GCAwife

I have just stumbled across this site with great interest. My husband is currently in hospital having treatment for GCA having undergone all the tests and investigations including a temporal artery biopsy. The rheumatologist is pretty sure he has GCA but the doctors were a bit baffled to begin with as my husband suffered several unusual TIAs triggered by cerebral vasculitis and this has been narrowed down to GCA. He has been having bad headaches and vision problems which come and go and then loss of hand control and speech with the TIAs. He is on high doses of prednisolene and today he begins a course of iv cyclophosphamide which will be given every two weeks for a period of six months (a bit like chemo!) to prevent any more TIAs.

This has been a real shocker for my husband and the family so I would be interested to hear about any diet tips to help him along the road to recovery. I have read about the wheat free option which I will put into place immediately he comes home. Any help would be much appreciated and I would be interested to know if anyone else has suffered a stroke as a result of PMR/GCA. Many thanks.

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  • I don't think "wheat-free" as such makes that much difference - but cutting carbs in general may well help avoid weight gain with taking high dose pred. That then means no substituting free-from products for the pasta/bread/cakes and so on you cut out by being wheat free and keeping most fruit to a minimum too! Berries are lowish in carb and substitute leafy veg and salads for other fruit. Low carb really does seem to help with the weight problem and also the possibility of developing pred-induced diabetes. I think it also helps avoid the craving for food many people experience on pred as it reduces the spikes of blood sugar it causes.

    It sounds as if they are covering all options because iv cyclophosphamide isn't normally used for GCA, it responds to pred, but cyclophosphamide is often used for cerebral vasculitis. If you want more information about the cyclophosphamide management you will probably get more information about it over on the VasculitisUK forum which deals with all forms of vasculitis while here is directed at PMR and GCA.

    healthunlocked.com/vasculit...

    But do keep us informed and keep asking for tips - this is a much more active forum than the vasculitis one for some reason and a bit more relaxed.

  • Thank you so much for this info, very helpful. The thought of going wheat free was a bit daunting and challenging but low carb will be a bit more manageable.

  • It isn't as difficult as you would think - I rarely eat wheat, it has to be something really yummy to be worth itching for! There won't be a lot of wheat if you are genuinely doing low carb!

  • Hi,

    Sorry to hear about your husband, I'm sure you're all very worried out him. Hopefully you will get a definitive answer about whether it is GCA or not, then you can plan the way ahead.

    As PMRPro has said, there aren't any magic diet tips if you have GCA, other than to try and cut down on carbs etc, Pred does have a tendency for some people to put on weight, and even if you don't it seems to distribute it to places you'd don't necessarily want - chubby cheeks, and dowagers hump for example! You can get a list of antiflammatory foods on many different web sites which a lot find useful.

    You can find plenty of info on the PMRGCAuk web site if you do get a GCA diagnosis, and of course on here. There's plenty of experience!

  • Many thanks DorsetLady

    It has been a huge learning curve especially as neither of us has ever suffered from any serious health problems and my husband (70 this year) has always been extremely fit and active. I don't think he has really taken on board what's happened to him and is a bit in denial and is not too impressed that I have joined this chat room but its extremely helpful (and important) to me that I can learn as much as possible. So glad I found you all and the PMRGCAuk website.

  • Hi again,

    Yes denial is something a lot of us on here recognise! As you say, most were fit, healthy, busy people prior to GCA. It takes some getting used to, and if your husband has it, learning to pace yourself is probably the most difficult.

    It's not necessarily life threatening if diagnosed, but it is life changing. You have to do a bit more thinking and planning and a little less doing! If you do too much one day because you feel full of beans, it has a habit of bring you back down to earth with a bump the following day!

    Hopefully, your husband will come to appreciate us in the future, and it is important for you as well, there is very little knowledge in the wider world regarding GCA or PMR and it can be very isolating!

  • If you want more reliable information you will find a load of links in this post on another PMRGCA forum:

    patient.info/forums/discuss...

    It's easier than writing them all separately! There's lots of reading on the NE website.

  • Dorset Lady, You have made an interesting comment in your reply to GCAwife.The sentence about Pred. weight and dowager's hump. I have the start of dowager's hump, but never associated it with the Pred, as I have had kyphosis from about 11 years of age.

    I put on 3 stone when diagnosed 10 years ago, with GCA...have lost it all now, but makes me think. Hmmmm.... I was on Cortisone from early childhood for asthma.

  • Hi,

    I know a dowagers hump is caused by kyphosis (didn't mean to imply Pred caused it specifically), but lots on Pred do seem to get an accumulation of fatty tissue in almost the same area, perhaps slightly above - closer to the nape of the neck, which is what I should have said I suppose.

    But you never know, this Pred is a mighty powerful drug, and it certainly re-distributes bits of us around! Good for wrinkles though, or rather lack of them!

  • No, I didn't think you meant anything untoward re Pred. Just found it very ineresting as hadn't heard before. Ditto re; wrinkles!

  • Wrinkles - am going by personal experience! or maybe it's the genes! Whatever, we'll see what happens now I'm off it.

  • How lovely and supportive of you to find out information on his behalf! I do recommend you phone PMRGCAuk if you are in the UK and ask for a free information pack - pmrgca.org.uk 0300 999 5090. As far as diet is concerned, do bear in mind that he is really quite ill, and so during at least the early stages of treatment and recovery, what he needs more than anything is lots of tlc and food that is nutritious and easy to digest. I'm thinking of things like homemade soups, fish, eggs, etc. Don't try to force him to eat lots of raw vegetables and salads if that's not normally his choice. These foods, while having a lot of nutrients in them in theory, are hard for the body to digest, so we don't get all the nutritional value from them. If you are cutting carbohydrates, he will need to get his energy from somewhere else, so 'good' fats are really important here.

    Hope he has a smooth recovery!

  • Hi Kate

    Many many thanks for your reply. It is a huge comfort to me that I can exchange notes and info with you all and to know that help is at hand. I have bought your book!! My husband is one of those typical men who wont admit he is ill let alone believe he has GCA. His symptoms began in March 2016 after he had attended a very busy three day business convention in the Sates. He thought it was just a bad back ache but in fact the pain was everywhere - hips, legs, shoulders, neck and bad headaches. The doctor told him he had classic PMR symptoms, took a blood test and referred him to a rheumatologist. My husband in the meantime had decided he wasn't going to take steroids and someone advised him not to if he could avoid it!

    The rheumatologist thought his symptoms weren't bad enough for PMR and his ESR and CRP counts weren't over the top. He recommended an anti inflammatory medication. The next thing to be affected were his hands especially his left and he was told it was carpel tunnel so he duly had the operation and it was when he was having his preassessment he learned that his blood pressure was a bit high. The PMR symptoms didn't seem to diminish with the anti infammatories and in view of the high blood pressure he was taken off them and put on BP medication. So this takes us up to the end of November and four days after he started the BP meds he suffered his first TIA. The BP med was increased, the bad headaches continued as did the aches and pains. Exactly a month later he suffered another TIA, affecting speech, vision and arm mobility. The doctors then started putting two and two together and looked more closely into his inflammatory problems, the fact that he had a pain by his right ear (he thought it was an ear ache), pain in his neck, his temporal veins were enlarged! Now classic GCA symptoms! He was immediately put on high dose pred 80 mg and underwent all the tests, MRI scan, angiogram, lumber puncture, temporal artery biopsy, echo cardiogram all of which were negative or 'inconclusive' can you believe, although the MRI scan did show up the TIAs and the angiogram showed inflammtion of the veins in his neck and brain (cerebral vasculitis) and this is what triggered the TIAs

    He is home now having spent almost three weeks in hospital but I am just thankful we seem to be on the right tract with the right diagnosis.

    I realise how difficult PMR/GCA is to diagnose but hopefully the above will help others recognise the symptoms.

    Thank you for listening!

  • I have been eating a balanced, 'healthy' diet for many years and since diagnosis 8 months ago have put on just 1kg in weight, which I might have put on with the reduced activity level due to the PMR. I've not avoided any specific foods but have never eaten much sweetstuff, so my sugar intake is low anyway. I include some starchy foods, fish, eggs, meat, dairy and plenty of veg and fruit, as well as a little dark chocolate! We all find the best diet to suit ourselves and I agree with Kate Gilbert that your husband needs tlc, which can also be in the form of 'a little of what you fancy does you good'! He's in very good hands, so take care of yourself too.

  • Thank you kind person! Just what I wanted to hear. x

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