First, after seeing the rheumy today I feel less anxious, aka afraid, and secure in the path he recommended. It was the path of the PMRGCAuk~! He listened to all my symptoms over the last few weeks..." since bloodwork results for inflammation won't show up since I take Actemra" ...and he must rely on symptoms. He felt some symptoms might be from too fast a reduction which gave me 'flu-like' aching and discomfort but classified everything I felt from my jaw, neck, and head were indeed a GCA flare. He told me to go to 13mg per day and if I was not comfortable in two days to go to 14. He wants to see me in two weeks. I am to resume dipping just 1 mg per month.
Secondly, it restored my confidence in him which means a great deal. I was really swollen in my legs and feet and cannot take diuretics....as he said, and I agree, it is just more medicine and more side effects. So...'let us go slowly and see how we do'.
I had worried that he might want to start some sort of infusion to replace the lost steroids....actually, I was so bummed out I told myself lots of stories...or fears.
It does not help that my husband thinks fewer pills are better and the thing to do. He doesn't understand this business. So once again, I'm thankful to all of you and my DIL....because sometimes I might feel alone but in my heart I know I am not.
I know I must be more honest with myself...I always try to put a smiling face on and sometimes I think it carries me through a rough patch and then BOOM. So I'm going to try to shape up.
Speaking of shaping up....I found today I had gained 5 more pounds after doing the app Lose It! and losing six. The Doctor attributed that to the steroids too. I'm still sticking to healthy eating.
Giant hugs for every single one of you....xo, Marilyn 💖
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Grammy80
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Why is this so hard to grasp? Part of me would like him to understand...I think he is teachable. After going into the visit I think he got a hint but I know what is right, in great part because of the forum...all of you! End of subject!! 💖
My hubby thinks similarly to yours and only sees an urgency to reduce the amount of pills I take...particularly the steroids. He seems to think....as many people do....that medication equates with ill health! He can't quite see that it actually works the other way round..... medication aids wellbeing and functionality in this instance. Of course there can be unpleasant side effects but it's all about weighing up the pros and cons. I'm really pleased you feel more comfortable and satisfied with your most recent rheumy appointment. It will definitely make you feel more positive and secure in the actions you have to take moving forward.
Thanks for the support~! It is such a circus balancing act. It was rather distressing when I got on the scale there too....in spite of concentrating on eating healthy and not snacking except fruits or veggies my weight had risen to ALMOST qualifying as a Sumo wrestler!!
A few weeks ago I was down 6 pounds and now I am higher than when I started using the app Lose It! (You don't have to pay for it though they try to make you think you do)
I'll still eat healthily and focus first on mobility and no pain in my head.....the rest will just have to follow when it jolly well feels like it. I feel so tough today!!!!
Hello Grammy, you mentioned your legs and feet are swollen. Well, a pint of water weighs 16oz in US, 20oz in UK! Stop weighing yourself and concentrate on eating well. You could have lost fat and be deceived by the fluid gain when you step on the scales.
Thanks, Rugger~~~ I flipped the scale over and will stick to healthy eating...I'm a veggie and fruit lover. The only thing I really miss is chocolate chip cookies...maybe 2 once a week? I received an Incredible Edible Bouquet yesterday....pineapple, strawberries and melons cut like flowers. Easy on the eye and tasty. 💖
You have such great ideas!!! I thought a viewing of You Are Not Alone would be a great educator. Don't you think? This is the first time he expressed any interest in GCA...or going into the Dr. visit. Usually I phone my son and DIL in Canada during a visit and the Doctors are great about 'having that extra pair of ears'. I just prop up the phone and they listen and then they can ask questions. I was setting up the call when he said...I'll go in with you. Whatever the psychology behind it, some sunlight crept into his mind and now he wants to know more. Good enough, it is him I live with. I'm sure he'll be an expert in no time. Men and ego....twins forever!!!
Where would I be without you? Hope you can sit in the garden. xo 💖
Sounds promising - and he is aware of the 50% who don't necessarily get the full benefit with Actemra and that blood tests mean nothing.
What is it about men? Mine was a healthcare professional at consultant level - and it has taken years to get him to realise he doesn't stop taking the pills because he feels better, he feels better because he is taking the pills!
I know~! For the first time, my husband came in with me, and after hearing the Doctor talk, finally understood (a bit) about steroid dosage. Especially when the doctor talked about 'not having a definite game plan' and listening to the body and symptoms, that was an eye-opener for him. This evening we are watching the DVD about GCA and PMR!
I'd been so anxious before seeing him yesterday that it was a weight off my heart when he said that the blood test results indicate nothing!! He wanted to know what I felt and listened. He then explained more to me about the slow process of the negative effects on our body as a long-term steroid user. We will do the best we can.
I still had a rocking headache this morning....so I went to the 14mg, and we'll see how it goes.
I saw a saying on the computer today that made me think of you....and Italian said, "You can have the rest of the world as long as I can keep Italy." Agree?
I promise you both; I will. The showing got delayed tonight because Sunday is Mother's Day here in the states; my oldest son...60! ...and his wife stopped by.Full review coming up.....warts and all!! xo
Hi Grammy, glad to hear things are improving, however, being of the male variety and given the comments above I feel duty bound to say that those thoughts are not applicable to all men, some of us are actually very understanding and supporting of the ailments of our OH's and even our own.
I know that is true...I think the more my OH learns he will understand. For him...looking at anything unpleasant is a challenge. I'm glad you made that point...we cannot generalize💖
Well done Marilyn- sounds like you’re on the right track now just have to re educate husband. I must say after 6 years I think my husband has got it. In the words of My Fair Lady- “ He’s got it, by Jove he’s got it!!” I think it’s because too I read him a lot of answers from this website. He’s often very informed but sometimes bored!! 😂🤣💐
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D-Day tomorrow- wish me luck!
I feel like a yoyo, Do I have GCA or not?
PMR GONE....!!
