My main symptom related to my current conditon has been a constant headache with pain and tenderness over my right superficial temporal artery. This constant pain has been present since approximately mid March 2015. Between July 2015 and November 2015 I have experienced a new onset on progressively worsening fatigue, shortness of breath (I easily run out of breath walking fast or running, and my chest feels heavy at times and I occasionally get chest pains), lethargy, muscle weakness (it's hard to get out of bed, lift things, walk up stairs or hills, exercise at all like I used to), and inability to concentrate and focus mentally (my brain seems slow and tired). Keep in mind I have not started consistently taking high dose prednisone yet as I am waiting for a temporal artery biopsy on December 1st and do not want to obscure the results of the biopsy (I do not have visual symptoms at the moment, but will seek emergency medical help if I do). My question to the forum is:
Are extreme debilitating fatigue, muscle weakness, cognitive issues, and shortness of breath really common in GCA? Or could I have something else more systemic such as Wegener's granulomatosis or polyarteritis nodosa that seems to have evaded a proper diagnosis with blood tests (kidney and liver function, inflammatory (ESR, CRP), and ANCA tests all normal)? I seem to have anxiety about whether or not my illness really is something typical of GCA or something completely different that the doctors might not understand and therefore not know how to effectively treat (really unfortunate that's the case since I'm almost suicidal with the pain, insomnia, fatigue, weakness, and inability to do anything I used to enjoy etc). I will know more from the biopsy results I hope and will report back what they find. Right now I'm just sitting in a couch and find it's difficult (not painful, just feel weak) to lift my arms and get out of the seat and move around. I feel like a vegetable which is just so atypical of me (high school 3 sport athlete, state wrestling finalist, straight A student in high school and college, and then excellent engineer working in a fast paced environment).
I think all of the above is possible you could have GCA without having an elevated sed rate you also could have GCA without any evidence in the temporal artery. Sometimes this diagnosis is never proven and just the symptoms are treated. I think you will find once you start the prednisone the pain will let up . At least mine did. You will know within 48 hours of taking the first set of medication Personally I think it is a mistake to wait. You should have been on prednisones from the get-go . Good luck to you I'm sure he will keep us informed.
Devin, I too was suicidal not so long ago, but thanks to the people on this forum I persevered. I am now on treatment for GCA, steroids have diminished pain and mood is so much better. I was only diagnosed /GCA in July this year, so I think you are at the same stage I was at 6 months ago. Honestly Devin time and treatment does work. Stick with for a little longer, you will get there.
Sounds like you're a fighter Devin, not one to lose so don't let this insidious illness win.!
I was diagnosed in fall 2014 after at least 2 years of polymyalgia resulting in significant weakness particularly in my legs. Fall 2014, i developed severe headache , fever , vomiting and was diagnosed with GCA which was treated with 60mg prednisone daily. I did improve immediately but the shortness of breath and fatigue were extreme . I later had 2 relapses and was put on methotrexate also. no more relapses but very poor quality of life .
Then a miracle , a nurse practitioner shoed me an article from Neurology by Don Gilden MD et al at the Univ. of Colorado Department of Neurology. The physicians there started me on Valcyclovir an antiviral drug and I began to immediately improve and within 2 months was off prednisone and methotrexate in 8 weeks. It is now june 2018, I am 69 , work part time, have near normal exercise ability and no further relapses.
Dr Gilden unfortunately died at 78 while Department chairman and having published over 400 papers on viral neurological infections. Maria Nagle MD carries on his research at Colorado. if interested see Feb 2015 Neurology( professional journal).
note Valcyclovir is generic , inexpensive and safe, but your rheumatologist will be skeptical or hostile , it is however we patients who suffer , don't be shy or afraid to find another doctor.
Dev when reading your post I could have been describing myself. I like you had normal bloods, but suffered from dreadful fatigue, shortness of breath muscle pain headaches and temporal tenderness. I was prescribed pred and the pain subsided. I do still get out of breath and suffer fatigue if I do to much but things are much better. Try and hang in there things will get better
Devin. We have every symptom in common. I was diagnosed in September, had a biopsy which showed I had GCA within 2 days and was put on 60 mgs Pred immediately. Other than the fact that the pain in my head went away, and eventually also the ear and jaw pain, I am still exactly the same as regards the complete and utter exhaustion and the breathlessness. I can do very little although my sleeping pattern has mostly improved a little, but every day I wake up hoping I can do something, only to find I am no different. I am at the moment down to 35 mgs Pred and hoping that as I reduce, I may start feeling stronger and able to do more. Sorry I can't be more positive, but I suppose it is still early days.
All the things you describe are typical of many autoimmune disorders - and the large vessel vasculitides of which GCA is just one are almost certainly autoimmune in origin.
However - even if it IS GCA, even if the pred deals with the inflammation and relieves the pain, it may not do a great deal about some of the other things, especially fatigue and brain fog. You will just have to wait and see how it all pans out - I know that sounds very heartless but that is the bottom line. Very little can be predicted - some people feel fine on pred, others don't. The primary aim is to reduce the risk of loss of vision.
The names given to the various illnesses are to a great extent defined by the blood test/imaging/histology results in combination with the symptoms. Wegeners was the name given to a constellation of symptoms by the guy who described it originally in the 1930s. If you don't have at least some typical symptoms of Wegeners then that isn't the right name for what you have. The same applies to most of the other things. And just like a solving a mathematical equation, you have to do thing in order. Finding a "negative" or even "positive" result isn't always the immediate answer, it is all part of completing a jigsaw. Many of the bits are unrecognisable, particularly in the early stages, and even when you have identified a name for what it is, the best that can be done in many cases - GCA still being one - is to manage the symptoms until the autoimmune cause burns out.
I do realise how awful what you are going through is - but not so very long ago the average time to diagnosis of an autoimmune disorder was something like 10 years. If your fear is of Wegeners, you would be better seeking advice on the Vasculitis forum on this site. This forum and support group is principally directed at patients with GCA and PMR so we are not familiar with the characteristics of the other diseases. Just because your doctors seem stumped does not mean they are not familiar with the other vasculitides and the rheumatologists do see and deal with patients with them quite often - relatively speaking that is, they are rare diseases however you want to look at it. I think you are doing quite well to be honest if they decided to think far enough outside the box to do a TAB in a 23 year old. There is a form of juvenile temporal arteritis but it is different and is also identified by a TAB. Maybe they are thinking about that too.
Devin, although most, if not all, of the symptoms you are experiencing can commonly be found in GCA, they can also be found in many other inflammatory illnesses, and some can even result from treatment with Prednisolone/Prednisone itself.
I experienced fatigue, muscle pain/weakness, head/temporal pain with blurred vision and facial swelling, jaw pain on chewing, vomiting, sudden and fast weight loss, low grade fever and low mood prior to PMR/GCA diagnosis. Most of these disappeared as if by magic within hours of my first 40mg dose of Prednisolone, apart from the fatigue, muscle/pain weakness and on/off blurring of vision.
I do hope that the biopsy will give you a definitive diagnosis (if not, then chase a PET/CT scan) - you only have a couple more days to wait now, so chin up for just a little bit longer. In the meantime, if you can muster up enough energy to get yourself off the couch and out for a walk in the fresh air, no matter how short, you may at least find that that helps to lift your mood/raise those feel-good endorphins!
I have PMR and GCA diagnosed September & October this year - wasn't allowed a biopsy due to infighting between hospital depts who said I had missed the window of opportunity by the time they sorted it out as I'd been on pred for 5 weeks. Its just been accepyed that I have GCA. I had all of your symptoms. The headache took 5 days to go after I started at 60mg but the brain fog and fatigue have taken much longer and still come and go. Breathlessness occasional now. Most problematic is muscle weakness, dizziness, vision blurring and tiredness.
I really suggest that you think again about waiting to start the pred as even without taking it you could get a negative result and in the meantime your sight could be affected.
This is so hard for you when you are so young and it must be so isolating for you. I hope you gave some good people around you to help you through this phase of waiting and moving to acceptance of having a debilitating condition which is going to take some time to go through and recover from. But take heart from the fact that that if it is GCA there is recovery for most people.
My sed rate was high but my biopsy was negative. Apparently there is a high rate of negative biopsies even though the disease is present. I'm shocked that you're not on the high dose pred, damage is being done. I hope you get some relief, fingers crossed.
Your fatigue is part of the polymialgia I am afraid . Once you start taking steroid hopefully the pain symptoms will go , but I am afraid the fatigue won't for a while . Also you will learn to pace your self . I have had various head pain throughout but I have had ct scans etc but know one appears to want to do a biopsy on me . Also one you know either way about the GCA perhaps relaxing a bit having a diagnosis will help the fatigue . I sometime get very shaker , but I fear this all takes time . Have been on pred for just over a year and it isn't straight sailing . Hope once you start taking the pred you will start to be more comfortable Carol
Hi. Just to let you know your artery biopsy might well be negative like mine. However I was still diagnosed with Gca at age 49. I refused steroids until day after biopsy. Silly mistake looking back on it now as damage to optical nerve in left eye. Still blurred vision too. 16 months on I am still on steroids but with Gca & PMR which are both very active there really is no choice. I had relief from muscle pain within 24 hours but took longer for headaches to reduce after starting steroids. I hope you get some pain relief soon and when you do it really will help you mentally too. You are so young and things will improve.😊
We'd love to know whether you had your biopsy and how it went.
Sending good thoughts,
K
Hello all,
I had the biopsy 8 days ago and the wound is healing well. The pathologist said the biopsy was negative for any inflammation or giant cells, which is good and bad news since I suppose I could not have GCA but I could have it without really knowing... Based on my negative blood tests, age, and negative biopsy, my rheumatologist basically said there was very very little chance that I actually have GCA. However, I have never heard of anyone having a constant migraine such as mine in the temporal arteries for this long without any relief. I will continue to seek help with the pain I have and take steroids for a week or two to see if I can break this endless pain cycle. I have been having more energy lately and less local pain in the artery area after the biopsy, which is a good sign that maybe what was removed was causing the problem. I am also consulting with a vascular surgeon regarding temporal artery ligation/cauterization to remove the source of the pain since my rheumatologist and myself are beginning to believe this may not be GCA but just some strange endless migraine that was very difficult to assess and diagnose. I will keep everyone updated on my progress.
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