Well, the biopsy shows no GCA in the 3cm piece of artery removed, so I'm going to take that! I realise that it may still be there, but I'm a cup half full person so this will do for now! Thankfully the 60mg of Pred is now being reduced by 5mg a week until I reach 30mg and then see GP for tests etc. I was well impressed that the surgeon rang me himself to give me the results, bless him. I had contacted his secretary to say how awful I was feeling on the meds. Anyone on high doses please accept my sympathy. I can honestly say that these past four weeks on 60mg has been one of the worst times ever, even worse than my cancer treatment. I feel totally wiped out still and am getting between 2 and 3 hours sleep on a good night, sometimes none at all! It feels a bit like a really bad case of flu! BUT we are progressing, so onwards and upwards...or downwards in the case of the Pred! Thank you to everyone for all your patience, support and encouragement on here. It has been such a help. When you are suddenly faced with something you have never even heard of before, it is a minefield of where to search and what can be trusted. Thankfully I was already with ThyroidUK on here so had a good starting point.
Have a good day and enjoy this beautiful autumn day.
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Good to hear let the journey begin . It's a slow journey the reduction timetable bit fast 10% reduction recommended it has taken me 55 weeks to come from 40mg to 0 . The sleep thing took me a long time to work it out but thanks to this forum worked it out
If you check my old posts easier then me putting it all down main thing family,friends on board be kind to your self Olive
Can I ask if you ever tried taking the tablets at nightime? I know this isn't usual, but I am so wiped out all day and start to feel better at about 7/8 p.m. I just wondered if I took them in the evening, as I don't sleep anyway, and then maybe I would have some better hours in the daytime! That sounds so simplistic that it made me smile! Why would anything about PMR make any sense!! I think GP has seen how bad the side effects have been on me, so she is seeing how it goes. Obviously she has told me about all the possible problems to watch out for and has told me to contact the surgery immediately if needed. Thanks for your reply.
I am so glad you have got a diagnosis. Most people take the tablets in the morning, but if it works better for you at another time you can always give it a try, some people even split the dose and take some in the morning and some in the evening.
One lady who couldn't sleep all night but was out of it during the day as a result tried taking her pred in the evening - the result was a better night's sleep and feeling human for most of the day.
Everyone is different, a bit of experimentation is often worth it.
Hi. I don't want to sound doom and gloom but my biopsy was an absolute clear negative too and then when I tapered off the Pred, down to about 15mg the head pains etc came back. I went for a PET CT scan and they found GCA in my Aorta. So as you cut down on the Pred if any symptoms come back please go and get it checked again X
Did you have a battle with them to get them to believe it could be GCA? A couple of us were discussing this yesterday - the literature says quite clearly that having a negative TAB does NOT mean no GCA (less than half are said to be positive) although a positive one is 100% confirmation. That is the basis I work on all the time - but a few rheumatologists have told patients that a clear biopsy means they don't have GCA - as you were. One expert in particular has been heard to say it - to patients who did have GCA according to other doctors.
Do you know whether the PET-CT just shows inflammation in the aorta or do they also see the giant cells that give the disease its name?
This is something we really do have to get sorted out and get them all singing from the same hymnsheet - and preferably the one that agrees there has to be some doubt until the patient has a PET-CT. It has to be putting people at risk if they are left with untreated GCA.
Another question - was it just in your head you had pain? Did the PET-CT show inflammation anywhere else besides the aorta?
Hi PMRpro... Sadly it was Prof BD who said I didn't have GCA because the biopsy was negative! He put me on Pregabalin for Neuropathic pain. Pregabalin had no effect so I went back without an appointment and more or less demanded more tests. I don't know exactly what the PETCT showed. At my appointment after the scan all that was said was "yes you do have GCA, we found it in your Aorta. Take 40mg of Pred for a month, then taper it down, any problems see your GP and we will see you again in 4 months". And so, I have been left high and dry with no information and with many side effects from the Pred ( or maybe the GCA) I have researched and now I understand much more and can ask the right questions. Good news is.... The 4 months is up and I have an appointment this afternoon. I just hope the Prof is there and not just his registrar.
Thanks. I wish you could be there with me! I have my notepad ... Filled with questions. I have learnt so much from you and this forum, pmrgcauk and I found the Vasculitis Foundation videos on YouTube very informative. So hopefully with my still limited knowledge I have the right questions. Is there anything you can think of I need to ask?
Are you going to be called for an echocardiogram and added to the AAA screening programme? There is an increased risk of aortic aneurysm in GCA, one assumes due to patients who had undetected aortic GCA - so the standard recommendations are for monitoring over at least several yeasr. It rarely seems to be done. In her book Kate Gilbert suggested this lack of monitoring is because nothing can be done if an aneurysm is found so doctors feel it is better not to worry the patient. That is - frankly - a long way from the real situation. That may have been the case even 10 years ago, things have moved on since then. I met a lady of over 80 recently who was diagnosed with a thoracic aneurysm while here on holiday. She returned to London and was successfully operated on (at St Thomas's I think). Physically she was full of beans. She had at least a stent fitted.
That is one of my questions. "What is being done to monitor the GCA? AAA and ECG, maybe even X-ray or scan? I don't know where in the Aorta it is, if it can spread and how quickly an aneurysm can form. Kate Gilbert's book is excellent, I have learnt a lot from it. Not just the physical side but also the psychological impact of the life changing diagnosis. GP has been doing a great job, looking at bloods and treating various infections and side effects. But I still think this is just papering over the cracks. In my mind I need to know (good or bad) exactly what I am facing and how advanced the GCA is and what, if any damage has it already done. And I didn't answer your other question before, yes it was just my head that had pain, no jaw pain, no vision problems. Just head pains with very tender scalp. I have had migraines all my life and also prone to "ordinary" headaches but these pains were quite different and I just knew there was something wrong.
So that adds to my question about what they found on the PET-CT - was there any sign of inflammation in the cranial arteries to account for the head pain?
Yes, I agree with you about papering over the cracks. IF there really were nothing that could be done about an aneurysm if one were found then fair enough - but that isn't the case nowadays. If you find one you monitor it to see if it grows and at a certain point it is better to deal with it. The AAA screening programme looks once at age 65 - I don't think that should apply for GCA aortic screening because it could start to form/grow at any point for as much as 10 years or even more in a younger patient so we should be checked every few years at most.
That is also an interesting point you make about the psychological aspect. I was watching a programme on TV here yesterday about the service they have here for hospital staff and also for patients with chronic illnesses - it is a hard cross we have to bear but we are left to our own devices. The support groups/forums can do a lot but they aren't professionals. The NHS doesn't help us at all, we don't even get a specialist nurse assigned as most RA patients do, nor a physio/occupational therapist which would be so useful to know what we can get to help with everyday living.
Hi PMRpro. Unfortunately the good Prof wasn't in clinic today (probably off writing papers on diagnosis and management!). Saw his registrar... My GCA isn't in the Aorta it is in the Subclavian and Axillary arteries. Why did they tell me Aorta? Because people know what that is and they don't know what or where the Subclavian is. No aneurysm detected. This would take about 10 years to form. Is my GCA in remission? Difficult to tell as CRP high but this is probably due to recent UTI and current Shingles attack. But as no GCA symptoms present he believes GCA is under control and dormant. What are GCA symptoms? Anything that is not normal. After 9 months on Pred it is difficult to tell what is normal. Yes it is difficult, but if you are worried about anything, call the clinic. Why do you not test for ESR? we find it unreliable and CRP is a much better indicator. What are you doing to monitor GCA activity? CRP checks. AAA? repeat Scan? These are expensive and it is not good to expose the body to too much radiation, but in 6 months to a year it is probably a good idea to XRay. Why are my blood calcium levels high, is the calcium leeching from my bones? Calcium levels are a bit up and down, tests PTH suggest slightly overactive ParaThyroid that normally would go unnoticed. Levels are not at a stage that need treatment. Could the high blood calcium be a cause of my recently diagnosed Hematuria? No, not unless the CT Scan (had Tuesday) shows Stone. Is the Hematuria anything to do with the GCA or Pred? No. Do I need a Dexa Scan? Not yet, last one done 18 months ago, we will wait for the 2 year mark. Why don't you check cortisol level before putting people on Pred to get a normal baseline? The tests are expensive and wouldn't help in the treatment. How do you know what my normal is, average normal is 7.5 but if my normal is 11 or 12 it might explain my difficulty in tapering below 10? And from speaking to others Stress, good or bad can cause Flares. Even good stress such as big social events can impact......Very interesting view, but we only take into account physical stress not emotional (me) well I think you should consider this more. What is the difference between GCA and Tak? Age. So a young person gets Tak and an old person gets GCA. Yes. Why is GCA put with PMR when there are much closer associations with Tak? It has always been that way. .............
So I got most of my questions answered...hope you can follow the abridged version of Q&A... He is seeing me again in2 months. As an aside he knew of the Vasculitis Foundation but had never watched their seminar videos. I suggested he would find them interesting and informative. I also told him I was carrying on with my research so would probably have more questions for him next time we meet! Bet he is looking forward to that! Hope this info helps... I do have a diary from first presentation to GP, if this would help happy to send you the timeline.
Just re read your previous post. They did not detect Giant Cell, only inflammation in the Subclavian and Axillary. I asked why I got the head pain and he couldn't answer. No abnormality seen in the carotid or cranial arteries. You may think this silly... But I am a great believer that the mind is the great powerhouse. Maybe the body was telling me of a problem with Subclavian and I didn't understand. But my father suffered numerous Stokes before he passed and I do have a history of Migraine ... So pains in the head I will take notice of and seek medical advice. Body and mind giving me an alert to something serious?
Hmm - interesting - and do I detect a fudge of "How can I shut this woman up 'cos I have no idea what the answer is and I'm not admitting that..."
So: you can be exposed to an x-ray (radiation load) but not be sent for an echocardiogram and AAA screening - both ultrasound with no radiation load. I'd love to have costings for this.
Totally agree with you on the radiation thing. Absolute nonsense, it all comes down to cost. Although he would not admit to that. And yes I did detect a "will this woman shut up" To make matters worse he did have a colleague in with him, observing. Not sure if junior or senior but I was watching him and he was very interested in the Q&A.. I am still not sure if he thought I was a pain in in bum or pleased I had done some research ... The questions I had on the immune system, macrophages and T and B cells completely threw him! I know how complex the whole thing is and you have to study for years, but I think we can help in the much needed research. I also asked about the demographic of GCA patients. I have a theory that the whole thing is Stress/hormone related. That it is predominate in women over 50 who have led successful lives with career,social and family standing. Who live life in the fast lane and then when natural hormone changes occur... Something has to give? Just a theory and I know it affects men and younger women ....... But I think there maybe something in my random thoughts?
"Why are my blood calcium levels high, is the calcium leeching from my bones? Calcium levels are a bit up and down, tests PTH suggest slightly overactive ParaThyroid that normally would go unnoticed. Levels are not at a stage that need treatment."
He may not think so - but I'd rather see an endocrinologist to make a decision on that:
Wow! Thank you so much for this. A few months ago when he said my blood calcium was high I (in my naivety) said is that because my diet is high in calcium and I am taking AdCal. He's said yes, stop taking the AdCal. I did do a bit of research on high blood calcium which is why I asked for re test on calcium, Vit D and PTH and posed the question again. I will discuss this further with my GP! Reading through the symptoms is very worrying, I have about 75% of them but have put it down to the onset of GCA and the Pred side effects. Really begining to wonder now if I really do have GCA? The inflammation in the Subclavian and Axillary could be caused by build up of calcium!! and the recent Kidney/bladder problems and investigations could also point in Hyperparathyroid direction. I am coming to the conclusion I know much more than the Registrar. I know he was wrong on the Shingles Vax question! Thank you again for this. I have no idea what the exact blood reading figures are but I intend to find out and if necessary get to refered to Endocrinologist. x
I'd want to see an endocrinologist anyway - I have a rather limited level of trust in GPs. They have to know too much at too low a level.
Subclavian steal syndrome is something that should be ruled out in GCA and vice versa - but I don't know much more about it. I'd have thought the scan was fairly significant in terms of the inflammation.
Thanks for that. My GP more or less said the same and is very cautious. She is planning to stop pred reduction at 30mg and review everything then. I do feel that she is very aware of the pitfalls. She is a new registrar so seems pretty well informed! Long slow journey I think, but at least it's moving now!
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