Hi All
I’ve been on 50mg Pred for 13 days now after a week of pain in temples.
The pain wasn’t really bad more of a dull ache.
I have my biopsy on 4th Dec and been told to stay on 50 till after that.
Question is how long does it take for ache to go. I still have it although nit all the time, just now and again like a gentle reminder? Should it have gone by now? Is 50mg enough?
If I recall, mine lasted about 2-3 weeks. At lot less intense than pre diagnosis, but still lurking. However I was on 80mg - so considerably higher than you.
Hopefully you should be feeling a lot better by the time you have biopsy, but if it doesn’t improve significantly you need to discuss with doctor. You may find it’s not quite enough.
Thank you. I’m 17st so not a small guy and wondering if 50 is enough. Thinking about trying 60 for a few days as I can’t get to dr till later in the week. My dr’s are pretty crap also so I feel it’s down to me to lead the fight
You might find that 5mg will be enough, so perhaps try that for the next 3 days, then re-evaluate. You then will have the option of increasing if necessary or staying at 55mg.
Thank you will give it a go
My doctor said 1mg per kg of body weight should be initial dose for GCA. My symptoms subsided over around 2 weeks.
My gosh that would be 107mg of pred for Jc554.
I think that is supposed to be a maximum dose for GCA without visual/jaw symptoms.
Hi PMR Pro, I did have jaw and tongue claudication. It was the only thing that sent me to the doctors, and he immediately did bloods then made an urgent referral to hospital
Hi Jc,
Do you know what your sed rate or CRP numbers were on the blood test?
I do remember waking up frequently at around 3 am with slight aching in my temples. I don’t think I was ever 100% pain free in the beginning. Doing pretty well now after 4 years.
Best to you!
Thank you, no I never got told what they were. I will have to chase.
The pain has never been terrible, just concerned about my sight if it’s not enough.
Sounds like you’re doing well. Are you now med free?
No, I’ve been stuck at 4 mg for a very long time. Whenever I reduce I get a pretty bad flare. GCA is still prowling around but my body seems happy around 4mg.
We are all different so don’t think that will be your future. You will get to know GCA and the best way for you to cope with it for you. fm
And 4mg is not a huge dose to be on long term anyway.c
Great advice via Dorset Lady .
It does really depend on how bad your symptoms were , how long it took them to treat you and if you have any other health issues.
The GCA added pain I had took about 4 weeks to calm down , but I do have other issues , so I am never 100% pain free.
Glad you are getting a biopsy , but it's good to be aware that it is coming a while after you have started Pred on a high dose , so if it is negative it does not necessarily mean you don't have GCA ( some Doctors don't realise this) it could be that the Steroids have had an affect on the results , or they did the biopsy in a site that was not affected .
Symptoms and Symptom relief on Pred is usually the best indicator at this point.
You may be on a low dose for your build , as you say too , so this might have made the relief from pain less obvious and could make pain reduction slower too.
Good luck
Hello. My pain went in 2 hours of 60mg Pred but my head felt very weird for some weeks. As has been said, a negative biopsy doesn’t tell you much, only a positive result does. Mine was negative when it was done 8 days later.
Keep an eye on your symptoms as you may need a higher dose like some do.
Yes I have the weird head, emotions up and down usually better in morning. I’m going to up it for a week to 60 as that seems best practice and then biopsy will be here. Hopefully will get on top of it
Just remember gp asap or a&e if you have any vision problems. Dont wait to see how thngs go. YBB
I weigh about 12 stone and started on 60 mg of pred per day. I had my biopsy the day after I was diagnosed and it was positive. By the way I had a couple of really ''funny turns'', one a week after I started on pred and the other about 10 days after the first. The first time I collapsed in the hospital which was useful. Both times they started with a non-GCA kind of headache at the front of the head and were prompted by being upset about something. My blood pressure went temporarily through the roof and I was confused and incoherent. At first the doctors assured me it was nothing to do with the steroids, but eventually one doctor did admit that being on a relatively high dosage for the first time was probably a shock to the system and could cause some strange reactions. A couple of times afterwards I felt the start of another incident but I found that I could deliberately calm myself and prevent it building up.
I weighed about 150 lbs when GCA hit. I was put on 80 mgs of pred as there was eye involvement. Headaches went away immediately but sure felt strange with all that pred in my system.
How long was it before you were able to start to taper, and did that go fairly well? I think you're at quite a small dose now aren't you?
I stayed on 80 for a month, 75 for 2 weeks, 70 for a month etc. I got down to 1 mg last May (my 2 yr anniversary of GCA) and was diagnosed with PMR. I am currently at 5 mgs and have just been diagnosed with tendonitis with impingement in my left shoulder. It never ends lol
I upped to 60 this morning, felt a bit odd for a while probably in my head. Still have the fuzzy temple but that’s only symptom. Will carry on and see DR on Friday see what they say
I would be hesitant to throw too much prednisone at it until after the biopsy, as it could contribute to a false negative.
two weeks and told to cut meds
Two weeks since start of flare & still in pain
Pain in the neck!
Two years after diagnosis
