Hello everyone
So here is my story. I live in the USA. In New York State. It all started with a sinus infection back in first week in April. My pcp gave me a zpack. Which an antibiotic called erythromycin. Which worked for most part. Then I developed a severe headache on April 28th. That’s when all started and it has not been any better since. Was on 40mg then 50mg. I stopped the prednisone 2-3days b4 my appointment with doctor. Once the biopsy came back negative
How long were you on 50mg and did the headache get 0% better? I was first put on 40mg, but had maybe a 50%-60%improvement. Several days later they increased to 60 mg and I had 90% improvement within 8-12 hours. Why did you stop "Cold Turkey?" ... because the biopsy came back negative? Often the TAB results do come back negitive and the ESR and CRP come back in normal ranges, but if it looks like a duck and quacks like a duck...
I was put on 40mg then to 50mg. Then I went cold turkey on the pills. Thinking nothing of it. Once I knew that the results came back negative.
...and did the doctor instruct you to go "cold turkey," or did s/he agree with you doing this? To reiterate, negative TAB results DO NOT MEAN you do not have GCA, just that the biopsy didn't get an inflamed bit of artery.
So all of this started on April 28 and it is now May 20th... which means you have gone from 50mg to 4mg in 22 days? No wonder you feel like crap!
Did you find that you had ANY relief at all from the headache when you were on 40/50 mg? Or was it too short a period of time.
I am sorry to ask so many questions, but the information is kind of confusing and I know the "experts" on the site can help you and direct you if they understand the history and what's happened to date.
How are you today? Is the headache still bad? Do you have pain where the base of your skulk meets your neck? Do you have limited mobility and movement in your neck? Do your temples hurt to the touch? Do you have pain down your neck and into your shoulders? Do you have an ache behind your eyes? <<<These are all symptoms of GCA.
PS I suffered several sinus infections in the year prior to my GCA/PMR diagnoses... loss of taste, loss of smell, headaches, constant runny nose, I was seeing an ENT, but he didn't suss PMR/GCA, but then again, nor did my GP. By the way I am an American living UK.
Please don’t feel bad about asking me questions. All that you have asked are all there YES. I still in the same boat. The more question you ask the better I can try to explain it. And as for the headache 🤕 NO relief from anything. Keep waking up with headache. Also I do need to know is it normal to have the same headache on the other side. I’m also having trouble remembering and writing things down. Can you please let me. I am going to call doc tomorrow morning first thing. I’m SO GLAD TO BE TALKING TO YOU AND EVERYONE ELSE ON THE GROUP. IM SO BLESSED TO FIND SOMEONE WHO CAN RELATE TO WHAT IM GOING THRU. THANK YOU 🙏 ALL.
I posted this reply on your last post. I'm glad you added some of the information that will help folks understand what's going on. Can you fill us in more?
Hi,
I think we could offer better advice if we understand your journey better.
When did you start on prednisone and what was the dose? Right after the headache April 2017 or did it take them time to diagnose?
How has it changed? How long on 40 and 50mg. before stopping cold turkey. Just 3 days before starting again?
You mentioned a tapering pack of 4 mg. Ususally you take several pills the first day and take less and less with the days that follow. Can you tell us that schedule?
Also- what country are you in?
Just a thought - I am also in the USA. Although I had to wait a month to see the first rheumatologist I went to, when I switched it did not take as long. It's worth asking to see someone quickly and calling around to see who can see you soonest. Depending on where you are, there may be more than one doctor you can access with your insurance. A different rheumatologist might be helpful. Also, if your doctor calls the office they sometimes see you sooner.
Another thought. I do not have GCA so this is outside my frame of reference but I thought I read that if you are on prednisone it can affect the results of the biopsy. Maybe someone with experience can comment on that.
I do think you need help quickly. The question is how to get you to the right doctor as soon as possible.
Just for your info: it is felt that being on high dose pred for a few days, up to 2 weeks, probably doesn't significantly affect the biopsy result and there should still be signs of "healing" inflammation if it was there. The result of a TAB is very unreliable - probably only less than half come back positive and every week on high dose pred is thought to reduce the likelihood of a positive result by 10%.
There are a lot of reasons for it being negative - including poor technique on the part of the surgeon and histopathologist! Then there is the fact that GCA may not be affecting the temporal artery - it just happens to be easily accessible and IS affected in some people. The lesions also occur irregularly - there may be quite big gaps between them and if you don't happen to get a bit of artery with them in you won't see any.
It being positive is 100% certainty - being negative just means "we don't know".
Hi Hali12,
As others have said you really do need to seek urgent medical attention.
There is every possibility that you do have GCA - 40mg is the lowest starting dose, so it isn’t always enough - hence the rise to 50mg. I assume that was doctors orders.
I don’t understand why you stopped the Pred prior to your biopsy? No medical practitioner should advise that. If it was to get a more accurate diagnosis- no point! The Pred is in your system anyway, and as we know the actual sample of tissue taken may not show GCA, but that doesn’t mean it’s not present in other blood vessels. Either that or the Pred has it under control.
If it was your choice, then why? Because result was negative? Very dangerous thing to do, you should never just stop a drug no matter what.
Unfortunately at the moment no-one on here can say whether you are suffering from Pred withdrawal or GCA, I suspect a combination of both, but if it’s GCA then you need to be back on the correct level of Pred. To that end, you do need medical advice, if that means a visit to ER, then do it!
I lost the sight in my right eye, not through my actions, but because my GCA wasn’t recognised and treated in time - please don’t take that risk! Time is of the essence and 4mg is not enough!
I’m very sorry I feel like I’m troubling you very. I’m very sorry I am at so lost. Trying very hard to cope with this. I do apologize again 😔😔😔 as for your question to why I stopped the meds it was all on me. Not doc. I did mention that to the doctor’s office. That I had stopped the Med. I think she is also so confused to know why this headache is not going away. I will have a talk to her tomorrow. Please again I apologize. I will get to the bottom of this with ALL OF YOUR HELP. THANK YOU 🙏
Please don’t apologise. These illnesses are very confusing - for both medics as well as patients.
We are just trying to find out exactly what you have gone through so far, so we can advise what you should do next.
As for your headache, all I would say is - either it’s not GCA at all, and if that’s the case then further investigations are necessary. If it is GCA, and as we’ve said, the biopsy might have been negative but that’s not always accurate, then you may need a higher dose of Pred to get rid of the headaches. I started at 80mg, lots start at 60 or 70mg
Please let us know what happens tomorrow!
No you aren't troubling us and no need to apologise - the reason we are here and do what we do is in the hope of preventing people going blind or becoming otherwise very ill.
There are a few reasons the headache may not be going away - and obviously you stopping the pred may be one, you just hadn't been on it long enough or you needed even more - some people need anything up to 100mg to get the inflammation under control at the start. It's unusual but it happens.
Then there is the confounder that one of the side effects of pred is - headache!
Hi Hali12, As others have said ... please do not apologise! There's no need. I guess if you don't go to ER today, you'll talk to doctor tomorrow.
I know how difficult it is to address everything you want to talk to doc about, especially once you get there and your mind goes BLANK. I have tried to consolidate what you have told us, below to help you have a better discussion with your doctor, so that s/he knows exactly what's been happening with you. Don't rely on him/her remembering! They usually don't Hahahahaha. Mine barley remembers my name! And I'm there regularly! : )
**********Please reiterate the following to the doctor**********
>>>>> You got no relief from the headache after being on 40mg for X number days, and still no relief after being on 50 mg for X number of days.
>>>>> You stopped taking the pred all together (cold turkey) after the TAB came back negative
>>>>> Explain that, overall, you have had NO relief from the headache in X days and the pain is bad enough to wake you up
>>>>> Try to describe ANY other pain/discomfort you might be experiencing, i.e, pain where the base of your skulk meets your neck? Limited mobility/movement in your neck? Pain in your temples? Pain down your neck and into your shoulders blades? Ache behind your eyes? Pain in your jaw? Fatigue? Scalp tenderness? Vision issues?
I wish you the very best of luck tomorrow.... and hope you get some relief soon.
Thank you all for your understanding. That is exactly what I plan on doing 1st thing tomorrow morning. I do have 2 questions. One being having trouble with my eyes meaning they hurt,tear and sometimes I get this blurriness also pain both eyes. I will definitely let my doc know about this. And the second question to you all is that I get very tired from doing anything around the house meaning do housecleaning and the pain starts.
Fatigue is a symptom of very many autoimmune disorders - that is tiredness you wake up with, that doesn't improve with sleep or rest. It isn't helped by pred - you have to pace and rest to manage it. However, pred also causes fatigue as well as the more manic feeling that makes you feel you can conquer the world - and the housework!
Did you have the eye symptoms before taking pred? It sounds very like dry eyes which also tends to be associated with autoimmune illness but can also happen anyway. And blurriness can be a GCA symptom - or be caused by pred.
Please don't apologise for anything, Hali12. We were all scared when diagnosed (or misdiagnosed) and the forum members have been very helpful. They know what doctors don't feel. I had GCA, fortunate to have a positive biopsy but was told a second one would be done to reinforce the diagnosis if it was negative. But what scares me is that you went 'cold turkey' on coming off large dose steroids. Big no no! There is a chance that your affliction will come back with a revenge. Your immune system has been shattered and your body's adrenal glands would not have had the chance to start working again. It's taken me 13 months to come off it. Please see your rheumatologist for answers.
All the best - from New Zealand.
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