult to understand and perhaps is counter intuitive. As to going wheat free I know a little about coeliac disease as a friend was diagnosed with it some years ago. The difference it made to her by going gluten free was remarkable.
I have discovered that wheat is contained in many foods so I have got into the habit of reading labels carefully. I make my own bread and cakes, sometimes with bought wheat free flour and sometimes with flour mixes that are made up. My bread machine, a Panasonid SD-255. has a section in the receipe book on gluten free and wheat free with both named and un-named flour flour suppliers. The procedure is dead simple as you put the ingredients in the hopper in the order listed and press the button. It also lists five speciality loafs, eg., Date and Raisin. I also have a little book of GF recipes for making both bred and cakes in the bread maker but have yet to explore that in detail.
Hello Richard, I too have found it helpful to cut out wheat, as since I have had PMR I have suffered from pain and bloating after eating, I don't understand the connection but my acupuncturist recommended a wheat free diet and also the 5-2, which I have not yet tried! I am not overweight at present. 14 months into PMR without pred but taking large dose of vitamin b5 my legs are starting to work better, still crampy but I make myself walk progressively faster and once managed 5 miles, and can now manage hills (ouch!). I don't know yet if my 'no steroids' plan will continue to work, but I am making the most of my present improvement. I hope you too will manage to get back on the coast path, it is uplifting !
Thanks for your response to my post. I found it to be most interesting. I don't know much about PMR other than someone I know, a retired medical consultant, got stuck on 2mg of Prednisolone for quite a while. He had replacement hips whilst still having PMR and more recently has had replacement knees. He wants me to let him know about the wheat experiment on myself. I am impressed with the difference it seems to have made so far.
I would be very interested to learn how you progress with your Pred free experiment. I wish you all the best for a successful solution to your PMR.
Hello Richard, I have just re-read your posts and mine. How are you now? I have now had pmr for 2 years, I am still wheat free, still taking the vitamin supplements and having regular acupuncture. My pain has reduced and mobility improved, I walked up a steep hill on dartmoor yesterday and have no bad after-effects. I have seen a big improvement since I have been taking borage oil capsules and evening primrose capsules. My worst problem at the moment is tinnitus which I have had since the pmr began, and seems worse over the last week when I have eaten a few sweet foods, do you think sugar plays a part? I also have a lot of headaches. I am cautiously optimistic that I will beat this illness without resorting to steroids, but a bit worried about developing gca.
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