hi..back with another question. I know this nay be so individualized that an answer might not be possible. But...on average after tapering off prednisone with actemra, how long do you continue taking actemra alone? Is it determined by when you have no more flares? How do they tell GCA has gone into remission?
You can see I'm very new to this and very ignorant, just feeling my way through and gathering information to help me decide if I should opt for the actemra which was offered me...thanks so much for your feedback.
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In the UK, there is limited access to tocilizumab/Actemra so you stop the injections at the end of the allocation awarded to you - normally a year but it was extended during Covid. So you would get the jabs for up to 52 weeks, reduce the pred dose as well as you can in that time and then stop the TCZ and see what happens then. Some rheumies are introducing methotrexate instead of the TCZ. And you get a year by date - not 52 injections that you could spread over longer by taking it bi-weekly instead of weekly or because you have had to delay jabs because of adverse effects or illness.
Other countries have different rules with no time limitation. Then they generally seem to sort of follow the clinical study by continuing the TCZ until the patient achieves zero pred - although that only happens for about half of patients - and then they taper the TCZ to see if remission is maintained without TCZ. There has been a follow-up study but I can't quote the results off the top of my head. As I say, half of pateints are not able to stop pred altogether without a return of symptoms - because there are at least 3 different mechanisms for the development of inflammation in GCA and TCZ only works for one of them, mediated by the cytokine IL-6. If either or both of the other two are involved that continues unabated and pred is needed to manage the symptoms. Some countries may be prepared to fund ongoing TCZ indefinitely as they do for RA (which happens in the UK too).
Thank you so much. Very informative. Had no idea. It is very helpful so I learned a lot. Very interesting about the3 mechanismS of inflammation. Well, thanks again and best of luck on your own journey.
Hi, PMRpro. What are the 3 mechanisms for GCA for the development of inflammation? Even with the negative biopsy and the additional diagnosis of medial sclerosis my GCA symptoms on 60mgs. prednisolone have only diminished slightly. Very interested in more education on GCA.
If it really is GCA then pred works for all 3 mechanisms - where it is important is in the use of Actemra for example - it only works for one of the three so the other two require pred. However - it may well be 60mg isn't enough, some people need 80mg or more. One approach is to use a 3 day pulse therapy with 1000mg/day steroid as infusions - and then drop to 60-80mg.
The main mechanism is the production of the IL-6 inflammatory substance, The other two involve T and B cells creating inflammation (I think). They are mentioned here:
Thank you. My Rheumatologist doubts GCA and now recommends reducing to 9mgs. which I was down to when I had the second cataract (right eye) March 29, 2022. I went down to 24mgs. after the 60mgs. and flared right away. Immediately went back up to 60mgs. Still not enough. I supplemented with an additional 15mgs. mid-morning after pain resumed after 60mgs. at about 10:00P.M the night before. This additional dose did relieve my symptoms. I am waiting a return call from my Rheumatologist for a re-order of my prednisolone. I am very concerned he will not supplement the pred and he said previously he didn't think I needed Tocilizumab with the reduction in pred. and without a positive diagnosis for GCA. I'm very concerned I'm not being taken seriously and don't know how to proceed. Thank you for the link.
I will forward it to my Rheumatologist if he still does not treat me. I truly value you and your expertise.
It really concerns me that they aren't as aware of the multiple factors involved as they should be. But there are other causes of GCA-type symptoms - although there is a lack of awareness of that too - and you DO have one of them.
Do you mean the Medial Calcific Sclerosis I have been diagnosed with? No answers or help there. I will continue to be persistent and speak to as many Drs. about this condition as I can. I will be seeing my Endocrinologist on May 11th. about my hypothyroidism and osteoporosis. I have a new appointment with a Cardiologist that my Rheumatologist recommended on May 16th. for possible Aorta complications for the calcium deposits. They are all located at a large Medical Center here. I am somewhat relieved after seeing the cataract surgeon about my vision. Although still having sensitivity to bright light. I am going to hold off on filling the new eyeglass prescription for a while. I am also going to continue with the 75mgs. dose of pred as I am getting some relief. The fogginess and confusion is uncomfortable. Can't seem to find my words and think with clarity as usual. Need some answers. Your replies are a Godsend. Someone that takes me seriously!!! As well as all the people here. Great resource of knowledge and compassion. Thank you all.
Yes. The pred could be causing those symptoms - brain fog and confusion aren't uncommon. Though I suppose it all depends where there are calcium deposits doesn't it?
Yes, the calcium deposits are the relevant question. Do you think the increase in Pred. is causing the brain fog and confusion acceleration? Or just common symptoms of PMR and possible GCA.
Impossible to say really - but it could be down to the pred dose - that is a pretty hefty amount. But autoimmune diseases of most sorts are also associated with brain fog etc. I can remember PMR made me struggle with concentration - had to read something more than once to get the details. That improved a lot once I was on pred but I was on a relatively low dose, only 15mg in those days.
High pred also doesn't help decision making - and I suppose that might also get mixed up with confusion. Some of the GCA ladies can probably tell you more about the effects of high dose pred - DorsetLady or Snazzy for example.
How do I direct my questions to them? I also have additional questions about alternate sources of diagnosis. I really don't want another biopsy on the other side. I've read this is an option if suggested by Drs. My insurance coverage is also a question. It was really expensive for the recent surgeries I've had. I have very good coverage, but I don't want to over-extend. I have concerns over and above the ongoing inflammation I continue to experience. I know the stress is complicating it all.
Can't really help with diagnostic options - temporal artery biopsy or ultrasound but that isn't universally available whereas biopsy is. Beyond that it tends to be a clinical diagnosis: symptoms, blood tests and response to pred really. I think it has to be up to what they have available and whether they think things are complicated by the calcium deposits.
I worked in medical science in all sorts of roles for all my working life which required a background in a wide range of things. I have a physiology degree as well having been qualified in a job that needed a knowledge of biochemistry and medical sciences. The entire family worked or works as healthcare professionals - and a lot rubs off! Big bucks? With a science degree? I wish ...
Your resources for re-direction to relevant information and topics is remarkable. It doesn't surprise me that you have so much exposure to the medical information and expertise in this field. You truly have found your calling. You impress me every time with your responses to my concerns. Please keep up the excellent work that I know we all appreciate here. It must be so rewarding to have entire family work in this field. We surely need it. Especially in these harrowing times. I wish there were more dedicated individuals today. Thank you again and "HAPPY MOTHERS DAY".
Its a difficult call with the biopsy. If its a positive result they are after, the high dose Pred may reduce the likelihood plus it may not be on the sample dissected. The Pred has had a beneficial result which suggests some inflammatory process going on. My biopsy was negative and my blood results normal but I was treated as GCA on the basis of symptoms and rapid improvement with 60mg Pred. If it is all due to calcification, why does the Pred help? I’d like to know?What did you want to know about side effects?
I hope to get the answers concerning calcification complications. I've read some of the information about side effects. I am getting foggy again after so much writing and digesting all the valuable information posted. I'm going to take a break as I don't want to press my luck. Headaches and jaw pain somewhat relieved on the 75mgs. prednisolone. I want to make banana bread for my son coming for Mother's Day tomorrow. Wishing all a great day.
Can’t say I had the issues you refer to when I was on high doses -a bit foggy maybe and certainly hyper, but not issues with speech and recall.,
If it were me, I’d be pushing the specialists to be double checking your diagnosis -and ruling out anything else that could be contributing to how you are feeling…and not assuming it’s all down to Pred. Of course some of it may be, but needs checking I think.
Don’t think we can speculate on what else it could be, sorry, so you do need to be badgering your consultants
I'm still in the middle of this GCA journey, I'll share my personal experience. I'm in the states and there is no problem getting Actemra.
Actemra was a game changer for me because initially, 2019 increasing the pred up to 125mg per day did not calm my symptoms. With Actemra I was able to get to where I am today, 9 mg. Some have told of more UTIs etc. but that has not been the case for me. I still take it weekly but have a friend here who kept taking it after she stopped pred. Her doctor had her take it every few weeks, then three and now once a month.
That is in the future for me and I'll do whatever my Doctor says...fortunately I really like my rheumy....my very best wishes and you will find this forum a lifesaver!💕💕
Thank you for sharing your journey. I too am in the states.still weighing pros and cons in deciding whether to go on the actemra ( but I haven't really heard much cons). Wow you were on such a high dose of prednisone! Congratulations getting down so low. Best of luck to you. Love this community!
When I was diagnosed in Maine...I couldn't seem to find anyone to tell more about this disease. I love the forum. No question to silly.
I can only say the Actemra really helped me. Those high doses didn't do my body any favors, as you can imagine. My memory is kind of fuzzy, but I don't think it took too long to get to 40mg. per day. I've not met anyone who couldn't take it...a few who dropped it because of increased infection.
How much pred do you take now? I may not be on my computer for a few days, but please keep in touch...💕
Hi. I was on 80, now at 40. Dr was dropping me 10 mg every 2 weeks but just saw a rheumatologist who said no, no! Drop 5 mg every month. At least for now. I'm sure as it goes lower, it will be different dosage drop. I was feeling kind of bad with the big drop so glad she changed it. This new rheumatologist diagnosed me, the neuro opthamologist wasn't sure because of negative biopsy so she referred me to rheumotologist. Thank you for your interest and support! Be well.
Forgive me...I just saw this!!!! I am so glad you saw the doctor who said, no, no and NO! I had gotten down to 15 when I had a flare and vision issues, so no rush for me. I went back up to 40 an stayed there for a while, honestly can't remember just how long. Then my rheumy started reducing every month by 2.5 per month until I got to 10. It went smoothly except for the first 4-5 days after dropping...I'd go through fatigue, some nausea but knew it was temporary.
Then he had me drop by 1mg each month but later changed it to every six weeks.
Since I lost the left eye, I see the neuro-opthalmologist each month, two weeks before my rheumy. I developed, or I should say, I have optic neuropathy in my right eye, so he scans the optic nerve and does a visual field. With his treatment, that has improved greatly. He and my rheumy work well together, but the prednisone dosage is the rheumy's call....and the Actemra.
Grammy, so good to hear from you. Sorry about your eyes. Glad you're getting goid care and follow up. Of course the eyes is such a fear and worry. Your tapering info helpful. And you paint! Hooray! A kindred soul! What do you most love to paint? Wishing you all the best. Stay in toucb!
Yes, it is a saving grace. I've done oils, acrylics and watercolor. Mostly just watercolor the last year or so...but I'd like to try acrylics again. I think it is so key to have a place for our 'brain' to go that is pure relaxation and distraction. It is different for everyone but it sure helps.💕 (I'm definitely an amateur---but a happy one)
A saving grace indeed. It nourishes my soul and mind and keeps me sane. Since all this going on I started keeping an illustrated diary...kind of cartoonist to keep a light and humorous take on everything (adds balance, fun, perspective) in pen and ink and watercolor. I like to go out into the city ( nyc) and do urban sketches. Good painting to you! Enjoy!
I live in France. I was diagnosed with GCA in April 2020, in hospital, by a consultant, after more than 3 months of illness which seemed to appear out of the blue. Since then the same consultant has dealt with my case in conjunction with my GP.
I started immediately on 40mg of prednisone with a plan for a gradual reduction, providing the CRP level reduced as well. In August 2020 I was deemed to be corticosteroid resistant because when I tried to reduce below 30mg the CRP increased. The consultant said that she didn’t want me yo-yoing on high doses of prednisone long term so she introduced weekly injections of Actemra (Tocilizumab) at the end of August 2020, with a tapering plan that would eventually bring me off prednisone.
I was very apprehensive at first as I did not want to take anymore drugs but now I know it was the best thing.
I finished with prednisone the following January (2021) and continued with the weekly injections of Actemra. I started to increase the gap between the injections in April 2021, going to 10, 11, 12, 13 and eventually 14 days. She would not let me increase it beyond 14 days so since then I have been having fortnightly injections. This will continue until the end of August this year. By then I will have been taking the injections for 2 full years. After that the consultant will allow the gap to increase gradually to and we will continue to monitor carefully blood tests results and symptoms. Providing everything is fine I should be finished with the injections by August 2023.
She is being cautious as she does not want a relapse and wants to be sure that the GCA has gone into remission. The only way to tell is to monitor what happens when on no medication at all. We have agreed a fall-back plan if I were to have a sudden GCA crisis which involves taking a high dose of prednisone and reverting to weekly injections. Consequently, I ensure that I carry some prednisone tablets with me at all times and that I have enough Actemra in stock.
Since my diagnosis I have benefited from seeing an ophthalmologist every 3 months to have a full eye test including a scan. So far no changes have shown up and this gives me some reassurance and boosts my confidence. Having GCA has really knocked my confidence.
I would strongly recommend the Actemra treatment. I feel really lucky to have been offered it with no time limit and paid for by the French health system. So far I have not had any flares. That doesn’t mean to say I feel great all the time. During the first two or three days after the injection I don’t feel at my best. I experience a runny nose as if I was about to get a cold, some body itchiness which is more noticeable in bed, poor sleep and generally feeling tired. I don’t plan anything important for those few days. However, I know it will pass so I don’t let it worry me, then for the next 11 days I feel better again. It’s a cycle I’ve managed to cope with.
Luckily so far, I haven’t experienced any of the more unpleasant side effects that are supposed to be associated with this drug but I never count my chickens ….
I hope, if you decide to take up your doctor’s recommendation, that your experience is as good or perhaps better than mine. I wish you the best of luck and advise you to keep a positive attitude.
Thank you so much for sharing your journey with me. I really appreciate it. I've learned a lot; gained understanding. Yes, it seems the actemra the way to go and it is important for me to be positive as its all to easy sometimes not to be. You have had quite some experience. I admire your courage and fortitude. Thank you again and all the best to you.
I have been using Actemra monthly infusions for 5 months. It has enabled me to get to 3 mg prednisone so far. I do have high cholesterol which I had problems with before GCA. It got worse on Actemra so I started with a cholesterol drug and it has come way down. Actemra has been a game changer for me. It made me feel almost like my old self. I’m praying it helps me to get into remission but who knows with this disease. The only issue I have is my veins are now very hard to find. Between the monthly blood tests and infusions my veins have suffered. Of course when I was diagnosed I was in hospital for 2 weeks because doctors couldn’t figure what was wrong with me. I had blood work done every single day, sometimes twice a day. My veins never fully recovered
My insurance will only pay half of the injections which leaves me with $1600. every 4 weeks. If I do the infusions my insurance will pay the entire price. This is American healthcare! Before everyone starts writing about getting Gerentech or Actemra to help pay, I tried everything. We are not low income so I couldn’t get help anywhere. I know sometimes Gerentech will help no matter the income but at the time I tried I couldn’t get anything
Yikes!!! I'm in the states and pay $9.45 for five pens/syringes for weekly injections. I know the insurance industry here is making a lot of the medical decisions!!! I have Aetna Medicare Advantage which does not have the best of reputations! Depending on your life situation and age, would a second plan or different plan be an option? Wow, $1600 a month, that is terrible!!! So sorry..my best💕
I have Medicare and Humana as a supplement. I pay separate for a drug plan. I love my insurance as I have no copayment and can go to any doctor I want in US. It’s just the drug insurance I’m not happy about and that’s a big one! I think Advantage plans have better drug coverage
Hi. Thanks for responding. I don't know if rheumy is thinking injections or infusions. I see her again may 31st but my Neuro doc said that she does the infusions. Your vein situation gives me something to think about and consider. I'm not sure best what insurance here pays for but I think either. Ill find out soon. Take good card and be well.
There are more plans of insurance than there are seeds in a pomegranate! Ten people could have Aetna Medicare Advantage and have different coverage. My husband was an electrician at a steel mill with a worker's union. The health insurance is negotiated each year, and the fellows that are still working lookout for the retirees because one day 'they will reap what they sow.'
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