Hello, diagnosed late July 2022. I'm on TCZ (Actemra) and Prednisone. I've been tapering from 55mg August 2022 to 9mg currently. I was trying to go down 1mg per month, but when tapering just a half mg from 9 to 8.5mg, I got horrible unbearable headaches. Is it possible that I have to stay at 9mg longterm with GCA and PMR? Any suggestions?
Anyone else having trouble thinking of words while talking? It's gotten pretty bad. I start to talk, then have to stop and try to find the next right word. Sometimes I have to give up or try to describe around the word I'm looking for. For example, having to say "smashed garbanzo beans" because I can't think of "hummus". Very frustrating.
Also, has anyone noticed horrible symptoms the day before TCZ shot? It's as if it's running out in my body and I need it again. Last night my head hurt SO badly--no relief after 2 tylenol and 1 motrin, so I took my Actemra shot (was supposed to take it this morning) and it helped the headache. Also, the day before the shot is due, my hips, shoulders, neck are on fire. This is how I know the shot is working but it seems I need it every 6 days, not every 7.
Thank you, you lovely supportive people
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potterylady
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I don’t take Actemra so hesitate to reply, but I do have GCA and I don’t feel you should put up with this awful headache. If you have any visual symptoms then I suggest you go to the emergency department asap.
In the meantime, I suggest you treat this as a flare. You can go up 5mg over the Easter weekend (and up to ten days in total) without affecting your taper. Once you feel stable, you can drop down by say 2.5mg after 5days, and then another 1.5mg. All being well, restart your taper from 10mg or so.
And no, flaring like this does not mean that you will be forever on 9mg. Many if not most people on here will have flared at some point and dealt with it by a temporary increase in dosage.
Hope this helps. Take care of yourself and seek emergency help if you get any worse 🤗xx
PS About the word finding difficulties- no, I haven’t experienced this. It does sound like stress but again, if it does t improve, seek a medical opinion x
Yes, I wonder if it was a flare? Good point. Either way, I took 9mg today out of fear of that horrible head pain. Good information about going up by 5mg without affecting my taper. Thank you so much for your response.
I have had the problem finding the right words for ages. It caused problems when not so long ago I was being interviewed on live radio and television. It was OK when recorded, as it could be edited. I would have to replace the one really good word I could not find in my brain with a garbled sentence. I have found that I use simple words now, no long words for me!! I suppose I was never a great orator anyway.
I had my pension with Equitable Life and when it went “belly up” due to the directors incompetence, in my opinion, I set up an action group. There were about seven of us got together. In all there were over a million member who had lost out. We fought for over ten years, went to court, had a judicial review, went to the ombudsman, had numerous reports produced and in the end we got the government to pay out about £1.4 billion, which was about a quarter of our losses. During that time I did an awful lot of interviews. I never listened or watched any of them unless by mistake when I did not realise.
Mighty impessive, piglette. Talk about hiding your light under a bushel (at least I think that's the right expression - I have trouble finding words too: noticed particularly in last few months)...🤔
I did meet some really interesting people, I even presented to the EU in Brussels. I was absolutely petrified and wondered if a could pretend to have a heart attack!
Wow, how interesting. What I found frightening was all the modules round the top with people translating the rubbish I was saying into different languages and people listening to me over earphones.
I am still catching up on all the sleep I lost. My brother, sister and a lot of friends lost out too. I used to drag my friends onto interviews on TV and radio. How to not make friends!
Yes. Finding "the" word is sometimes difficult, so I also work around it and say "it's downloading". Doesn't happen all the time, but randomly. This has been for a long time. Sometimes I think it's fatigue related, usually due to a Prednisone taper (like this morning for example).
Hello there, have you told anyone medical about this. You could be at two dose thresholds. 1) The dose is now getting to the level where the adrenal glands need to start working to make up for the lack of Pred if it has reached the normal physiological level for your daily life. For some people it seems to be a bit less and for some closer to 10mg. If your adrenal glands haven’t yet cottoned on, and you are in deficit, the body will show it in odd symptoms of the body in upset to a greater or lesser degree and can affect all functions. Do read the section on adrenal glands in Mrs Nail’s FAQ’s to the right of the page; it is essential reading for under 10mg er’s. Some doctors seem to forget this bit being so focussed on getting Pred down.
2) However, it sounds like you may also be under the threshold of Pred that is controlling the GCA. Actemra deals with just one inflammatory mediator and there are several. If you happen to have others at play then the Pred is what deals with them. Whatever is happening it sounds like you are sailing close to the wind. Without the Actemra your Pred dose would almost certainly be inadequate. A review might be in order.
Your headache and word retrieval may indicate a more global brain issue. Yes, we all get problems with words but it’s a question of degree and yours has recently got worse and you have headaches. When my GCA was uncontrolled my vocabulary drop-outs were getting worse and worse to the point that I was losing my train of thought in conversations. I don’t want to be alarmist but I’d want my doctor to rule out small strokes or other issues occurring. Perhaps they should see if increasing Pred helps and of it does, have a rethink. Poor adrenal function can do this but normally at 8.5mg it isn’t too low to be having a major effect, but we are all different.
Oh yes, we call it ‘trouble with my worms’ due to the fact I couldn’t get the word ‘word’ right when talking one day! Also known as a ‘bad worms day’!!
Hi Potterylady, it sounds as though the disease activity may still be active. How long have you been on Actemra? When I first started it, I found I couldn’t taper Pred until I’d been on the Actemra for about 3 months. Since you’re having symptoms, would stay at the Pred dose with weekly Actemra injections that keeps your symptoms under control. Hang there for 3-4 weeks. Then if all okay, start your 0.5 mg taper again. It took me just over a year to taper from 20mg Pred to 0mg whilst on weekly Actemra. GCA can last upwards of 5 years, so no hurry. Pred and Actemra don’t “cure” it. They only control the symptoms.
Some folks on Actemra need to keep low dose Pred with it to get symptoms under control. Please don’t be in a hurry to taper if you have symptoms. Slow going helps find the lowest dose without tipping back into symptoms.
Great info. I've been on Actemra for 6 months. I went up to 15mg yesterday and today because I actually felt like I couldn't function at all. Brain and body felt pretty dead. I'm going to reach out to my doctor, but for now I'm going to treat it as a flare and stay at 15 for a while, then start tapering again. Thank you so much for your response
Half of patients are unable to get entirely off pred even on Actemra - it is because there are at least 3 different underlying causes of the inflammation and only one of them is controlled by Actemra, if the other two are involved you need pred to manage them. A dose of 8-10mg seemed quite common.
I do feel different the day before the TCZ is due - but not as bad as you describe, However I have it for "just" PMR and I am stuck at 8mg.
Oh......wow. Interesting. Good to know you have the same situation the day before the shot. Yes, if it were "just" PMR it would be less scary for me. The risk of strokes and blindness makes takes it to a whole different level. Good to hear that 8-10mg is normal!! Maybe that is where I will land long term. Thank you so much.
As a GCAer...I never tried to figure out what the heck was going on. Maybe it seems like a cop-out to some, but it made it easier for me to deal with if I responded to the symptoms and went for the ride. I, too, am on TCZ and pred...it took me 3.5 years to get from 80 to 3mg per day, and I had Actemra the whole ride. Once I got to 15, but symptoms sent me back to 40mg.
If the problematic headaches continue, please have them checked out. I never had any unpleasant experiences with TCZ, but I believe it helped. I feel that way because, having lost sight in one eye, with lots of doctoring, I've retained the other eye.
I kind of like blaming my so-called 🤷🤷memory on meds instead of age!!💞
Grammy80 thank you so much for your response. Everything you said helps me to deal with this. Interesting that once you got to 15 you had to go back up to 40. I went back up yesterday and today from 9 to 15 now. I'll stay there for a while then try to come down slow again I guess. I think the memory problems are from inflammation in or near our brains! Plus the meds too. Again, thank you for your kind, soothing words.
It is worth it for us to take our time and achieve the best result possible~! Plus, even though it has been going well now, I know from listening to other folks experiences that I may hit a bump....so it is easier for me to be 'flexible'. 💞
I have PMR, not GCA, but got stuck at 9mg for a year and a half. During that time I would attempt to drop .5mg over a slow 6 week taper, only to have my initial symptoms re-emerge. Very frustrating!
I started Methotrexate Jan/22 and managed to drop down to 6.5mg pred while on 25mg of MTX. Unfortunately multiple back to back illnesses from Oct/22-Feb/23, along with the stress and sorrow over the death of my step dad who lived with us, and later my mom’s death out of the country during that same time period, delayed my tapering as MTX had to be stopped multiple times while on antibiotics. My CRP was raised multiple times due to diverticulitis infections and PMR stiffness and some pain returned.
My treatment plan moving forward was discussed with my rheumy and GP as was what might be hindering my progress (stress, being on too high MTX dose, more bugs going around this past winter and people adjusting to the fallout of gathering, etc) I managed to settle at 7.5mg by the end of Feb. and despite lowering my MTX dose to 15mg, I’ve been able to taper down to 7mg.
All this to say you may not get stuck at 9mg at all, nor am I pushing MTX (it does seems to only work well for a minority of folks and Actemra seems to be working for you). Others have made some great recommendations (pred burst for 10 days, etc), and I would add a visit with your medical team especially with two medications at play (pred and Actemra). Describe how you are feeling the day prior to your Actemra…your body holds the clues.
I also found that when I flared and those painful symptoms returned I almost panicked and had a low tolerance for putting up with the pain and stiffness once more. Perhaps because I suffered 6 months before diagnosis. I came to learn that my body was essentially talking to me and I had to pay attention and listen. I was able to utilize “pred bursts” for most of the flares I’ve experienced and that helped with the anxiety surrounding the flares. We cannot control the disease activity but we can respond in ways that are helpful.
Remember you are not alone. Plenty of fine, informed, compassionate folks on here. Hope you figure out the best way forward and that the dreaded headaches do not returns
PMR Canada, thank you for your empathetic and wise words. It really helps to hear what others did you deal with this. Yes, I do think illnesses and stress affect this disease so much. Good to know you're at 7mg with PMR. I should take it slower with both PMR and GCA and not expect to get lower as quickly as I've tried to. Thank you so much for your kind support.
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