Totally Frustrated

Has anyone else had difficulty getting their symptoms diagnosed. I was booked for a TAB yesterday but when I got there the surgeon said there was no point in doing it as I have already been on 60mg daily of Pred for 4 weeks and this will have suppressed the inflammation. I saw the rheumatologist today who says he does not think I have GCA as it would be so unusual due to my age of 51. He kept saying he wished I had been referred to him when my symptoms started as he would not have started me on steroids but would have done a TAB straight away. He has given me a tapering protocol for the pred of 10mg reduction every 5 days and told me to watch for any return of symptoms. I am feeling absolutely awful on the pred. The scalp tenderness and headaches have gone but I have a horrible blocked feeling in my right ear and tinnitus like a blood pumping sound. I also have burning pain across my back, feel feverish and really spaced out. The rheumy said my heart was absolutely racing. I am on the slimming world programme and haven't lost any weight this week despite following the plan. My face has puffed up. He said that the reason I am feeling so awful will now be the side effects of the pred. I still have no answers as to why I had all the symptoms in the first place so I don't know where I go from here.

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  • I am so sorry to hear you feel so rough. Just because you are 51 does not mean you do not have GCA, also headaches and tender scalp do point towards it. If the symptoms come back as you reduce stop reducing and let the consultant know. Once you are on pred a biopsy is no good in checking whether you have GCA, (it is not necessarily one hundred per cent even if you are not on pred if it comes to that), so it has to be based on symptoms only.

  • The only consolation I can offer is that the TAB isn't 100% accurate anyway, if the giant cells have skipped the bit they look at it won't show up, so at least the surgeon saved you that. It was a wasted appointment though that someone else could have had. It is basically a clinical decision - and that can only really happen if the GP is bright enough to send you to the hospital with a letter in your hand after he has phoned ahead. But that would require effort in most places. There are a couple of fast-track set-ups - they are too expensive to have more and anyway you have to get the GPs to put their brains in gear.

    I'm sorry - it is very very common. Your rheumy is wrong on one point though. Two years or so ago a 37-year old man who had died of a stroke was found at autopsy to have had GCA. Take him the link:

    walesonline.co.uk/news/wale...

    In fact, when you read the literature properly there are more than several documented young cases - and I know of a couple currently in the UK (because of the work I do on the forums). Rare at your age, maybe, but rare doesn't mean never.

    If the symptoms return as you reduce the pred don't wait for a moment but go back to the hospital and insist they do other tests. The inflammation will show up on PET-CT or PET-MRA - they are expensive and not easy to access and that is why they aren't done routinely. But they could provide an answer.

    By the way - quite a few of us have lost/avoided putting on weight while on pred by cutting carbs drastically. Slimming World probably won't work while you are on 60mg pred - but you will probably lose the weight once the dose is much lower as some of the weight is fluid retention.

  • Hi

    I truly sympathize with how you feeling I have the same problem with my right ear .GP seams to just fob me of but I found out this can be side effects of pred .

    As for spaced out was not safe going out on my own .Crossing roads forgot to look both ways was a nightmare shopping could not give the correct money and lost all my bank cards .

    Argued you black was white in one shop as I only wanted to pay a £1 for a item I was convinced I was in the £1 shop felt such a fool .

    And the fatigue first time in my life I have been able to stay in bed till 9.00am every morning just never had the energy to get up .

    Started on 15 Preds now down to 11 things are starting to improve so bear with it their is light at the end of the tunnel

    Rose

  • I really feel and understand your frustration. I had pmr at age 46, then 18 months later symptoms of GCA started. I had burning temples, jaw cramping, tongue pain with cyanotic patches and eventually pains above and behind both ears with scalp tenderness and pulsatile tinnitus. Despite all these symptoms my Rheumatologists refused to accept it could be GCA, and sent me to see neuro, ent and dermatologists. This was over nearly 2 yrs, eventually I had enough and asked my GP to refer me to an expert in Leeds. When my Rheumy heard this he referred me to the Prof who he describes as the "godfather of GCA". Upshot of all this is both experts agreed I have GCA. You'd think problem solved now we can make plans, but No my local Rheumy refused to listen to their opinions. So now I travel 300 miles to remain under the experts care. You certainly sound like you have GCA by the symptoms you describe, if the pains return on reducing Stop and consult your Rheumy straight away. I wish you luck and hope your path is less rocky then mine. I had hoped my Rheumy might want to learn from the experts, but apparently not. I have just turned 50, so you are not too young, and I do feel younger persons present very differently to the average 70 year old. Good luck and let me know how you get on. Cheers Runrig x

  • I am 56 yrs and currently taking 50 mgs Pred and Methotrexate. I have had head symptoms and large vessel involvement of my axillary and brachial arteries making my arms pulse less. 4 Drs told me I had migraine - be persistent if you know something doesn't feel right. Temporal biopsy wasn't done but a Duplex scan eventually was showing that I had odeema of my temporal artery, plus large vessel involvement in my arms.

    I was at least in the right treatment but from a patient point of view there is something about needing to know and to see clearly what the problem is.

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