Hi new here
Posted , 9 users are following.
Hi all, im a 53 year old women, i was diagnosed with PMR and possible GCA on 2nd Sept after months of muscle pain,( sometimes i could hardly get out of bed in the morning), i also had a few headaches and a bit of scalp tenderness, i was put on 40mg prednisone and told i would see a rheumatologist within 72 hours. Well i didnt actually get to see one until 5 weeks later after 3 cancelled appointments. I had temporal scans done and armpit scans on 9th October and told no sign of GCA , but surely after 5weeks on 40mg its not going to show up anyway. The rheumatologist said she thought i was too young to even have PMR but ive spoken to lots of people that have it in my age bracket. She told me i could start to reduce my pred which i was so happy about because ive been feeling rubbish on it with all the side effects. This is the tapering she wanted me to do. Drop 5mg every 3 days till i get to 10mg then 1mg every month till im off them. Well i started reducing on 10th oct down to 35mg then 30gm on 13th, i was due to drop another 5mg on 16th but started getting headaches in my temples and scalp tenderness, i emailed the rhuematology dept at the hospital for advice, they said up it to 35mg and wait for another appointment. I actually put it back up to 40mg to be on the safe side but after 5 days of being back on 40mg i still have the headaches and scalp tenderness, has anyone else experienced this on lowering there dose and do you think she wanted me to taper too quickly. While i was on 40mg for the first 5weeks i didnt have temple pain or scalp tenderness, i had other headaches but not in my temples, i only had temple pain before i started on pred, i would really welcome your veiws as i am a little worried about it
Thank you in advance
0 likes, 17 replies
EileenH tina89346
Posted
You really do need to see a rheumatologist who is up-to-date on guidelines - there are plenty of people with GCA in their early 50s and anyway, it being unusual in under 50s doesn't mean it doesn't happen. When it happens in younger patients it is often labelled Takayasu's arteritis - also uncommon, but it happens. And NICE has recently issued guidelines that say "over 40" for PMR.
It is not uncommon for it to be difficult to get symptoms under control again once they have been allowed to flare up and there is also the possibility that it was initially caught early and the disease activity has now increased, requiring more pred.
That taper was crazy - asking for trouble after 5 weeks even just for the discomfort of reducing and if this is GCA (and there is enough evidence to say it could well be) it was a risk.
tina89346 EileenH
Posted
Thank you for your reply, I've just rang 111 to ask advice too as I have also been having very slight blurred vision, a dr is going to ring me back in the next half hour.
janet06653 tina89346
Posted
I want to echo everything EileenH said.
If you are having blurring vision you could be having pressure on your optic nerve which could cause blindness. The best test for GCA is s temporal biopsy !!!! an ophthalmolohist should be able to see that optic nerve and order the test if needed. do not ignore the vision problem esp. with the head aches!!!
tina89346 janet06653
Posted
Hi, thank you for your reply, I had an eye test a few weeks ago as I was worried about possible GCA, I was due for one for another year but explained my concerns, they have a new machine that is similar to a hospital MRI scanner which costs an extra £10 to have done, so I went for it, the optitian said my eyes looked very healthy so I'm assuming they would be able to see anything untoward.
EileenH tina89346
Posted
Not necessarily at all - they can see the effects of longer term poor blood flow to the optic nerve. But it can start suddenly.
janet06653 tina89346
Posted
I went to a major AMC Eye hospital and they missed the GCA at first because the DR was not well trained. BLURRING vision can come and go as well as the swelling around the optic nerve. In my case the GCA was confirmed bu a temporal biospy.
Anhaga tina89346
Posted
My ophthalmologist gave me a very careful examination. He also for the first year had me return for checkups every few months, especially as I had raised ocular pressure. Now that is down, but I still have to go back annually, rather than every two years, as long as I'm on pred.
He also at that first examination after my diagnosis gave me more information about pred and the possibility of GCA than my GP, who never mentioned GCA. He actually said it was a medical emergency like a stroke.
EileenH janet06653
Posted
To be fair - it is VERY difficult and the TAB isn't accurate either, it can be negative when it really is GCA.
janet06653 tina89346
Posted
It is not your eyeballs that need to be scanned it is your optic nerves. That is usually a separate test. Did they tell you your optic nerves are ok?
tina89346 janet06653
Posted
I cant actually remember, i just know they said my eyes looked very
janet06653 tina89346
Posted
Do you have a summary report of the test results, that should tell you what they saw.
You are probably ok they must have looked at the optic nerves.
tina89346 janet06653
Posted
No, they didnt give me one, maybe i could go in and ask if they could print something off for me
EileenH janet06653
Posted
I'm not sure what test you are thinking of? The eye specialist can see the effect of poor blood flow on the optic nerve - it makes the area where the optic nerve leaves the retina appear swollen and pale. But that takes time to develop and won;t predict sudden loss of blood flow to the nerve in the brain.
ptolemy tina89346
Posted
I always ask for print outs of everything, although it can be a hassle getting them from some places. It is really useful I find for future appointments when they seem to have lost half my history if not all of it.
Anhaga tina89346
Posted
A couple of weeks ago saw a description of exactly the same awful taper, I think on another forum. Wonder if you have the same doctor! If I can find it I'll private message a link to the conversation as I think our answers are relevant to you as well.
But the short form of advice is your doctor is wrong and your taper is too fast in too big steps.
ptolemy Anhaga
Posted
Sadly I think that there may be more than one doctor who suggests these mad reductions. oh that they were on pred.