PMRGCAuk
7,386 members12,120 posts

Been awhile since posting

I have been reading post every day but haven't posted in a while..

Well a while back I felt so good and figured maybe I was in remission from PMR only to find out my GCA is still here. So, I went to fast from 20 down to 10 crashed n burned and now back at 20 which seems to be the number to stop the jaw and head ache.

My doctor is very concerned and is now going to talk to a rheumatologist for advice. This worries me as they are more inclined to a strict get off prednisone regime.

My side effect of Cushings is back n my face is rounding out a tad. At least I am not wrinkled.... small blessing......

so I have been on 20 for a few weeks n now will alternate to 18mgs.

I am still feeling more better and have more energy and PMR pain seems to have subsided. I wonder if it can be done and I am left with GCA.

Hope you are all keeping well.

Linda

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You can't get off pred if you still need it for symptom control - doesn't matter how strict they want to be. But you are in the USA - maybe they will suggest Actemra?

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Yeah I know.... I had such an awful time with Methotrexate which makes me worried about anything new. On 20 mgs I feel fine.

She showed me a graph on my medical chart of how each time I go down so does my weight so she said it is all prednisone to blame.... so those chocolate brownies had nothing to do with it.

Here is my new question.... I showed pre diabetic on labs and she said not to worry about that as it will resolve once I am off prednisone... Is that true or will I get adult onset diabetes?

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I wouldn't *worry* about the pre-diabetes, but i would definitely watch the diet and, if you haven't already, cut back refined carbs and extra sugar. Exercise will help too.

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Thanks, yes I am upping my exercise which has been in a pool. Unfortunately it closes in a couple of weeks. My pools pals n I are talking about doing laps around our complex. I will have to build up to too many laps at least I know I can do one lololo.... 5 laps makes a mile.

As too diet I need to work harder on that.

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Don't really believe the lady when she says your weight gain is "only" due to pred. In one sense it is - but it CAN be helped by really drastically cutting the carbs. No brownies I'm afraid :-(

Diet is far more crucial than exercise in weight loss.

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The voice of reason. I find It extremely difficult to cut out carbs completely. I hate to cook and am on the quest of finding a simple diet plan that shares : eat this for breakfast this for lunch etc.

every time I look for a simple eating plan I find great sounding recipes but not what I need.

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I honestly don't think it exists. Not everything falls into our laps ;-)

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I want it all easy peesey.....

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Hi Lin, I have just had a tuna and bean salad which consists of opening cans of tuna, borlotti beans, kidney beans and another sort of bean I have forgotten. I add chopped up cucumber and voila a really tasty, almost instant, meal.

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That actually sounds yummy. I have to get away from sandwich mentality. Thanks for sharing.

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Have You talked to Dr. about Actemra infusions? My Husband passed away & I had a bad flar up, started My Actemra & next month I had normal labs. I never take preds. When I first got sick & was diagnosed 4 years ago, Dr. started Me out on 20 mg prednisone, then within 2 weeks We got approval for Actemra, so We started decreasing preds, after 3 weeks I've never taken another one... After 5 months of the Infusions we stopped that. I continued the monthly lab work, had no problems until My Husband passed away in Jan of 2017, within 2 months the labs were elevated so back on Actemra for 3 months & now I'm off everything. I will do the once a month labs for the rest of My life, if the GCA rears its ugly head again it will be back for infusions for 2 or 3 months.. Could be worth talking to Your Dr.. My real name is Betty Snell & I'm from Atascadero, Ca. I believe this is a rare illness in the USA, I'm the only one in Our area & the only one My Rheumatologist or Eye Dr. have treated.. nice talking to You. Best of luck..

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Thanks for the info.... I loooked up the drug n it sounds awful with heart attacks etc. it definitely would be trial to see if it helps. Thanks again for positive post.

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Looks like you are in the USA. You should ask your doctor about Actemra, see if it is right for you.

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Yep I am a California girl born n raised here. Loved Oregon when I lived there for 10 years so green and lakes and rivers everywhere. California is going to price most people out of the state things are simply getting too high for most of us.

As too the new med they all make me nervous as I seem to have bad reactions to most meds......

alas though I now understand what the old people used to tell me that they can't move cuz their doctor is here. I now get that.....

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Hi - yes was wondering what had happened to you. Looks like, as others have said, Actamera is a possibility. Let us know how you get on.

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Actemra!

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It's good to hear from you again Linda it sounds like you are still happy in your new home. I have followed your posts for a long time and wondered how you were as we hadn't heard from you. I'm sorry you are having problems but I'll keep my fingers crossed for you. I've just tried (and failed) to reduce from 6mg to 5mg for the second time and am just recovering from the resultant flare. I've asked for the adrenal test but the doctors just blank me. I'm having bloods done next week for the first time since February and then only because I more or less begged! So I'll see what they show.

I envy you your swimming pool even if it is closing soon. It must be lovely.

Take care

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Yes I love my new community. I have made some really nice heart friends.... what I mean by that is when we see each other our hearts smile it is a great feeling. For the first time in my life I am actually enjoying living alone. I goof off with my friends then go home to peace and not having to figure out how to make an unhappy person happy... nice not to have to deal with it.

I will have to ask my doctor about the med suggested. I just wished my right temporal headache would go away. Went to eye physician and he said my optic nerve is fine. So I have no way of knowing if it is a GCA headache or not. I have had chronic headaches most of my life and I can deal with them but not the anxiety of losing my sight.

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Where in California? I'm in Pacific Grove (Monterey Peninsula) mid coast.

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Santa Rosa 1 hr north of San Francisco. I love your area.

A bit north of you was where I lived in Watsonville as a kid. My uncle owned all the apple orchards. Ahhh the memories he would tell us kids to go find the one and only freestone peach tree and see the f they are ripe. BUT don't eat any. Just come tell me if they are ripe.

Well it took us at least 30 minutes to find it. Picture this 7 kids aged 11 on down to 4. I had 4 cousins there and we were alll scattered in a hap hazard row and there she was. The prettiest tree you would ever want to see. This was a white freestone peach tree and it was ours.

Once we realized the tree was ripe we all grabbed peaches and sat right there and ate them.

I honestly don't remember what happened after that I only remember those peaches were the best I ever had.

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The adrenal test won't make any difference to you flaring at 6/5 mg. If you need 6mg to manage your symptoms, you need 6mg to manage your symptoms. End of...

If as you do manage to reduce further you start to experience increasing fatigue, then you can get insistent about a synacthen test. Pick your battles!

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Thank you PMRpro I appreciate your help.

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Hi Linda, nice to see you post again. If you need the 20mg to keep pains at bay then you need it! They can't just 'get you off' the pred if your symptoms return!! Glad you're feeling generally better though. :-) I've managed to get myself down to 8.5mg...feeling quite pleased with myself!! haha.

Linda

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Hi Linda,

I do feel pretty good my energy level is still low but the exhaustion is gone. Got my labs back. My ESR is back down to 19 and my sed rate is slightly elevated. Of course my labs have always been good which makes it harder for my doctor to believe I need the prednisone.

My doc was going to get some advice from a rheumatologist and I have not heard from her since my appt a week ago.

So glad you are down to the level you are.

Thanks for sharing

Linda

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