Had headaches. Did blood work when I was on 5mg prednisone for possible GCA. Results 0 inflammation. Rheumatologist said he never saw one like that. Had TAB. Negative. Was on 50 mg Prednisone for just over 2 weeks to treat possible GCA. I’ve been told different ways to go off. What is the forums suggestion? Appreciate your feedback.
By the way the tension headaches are still there. Will follow up with family doctor.
You probably can - but I imagine you will feel pretty rough initially.
What other methods have been suggested - there is probably a better and safer solution.
I would say that inflammation markers are not the be all and end all - even on such a low dose as 5mg I would expect them to be good - but they also have a habit of lagging behind symptoms- which are the key. How long had you had headaches when bloods tested?
As we also know a negative biopsy doesn’t guarantee 100% you don’t have GCA - just no trace was found on the small sample taken- for various reasons.
How do you know they are “tension” headaches?
Thx for reply. Don’t want to feel rough so I will taper by 5 every day. GP said 45 45 45 40 40 40 and so on. Rheumatologist said reduce every day by 10.
I’ve had the headaches before PMR and now again for two months. Not painful. Just heavy pressure. Guessing tension and stress.
I do know both blood work and biopsy can reveal nothing. I do wonder what is point of having them. TAB so invasive. Want to look after myself. Will try physio/massage in future.
What more can one do to treat GCA other than what I’ve already done? I guess you wait to see if any more symptoms.
Meanwhile looking forward to being back on maintenance dose of 5mg.next week.
Okay - good luck with that - let us know how things go.
Usually 2 weeks should not have caused the " dependence" most of us experience. I agree with Dorset Lady that inflammatory markers are not the end all and be all. I assume you are referring to Sed Rate and CRP . A good number of people with PMR/GCA have no inflammatory markers. PMR Pro knows the statistics.
I did not either until my third year with this PMR. However, you mention "possible GCA." Was GCA ruled out by biopsy? Did you get relief from the Prednisone?
I am not the one to talk about GCA, but as I understand it GCA headaches are not at all like tension headaches. It sounds like your doctor was very cautious to prevent the loss of vision that GCA can cause.
Your question is a hard one because of the very high dose of 50 mg, but for a short time. There is a pinned post about the forum's suggestion for tapering off which is a very slow one. By TAB, are you referring to therapeutic abortion?
TAB - temporal arterial biopsy.
Yes I think GCA ruled out, but can never know for sure, right? No. No relief for headache from prednisone Prednisone.Thank you Christophene. Take care!
I would suggest you go with a plan that is similar to what the GP suggested, or, rather than go down by 10mg a day try 5 a day and see how you are each new day as although you have only been on the high dose for two weeks the jump to 5 from 50mg could cause very bad side effects if done in a week especially if you are already suffering from some form of headaches.
5 a day then possibly from 10 doing 8 , 7.5 , then 5 would take 10- 14 days instead.
A very rapid taper even after a short steroid dose on higher doses can cause an extreme effect on your hormone and thyroid function , it's better avoided.
Make sure you don't take on any big activities while you do it and drink more fluids than usual as the body will be struggling with a quick change in chemical balance.
What are the actual symptoms of your headaches ,?
Can you describe what they feel like and where the pain is on the head , plus any other symptoms that seem to get worse with the headpain.
Explaining it here might get you some good advice , but it will also help you have your symptoms down in words which might be useful for you to say when you describe things to the GP.
Think I agree with you Blearyeyed. Going down 5 each day and seeing how I am. And at 10 will do slower taper to 5.
I’m sore where I had biopsy17 days ago. Feels tight and throbs a bit. Healing, I guess.
My head feels like the skull is tight. And like there is heavy pressure on it. Pretty well whole head right now. Sometimes more on top. Sometimes tight forehead also. There was some tenderness on right lower large back bone of head for about a week but that has been gone for at least a month. There all the time. But does ease up sometimes, never totally. Sleep is good. But still have it when I awake. Having the headaches past few months.
Always have a water on the go.
There it is recorded!
Thx so much!
To be honest , I think I would get to the GP again asap , you need to double check on the taper , but also if they are totally convinced it isn't GCA , they need to send you for urgent investigation to deal with the head pain with a Neurologist .
Have they ruled out other vascular problems or done any other blood tests to establish what's going on?
When did you last see an Opthamologist or have an eye exam ?
GCA cannot be ruled out by biopsy - only ruled in. A negative biopsy does NOT mean no GCA, it merely means they didn't find the giant cells and other signs they look for in the small section of artery they looked at. There is a range of reasons why that may happen including poor operator technique, too much pre-treatment with pred, the GCA isn't in the temporal artery or even not in the sections studied as it forms what are called skip lesions.
I had a very similar experience to you. I had been on 40mg prednisolone for 9 weeks when my consultant decided that I didn't have GCA.
I reduced by 10mg every 3days to zero (9days in total) and it was challenging to say the least.
I was completely exhausted and felt very unwell. On reflection, I should have reduced more slowly .
Since stopping the prednisolone, I've had widespread aches/pains fatigue and am waiting to see what the Rheumatologist and neurologist make of it.
Long post, sorry, but my advice is to reduce slowly, by 5mg every 3 days, and brace yourself for the storm.
Good luck 👍
Thank you Linda3009. So you had symptoms too? But with me on 50mg Prednisone the headaches have not gone away. Doesn’t that tell me something??? After your comments on tapering I think I will taper a little slower. I was on the 50mg for two weeks - you were on 40 for nine though, so a tad different. Think I will ask my family doctor to refer me to a neurologist too regarding headaches.
Oh my word. That thought had entered my mind. But please, I hope not. Asking my doctor to order MRI of head.
Still on Prednisone after almost 3 years will I ever be off it
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