I had to stop Actemra for a month because of illness and have had a rough time resuming the injections. The first two injections brought headaches, nausea, flu-like symptoms, fatigue and a runny nose for 2 days ...memories of the symptoms I had experienced when I first started Actemra last November. This week's injection was better - getting used to it again, I imagine. I am dealing with headaches that respond to Tylenol; my eyes are occasionally sore and feel as if a tissue is passing over them. I had an appointment with my optometrist a week ago and he said everything looked good - he could see no signs of inflammation, so I felt somewhat reassured that I was still progressing well on my prednisone and Actemra journey (dare I say "well"? - as well as can be expected, I guess).
However..... I had posted previously about losing 2 toenails and having extremely cold feet - thanks again to all who responded. I followed up with my Cardiologist and Chiropodist - both believe it could be a circulation problem. I am scheduled to have a Doppler ultrasound on my legs at the beginning of October.
My rheumatologist, on the other hand, suggested I was having withdrawal symptoms from prednisone and told me to increase to 10 mg. I have been on 4 mg since May, and wasn't decreasing when I became ill. I reminded him of this so he said to stay on 4, but didn't know why I was having cold feet.
I am now having very sore feet and legs in the evening as well as still dealing with cold feet, although they are not as cold as before. I am wearing shoes in the house (not barefoot as I prefer to in the summer) - today switched to running shoes rather than sandals in the hopes that good foot support might be the problem.
Tylenol helps with with leg and foot pain in the evening, but am baffled at what could be "brewing" now.
BTW - when I was ill and off Actemra, my neutrophil levels went up (had been low); I had read on another post that Rugger and LemonZest11 had low Neutrophil levels as well. My Rheumatologist confirmed this was a direct result of Actemra. I'll be anxiously awaiting to see what this month's bloodwork shows.
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GratefulBailey
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In the process of moving ...going to Mass Eye and Ear...don't know what end is up.....but had to say ....I'm so very sorry you are going through all this. xo💖
I thought you must be, I was about to send you a private message. It must be pretty stressful on many levels. You’ve been missed. Wishing you all good things.🍀🌸🍀
Thank you...every day brings challenges, but also blessings...some days just have to look extra hard for those blessings, but they’re there! Wishing you well as you move...you must be happy to have your son’s help and company. Always look forward to reading your uplifting posts...
What a lot of niggling symptoms. I recognise the runny nose, I actually have a scabby nose that tends to bleed ever since I did a home Covid Test about 3 weeks ago and pushed the cotton bud up too far. It just won’t heal. My fatigue is ridiculous and I get intermittent flu feelings that I associate with the rapid Pred taper (40mgs to 8 mgs in 3 months and 9 weekly injections of Tocilizumab, so far.
I wonder if a Neurologist would be the right specialist for your cold painful legs and feet? I have never heard Pred withdrawal associated with toenail loss before. My feet are flaring with Psoriasis at present.
I wish I was as familiar with Tocilizumab (Ro-Actemra) as I am with Prednisalone. I had really grown to understand it and my reaction to it. Tocilizumab is a whole other country.
Interesting about the nose - I’ve been struggling with a nose infection as well since June - comes and goes with treatment with an antibiotic cream. Maybe Actemra related?
I will go with the Doppler ultrasound to start...my blood pressure was very low during my illness - coming up now. Perhaps that has something to do with it. I wish I had a crystal ball!
I also have sticky eyes in the morning that itch and hurt, like my eyelashes are made of thin barbed wire. I think the not healing is down to Actemra. I must ask for antibiotic cream. Antiseptic cream and salt water only ameliorates for a bit.
Yes, my Rheumatologist wondered about that. I am not sure that there is a definitive test. Mine is confined to my feet ( Psoriasis) and like you, I am not in pain.
I was an hour late for my 9th injection ( I lose count) getting too casual about it I think.
One possible answer might be that the vasculitis is reducing blood flow to the legs/feet in line with the cardio's and chiropodist's thoughts. I wouldn't class that as "withdrawal" from pred though.
Remember that it all depends on the mechanism behind the inflammation, Actemra works for half of patients - the ones whose vasculitis is entirely due to the IL-6 cytokine (inflammatory substances). In GCA there are 2 other mechanisms underlying the inflammation and Actemra doesn't have any effect on them - those patients still require some pred to manage those effects.
so wait until I have the Doppler ultrasound on my legs to see if that shows reduced blood flow or start increasing the pred now? I have a consult with the rhuemie in a week and a half...no leg pain during the day (I'm quite active!)...just at night. We just bought an inclined bed so I have my feet up in the evenings now (being very lazy early in the evening ... dinner, walk, bed to watch TV!)...
If you can stick it I'd wait - it may change the results of the Doppler u/s and then they say there is nothing wrong! You obviously don't have typical claudication if you are walking. When you have the nighttime pain can you improve it my hanging your feet out of the bed or must they be above heart level?
I'm sorry to hear you've been having a difficult time. There seem to be a few of us affected in different ways by Actemra. I had to miss 2 injections because my neutrophils were low. They have gone up to just below the 'normal' level, so I resumed the injection last week and will have another blood test in 2 weeks.
I felt a bit 'off' during the time I missed those 2 doses - not much I could describe, other than heavy legs, which I thought might be circulation, or even the PMR reminding me it's still there in the background?
If we can feel as well as can be expected, that's something!
The 'heaviness' was not the same as the claudication, pre diagnosis of LVV. Nor was it like the symptoms of PMR, when I had to climb the stairs like a toddler, one step at a time. It was more like the feeling after doing a day's digging in the garden, but I hadn't! I could still manage my daily 10 - 15 minute walk, including an incline.
It seems to have resolved with just one TCZ injection - strange!
It was going down I had to do one step at a time - up I crawled on hands and knees or dragged myself up by the handrail! But the concrete legs I get is like having just done a day in the garden or walked miles already - they just feel so heavy to lift up.
I would get some foot and hand pain when on weekly actemra. My rheumie said he thought it osteoarthritis but I was pretty sure it was the Actemra. Tylenol helped. But felt good every other way so kept on. When I went to every other week, the pain went away, imagine that!
I hope you’re able to get it sorted. There are so many layers to the illness and the treatments it’s easy to get it all muddled.
This is so interesting... I was wondering if it was because of missing 4 doses of Actemra but maybe bi-weekly is the answer...you are so right in saying there are so many layers..will sit tight until my consult with the rheumatologist next week so I can gather more data and information. And yes, Tylenol does help.
I have very similar complaints as yourself. Sore infected eyes and cold feet. The sore infected eye thing comes and goes. I have had medication for it a couple of times but what I find is if I shampoo my eyes at the same time I do my hair ( I use baby shampoo) it seems to keep the infection away.
My cold feet are caused by blockages in arteries in each of my calves. I have no pulse in my feet. It took a while to get this diagnosed although you would wonder why. I have had all the scans to confirm it. The one thing that has really helped is taking aspirin daily thinning my blood a little. The other thing I have just done is buy electric ski socks on advice from my doctor.
I am on the Artemra journey also started in Feb currently at 8.5mg pred. A few months back I tried to go to fortnightly Artemra as well as dropping the methotrexate that I was on. It didn't work. For few days I could hardly move at night. I am back to weekly and feeling good making very slow reductions to the pred.
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