I am in US and on Actemra 24 weeks and prednisone 12.5 and having right temple pain and right eye pain ...started at 60 mg prednisone in August-Sept 2022 ...don't remember exact month....
told Rheumy about my pain and he said he doesn't think pain is from GCA and to continue at this dose because my markers are normal...and also continue to taper gradually...easy for him to say but I worry about vision loss since this is my good eye...
Find a new doctor. He is risking your eyesight. I had to go to Mayo Clinic in Wisconsin to get my rheumatologist to stop rushing the taper. My PA has been wonderful in helping me to manage my slow taper. Don’t be afraid of leaving the practice. God speed.
Would expect markers to be ‘normal’ - both the Pred and the TCZ keep them low…
your Rheumy should be taking more notice of symptoms…..not just the inflammation markers.
I would be staying at 15mg for a while longer, and finding a Rheumy who has a better understanding of GCA and the drugs he’s prescribing.
He may be correct in that it’s not GCA, but he should at be considering it first and foremost….and the fact this is the second time in a few months should also be telling him he is reducing you too quickly.
I agree, but I tried to find a new rheumy and was denied , not sure why....will have to investigate further...the last one was accepting new patients, but when I called about the denial, they said they I was denied, and started to explain why, but then she seemed to cut it short by simply saying they were not accepting new patients.
She is the one who referred me to the rheumy I have ....After doing a little research which I should have done from the beginning, I found 70% of his patients who posted reviews was 60-70 % among several different sites...The top two were "arrogant" and "doesn't listen to his patients"
"he said he doesn't think pain is from GCA and to continue at this dose because my markers are normal"
Of COURSE the b£^^** markers are normal - you are on Actemra. You cannot use sed rate and CRP to monitor disease activity when you are on Actemra because of the way it works.
I'm beginning to think they should be made to take an exam before being allowed to use it because so many don't appear to have a clue! I was on just under 20mg over a year ago, after a year I am still only just trying 6mg and I only have PMR. Actemra isn't as magic as all that - it only works 100% for half of patients and some get stuck about 10mg pred.
You really do need to find another doctor who will show more understanding - so good luck.
I just looked at your bio to see where you live in the States. You have been given good advice. I was curious whether you were near Mayo Clinic or a large city with teaching hospitals; Boston, Chicago?
I've had GCA since August 2019 and just got to 10mg in February 2023, the first time. Please take all the excellent advice given. I've been on Actemra since 2019, also. It concerns me that he has you moving so fast....way too dangerous.
I saw in another post you said you were 'denied.' I don't understand that and am interested. Like you, I have one functioning eye because of not being appropriately diagnosed, and I only found out I had GCA when I lost sight in one eye...I'd been told I had the flu for almost a year. Your markers will always be normal with Actemra. I'm concerned that this individual may not treat you appropriately if you get an infection, for example.
It might help for you to see an ophthalmologist. Just a thought as I have been having checks with mine every 3-6 months since the onset of GCA in 2020.
I too have Gca and PMR since diag. in june 2021. All advice given here is sound and agree too fast a reduction. I'm on Leflunomide to help reduce my pred. Now down to 15mg daily and so far ok at 10%max.reduction each step at 3-4week intervals or depending how I feel. Ignore your specialist and do what feels right for you whether you change them or not.
No. Once your eyesight is gone, it’s gone. I lost the lower 1/3 of my right eye. So I am extra vigilant about that eye. I saw my optometrist frequently, ophthalmologist twice and rheumatologist frequently. My rheumatologist put me on Actemra and monitored me.
Having right sided headaches and eye pain definitely scary! I too have those symptoms, but recently no eye pain/ pressure. I had been on prednisone for 2.5 yrs, and Actemra one and half year, stopped Actemra in March as elevated liver enzymes, and getting down to 0 prednisone end of this month.
My story: diagnosed with GCA, but temporal biopsy negative. My eye pain/ headaches did not subside after 1.5 years on prednisone, methotrexate, and Actemra…actually was feeling worse. Originally had elevated esr and crp, but immediately went to 0 after on high prednisone dose. Questioned Rheumatologist on diagnosis, but she felt( still does) that was correct diagnosis. Was able to get an appointment at University of VA Vascular clinic( took 6 months) for second opinion. They did a full body CT scan, and discovered I have FMD. It is a vascular disease, not inflammatory, that can be cause of my headaches, have beaded arteries, 90% diagnosed with this are female. So jury is out regarding if I had/ have GCA…..probably will never know. Getting off of all meds was recommended by vascular doctor, wait until August and do ultra sounds and scans to see blood flow, etc. I see a stroke( vascular) neurologist in July, although Head CT was good, still having headaches. Was told he be able to address my headaches. Sorry this is so long….but I would highly recommend getting a second opinion. The rheumatologist says GCA, the vascular ct radiologist reported no signs of previous or current inflammation in regards to GCA. Doctors doing their best, and grateful for their help, but second brilliant mind might be able to help you with this journey. I actually feel better as saw CT and could see beaded arteries, don’t like diagnose, but knowing what disease I actually have is most helpful. Wished they had done full body ct when i was first so ill. Best wishes!!!
same here Joseph14612. i'm down to 15mg pred now so very wary of resurfacing headaches. Eye pain, pressure and 18hrs of headache when at worst before diagnosis I don't ever want again. Hoping i don't flare as I reduce. This is the lowest I have ever managed to get.
Eye pain was at 12.5, which is my lowest....still on 15 but headache comes and goes, depending on what I ea, I think......trying to figure out what that is still...
Now, after a week at 15, I am getting more headaches...but no eye pain....thinking about going up to 17.5 again....but I don;t want to....does Tylenol help you? It helps me some what...called paracetamol in UK
If paracetomol works for you it is unlikely to be GCA. I tried everything before pred and nothing reduced the pain. It sounds like it may be a flare but could be something else entirely.If it isn't GCA then maybe the pred is causing headaches. I believe that may be a possibility. Biopsy won't show whether you have it as taking pred for a long while usually negates the procedure.. I am on Leflunomide to help reduce. It seems to be working but steady as we go is now my motto. I'm waiting for bloods to see if inflammation is down still. Sorry not more helpful.
Paracetomol does not always work, that's what is confusing....I read the DSNS weaning guide and thinking about trying that, even though they were talking at the 5 mg range...
The DSNS concept was originally developed to deal with doses below 5mg because that was where the Swedish originator had problems. But it is appropriate to use at any dose at which you start to have problems - whether it is above 20mg or not until under 10mg.
Still had headache even at 15 mg, so bumped up to 17.5 for a couple days, today I am back at 15 and will stay there awhile...so far so good...I also have neck pain for the last few months. I went to PT for a couple months but no difference. I wonder if neck pain is causing headache, so made an app. for later this month with orthopedic. If nothing else works will try DSNS method. I also discovered a couple foods I have been eating that were high in trans fats, stopped that immediately!How are you doing?
I'm basically ok and managing. Not much improvement. Your neck pain is contracting muscle and as the blood supply passes through that muscle to the optic nerve you need to release the tension. Contracting muscle is related to oxygen deprivation in the muscle and is a PMR symptom. I had this and the only release was pred. because massage will have some effect in improving blood flow but won't stop pain. Don't reduce until neck stiffness and pain reduces.
I'm still at 15mg and by the end of the day i get stiff and painful neck especially if I've been at the computer. My bloods of 6 weeks ago showed crp at 8 and esr was 5. That doesn't mean that they haven't risen again. It could be PMR rearing its head again or GCA or it might be neck and eye strain from too much screen. Just be aware and play safe. Sometimes things become clearer with patience. Remember the hare and tortoise story.
I went up to 20 mg for 3 days because headache persisted at 15 and dull headache at 17.5… going to try 17.5 again tomorrow. Also getting bloodwork this week, my CRP and ESR have been 0… but that’s because of Actemra… I think sitting at computer has been affecting me too… thank you for the encouragement… take care yourself 🙏
An increase of 5mg for only 3days may not be long enough. Usual advice for dealing with a flare is 7-10 days to ensure all built up inflammation is cleared…. You can stay 14 days without affecting the drop back down to previous dose.
As you still have dull headache sounds as if you haven’t cleared the symptoms-and if that’s the case, then you haven’t achieved your aim. You need to hit a flare hard, not pussyfoot around.
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