I was at doctor my new GP for a follow up on my femur pain knee and ankle. Well I had something new my ear is hurting and it happens on occasion when I swallow.
She said my ear was fine. BUT it still hurts. She was so glad to hear I have another appointment next week with my shrink.
My eye physician who is handling my tapering said to stay at ten. Both of my shoulder and legs have gotten worse and I have gone up to 12.5 mgs. It is not seeming to make a difference but then it has only been two days andI really don’t want to go any higher.
My head sweating (which was so awful I would not go out). Well it has stopped last Wednesday I was at Bible study with a fire roaring in the stove and I was not overheated. I actually am starting to feel cold appropriately and wear a coat. Typically it is culottes and cotton shirt.... I want normal or at least get closer.
So, I truly don’t know what is going on.. I hurt like I did 4 yrs ago. And yes I am acknowledging I am in yet another flair. No matter how I ignored it it just got worse.🙀
I hope that you get some answers soon , and if the symptoms continue get back to your GP and ask if you will need any additional treatment or pain relief to cope with non PMR pain from your other issues . You may need something else as well as your Pred increase to help.
A regular trip to your Psychologist and talking regularly will also help you reduce your Negative stress and Tension which will also help in reducing all types of Body Pain and symptoms , along with our usual advice about getting enough rest and Pacing your Days.
Well I can say I have paced myself really well maybe too much so. If I hurt I don’t do it.
I never thought about relieving stress with Psychologist thank you for that.
I am just so frustrated because I get to 10mgs and then pow back up again. It has been since 12/2015.... I am in my fifth year.
But on the bright side my GCA seems to have gone into remission. The niggling headache is gone. And my fear of going blind has also.
I have to call my eye physician on Monday and tell him I went up to 12.5
I remember my very first dose was 20 mgs and I went from crippled to normal.
I guess part of me wants to know if all the pain is Pmr or something else at this point. Except my shoulders are screaming in pain which has always ended up Pmr...
That is basically what Psychological Services are for to help you see your Stress and help you find ways to improve it. Their confidential talking therapy is geared to letting you get it all out.
Your groups and friends and support groups help you with the Self Care between appointments.
That really is your body telling you where to stop - just above 10mg to avoid having to yoyo back up again. The yoyoing makes it increasingly difficult to manage with the same dose you started on - I haven't yoyo'd but I do need more now than I used to. I've barely been below 10mg in 10 years of pred, 15 years of PMR. It isn't fair - but that is the way it sometimes is. Maybe the psychological help would allow you to accept that - because it does make living with PMR and pred a different experience.
I do not know what to do at this point. I have been on 12.5 since Saturday and feel just as awful as 10 mgs. I was trying to bite the bullet and see if somehow things would settle down on 10 mgs but apparently not. Now I am hoping 12.5 will hold me. I just cannot keep yo-yo ing.
I also have been blaming my pain on my fall but it would be healed in 9 weeks.....
I need to put these numbers somewhere to see where I am at. It wasn’t that long ago he had me go to 40 mgs. Then I dropped 5mgs per week until I got to 15 then if memory serves me I stayed there then went to 12.5..... which is where I should have stopped for awhile.
Like I said I don’t know what to do at this point.🤪
It is really weird... my sister used to come in and be freezing and I would be in t shirt n shorts. She would feel my hands and they were toasty war and hers were ice.
Right now my house temperature is about 67’ or so. My thermometer goes from 15.5 to 18.5 Celsius..
today I am feeling the cold... it is nicer than cooking.
I used to tell everyone that I would be one of those spontaneous combustion people where all they find is a pile of ashes and maybe the feet.
I had years of hot misery in menopause. Then a few years of cool before GCA and all this prednisone. Now I sweat during most activity. That’s why I swim and do water aerobics.
I hope this link works. We talked about Peripheral Neuropathy before I think because some of your symptoms seem to fit such as pain in the legs when walking distances and perception of temperature . It is something to raise with your doctor perhaps.
I find that if you manage to sort one thing that ails you everything else seems to follow.
Typically an eye doctor sees eyes, if you see what I mean 👀. Xx
Thanks for the link. I ran thru it and nothing seemed to fit .....
The pain in my legs is in the bone. My GP says I have bursitis in my hip actually not in hip just below it. She said she could give me a cortisone shot but she feels I have had enough steroids.... so we didn’t do it.
She really doesn’t know anything about Polymyalgia.
My eye physician slash surgeon is extremely knowledgeable about GCA and has tapered a few patients. I actually trust him the most at present.
I just left him a call about going up to 12.5..... geez 🙄
as to Doctors I am not sure about what they know...like I said my eye physician has shared how hard it was for one of his patients trying to get to 7.5.... he sounded like he knows about slow tapers.
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I feel like a yoyo, Do I have GCA or not?
New to the group
Advice on what to do next
SUSPECTED GCA ANY ADVISE PLEASE
