My MRA scan result shows what appears to be stenosis in my Aorta. That is a narrowing of the Aortic Valve. Caused by inflammatory Vasculitis. This is damage that we take Prednisalone to prevent, as well as to feel better. I don't know much more than this yet, the Rheumatology Registrar just phoned. I will be having further tests - ultra- sound to confirm this diagnosis. Apparently the MRA result was not a high quality print out. If it's confirmed there may be an argument for Actemra, she said. I apparently need something stronger to knock out the inflammation.
Any shared experience would be welcome, hardly dare google yet.
You wonder about all the undiagnosed months- years maybe.
Keep taking the tablets!
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SheffieldJane
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I think I posted about having different readings from each arm when having my ( raised) blood pressure taken. Fortunately Dr Mackie's team investigated further with the MRA scan.
I think you have me mixed up with another poster, you talk about Amloadapine, I know nothing about this drug, my name is Eileen, and am the Kentishgirl.
Hei Jane. Sorry to read about Aorta Stenosis. Do hope it’s early stages, or not stenosis at all ( unclear MRA). Had to Google and it turns out that our King Harald had aorta stenosis surgery i 2005, and he’s in excellent health at the age of 80. He never had any symptoms, but i guess his med chechups are slightly more thorough than most. Made him stop smoking though. Anyway, what I read on stenosis in aorta in Norw med info, surgery is not complicated, and that people live just as well and long as the rest of the Norw senior population. I can’t see that the stenosis that comes with age - is necessarily related to inflammation/ auto-immune desease. There’s sth called calsium build up.. But, yes, It really is argh!, and I can easely feel the fear/shock you must have felt during/after that phonecall..- but remember you are in the safest of hands. I wish you all the best Jane, and want to thank you for all the info, help, care you share here. Stay strong, and try to Enjoy the weekend. Sending positive energi 🌻
I can't do more than copy the link from this preview of a medical book in Google. But, you may also have GCA. Biopsies aren't everything. My Rheum says that in Sweden they rely on that blue halo effect of an ultrasound of the aorta. But, he said that only a very trained eye can see them.
In the USA it has to be a biopsy, even though mine looked like a duck, walked like a duck... Incidentally the PMR was confirmed by my complaint 4 months earlier of being unable to lift my arms to get out of bed. Although, at the time when I saw a Physiatrist, a Physical Medicine and Rehabilitation doctor, for an old injury. He found no dislocations of the discs or shoulder joint issues as it was later in the day.
I probably had PMR a lot longer since I used to lift my leg to get out of the car by pulling my leg up by the pants as I was so stiff. I thought that getting older leads to stiffness. And driving long distances and sitting was a common occurrence.
I now think that we patients have to educate our doctors to follow up with our major vascular health. In Sweden a large study they found that 10 years after "successful" treatment of GCA there was cardio vascular disease. I even found an article that at one time in the UK Actemra was not approved for GCA. They sited a case where a man had successfully been treated for GCA. He had a heart attack and died. On autopsy they found he had active GCA. My take away is that they don't do enough kinds of tests to know if our treatment is "successful".
The point being there are next to no tests that show that beside (now) PET scans. But being on any quantity of pred is enough to suppress the positron emission and you may get a false negative. They cost a lot and have a high radiation dose.
Actemra hasn't been approved for GCA for more than a year anywhere, including the US. The UK decision in 2016 to not approve it earlier was based on the lack of evidence it worked. That became available a few months later but it is so expensive it is only used on a case by case basis as yet.
It is approved by our FDA. My Rheum & I discussed it. It's to decrease how much Prednisone taken. Just like his other patients with autoimmune conditions, he says he goes to these expensive drugs after being unable to decrease Pred or unable to control the condition. My ophthalmologist read about it in his Ophthalmology Journal & called me on a Sunday. There are side effects that my are possible & my Rheum doesn't seem comfortable with using it as it is newer than other injectable drugs he uses for Rheumatoid Arthritis.
It sounds like you have an opthalmologist and a Rheumatologist that you trust and can really talk to. That is a great gift in all this. For myself I am experiencing information overload and really do not have the necessary background to interpret medical papers. Fortunately I have a Rheumatologist who is a leading light in this field. I must put my trust in her and the angels.
SheffieldJane. So sorry to hear about yet another complication to contend with. Just too much. Glad you had the wisdom to test the blood pressure in both arms. I did ask the nurse at my last visit to do just that after reading your post a while back. Didn't even know what the implications of different readings might be.
Please accept all my best positive thoughts. This disease can be a beast.
O Dear ‘lady Jane’ as if you don’ t have enough already to cope with! I have no experience with that, but I looked at mayoclinic.org and even your heels can have to do with it. I hope the treatment is easy and you feel better afterwards. A warm and friendly hug
Oh Jane, I keep saying "Whatever next?" and this is your 'whatever next'.
You are in the good hands of (y)our rheumatologist, so let's hope that since you've been on prednisolone, no new damage has been done. As you imply, this could have been caused by untreated inflammation.
Let us know the outcome of the tests.
You are the first to give hugs, so here is a big hug for you.
Dear S. Jane...so , so sorry to hear about this new complication to the “dragon” disease PMR /GCA that you are struggling with now. How scarey for you. You are always so cheerful and helpful to all who post on this Forum so it is now your turn to accept all of our cheerful , kind and loving thoughts for you concerning this new possible struggle. Hopefully, after further testing and retesting the results may show it to be easily treatable. You certainly are presenting a picture to many about how destructive these untreated autoimmune inflammatory diseases can potentially be...hopefully it will impact many who are resisting Pred. We are all rooting for you !
Sorry to hear this........and hope you get the right treatment. You have a !lovely Christmas to look forward to.......focus on that.☺.....keep us posted.....
So sorry to hear that you have this additional problem to deal with. As others have said, you are in good hands. All of our thoughts, wishes and prayers are with you. Keep positive & ask for any support that you need.
Oh dear Jane. Poor you! How do you feel about it? I'm so glad it's been diagnosed and that there's a plan to help you. They'll need to give you as much information as possible so you know what to expect. Good luck. xx
I am sorry that you are having to deal with this new complication. I do hope you get further investigations carried out as soon as possible so you can start the appropriate treatment. My good wishes.
I'm sorry to hear of this complication. Please keep updating us. I would never have thought to check blood pressure that way. Hopefully the next test will bring good news.
Hi Jane - please accept my sympathys as well. I too suspect I had GCA a fair bit longer than we first thought, and by the time it was finally diagnosed my aorta was in pretty poor shape. The latest MRI/CT scan shows most inflammation is under control with pred and mtx, possibly even in remission. But localised inflammation remains in my ascending thoracic aorta and is causing narrowing and enlargement at a disturbing rate. I'm seeing the surgeon today, who I think is going to offer me arch replacement surgery if it's feasible - but it could equally go the other way.
I hope yours doesn't get as bad as mine and the best I can suggest is to ensure they keep on top of it with regular scans and measurements, and if they think actmera will kill the inflammation then go for it. Valve surgery is pretty routine these days, and unnerving as it is, I do hope that's all you have to worry about. Thank you for all your cheery supportive posts and I wish you all the best of luck.
Thank you Brantuk! I was puzzled when she said I needed something stronger to zap the inflammation. As far as I know my last CRP and ESR bloods were normal. Of course the inflammation has localised in my heart valve. She has said stay on my current Pred dose (7 mgs moving to 6 mgs) and don't decrease or increase. Don't understand that either.
Please let me know what happens with you and how you are. I am a " need to know everything girl" even though I obsess and panic at times.
Equally I will continue with my tales of the unexpected.
I obsess and panic a bit too....it gets me nowhere! Keep calm with some relaxation breathing each day to try and get some perspective....it helps me to do this. Take care of you xx
I agree with Diane3 about the obsess and panic. It just makes things worse, but is understandable. As a retired nurse-attorney with either GPA ( C-ANCA + and/or PMR with GCA, ) I research too much and stress myself. Emotional response, subconscious or conscious is physiologically damaging. But I do it to myself too. I clench my teeth all the time.
My mother had aortic stenosis, and had the valve replaced, but never had an autoimmune disease; so, it may or may not be related to vasculitis per se. But just the aging process itself is a process of inflammation with or without a diagnosed autoimmune disease.
I worry about cardiovascular issues; I had temporary vision loss, I presume from temporal arteritis ; No doctor or nurse has ever taken blood pressure readings in both my arms.
Best wishes from the chaotic United States; take deep breaths through the nose and exhale as much as you can; great for stress. Watch a good movie or something that makes you laugh; also great for stress.
Hi Brantuk...Sorry to hear about your condition. I have been on Pred for just over 3 yrs for Gca. Yesterday was my 1st day Prednisone free. I have been diagnosed with ascending aorta aneurysm. After going to Er in August I learned about this and needless to say, I'm shocked. My Cardiologist told me he was watching it and didn't want to cause more stress for me dealing with GCA. I have 2 leaky valves for many yrs and always get ultra sounds and was being watched. None of my ultra sounds showed any signs of aneurysm until 4 months after starting prednisone. Thoacic surgeon's told me combination of both Gca and Pred caused this. Prednisone makes it grow faster. Now that I am off that dreadful drug and in remission, I now have a real life threatening issue. Had another CT Scan yesterdsy, gathering all my CT dics, ultra sounds, records and going to hopefully the best hospital that does this type of surgery. Don't mean to frighten anyone, but beware of these drugs. I will need open heart surgery to remove the aneurysm and repair the 2 valves. Not handling this this well for fear of eruption. I know some will say not caused by prednisone, but it is the main culprit. I wish you good luck and speedy recovery. .Bert403
Thanks Bert - and yes I too remember my shock when my aorta was first diagnosed. Unfortunately it was well advanced even before I was prescribed prednisalone, so I can't honestly comment on whether the drug promotes growth or not - I guess we're all different and react to drugs differently. But they should've told you about it rather than hiding it from you behind the excuse of "stress" - not fair at all. But before pred was discovered, GCA was a certain and quick death sentence. The prospect of surgery is very frightening I know, but they can work miracles these days. My fears were allayed at my visit with the surgeon today so do hang in there my friend, there is good reason to be optimistic of a normal post op life. Meantime avoid anything that strains your system, especially heavy lifting. All the best and I hope it works out well for you.
Thank you Brantuk. I also wish you lots of good luck. Do you know what size your is. Mine is 4.7. They say it needs to be 5.0 to 5.5 for surgery. I was reading Texas Health Instituteand the ascending aorta aneurysm should be taken out asap. That's what got me so upset. The descending and abdominal needs to be a certain size. So in the meantime I will go to the Mayo Clinic in Jacksonville Fl to meet with the surgeon and see how it goes..once again wishing you well. Bert403
Regarding sizes Bert - my ascending aorta is at 5.1cm and my abdominal one is 5.3cm. A year ago they were 4.7 and 4.9 respectively, and there has been 2mm growth in the last 5 months alone. These tubes should be between 2.5cm and 3.5cm in a healthy body. Normally our UK surgeons operate on anything over 5.5 as a matter of course - but if there is rapid growth like mine they act sooner to avoid risk of rupture. For me it's academic, if I don't have the surgery I'll be toast within 18mths to 2yrs. Now you're off the pred and gca in remission, if yours stays at 4.7 and doesn't grow then the need may not be so urgent as mine - but it does need very close monitoring. Hope that helps you cope a bit better Bert.
Brantuk...I didn't realize you have ascending and abdominal. Wow. How long do you know you have this? You must be so frightened, I know I would be ...I am at the stage I'm at now. Freaking out. I just don't understand why they just don't repair at this point, when eventually it will have to be repaired. Why should we have to live with fear of rupture? I have pain in upper back between shoulder blades and in chest, also when sitting at computer or just in a straight chair my neck at the lower left side gets a burning sensation. Do you have any if these symptoms or different ones? Also how often do you go for CT scans. They told me every 3 months, but I went this time 2 months. I think they wanted to calm me down, I really want it repaired now. So frustrated. ..sorry for all these questions, but I never knew anyone with this issue. Thank you so much for taking the time to answer..bert403
Wishing you well Bert. This must be a frightening , worrying time for you and your family. I hope everything goes perfectly for you. Well done for getting off Pred. Completely. Glad your GCA is in remission. Sorry that there is all this repair work to do.
Thank you Sheffieldjane...it seems never ending...not sure yet when all this will take place. Getting off Pred is wonderful, but with all this stress, I'm afraid of a flare.. Lots of planning and Dr's appts. Good luck to you as well. Bert403
Yes we will get thru this...i was really feeling so hopeless and after chatting with some of you on this site...you realize your not alone ...so very helpful..best of luck..bert
Hello Bert: I am so sorry about this bad news and just when you had every reason to believe you were healed. note of what I hope is encouragement. I was the primary care taker for my boyfriend ( now a friend) when he had open heart surgery for an ascending aortic aneurysm and a new aortic valve (pig) ten years ago in Denver, Colorado. He had 3 inches of his aorta replaced. His was caused by a congenital issue...bicuspid valve and a syndrome that I can't remember. One day he went to a clinic feeling lousy with a sore ear. Sure enough his eardrum was blown. But they didn't seem to be worried about his ear. A sharp nurse had taken his pulse and then she sent him via ambulance to the emergency room. His heart was in afib. Two days and many tests later, he had his diagnosis. Sixty days later, and still more tests, he had the surgery. The first weeks were truly difficult. But three months after surgery he was back to running canoe trips in remote locations. 10 years later, still on blood thinners, he is doing fine. Some day he will have to have his pig valve replaced but this time it will be done laparoscopically. To prepare for surgery take good care of your body and lungs ( Joe smoked occasionally which did not help him post surgery). Best wishes to you!
Thanks Rosedail...sorry your friend had to deal with all of that and you too. But it is encouraging to hear some good outcomes...it really made me feel more hopeful...thanks again...good luck to you..bert
Dear Jane, you're always one of the first to post compassionate and honest words when people ask for help, time for us to return to you the warmth and hugs ((((Jane)))) you so deserve. Such a shock for you, I'm so very sorry.
I know from your posts you have to deal with anxiety, too much round and round thinking (me too!) but the prospect of being in good hands with more tests means you're in a positive process towards fixing it. Courage to you and please let us know how you get on.. the very best of luck, we'll all be thinking of you. xx
You have been so thoughtful in replying to my own concerns, I just want to let you know I'm sending you a really big hug and lots of good wishes and prayers. I know from my husband's experiences that there are many wonderful treatments for these conditions so continue to be positive and remember that all of us here are thinking of you.
Only just read your post SheffieldJane. You've had lots of replies, which is no surprise bearing in mind all the help and advice etc that you give to this forum.
I'd just like to add that my thoughts and prayers are with you, and that I hope very much that whatever treatment you have, things will start to improve for you.
Again I can only thank people for their helpful and thoughtful replies. Each one has helped in a different way and the very fact that people take to their screens and offer care and comfort is a very healing thing. We are lucky to have found this oasis of love in a mean , uncaring world. I'll keep you posted. The key lesson is that we cannot muck around with PMR and GCA, they are serious systemic diseases with potential consequences. We all need to be vigilant and seek the best doctors we can find.
I fully intend to stay on here and follow other people's journey as usual.
I am so sorry to hear that you are having to deal with another serious health issue in your life right now. I am still only learning by day by day & reading here just how complicated this PMR can be. Right now I am dealing with other issues myself, are they PMR related? I have NO idea. But I am being treated with a new medication for PARKINSONS, do I have PARKINSONS? I have no idea about that either. But if this med works & helps my shaky/ jerky legs & tremoring hands & Arms (says the doctor) she will have a better idea.
I started on 15mg in June, am still on 15mg, never started tapering yet, I have never been referred to a rheumy or Neuro. All I keep hearing is, I am a COMPLICATED patient.. surely if I am so complicated I should be referred on..
I do hope that you get all the help you need, you have been a good contributor here for us newbies as we come along. Your posts are always very helpful along with others of course, what we would do without you ladies here I just don’t know. So get sorted, we need you here. Sending a big gentle hug..
Thanks for the hug Kate, back at you. I agree, your case should be in the hands of a specialist, not wrapped in a parcel and tied with a bow by your GP first. Insist on an appropriate referral. As I said to daworm, be a nuisance. Our generation is just too polite!
I think that you definitely need a referral to get a diagnosis. It doesn’t sound as though your current medication is working, including the prednisolone. Push for a referral. If this doesn’t happen you can get a private consultation if your finances allow. This I often done to get a consultant opinion and if anything is found, you can be referred back to the NHS for treatment.
And that is exactly why I obsess at times that "they" are missing GCA or vasculitis with me...stay strong...did you seek out the MRI or did you doc call for it for symptoms you've had? Either way it's caught and known about now so it can be dealt with..
Hi daworm, My Rheumatology Registrar spotted that my raised blood pressure showed a significantly different reading, consistently, for each arm. When I reported this to one of the never ending new faces in my GP's practice she kind of " eye rolled" took left and right readings, declared everything the same and normal. Thank God for the persistent and the curious!
The Registrar booked me for the MRA or MRI scan ( I heard it referred to as both) . If I do indeed have a narrowed Aortic Valve due to inflammation damage ( like Rheumatic Fever in children) she may well have saved my life. Ordinary Cardiac Tests have not shown anything that caused concern. My irregular heartbeats ( like you skip a beat) have been declared "common and harmless".
I have not posted before and have not lately been regularly checking posts but feel I must offer you what I hope will be some encouragement, Jane. When I was first diagnosed with PMR I was very reluctant to take steroids and soon after I eventually did , my blood pressure was found to be very low and difficult to record. Still find it difficult and rather stressful to get into the long story of last couple of years or so but I want to tell you that while a CT Angiogram found damage in the aorta on one side at first, another after six months on MTX 15mg and pred 20 initially, a further CT Angio revealed the artery had recovered. The inconsistency in blood pressure readings over the last year too has more or less gone away although it remains low. I have been very lucky in the care I have received from both rheumatologist and vascular consultant (who originally called me rare and interesting!) and I hope you too will find the support and care you need. You sound as if you have faith in your Rheumatologist. Keeping calm is so difficult but stress definitely makes one feel so much worse. Take care and Good luck! I suppose I should add that into almost the third year now like lots of others I am stuck on 7Mg of pred but I have resisted offers to up the MTX although I have been lucky and have not found it hard to tolerate.
Thank you so much for returning to the site to give me comfort and reassurance JDM72. I feel honoured that your first post was for me. I hope you stay with us from time to time, you clearly have a great deal to offer. I hope I am a rare and interesting case too and when they finally give me an ultra sound on the arteries there is nothing to see but a well behaved heart.
I am stuck between 7 mgs and 6 mgs, I find the low level flu type symptoms are back on 6 mgs, I am so freakishly tired now, always nodding off and waking with a start! The good news is that I have no PMR pain and I'm as bendy as I ever was, I can touch my toes.
To an extent I can walk off the exhaustion and all this sleep and Pred plumping makes me look quite young ( I delude myself too).
I don't think I can argue for an Adrenal Function test, I have read that there are doubts about its accuracy and I certainly don't want to be on Cortisone for life. I think my Rheumie might do it at 4 mgs, which seems as far away as outer space to me right now.
Interesting that you got on with MTX I kind of dread it but see it looming.
The synacthen test doesn't necessarily condemn you to pred for life - it shows whether your adrenal glands are CAPABLE of producing cortisol. If they aren't and you continue to reduce regardless you could become very seriously ill. If they ARE then you just have to keep going slowly and hope there isn't another problem holding them hostage.
Sarah won't do it until I get to 4 mgs PMRPro. If I can get to 5 mgs I like that doctor's idea of staying there for a year. It kind of makes sense. It took us a long time to get this sick after all.
I'd just like to see a bit of flexibility as to when it is done - once the patient is experiencing increasing rather than decreasing fatigue seems a good measure of how their adrenal function might be impacting. After all, a 90% person will do far better than a 50% person on the same dose.
I will make the argument. I have a third of the energy I had 8 weeks ago, measurable by the Fitbit. Thanks PMRPro. I will try the GP initially, without much hope though.
Heavy cold and cough I feel as if I've been felled by A brick , don't even think it was the PMR making it worse , rest of the family all had it 5 days and on the mend , me into my second week and still feel dreadful !
What is the synacthen test? Before my diagnosis of GPA and/or PMR/GCA, I was told, only by 2 integrative medicine physicians that I suffered from hypothyroidism and adrenal "fatigue", or as they put it, you are running on an "empty gas tank." I did not know there was a test for adrenal insufficiency. My understanding was this adrenal fatigue was caused by stress. At that time, I was also suffering from hyperparathyroidism, but did not know it then.
It's true that my initial response to 16 mg. of methlprednisone was nothing short of a miracle; pain free, good energy and mood, lasted about 7 months until a vasculitis specialist at Johns Hopkins suggested tapering. But, every time I have attempted taper as recommended, I regress to original symptoms and then some. Is it worth pushing for this test?
My rheumatologist is pursuing the right treatment, consistent with those on this site, but admits he has "come across "only two other PR3 positive patients in a long career, and as a "so-called" top doc in Castle Connely and in our Delaware Valley Philadelphia magazine which is based on peer review. However, he did test for it, and was not anticipating a positive result.
Any information you could give would be helpful and appreciated; while I do not feel any other nasty side effects from the methylpred, or methotrexate, I hate the weight gain. At just 5 foot with a small bone structure, I need to exercise , but still feel too fatigued to resume after 20 years as a dedicated gym goer; aerobics, weight lifting , yoga, pilates; it's been too cold and windy here for walking.
But I am interested in knowing more about this synacthen test? Thanks for your help in advance or from anyone else who has knowledge of it.
PMRPro is the expert you need, she is our medical scientist. All I know about the Synacthen Test is that it is a test to discover whether your Adrenal Glands are capable of producing Cortisol. The use of steroids ( Pred) makes them stop producing it because the body senses that there is plenty. It is hoped that the Adrenal Glands start to produce Cortisol once you get below 7 mgs of Pred (7 mgs is what a normal body will produce). In rare cases the Adrenals do not kick start and the patient has to take Pred or synthetic Cortisol for life. Symptoms of extreme fatigue can sometimes indicate that this has happened.
People on this site have got the weight thing under control by cutting out carbs and sugar. They are the big enemy and metabolise differently when we’re on Pred. This leads to sugar and carb cravings and it all becomes a vicious circle.
The synacthen test is to assess whether your adrenal glands are CAPABLE of producing cortisol - not whether they are doing so on a continuing basis. The baseline blood cortisol level is measured from a blood sample taken at 9am, an injection is given that should stimulate the adrenal glands to produce cortisol and a second blood sample taken 1/2 hour later to see if they have. Sometimes they extend the length of the test and take more samples. The baseline cortisol level is affected to some extent by you being on pred - but the stimulation should occur.
You say the symptoms come back - when? Immediately you reduce the dose? Or after a few days? By how much do you reduce at a time?
It is perfectly possible to lose weight while on steroids by cutting carbs drastically. Many of us have. You don't have to exercise - just change how you eat.
Hi Jane - just a quick update seeing as you were kind enough to ask. I saw the surgeon today and yes - he said I need the arch replacement surgery which is being scheduled for early January gulp! The good news is that he is confident it will be successful, and will last for the rest of my natural life. I need to have further pre op tests to determine exactly what else is required - my abdominal aneurysm will also need repairing, so it may ultimately be a triple bypass operation.
Fortunately my heart is in good shape, unscathed by the GCA, and he has enough healthy aortic material left to work with. I broke down in the consultation - probably due to the stress built up over recent months - but I'm just very grateful there's something they can do. I'm still in a bit of a daze over it all, and my poor wife (who has been steadfastly going through the mill with me) is considerably relieved I'm glad to say.
Bless you Brantuk! I would take all of that as good news. Nobody wants an operation but the comfort of being safe with the condition understood and rectified will be immense.
So sorry to hear about your latest complication. You will just be beginning to process it I imagine. If not still in shock. You are an amazingly upbeat member of our GCA/PMR family. One of the Aunties. You are sensitive to others and offer wise and considered replies to the posts of others. It stands to reason that alongside that big heart there is also Sheffield steel. Please lean on us. We are here for you as you are for us. Take advantage of those of us who do not sleep well. That means a 24 hour response. The 5th response service. I believe the AA Have claimed the 4th. Sending you good wishes and hoping you are back on track soon xxx🌷🌹🌺
I hadn't seen this thread till now. My thoughts are with you, Jane. It could happen to any of us on here, so thank you for reminding us to be vigilant, it's not just headaches and changes in vision we need to worry about!
You seem to have great doctors and all these people on here wishing for your prompt recovery .. All the good vibes you always send out will come back to you, I'm sure , to help you through this.
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Dr.: You don´t have PMR and PMR is not a disease in the muscles?!
Can PMR be triggered by exposure to electo-magnetic fields?
I cannot blame the PMR
PMR second time around!
