I'm new here and feeling very confused with symptoms of both Graves and GCA/PMR. Last summer I was diagnosed with Graves, had antibodies for both Graves and Hashimotos, was put on methimizole and beta blocker. Stopped the drugs in December as the blood tests were trending toward hpyo. Latest TSH: 12/1: 1.65 (0.34-4.82). 12/15: TSH .55. 1/8: TSH 1.73
Finallly saw a rheumatologist on 12/28 that I had scheduled last summer before the thyroid problem. At that time I was having sacral joint, ankle, back pain (maybe the PMR?) In December I started having severe shoulder, neck pain and head pain in the occipital area, back of head, a particular spot. He tested sed rate and CRP, sed rate was 69 mm/Hr (0-25), and CRP was 2.1 mg/dL, (range <=1.0). He scared me to death about losing my sight with GCA and put me on 40 mg of prednisone. He didn't order a biopsy, said they were somewhat unreliable. I also tested positive then for a UTI and took antibiotic for that at the same time. I didn't have symptoms of a UTI other than some back pain, but I'm 74 so I guess that's not so unusual.
Tested again on 1/16 after being on the prednisone for 10 days and the rates were: sed rate: 17 (0-25), and CRP 0.2 (<=1.0). All in range, but I'm having an awful time at night with waking up after a few hours with pounding heart, shakiness, tight chest, a little head pain,( not bad), getting cold, and then very tired. He wants me to reduce to 30mg prednisone since tests are in range. I did for one day but the neck pain got worse and the headache is "hanging around", not painful, but not right either. I worry constantly about my vision. I'm very nearsighted and switch between glasses and contacts so hard to tell if type is unclear sometimes.
But the waking at nite, etc., were the some of the same symptoms I had when hyper with the Graves! I'm so worried about my sight I don't know what to do at this point. Would the UTI have caused the inflammation to go up so high and then back down so quickly? Can you be at risk for GCA problems if the blood tests are in range? Can Graves cause the sed rate to be that high? Now I'm stuck with the prednisone? How does the sed rate and CPR level correspond to what's going on the the PMR//GCA?
Confused about what to tell and ask each doctor to find out what's going on. It is hard to get in to see the rheumatologist but he is responsive to phone calls. Haven't called the endo about being on the prednisone. I don't know how to sort this out.
Sorry about this long tale, hope it makes sense from lack of sleep and prednisone. Thanks in advance for any advice!
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Mstiles
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Yes the UTI could have contributed to the very high sed rate/ESR,
Yes, you can have GCA/PMR with normal blood markers both without and then with pred, up to about 20% of GCA patients have normal sed rates although fewer have both normal ESR and CRP.
Subacute thyroiditis causes raised ESR/CRP but raised levels are not usual in Graves disease - it is a means of differentiating between the two forms of thyroid disease.
The sed rate/CRP should be showing that your current dose of pred is enough (more than enough) to manage the inflammation. That is not 100% reliable though and symptoms always trump blood values. i.e. if you have symptoms you should react, whatever the bloods say.
I assume you have gone back to 40mg? Next time try reducing by 5mg, or even better 2.5mg at a time. If that works OK you can try another reduction. Pain that starts immediately after a drop MAY be steroid withdrawal pain - which unfortunately tends to be identical to the symptoms of the illness for which you are taking the pred. If you make the reduction steps smaller, your body may not notice the change.
It will get better, not only as you reduce the dose but also as your body gets more used to the pred. And no side effect is worse than the potential ultimate side effect of GCA. Hold on to the fact it is protecting your vision. And try to rest whenever you can - it doesn't have to be sleep. You have a serious systemic illness - two in fact. Treat yourself to a lot of TLC.
Thank you so much for your quick and kindl reply PMRpro. You made it all make much more sense. Means a lot!! The nights are the scariest
Do you think I should be asking the rheumatologist for other tests? I have been learning a lot from this site and have read some of the recommended protocol which is more comprehensive than I’ve had so far.
I really don't know. What sort of relationship do you have with your rheumy? Some might take it as a criticism of their diagnostic skills - which may be quite justified in some cases!
You could try asking to get an explanation from him - you are a complex patient so it isn't easy.
I’ve only seen him once but I liked him, he tried many times to reach me on the phone to make sure I took the prednisone and the dangers of CGA to vision. I’ve called several times with questions which he’s always called back about but I feel like a bother. He kind of said maybe the symptoms were from anxiety.
New here. Not diagnosed, my aunt was destroyed by pred. I have some worry. From reading technical medical sites, i've picked up a few claims that may or may not be true. I shall list them, in random order. First, approx. 20% of untreated GCA victims go blind if untreated, and usually this is in one eye only, that i've read multiple times,. My aunt's MD in nursing home (this was after the GCA which my mother handled, i had no say) told me that it was invariably one eye, and that she would not have given predn to her parents. I've also read (and this seems contradicted here, that untreated GCA can burn out in 2-3 years. I've also read, (wish i'd saved the link, but on a technical medical site) that the morbidity from steroids may often be worse than the disease.
After seeing what it did to my aunt, I would , (assuming the above has some validity) be willing to gamble a 20% chance of blindness in one eye rather than be destroyed as she was.
NOW, i have not been diagnosed but have been having constant headaches, and of course, since that was my aunt's first symptom prior to diagnosis, I have considered this possibility,
Now, I am positive that all of you highly knowledgeable people will tell me that I am insane, and jump down my throat perhaps. (nah, you are all super lovely people).
Haven't gone to MD get, thought i might get a diff, doc to write script for lab tests to see the SED RATE, which i know is only maybe 90% conclusive as is the biopsy which is why if GCA is suspected, and biopsy normal, they will often biopsy other side. (which also could be???)
I am 71 years old and have no other current diseases other than what is probably sinusitis although no one ever told me that i had sinus issues.
If i were reading this, written by another, I probably would have a BP jump of 100 pts, since perhaps much of these facts that i've read on respectable sites, are not accurate, and one would have to be crazy to take a 20% or even 30% gamble of blindness if left untreated, As long as it is one eye only which most sites claim is the most common case,
I would welcome responses more to the random "facts" i've read , than to the wisdom of being a gambler, (that is a personal issue).
Don't know under what name this will be posted, don't see option for username for comments.
Am I the first one ever to consider rejecting prednisone? despite a diagnosis of temporal arteritis (thus they called me aunt's, she was a tiny woman on massive doses of prednisone, i at the time, albeit had no say, but read the data in the PDR and was appalled at the dose,
She of course developed osterop. which destroyed her freedom and she developed signs of psychosis, but she would have been better off BY FAR blind in one eye, and the statistics i've read only go as high as around 30% for untreated GCA.
You probably are not the first person to consider rejecting pred - but I will be totally up front and say to you that if you DO turn out to have GCA you would be very stupid to do so. Once there is loss of vision in one eye without very high dose pred there is a high likelihood of the second going too - the damage is to the optic nerve and will continue to spread, exactly as an untreated stroke will cause progressive damage to the brain. That is, after all, what has happened, a stroke to the optic nerve. Most patients who lose vision in one eye would be started on high dose pred immediately as most eye specialists are taught that is what must be assumed until proven otherwise.
I refuse to believe you would see total blindness as worth the risk. You will find stories on this forum in the last year where someone's parent has lost their sight despite high dose pred - Dorset Lady became blind in one eye and has told us how she had to wait for 2 weeks to know if the sight in the other eye had been saved. She was lucky - others may not be. Your doctor saying it was "invariably" only unilateral was incorrect - unless she was an eye specialist or rheumatologist she would have been unlikely to have seen many patients: it is a rare disease. Some GPs never see a case in their entire career, either before or after the fact and they see a very wide range of elderly patients.
Pred may have some unpleasant side effects, particularly at the high doses required for safety in GCA, but most of them can be managed, even psychosis. Osteoporosis is by no means inevitable and there are drugs to help combat that anyway. After all - do you know for certain your aunt didn't already have osteoporosis BEFORE the pred? You say she was a tiny person - a high risk for osteoporosis.
But it isn't only loss of vision. Untreated GCA also causes progressive damage to all the arteries involved - which can include the aorta, leading to aneurysm and/or aortic dissection. It increases the risk of all forms of cardiovascular disease and can cause considerable other morbidity - because while it is active you would feel pretty ill due to the inflammation being caused. You remain at increased risk of a stroke or heart attack. An article I often quote about GCA not only affecting over 50s reports on a 37 year old male who died of a stroke - the pathologist said due to undiagnosed GCA. The risk is higher for the first year after diagnosis even when the patient is managed with steroids.
You mention prednisone - so I assume you are in the USA. If so you may not be dependent on being managed only with corticosteroids - some insurances will pay for Actemra/tocilizumab which does result in a much faster reduction of the pred dose. It is a biologic so comes with its own baggage of potential side effects but it does appear to work well in GCA - it has been through Phase 3 clinical trials and the FDA approved its use about a year ago.
This is Not me, (response above), I’m still on 40 mg since the beginning of January after trying to reduce to 35mg for a week as per doctor trying to get me to reduce to 30. I had some symptoms come back, even PMR pain, so jumped back to 40 yesterday. I’m thinking I need to cal him to see if I need an even higher dose as “fleeting” head pain is there.
I have an appointment next week with an opthomologist/neurologist specialist in GCA next week
Yes I see. I woke up in the middle of the night worrying about the return of symptoms, notvthinking clearly. I will try to repost as a new comment. Thanks RMPpro
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