Just wondering how severe the headaches are? Is the severity a symptom or can they be milder than that? I had trouble eating anything hard - couldn't eat apples or muesli bars or crunchy veges - when I did I had bad pains in my temples. My temples felt swollen and I could no longer wear the reading glasses that I had worn for the last two years. I had a lot of headaches and was sent to the neurologist who wanted Rheumatology to do a biopsy. They said I'd been reading too much on Google and to go home and calm down!
I think they thought I wasn't in enough pain.
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Jane185
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My pain was persistent but probably not that severe. It was also very odd and unlike any other headache I had ever experienced, and like you was worst when I ate hard types of food. When I learned it was a form of vasculitis, it made sense because the pain seemed between the skin and the skull, rather than deep inside like other headaches. It was mainly on the right side and was worse at night when trying to sleep. I don't normally wear glasses, but I felt very uncomfortable wearing sunglasses - the pressure seemed out of all proportion. I had a biopsy which confirmed that it was definitely GCA. It was taken from the right side where the pain was worst. However I understand that some people do not get positive results, despite having GCA. Ultrasound is available as an alternative in some places.
The rheumatologist sounds remarkably cavalier in his/her attitude. Surely every doctor knows that individuals vary in their pain thresholds? I know I can cope with a higher degree of pain than many people. This can be a distinct disadvantage - my daughter also has a high pain threshold and almost died of sepsis from a UTI. The doctors were amazed that she had tolerated so much pain.
I think you definitely need to be tested for GCA. Have you had the appropriate blood tests? If it turns out that you don't have it, fine. If you have, you need to start on prednisolone immediately. Good luck.
Goodness - they actually said you were :' reading too much on Google and to go home and calm down!'
- another example of how some medicos seem to think '(our) ignorance is (their) bliss'. Unfortunately some of them seem mistake us for complete idiots and don't think we can differentiate total rot from well-informed helpful sources. The RISK is however YOURS not ultimately 'theirs' - if you do have untreated GCA your eyesight is at risk as well as a bunch of other possible nasty consequences - that not 'they' but 'you' might have to live with. It sounds to me - as your symptoms suggest - you should be having some pretty prompt attention.
I would agree with the previous comments. My Headache was severe along with tooth & earache, but symptoms/pains vary from person to person. Consultant seems very gung ho with your eyesight! Presume you haven't been prescribed pred by your GP then! I had almost immediate relief of pain which was a good indicator of GCA. (positive biopsy) Hope that helps.
Well that sounds insensitive. My headaches were not acute, but abnormal for me. I never get headaches. My temple area was swollen and the pain was unusual and consistent. I hope you get tested. Good luck.
My symptoms were similar to Marijo. However, the jaw pain was there when I chewed anything, not just hard things. The muscles around the hinge just got tired and sore and at the base of my skull. It didn’t come and go but started small and ramped up, in the end I felt very on another planet too. The headache didn’t feel like it was in the brain like a normal one but a burning under the skin.
Since GCA and Pred I have developed Temporomandibular Joint irritation which feels very like a GCA to me. Can also cause swollen temples and hard things make the joint much more likely to misalign. Might be worth asking your dentist to check, so at least if you do go back to the hospital you can say you’ve ticked that box. Go to you optician too, sometimes they can see it in the photos ( only if it’s affecting your optic nerve supply) but again you’ll have a baseline if nothing else.
As for the medical opinion, I’d like to say, ”ok Einstein if it’s not GCA, what is it? Didn’t know too much Google was a condition “. Also, in sending you home with such a dismissive comment, they are rather disrespecting a colleague’s judgement that something is up. I’d like to see the note they send back to the neurologist.
Hi Jane185, the head pains I had were excruciating. I had to buy a pair of the lightest reading glasses as just wearing them made the head pain worse. The head pains got would not go away, at one stage I though I had a brain tumor.
They asked me at the hospital to rate my pain on a scale of 1-10, I told them that is 20.
The jaw claudication was so bad I couldn't eat solid food and found it difficult to even talk. I had lots of little raised lines and bumps on my temple, which I found out later were inflamed arteries.
Hi Jane, headaches yes. I have a mild global headache all the time, back of skull to eyebrows, and ear to ear. Temple pressure feels like they may explode one day. To go with the mild headache I get really painful areas also, tapped with a brick kind of pain, last for hours sometimes. I do find that 2 Tramadol and 2 Paracetamol taken together certainly takes the edge of it though. Hope all is well soon. I can't get my glasses to stay on my face with my swollen temple areas. Trevor.
Hello SnazzyD, I had been on Prednisolone 15mg since diagnosis of PMR in June 2018, then GCA joined in. I then went up to 40mg. Still on 40mg for another week then starting to reduce slowly. I have an 18 month reduction plan from the Rheumatologist, so he's not in a rush to get me off the medication that works. Going to keep him. Trevor.
Absolutely spot on SnazzyD. I started on 60mgs of pred and the head pain went away completely. I stayed on 60mgs for two months before tapering. By that time I was pain free, could open my mouth again and the swollen temple arteries had disappeared.
Don’t stop educating yourself, in the end I was the one who connected all the dots and took my suspicion to my doc and she immediately ran the sed rate and CRP, both very high.
Well for some reason I am having trouble replying on the reply button, so have to do it this way.
Thank you all for your advice and concerns! This was quite a while ago now, but I have only been recently a member of your website. I have been impressed by your knowledge and wanted to know what you thought of the situation. But it is a long story and I gave you a shortened form!
Problems started at the February of 2016, when I had lower back pains, and left calf cramp. I thought the cramp (long-lasting) was maybe from a pinched nerve from my very sore back. I got worse, more unable to walk, and then pain in my shoulders. I went to massage therapists - no joy. I could barely walk the short distance to the chiropractor(soo tired!), who did an X-ray - did not look great because I have arthritis/spondylitis. On my way home, I went to have my usual blood test (because I am on plaquenil for arthritis). The next day, I had a call from Rheumatology - my CRP was 105 - I should get to the doctor asap. This was now about 3 weeks after the start. Pains were by now going down to my knees and to elbows. Doctor guessed PMR, and gave me 40 mg Prednisone. That night, I couldn't move when I got home from the pharmacy, just sat there with my water bottle on my back! At 9 pm I got up, and realised I was so much better that I could actually do the dishes! When I did look it up on Google, I also realised that I had been suffering from night sweats (it was summer so I just thought I was too hot), weight-loss, lots of pain trying to do up my bra in the morning etc - classic symptoms. The next day, I was almost dancing. Doctor had ordered another blood test - some improvement. Another two days later during my visit to the doctor, he asked me if I was having headaches, and I remember saying yes. He warned me about GCA, and told me to keep an eye on it. An ESR done on the bloods from the previous test was 55. I was on 40 mg Pred for 3 days, then dropped back to 20 mg. I was referred to the PMR specialist in Rheumatology, who did not seem in any doubt about PMR. CRP was still up, so they upped the pred to 25 mg. This was now March/April. In the April school holidays, we went on a trip and as we were driving I noticed that all the car lights looked like there were four of them, until they got up close. the signposts had two lots of letters, one lot above the other. When we got to our destination, I wanted to go to the hospital. But my husband said to try out my reading glasses and see if things resolved - which they did. But that week away, I had headaches, leg cramp, jaw pain on eating an apple. Naturally, I was worried. I rang rheumatology when I got back and they saw me right away, but it was only the registrar - and as I said, he made up his mind that I been doing too much reading. He also asked me if I was happy - if I had a fulfillment in my life...grrr! Then went and discussed my case with the big guy - but influencing him with his biased decision (I overheard some of the conversation). So over the next few weeks I continued to have headaches, sore temples, eye blurriness, jaw pains, and doctor sent me to neurology. They seemed undecided; ordered a CT and asked Rheumatolgy to do a TAB. When Rheumatology received this letter, they rang me, said it was no use my having a TAB as it was now over 6 weeks that I had been on pred., and then gave me a full blood work-up. I heard nothing from them, so I went to the lab myself and asked for my results. CRP was ok ( they never retested my ESR), but my eGFR was showing chronic kidney disease. So back to my doctor to tell her and she did a follow up test (to check the first one) and ordered them monthly. By July, my eGFR was 48, down from 77 in March (90 is normal), so she sent me to the Renal specialist. He did tests and said it sounded like glomuleronephritis, the cause possibly arteritis (since it wasn't diabetes or high blood pressure). I had also had a dripping nose, and slight amount of fluid on my lungs since Feb/March (GCA symptoms?). Since the cure is prednisone, he advised me to stay on a higher amount and not taper yet. Eventually, around December, my eGFR has risen to 65, and he discharged me. By this time, the headaches and jaw pain had gone. Also should mention that I ended up going to get my eyes tested and getting bifocals in May. My vision had changed radically, as before I had only needed reading glasses for years. But I had to get them made wider so they didn't rub on my temples! Since then, over the last two years, I have very gradually tapered, keeping an eye on my eGFR, and have recently gone down to 8 mg. That was a difficult decrease, because even though my CRP and eGFR didn't show anything different, I felt more pain in my shoulders, lower back, some night sweats, and some temple tenderness. In New Zealand we get enough meds for 3 months, so that means I will expected to drop down again soon. I'm a bit concerned.
Sorry for this long saga!! Interested in your thoughts.
I was working as a live-in carer, when a headache from hell struck me in the middle of the night. I thought my head was being chopped open, so severe was the pain. That put an end to my working career. Jaw pain followed. Put on 3 stone in 3 weeks.Dr admitted not knowing the cause, but BP through the roof. Wanted to hospitalise me, but I refused, as I was going to my family, in SA, 3 weeks later. I was given a strict rota of how to take the steroids. Upon my return, I saw a Neuro, and was with him for 13 years, until he handed me over to my GP. I have Addison's Disease and on Pred for life. That headache was like NO OTHER!!
Only about half of patients with GCA actually present with a headache at all. Something like 70% have a headache at some point. It isn't mandatory! And about 1 in 5 GCA patients who lose vision had no symptoms in advance, not even PMR aches.
Now if it had been ME personally asking for a TAB I could possibly have accepted being told I was reading too much. When I did it at the behest of a neurologist - not so much. I would be looking for another rheumy. One who let the big boss see the patient or who spoke to the big boss in my presence.
And with the description you have given - I'd be looking for one now too. Those are fairly typical symptoms of you having reduced to too low a dose to manage the inflammation that probably was well managed with the dose you were on for the renal problem. PMR/GCA doesn't just last 2 years - PMR has a median duration of just under 6 years and most people I know with GCA have needed pred to manage the inflammation for 4 or 5 years at least. I know a couple who got off pred for GCA in a couple of years - only to have relapses of either PMR or GCA a few years later.
I was given a palandromic rheumatism diagnoses and told simply take these tablets and go and google it. Lovely ay 😡 so if they’ve got no time go google . So hypercritical. If they don’t have time for you, what are you supposed to do with local libraries all but gone. If you didn’t google you wouldn’t find this invaluable place, so I would say if you helped me I wouldn’t have to google, but it will fall on deaf ears as ignorant is ignorant.
I hope you find some help .
I also can no longer wear glasses as painful but never related it until I see on here it affects others , I don’t think to tell them .
Too many cavalier rheumys around (apologies to any good ones) take care and good luck, if googling helps educate you then keep doing , if they did their job properly and not so dismissive you wouldn’t feel the need to perhaps .
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