barbararene

@barbararene

Activity by @barbararene

barbararene

Tue, Mar 28 at 6:43am CDT by @barbararene re: Prednisone in Digestive Health · View  

I have found that tapering even 5 mg at a time is too fast and I have too many withdrawal symptoms. I am only going down 1 mg at a time. Today I spoke w a Nurse I work with that said I probably should be decreasing 1/2 mg at a time. I explore all options bc I don't believe my Rheumatoid Dr has enough experience and I think this PMR is such a mystery that you have to find what works for you as an individual. One plan for sure does not fit us all.
I have been taking 3 mg. Doing pretty good on that does. I had a stomach virus this weekend and I took 2 mg instead of my 3mg. It made a big difference. I could hardly bend down and put my clothes on this morning, so I increased my dosage back to 3mg this morning. Hopefully I will feel better later today.
Also, this part is a question for John. When you decreased your dose, was it when you felt good on that particular dose before you decreased? The reason I ask, is like I said, I felt good on the 3mg and thought I would try the 2 mg. Too much, maybe I will go back and do the 3 mg f0pr a month and then go down to 2 1/2 mg the next month, like the Nurse suggested. When I see my physician, she just wants me off of the prednisone. That is her goal.. Well mine too, but I have to be able to move in order to be off. I have been fortunate, I have no side effects that I know of from the prednisone, but I started w 10mg and have never been on a higher dose.
Thanks for all your feedback ya'll!!

barbararene

Tue, Mar 28 at 6:31am CDT by @barbararene re: Prednisone in Digestive Health · View  

To clarify, when you say the every other day approach, were you taking the prednisone every other day?

barbararene

Mon, Mar 20 at 6:04pm CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

I have found a cream online called deep blue rub. It is a little expensive but that's what I'm using

barbararene

Mon, Mar 20 at 6:01pm CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

I haven't thought of the the cream. Probably can't access that Bc I'm n Texas. Worth looking into. I'm a believer in medical marijuana.

barbararene

Mon, Mar 20 at 5:59pm CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

I sure hope tapering works.ill b curious to see how you do once you get to 5. Go slow!!

barbararene

Mon, Mar 20 at 10:42am CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

I am now on 4 mg of prednisone. I am going to try this for a month, then try to go down to 3mg. I have not had any success in the past getting past 3 mg. (seems insane doesn't it). I think sometimes you have to figure out what works for you. I don't think my physician really knows what to do that is effective, so I am doing a little experimenting on my own. I was having a lot of pain in my feet, now it seems to be mostly in my upper arms (biceps). That is what is happening this wee, who knows about next week. I hope more studies are done to identify and cure this illness.
Keep moving people!

barbararene

Thu, Mar 16 at 9:36am CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

I understand this tapering off. I seem to manage pretty well on 5b mg, but even when I go down to 4 1/2 mg, I can tell the difference. I know I need to get off of the prednisone, but I also have to be able to get up everyday and function. Very frustrating. Some days, I am almost free of pain and other days more pain. I use the scale of 1 to 10 for pain. Today I am at a 5 which is great. This last week-end it was about a 7.

barbararene

Mon, Feb 27 at 8:43am CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

Getting off of the prednisone is difficult. I agree w John, that you have to do what works for you and be your own advocate. I went back to my rheumatologist and said I have to go back up on the prednisone bc I can hardly move. She wants me off of it, but it evidently is not the right time. I talked w an older physician that I work with and he said not to worry about the side effects when you are at a lower dose of 5 mg, that there should be few side effects at that dose. I really should go back up from 5 to 7mg, but I like you just want off of this stuff. I am surprised that I have less pain in my shoulders and arms and hips, (I say less pain, not no pain).
Most of my pain has now moved to my feet. Especially the sides of my feet, makes it difficult to walk, but I go to work for 1/2 a day every day. I say, we all have to keep moving, and I agree w John that we have to find the exercise we can to help w the stiffness.
Ugh. This is terrible stuff! Prayers, Exercise, and being positive. We got to do it!!!!

barbararene

Fri, Feb 24 at 9:53am CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

I am taking the 4 mg of predisone and yes I am having pain in my arms and shoulders and especially my feet now. This is the strangest illness ever!!! I'm like you as far as I have always been anti medication and wanted to do it all natural. Unfortunately the predisone is the only thing that works. I am going to see a physical therapist on Tuesday who I am told specializes in PMR. I will let you know what I think about it. I can't imagine he would have anything to offer me, but will see. Getting in the Hot Tub gives me some relief, but I can't imagine all that heat would be good for inflammation. Your thoughts? And remission seems like will it ever happen.

barbararene

Fri, Feb 24 at 9:29am CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

It seems like almost all of my intense pain has moved to my feet. It is especially on the sides of my feet and some on the bottoms of my feet. Still have pain in shoulders and arms, but it's like it has moved to my feet more. I am on 4 mg of predisone. I sure hate to increase the dose but don't know about this. Any thoughts?

barbararene

Tue, Feb 21 at 8:41pm CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

We have to stay in touch and share what each of us finds that helps.
My goal is to keep moving, even when it's difficult!

barbararene

Tue, Feb 21 at 8:38pm CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

Glad to hear back from you. I'm encouraged when I hear that people actually go into remission. Hoping that's our case. I'm on 4mg predisone now. Still have stiffness and pain but manageable. I hear all kinds of advise, from diet to exercise to acupuncture. I'm a pretty healthy eater and I make myself walk 30 minutes a day.
I'm in Texas and the weather is usually great for walking.
Whet a mystery this illness is.! Keep in touch.
Barbara Rene

barbararene

Mon, Feb 20 at 9:12pm CDT by @barbararene re: PMR in Bones, Joints & Muscles · View  

I don't know if this site is still active,but wanted to know how you are doing. I also have pmr.

barbararene

Fri, Feb 17 at 6:15am CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

Let me share my story. I am 58 yrs old. I have always been really active by walking, biking, hiking, etc. February 2016 I started having some stiffness. I thought maybe it was stress related. Then it became worse and I had pain in my upper arms, thighs, neck, and buttock muscles. I couldn't get an answer from a physician. They kept trying to dose me w rheumatoid arthritis.
I was on vacation in June and I met a lady who was describing her symtoms to me. She had just been diagnosed w PMR. Her symptoms were exactly the same as mine. I went back to my Dr and told her I believed I had PMR (I understand it's hard to diagnose). She did some blood tests, found my inflammation factors to be high and the determining factor to diagnose was, immediately when I started taking the predisone, I felt completely healed. That was on 10mg. I read up on side effects of predisone and I don't want to take the medication, but find that I can't move wo it. I am now on 5 mg. I still have some pain and stiffness, but it is manageable. The dr wanted to put me on methaltrexate and I refused. It has been a year now. I find that stretching, even though it is painful and going for short walks helps. Some days I feel normal, but most days it is evident I have this stiffness. (I have named it the FRANKENSTEIN DISEASE)! I still get up and work every day until noon, and I try to get a couple of hours of rest each day. I am more tired than I use to be. I have read others stories that talk about people going into remission, so I am praying for that.
Barbara Rene'

barbararene

Thu, Feb 16 at 6:56pm CDT by @barbararene re: Poly myalgia rheumatica in Autoimmune Diseases · View  

Thanks John
It's rare to find too many diagnosed w pmr.
I'm on 5mg a month,then decreAse every month until 0.
Didn't work before.
Am trying again .

barbararene

Mon, Feb 13 at 7:17pm CDT by @barbararene in Autoimmune Diseases · View  

Poly myalgia rheumatica

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can't take pain meds, but do drink wine to ease pain, although I'm told no alcohol w prednisone. Anything you can share as far as info

barbararene

barbararene responded Mon, Mar 20 at 6:04pm CDT · View

I have found a cream online called deep blue rub. It is a little expensive but that's what I'm using

johnbishop

John Bishop, Volunteer Mentor responded Wed, Mar 22 at 5:19am CDT · View

Hi @rinron here is the message you shared with me that was meant for everyone in the group. Hi Everyone. I want to thank all of you who responded to my call for help regarding my husband's particular side effects from Prednisone. Seems only a few of you had similar thin-skin issues and volatile temperaments. I read all of your posts outloud and he appreciated them. That being said, he is not one to sit [...]

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