Feels like PMS but I'm 73 and been tapering Prednisone but today took 4th shot Actemra . Any other ladies getting thus side effect. Taking shit weekly.
Tomorrow I will be at 20 mgs prednisone for week. Been tapering 5 mgs weekly since the Actemra. Feeling awful uncomfortable today. Cannot function. Just seems like body really craves the Actemra shot when it needs it. It should level off tonight. GCA is so nasty and nobody has a clue what it is. I feel like my family thinks there is nothing really wrong. That makes it worse.. Nobody offers help. husband is my caregiver . Scared that I will die from this. Well, that's today but I have to remember this is a roller coaster ride and tomorrow I could feel much better. 🌷
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Leeleep
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Click on the box with the downward pointing arrow - does it offer the option to edit your post? You can with replies but I rarely post so don't know about that.
It is weird, the “new” version of this website is difficult...I can’t see when/what I am typing and it is difficult to keep track of questions and answers sometimes. Maybe it is me...
New version? Can't say I'd noticed changes here, there have been on the other 2 forums which are an utter pain. I use a computer not a tablet/smartphone though.
I call it FFS. Fat finger syndrome. My friends and I Are amazed at the typos and autocorrect problems generated to sometimes hysterical effect . I am so much worse when I use the mobile too. Take care xx
I suspect that even though the Actemra allows you to reduce without the GCA flaring you are still likely to suffer steroid withdrawal symptoms. Maybe you should ask to go down in smaller steps for that reason. I'm sure someone else has said they had to make the reductions smaller.
Interesting. I have had 6 infusions of Actemra...not the injectable. I started having breast pain just before the 3rd infusion. Got pretty annoying...changed bras, etc. stopped my hormone replacement and within two days the pain was gone. My bra would get tight during the infusion! Now, 7 weeks later, I find I cannot give up the hrt...changing/lowering the dose...we will see.I am now under the impression from my experience that even when taking Actemra you have to monitor the taper...not necessarily “full speed ahead”.
You have no choice, in my opinion, when you have GCA....blindness is not an option. This is a roller coaster, but you have us...your friends on the forum😊💐 Tomorrow will be better!!!
Not taking Actemra, but I certainly had breast pain on my right side, same side as my most affected shoulder. It still comes and goes with a taper from time to time. One particular spot gets quite tender.
I only have PMR....never considered the breast pain could be from the pred taper...assumed it was the Actemra interacting with the hormone replacement that I have been on for years..mmmm
I wouldn't like to specifically say this is what I believe- Just from experience on the last taper this is what I've had. Thought it was just perhaps me but interesting that others have had it. I think we are all so individual and have different side effects or perhaps are quick to blame pred when perhaps it's the PMR or something else that we have to consider and investigate.
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Further update on breast/nipple pain! And tapering!
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