New here! Naively, I thought if I did everything doctor advised, I would be “cured” by now.
Now realize this seems to be an ongoing condition, with many setbacks. I have tapered to 8mg prednisone, 10mg methotrexate, and started monthly infusion of Actemra in February. Still have symptoms, particularly in jaw….face feels active! I find the information posted here most helpful, as the disease, along with Covid has been a bit isolating. Beginning to have eye, skin and bone issues …think from prednisone, thus tapering setbacks are most discouraging.
I started seeing a Physical Therapist for neck and back discomfort, and to see if would help with tingling feeling on right side of face, thigh, and occasionally arm. Have seen improvement,
How do you know if symptoms are from meds, tapering, or disease?
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Sorry you have GCA, been there, done it, got the Tshirt …GCA is not cured, it’s a self limiting disease which means and, it comes, it hangs around, and it goes, but no one am tell you long you’ll have it….average is around 4 years.
Have to say, 2 years in I would be a little concerned about jaw if it’s GCA related, could be something like TMD/TMJ - see link -
Bone issues, have you had a DEXAscan or do you know if you have osteopenia - this site (uk based) may help - but sure you have something similar in US- theros.org.uk
Can you clarify various aches and pains you refer to…they sound a bit random if you have GCA only…are you sure you don’t have PMR as well?
But virtually all pain is masked by high doses of Pred, which return as you get back down into single figures, so they could osteoarthritis or dare I say it, age related…so bit more info might help.
Did you know that half of GCA patients are unable to get off pred entirely even when n Actemra/tocilizumab? There are 3 different mechanisms that can create the inflammation in GCA - Actemra can only combat one of them because biologics are extremely specific. It is also unusual to use the monthly infusions for GCA - the trials were done using the weekly injections. If they are involved in your GCA, you need some pred to manage the inflammation due to them.
If you describe your problems we may be able to help. But "bone problems" - have you had a dexascan that shows low bone density? You should have had the bone density checked at the start and recommended how to maintain bone density with calcium and vit D supplements, if it was very low, medication can make a difference.
What is the eye problem? If it is pressures - there are eye drops to reduce the pressure. Dry eyes are often a consequence of autoimmune disorders but can also be due to pred - there are products that help.
It helps skin problems to moisturise like mad - use an emollient product and NEVER use soap or any product that foams. I use shampoo and no other soap product. My skin is only now beginning to thin after nearly 13 years on pred.
Thank you for links and insightful information. TMJ was ruled out by dentist and PT did not think I have either. I don’t have pain, more like aching…have had on and off since last July. I also have puffy cheeks at times(of course could be prednisone too),but I can feel cheeks swelling and intermittent tingling on right side of face, around eye and cheek.
The skin is flushed, feels hot, and itching…only using jobs oil on face for now.This just started last month.
I am getting the monthly infusions now. Doctor had started me on biweekly shots in September but was only able to get 4 autoinjectors….then went three months with nothing as there was an Actemra shortage….so this was her “work around” the shortage. I cannot find any information if the monthly is as good as biweekly, and from trials I read, seemed weekly injections worked best. Any advice?
I wonder if I have PMR…Doctor does not think so, as I am able to get up and move around in mornings. She says her patients can’t move in the mornings with pmr….I do have some aches/ stiffness….work hard to make sure I stand straight, it takes my core muscles being engaged….that part has gotten better.
My feet hurt….could be tendons in shins, or plantar fasciitis, bones in feet ankle ache…started wearing boot at night and doing feet stretches, and strengthening exercises, and lowered my daily walking mileage.
. Had a dexscan -will be 2 years in July, and not eligible for another until 2 years are up.
Eyes burn….use drops for dry eyes…eyelids are puffy, although not everyday, and vision can go completely blurry. Always aware of my eyes lately…..
4 years whew!!! Have been on the low inflammation diet, put in time every day trying to stay as healthy as possible. Due to thoracic aortic aneurism can no longer run, thus started walking. Had two times during past year and a half when I felt normal…..it was so nice….will stay optimistic.
So…you replies make me wonder if I should up the prednisone dose, except last blood work esr and crop numbers were good.
Lots of things sound very PMRish to me, despite what doctor says about mornings. People can’t get out of bed before Pred, but once on it they may feel achy and a little stiff first thing but not to the extent she’s expects. But would agree that maybe 8mg Pred a bit low - perhaps a week at 10mg just as a trial would help, then you could discuss with doctor.
Flushing and face could be side effect from one of the meds, as are the eye issues, but you seem to be addressing them.
Can’t comment on Actemra, it hadn’t been licensed for use in UK for GCA when I had, so no experience, sorry.
Yes, gca is a long slog. Anyway, your esr & crp labs will not be reflective of inflammation when on actemra. Read about this in actemra rx insert. Hope you feel better soon.
Thank you PMR pro…..what are the three 3 different mechanisms that can create inflammation in GCA? Had no idea! Don’t like statistics on prednisone….but good for me to realize I might not be able to taper completely off.
Many thanks for taking time to reply and your information-think I answered your questions in reply to Dorset Lady….both of you are the best!
Something involving t and b cells I think and something else I can't remember off the top of my head have been implicated for some time but still very much in early days of understanding.
This is a heavy read but discusses possible options that have been considered - and some rejected:
Sounds as if your rheumy has a rather narrow view of PMR - although most are stiff in the morning by no means all are and if you are on pred you SHOULDN'T be stiff in the morning, Some of that has to do with how much people move during the night!
The numbers don't always correlate with the symptoms - when you are on pred they can lag a long way behind!
Sounds very PMR-ish to me but PMR isn't the disease, it is the name given to symptoms caused by an underlying illness and there are several that can mimic it.
Thank you once again for thoughts and link. Read once….tomorrow will re-read, and get out paper and pen, thank you!
On another note-anyone tried red light therapy? Curious, since it is supposed to help with inflammation. Plan on asking doctor when I go in for next infusion.
Good morning. I was diagnosed with GCA in May 2020 it has been a rocky up and down road and l also thought if l did everything advised l would beout the other side by now.. l have skin issues and boney problems plus low mood and other steroid induced issues. Io saw my Rheumatologist last week and he said if your inflammatory markers are ok following a recent blood test then you are not having a flare and to expect things to get tough as you reduce the steroids.
Rheumys are wrong when they day that. Bloodwork can lag behind symtpoms. And all guidelines say treatment should be based on symptoms and not bloodwork.
I think the rheumys sometimes don't credit us with any sense as to how we feel and what we are telling them. I think what you describe happened to me last November. It seems logical that blood work would do what you describe.
Kashmir-Thank you for sharing what your Rheumatologist said. Interesting. I can deal with not feeling great….but the temporal headache and jaw ache worry me that I am having a flare, and it is not just steroid taper. Sorry to say, but it made me feel better to know you too have had a rocky road, and I am not alone. Dorset Lady said it took her 4 years for remission, mentally that was good to know.
It is great isn't it to know that you are not alone or going crackers. The temporal pain and headaches really gets to me as l am scared of another flare up. I sometimes feel that l am annoying the rheumatologist by contacting him. Which is daft as that's what he is paid for. All we need sometimes is a bit of reassurance.
It is scary….we have all read enough to know what GCA can do to our bodies. It is the unknown of what our pains/symptoms mean that are scary…tapering vs flare up? Then dealing with the unwanted side effects from meds, when not able to taper. But…today is another day and we can choose to make it a good one by ….how lucky are we? I am grateful to have found this forum-helped make sense of so much that is going on with this disease.
I am also so pleased to have found the forum, it makes it a bit less of a solitary, scary and confusing time. You are so right we are so lucky, l couldn't believe it when offered a fourth vaccine. And despite the pandemic the medical people l have been able to access have mostly been fantastic. Have a great day. The sun is coming out here.
I've had Actemra since December, autoinject because there was a shortage of the pens. Obviously it is different in the States, but maybe there will be more autoinjects soon and you will be able to swap? Much more convenient not having to go to the hospital!Ever since my GCA diagnosis last year my face has been tingling in a band between the mouth and eyebrows, and feels more swollen than it looks. The more fatigued I am, the more the tingling. I don't know whether that is the same as yours. The rheumy said he had no idea what it was.
How interesting! Yes tingling on one side most the time, last few days both sides. It goes away at times…then magically/sadly reappears. My face is more swollen when tingling present. When I mention it to doctor, there is never a response as to “why”. Saw Neurologist as wondered then if symptoms not related to GCA, he sent me to a spinal neck PT, as thought could be nerve compression, have been going 2x a week, have times of reprieve of tingling, but this morning my face is active. Although PT has helped with my neck discomfort.Yes…hopefully can get back on the auto pen….not sure getting all my Actemra in one dose infusion is good since can’t find any info from trials…everything I have read people are on every week or every other week.
Thank you for letting me know you have band of tingling too….love this forum!!!
The infusion is used for RA - for some reason they decided to only use the weekly/biweekly injections for GCA. I suspect because a bit of variation in the effect is not particularly important in RA but might be in GCA. The infusions are probably less restricting for travel as you have 4 weeks space between,
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