I have tapered down to a 5mg/4mg alternating dose. Have had some issues with shoulder pain, scotomas and pressure back in temples. Went back up to 5mg which seemed to help. (How does 1mg make such a difference?) Last week I came down with my grandson’s croup the rheumatologist nurse said to not do my weekly injection of Actemra. Six days later I still have croup, primary care Dr. did chest X-ray which was fine. Just a virus. Yesterday I started having a pain in the knuckle of my little finger, it has gotten worse, Tylenol does nothing. I don’t have arthritis unless it just happened overnight. I am wondering if this is from missing an Actemra injection. I am like ready to double my prednisone to 10mg in hopes of it helping with constant knuckle pain and coughing. I am so tired but can’t sleep. I am so frustrated with GCA and doctors. It’s always something and it never seems to go away
My friends don’t understand why I don’t have the energy to kayak and bike with them. I’ve tried. To them I look just fine, other than the 26 pounds I have put on. For them covid is over, so is mask wearing. Thank you for letting me have a little pity party. I think my depression and anxiety are at a new level.
Wishing only the best for everyone.
Peggy
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pmac22
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It COULD be missing the Actemra injection - although in the clinical trials they did bi-weekly jabs with very little difference from weekly. But only half of patients were able to get off pred altogether - IL-6 isn't the only mechanism for GCA inflammation.
If you can't have a pity party here - where can you? It will get better - honest. Hugs
I'm really sorry to hear you're feeling so fed up. I can understand why.... you're dealing with a lot.
I can't comment further on the information you've already been given regarding your meds and symptoms but I can certainly relate to the comments in your final paragraph...as I know many others on here will too.
As Dad2Cue said, it sounds like some of your fatigue and malaise may stem from adrenal issues. I'm experiencing similar and have never felt so lacking in energy, or unable to engage in activities requiring any kind of moderate physicality.
I definitely feel quite rough at times and yet people insist on repeatedly telling me how well I look! Pro has the perfect retort for that...and I use it whenever appropriate.. she tells people, "Thankyou but it's not my face that's sick!" Love it!
I've learnt to be very candid about what I can and can't do, and won't compromise that in order to indulge anothers desire to have me 'join in'. Those who matter, don't care that I can't do as much, and those who do care, don't matter!!
As for covid, before meeting friends, family etc, I still ask my them if they have a cold, sore throat, cough etc....and if affirmative I ask them to stay away or I postpone meeting up with them.
Unfortunately, I can't change how you're feeling but I can tell you it won't last and things will improve. Just hang on in there Peggy.
Although I can’t speak to missing an Actemra dose and its impact on you, I do relate to your frustration. Some folks just don’t “get it”!
My son the other day questioned my busy, active summer while I shared about the challenges of tapering pred at this level. My daughter who is in nursing school understands.
We have an “invisible” illness that impacts our mobility and leaves us with uncertainty. I do hope that there is some improvement in your physical and mental symptoms soon. Perhaps future pred dose drops of .5mg would be helpful. Take care.
Hi I can relate to all of that. I think like Kendrew said you have to be quite candid and if folk don’t like that - too bad. We are the only ones that can look after our own health. I remember early on in my PMR journey I went to a meeting which was packed. The only seat available was this one next to a girl. When I took the seat I realised that she had a bad cold. I didn’t want to make a fuss and get up and go. Needless to say I caught the cold!! And the problems it caused!!! So now I wouldn’t hesitate to leave! You know your own body and what you can and can’t do. Unfortunately many won’t understand and that’s ok. Xx💐
Sorry you are feeling down, it will get better ( or do we just get used to it 🤷♀️).
Things will improve, you learn so much from this site, everyone is here to help and give support.
I think anyone who hasn’t got GCA/pmr don’t understand what we are going through,I too get very tired I’m not able to do as much as I used to, and as you say, people tell you how well you look, my answer is, “you want to try being in my body”.
I get random super painful middle fingers (not from exercising the middle finger either). Mine must be arthritis and it is very random. Hurts alot in the middle of the night (why)? A hairdresser told me to avoid shiny skinned veg (tomatoes, etc). Always something.
Lots of folks report great difficulty with alternating doses of Pred, especially at lower doses even if you’re on Actemra. May want to rethink the taper and use a dead slow method. I remember feeling awful at around 3-4 mg while on Actemra. I took a full year to taper off from there.
thanks, I am beginning to rethink the alternating dose. This was recommended by my endocrinologist. It’s really frustrating when 3 of your specialists, neuro opthamologist, rheumatologist and endocrinologist have different opinions about tapering and GCA in general.
Agreed, very frustrating. There have been several folks on here who had an alternating dose recommendation and I don’t think it’s worked well for a single one, especially at those low doses. If you look in the FAQ you’ll find several kinder, gentler tapering plans!
Only just seen this, hope you are feeling a bit better now. My actemra is 3 weekly with no probs. Doubt one missed jab would be it. The experts on here have tried to reassure you that it won't last, I always go with their supportive words. 😘
You have earned the right to have a pity party! Let it out. I don't know if it helps, but I'm in the same boat you are...5.5 now, sore neck, thumb and a few other issues...I have a friend who has been on 1 mg for GCA for 22 years and it does make a difference. That powerful little milligram. Give yourself a break--you have a virus and probably wouldn't feel like a million dollars anyway~! You've gotten some great replies...and for sure~~~you are not alone...we get it.💞
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