I just got the diagnosis and 5mg Prednisone. Researching a little I see its also GCA. I am terrified. Will 5mgs do it? Need to see doc again. any personal experiences? Usually over reactive to meds.
I don't know as I was on 20mg when I was diagnosed. I am sure someone will be Able to answer.
Hi, I was put on 20 at first diognosis for PMR, then GCA raised its ugly head, my pred. was increased to 60. I would surely discuss this with your Dr. I am in US, and I know you will get good advise here. Good luck. This forum is a lifesave, especially for your peace of mind, to know you are not alone in this unwanted journey!
Five mg doesn't seem like much. How many days have you been on the dose and has it helped your pain? Most of us start at 15 or 20, although sometimes 10 works, and other times people need a little more, although if 30 doesn't work the diagnosis of PMR is questioned. If 5 works for you that will be brilliant!
Symptoms of GCA which should send you to your emergency department pronto are any visual disturbances. Also if you've had unusual headaches, jaw pain, etc you should tell your doctor.
I had 20mg when diagnosed. I was virtually unable to walk, I was in intensive pain just lifting my arm to scratch my nose. Within less than twenty four hours of starting pred I was back in the land of the living, it was a real miracle.
1) If it is PMR the starting dose is 15-20mg.
2) If you have any problems with the following:
Blurred vision
You cannot touch your temple
Jaw pain when eating
A permanent headache.
Any of these: A&E as it is the weekend.
To help you do the following:
You need to read, downlaod and take the BSR Guidelines for the Diagnosis and Treatment of both PMR and GCA.
If you have any of the symptoms of GCA - you go to A&E pronto.
If PMR you can wait till Monday and see your GP and I mean see him and get the dosage sorted out.
They can both be found on these sites
This site, use the search engine box top right hand corner
the British Society of Rheumatologists
or by putting pmr gca northeast in your search engine.
Do not delay in reading up GCA.
I started with 10 mg and with the first dose I improved 85%. Never went above. My weight is 55 kilos.
Thanks so much for your responses. I will go back to the doc and get a proper test for GCA. Have had the eye trouble and on-and-off headache for months now.
she gave me 5 because I am alway overreactive to meds - currently take none at all for any reason. this is my third day of taking it and I am so stressed I have not been paying good attention to it. I will now though. I did ask her to look at my eye and everything seemed alright to her. she did not mention GCA - it only came up when I started doing my own research and saw the symptoms.
Like PMR there isn't a "proper" test for GCA, but if you have only been on pred for a few days it's not too late fpr a temporal artery biopsy. This checks for the "giant cells" but unfortunately a negative result doesn't mean you are necessarily GCA free, only that the cells they were looking for weren't in the small sample. However a positive result is very useful and means there would never be any question about the diagnosis. Not everyone who has the symptoms you describe will have temporal arteritis, or any problems with vision, but you really do need to have it checked. Although I had no vision problems I had lots of headaches and a sort of tight painful scalp, so I went to my ophthalmologist and he gave my eyes a very close inspection (and while doing it gave me a little course on prednisone and PMR and GCA, he obviously was much better informed than my GP) and saw no signs of GCA. A family doctor will not be able to do this examination.
Hi Fiona, it may be a good idea to go to an opthamologist, I have found that they are normally very knowledgable about GCA.
I am very sensitive to meds, but was started on 15mg....felt wonderful, but you have to reduce slowly, which can be brilliantly advised on here.....Good luck
I don't really understand what you are saying - I assume you mean you are finding PMR and GCA are always linked when you look it up. The diagnosis depends on your symptoms - and GCA will only figure in any doctor's view if you have those symptoms.
I see you mention on/off headaches and visual problems in a reply - what are they like? And no GP will be able to see any visual signs - they simply don't have the equipment to examine the retina and where the optic nerve joins the back of the eye. A optometrist can.
Since you say prednisone I'm assuming you are in the US. I'm also assuming your concern is because you recognise the GCA symptoms. What tests has your GP done and what were the blood tests she did and the results? It is the blood test results and symptoms that are key in the first place.
If there is a chance this could be GCA then you need an expert - that might be a rheumatologist or it might be an eye specialist. And if it is, then you will need rather more than 5mg.
Sticking with a PMR diagnosis - has the 5mg led to any improvement in your symptoms otherwise? You may be lucky, but I doubt 5mg will make much difference and there is no point being on too low a dose - either you take enough to manage the inflammation or you don't bother. If you aren't taking enough to wipe out each day's new dose of inflammatory substances their effect will mount up over time and lead to a full blown flare of the symptoms, in the same way a dripping tap fills a bucket if you don't keep emptying it.
No, not always linked but on reading symptoms I am much closer to the GCA. Jaw pain, eye weirdness, odd headache, scalp pain. I have been having all of these pains for some time and thought it to be aging signs so massage and walks and healthy eating etc. Had no idea I could be declining into something serious.
I am getting over the shock and will call my Doc on Monday. Of course the research goes to blindness, diabetes - horror movie future - I am already paranoid about medications with life-threatening past experiences. Probs 5 mgs in my system is like 15 in someone elses? We'll see.
I so appreciate that you and the others are here, already so helpful and informative. And I really need that.
I am otherwise very healthy and on no medications which seems to always shock people at "my age".
I will buck up to the higher dosage if need be. See what Doc and testing suggests. This is only my fourth day on 5 mgs. I had been overwhelmingly tired for about a week previously and still sleeping a lot but that has certainly improved. My swollen finger has reduced if not all the way, feels less painfully inflamed.
Please bear with me through this, a shock, a learning curve, a big temptation to go into denial.
Thanks
This is helpful to know. Being someone always outside the "averages" it is always an argument. My sisters are all as over-sensitive to meds as I am so its genetic as well, I think.
I do hope your doctor listens to your symptom list - good luck.
Please do bear in mind that 10mg is very definitely a PMR dose - GCA really does require more to reduce the risk of visual loss.
Whatever it is you will deal with it, the not knowing is the worst part.
I had GCA and have now been in remission for 6 years and counting.
Hi Fiona,
I have recent diagnosis too. Been given 6 x 5mg (30mg) for 4 days, then dropping down daily by hospital. Have appt with doc this pm, so will check this dosage with him today. Sounds like 5mg to start is a little low?
How low have you been told to drop the dose? Daily reductions are a bit strange...