As most know, I have GCA and was diagnosed in August 2019 when I lost sight in my left eye. The forum has kept me grounded, sane, through the roller coaster ride. There have been three occasions when I have gotten down to 8 mg of prednisolone but have always experienced vision issues in the right eye .
I was on 12 mg of Prednisolone and weekly injections of Actemra until September13, 2020, when the Actemra was stopped due to a staph infection in my right leg which is all cleared up now.
Two and a half weekends ago the rheumy wanted me to resume the Actemra so he could start reducing the prednisolone....like one would sub for the other. I've notice a few things since resuming the Actemra...I just generally don't feel as well..lethargic, fatigue and thought I had vertigo and fell into the wall a few times..the Actemra~?? I've had three injections and for the first time each has left me bleeding and a large area of bleeding under the skin. Thinking I may have been pinching my skin too hard when I administered the last shot I just laid it gently on my stomach...result was bleeding and a 3 X 3 inch area of bleeding under the skin. I'm also experiencing more bleeds under my skin and skin tears. Just to add to the mix...my vision in my right eye just isn't clear. I switch 3 pairs of glasses around and will be seeing a new opthalmologist next week and the rheumy on the 12th..taper date.
What do you think...? I'm thinking I'd like to get off the Actemra and see what we can accomplish with the prednisolone taper. I just 'feel'...no basis in knowledge...that the steroids and Actemra are too much. From my blood work it appears my body is saying...it has been too much for too long. My internist is focusing on my body...my rheumy is concerned about my eye....and I get it but I feel I must accept inferior vision in the right eye and at my age try to give my body a steroid taper we both can live with.
Well....that turned out to be a book...no matter how concise I tried to be...maybe being concise is not in my nature....👩🏿🤝👩🏼👩🏻🤝🧑🏿👩🏾🤝👩🏽👩🏾🤝👩🏼👩🏾🤝👩🏾👩🏾🤝👩🏽👩🏽🤝👩🏽👩🏽🤝👩🏽👩🏾🤝👩🏾👩🏾🤝👩🏾👩🏾🤝👩🏽👩🏽🤝👩🏻👨👨👧🤼♂️👩🏼🤝👩🏼👩🏼🤝👩🏼 You are ALL the best~!💖💖
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Grammy80
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Hello Grammy! Wide awake at the wrong time of day again.I am still battling on with Actemra (5months). My husband does the subcutaneous injections in alternating legs every week, since I got it wrong and squirted this valuable liquid everywhere. We stick a plaster on immediately. I have had no problems - he doesn’t pinch the skin and I don’t look. I wouldn’t want it in my stomach.
It would be interesting to hear what the Opthalmologist has to say about your eyesight. Are you thinking that Pred is making it blur? Or is about vitally protecting your good eye?
I got down from 40 mgs Pred to 10 mgs quickly without problems but I seem to need this last 10 mgs. You may recall that my diagnosis was GCA/LVV about 6 months ago. I am imagining that this combo is protecting my eyes. For you this is crucial. I am lethargic, demotivated, fatigued ( except some nights, bizarrely, like tonight). I am imagining that putting up with this may be worth it to see the GCA/LVV go into remission and give my system a break from high dose Pred and taper off some more. Has the Pred caused the thin skin easy bruising thing?
If this is muddle, sorry, I should be asleep. Nice to talk to you though.
Sorry, you are having a hard time with the injection...I don't even feel it, but I have a lot of 'hide.'
I'm going to talk to the doc about prednisone vs. prednisolone, although I've been there done that. What an experimental process...I often think accepting that is a huge part of how I feel. Yes, skin tearing is SO easy.
It seems it is more of a challenge to balance the meds...keep the faith and the forum~!💖
Have you told your doctor about the bleeding/bruising at the injection site? It is one of the things the Mayo has on its article about TCZ/Actemra. What dose had you got to before restarting the Actemra? Were you really well on it?
No, I haven't told the doctor...I'd gotten down to 8 mg a day, then back up to 12mg because of vision issues. Then off the Actemra for 3 months, he had me restart because he wanted to start reducing the prednisolone. I actually felt better off the injections even though I had a staph infection. My energy level was higher, and just a general sense of well-being..more relaxed.
I inject on Tuesdays, and December 15 was the first bleed and bruising...never happened before. The next week it was the same in the other thigh, so I thought I just 'lay' it on my stomach with no squeezing...same result.
I'm going to call tomorrow~my thanks; I Love Mayo. 💖
So sorry that you are just not doing well. There are so many drugs that can cause bruising and bleeding. I take Prednisone, inject Actemra and take famotidine for my stomach. All three can cause bruising and bleeding. I too had trouble with my injections and found I was pinching my skin too tightly and pushing the pen in too roughly. I was so afraid the medicine would not go in my thigh right. I was left with a bruise and huge red mark that lasted for two weeks. I’m much gentler now and things look much better. I too was exhausted when I first started the Actemra but things have gotten better. Instead of injecting every week I’m doing every ten days. I’ve reduced my Prednisone very slowly over two years an d I’ve gone from 15mg to 3.5. I know without the Actemra that would never have happened. I wish you well on this journey. It can be just so hard.❤️
Thanks, that is really encouraging. Life is so much easier when you can see the light at the end of the tunnel. I'm really interested in what the rheumy has to say. I often wonder how many of these meds affect my vision too? 💖
I'm sorry to hear of your struggles.....I like SJ had a mishap with the MT X injection, and this was when I was injecting into my stomach.....I now find it very easy to inject into my thigh...no pinching of skin either, this is why it is easier I think....hope this helps...good luck....
I can't add anything specific to the good advice already given, but I would like to tell you something I learned about injecting. An elderly friend was telling me that when she was nursing in a TB ward, the patients used to say how glad they were to see her doing their injections. I asked her why and she said that she learned her technique from an elderly GP. I have used this ever since she told me and have no problem at the injection site since. Use your thumb and forefinger to stretch the skin where you are going to inject (no pinch!) and insert the needle as usual. So instead of pinching the skin, I stretch it. Makes such a difference. Who would have thought?
Not at all. I did wonder whether it is to ensure the injections are given subcutaneously, but the needles are so short, you'd have to really push them in hard to even try to get in deeper.
You have had a really rough time? I hope the new opthalmologist can really help you, eye sight is so precious, please don’t just accept poor vision as necessary.
I identify with most of your issues.
GCA was diagnosed june 2018 with serious eye issues. I started on 100mg prednisone and I identify with the roller coaster ride. All the usual steroid side effects and then some. Moon face, weight gain, fatigue, anxiety, serious sleep and balance issues, type 2 diabetes, a cataract ramped up very quickly by the steroids (plus retinal repair surgery after the botched cataract surgery). Wet macular degeneration, again ramped up very quickly by high dose prednisone, so as an indirect side effect of GCA I lost sight in one eye, then to top it off I had multiple bihemispheric strokes due to GCA. and several minor flares.
After the strokes I went on Tocilizumab for the allowable 1 year and I identify with vertigo and falls (more than experienced just on steroids. (Are you on blood thinners? This could explain the bleeding).
Recently a horrible stint on methotrexate (far, far worse than Tocilzumab and now on mycophenalate with no problems, but still stuck on 8 mg prednisone. Recently led to believe I may not ever get below 7mg prednisone.
I live in Sydney Australia and from reading the posts I have gathered that over here the medical system seems different. Rather than a rheumatologist, I have a neurologist as my main GCA Dr and in addition to the 2 opthalmologists, I see an immunologist, cardiologist, an endocrinologist and two opthalmologists (a neuro opthalmologist and a retinal specialist). All are deemed necessary to take care of various aspects of GCA which is showing no signs of going away quietly.
I’ve noticed that many members from other parts of world seem to be a bit on their own with decision making re medication decisions / tapering etc. While I find it tempting to take things into my own hands a bit, my Drs are very prescriptive and I go along with this as my sight is too valuable, losing sight on my other eye would be the worst outcome of all, good opthalmology care is so important. GCA is not easy to deal with, I wish you all the best with this.
Oh, my...I hope you can feel me hugging you...because I am. I live in Indiana and have gained so much from the knowledge shared on this forum. In the states, I swear I feel like I might as well stand in a dark closet when it comes to shedding some light on GCA. We share a great deal.
It sounds like you have an excellent medical team. When I lived in Maine, my ophthalmologist was the glue to the general physician and rheumatologist. Here I have a really knowledgeable internist and the one I feel most comfortable with. Today I will try a second ophthalmologist....I want 'a physician for my eye' to work in concert with the rheumy. I don't expect miracles, but my visual field now shows a fair amount of blind areas in my right eye...I want to maximize my vision, not hurt it, and preserve it. It sounds like a big request...but I want the best 'chance' I can get. Now when I go to a closet, it just looks black if it does not have a light. So we shall see.
I was put on a full aspirin for one year, 325 mg, but that was stopped in August of 2020...I think the bleeding is steroids. Yesterday I bumped my leg, and my skin tore two inches and bled like a public fountain. Initially, in 8/19, I was on 125-100 mg of prednisone daily until early (about) 10/19 when I went to 64mg methylprednisolone plus Actemra. Presently I'm taking 12 mg prednisolone along with Actemra...and hope to start to taper. I'm waiting for a return call from the rheumy before I inject myself this week because I want to discuss ceasing? I don't know what he will say, but I sure felt better without it.
I want people with GCA to take some heart that from people I've talked with on the forum, this is not your standard journey. I've been to Doctors in Portland, Maine, Boston, Mass, and here in Indiana since my move. The GCA has been referred to as 'raging' and initially was tough to quiet down. I may be married to 8-10 mg per day, and that would be fine with me.
I talk and talk about what I'll settle for...that is a joke. We shall see what will be. But, please, you folks out there with GCA, this isn't typical, I don't believe. If I'm wrong....some of you with a ton more experience, please say so.
I am on 16 prednisone today plus Actemra every second week. Your experience has been very interesting for me to read. GCA diagnosed in October 2018. Started at 60. Tapered to 9 in July 2020. Lost sight in right eye. Back up to 50. In September Rheumatologist recommended starting Actemra to reduce prednisone faster. October 5 started and started to go down 2 per week. ( as recommended by rheumy) By November, feeling awful. Weak wobbly generally awful. Rheumatologist refused to talk to me. Consulted my GP and slowed my reduction. All blood tests show nothing out of whack, good SED and CRP.
Tried to get a referral to another rheumatologist. Unsuccessful. I have also had site reactions to Actemra the last two shots. One was a bruise. Last week was a long red mark 2 inches by 6 inches around the injection site. Still there a week later. I have the pen that you just hold on the skin and push a button. Feel nothing. From these posts I see the connection between Actemra and my general feeling unwell. I have a planned telephone call w rheumy on January 26 for 10 minutes. Will see what she says.
Hello Alverta! One of the good souls on the forum recommended that instead of pinching my skin when I inject Actemra, I stretch it with my fingers...I did, and I had no bleeding from the site or under the skin. When I see the rheumy Tuesday (I think most of you will be having your evening meal at that time), I'm going to bring the slow taper that Dorset Lady outlined. She also lost the vision in one eye.
When the rheumy finally called me back regarding my desire to stop Actemra, forty-eight hours had passed. By then, I had a terrible headache (the news contributed, I'm sure), and he urged me to continue injecting so we could start the taper....and I agreed. When I see him, I think I will ask him about every two weeks~?? I share the same anxiety that you feel regarding my vision...no light matter.
I do like this fellow much better than the one I had in Maine. It also helps that I know he talks with my internist regularly too. My internist is his personal physician, as well.
Since being on the forum, I've learned to speak up and be a better advocate for myself.
There are many times it has been proved that 'symptoms count' even if your bloodwork seems inflammation free.
Nobody is alone here 👩🏿🤝👩🏽👩🏽🤝👩🏻👨🏽🤝👨🏼👨🏿🤝👨🏻👨🏾🤝👨🏽👨🏾🤝👨🏻 for sure. Take care, and stay in touch!💖
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