About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (44)

Apr 5, 2018 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

Hope everyone is having a good day. Wish we were all pain free.
After 2 1/2 years I am now on 2 mg of prednisone daily. I am feeling bewtter and would say have improved 90%. I can say that today, I don't know what tomorrow will bring.
I have not had any luck going down to 1 mg and I like so many of you don't want to have a relapse and have to return to 5mg or higher.
Last time I did get to 1 mg and so much pain came back that I did have to increase back up to 5.
I'm wondering if at 60 yrs old I am going to have to take 2 mg a day for many years, if not ongoing.
I know the side effects are bad, but do we think the side affects of osteporosis would be devastating at 2 mg?
I do have a small fatty pocket at the base of my neck. I have read that this is a side effect.
I am taking a 50 mg of tramadol every night. I don't like that I am in that habit, but I feel I sleep better. It is an addicting medication though. It may not be a strong pain killer, but still addictive.
I don't think my rheumatoid Dr knows a lot about PMR, nor does anyone that I can find.
My wishes are for a good day for all that are dealing w PMR. Know that you are not alone and you can get better.
Yes, prednisone is a wonder drug for this illness, but no medication comes wo side effects, sadly.
God Bless,
Barbara Rene'

Jan 27, 2018 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

Hang in there. My understanding is low doses work well for pmr. Side effects sb mini mum at low doses. I’m on year 3. 3 mg of prednisone daily. I’m 50 yrs old.
I understand all the pain. I think the right amount of prednisone is the key. I also find trams doll helps me. It will get better. Be patient. Find what kind of exercise will work best for you. I work but have to have a couple hours rest a day. This is a puzzling illness.
Diets have not made any difference for me.

Jan 10, 2018 · PMR Anyone? in Polymyalgia Rheumatica (PMR)

Hello everyone.
I am now on 3mg of prednisone. I was on 1 1/2 mg and was in so much pain. Now I am doing well and am also taking tramadol twice a day.
I am looking forward to the day this will go in remission. I am 59 years old and one thing I have found out, (I work from 5am to 11am), after work I have to rest at least 2 hours a day or the pain comes on full force. I am thankful for the good days.
Hang in there.
This can be so depressing.
Barbararene’

Dec 13, 2017 · Referral to Mayo declined for Autoimmune or Unknown Condition in Autoimmune Diseases

I agree, I think we each know our own bodies and I don’t think many Physicians take the time or interest in us getting well. I have experimented w prednisone and tramadol and am finding what works best for me. I think by getting lab work every 90 days does help me identify what’s going on w my PMR. I do think I have developed some arthritis along w this mystery illness.
I agree, we just keep looking for someone that will take interest in us. I am seeing another rheumatologist in January just to see if he tells me the same things my rheumatoid Dr tells me to see if they are in agreement.

Dec 1, 2017 · Successfully treated for Polymyalgia Rheumatica in Polymyalgia Rheumatica (PMR)

Hey John, I know I’m replying to an old post here, but anyway hoping you get it.
I was doing so good, on 1/2 mg of prednisone. Felt like I was almost completely healed, then bam!, all came back. I am back up, (on my own decision), to 2 mg. I am also taking 1-2 tramadol, 50 mg a day. That is something new, bc I wasn’t doing that before. I see my Rheumatoid Dr at the end of January, but have decided to see another rheumatoid Dr for a second opinion. My pain has been terrible and I am somewhat depressed at my quality of life at 59 years old. I work from 5am till noon each day and then pretty much go home and lie on the couch for about 3 hrs. Not much activity. I do try to walk my dog about 15 minutes a day and this forces me to get some exercise. I’m wondering if I increase my prednisone again, that my pain would go down some. I know only my Dr can advise, just asking your thoughts. Now I’m wondering if I have rheumatoid arthritis, although I have no swelling of the joints, or have I been misdiagnosed. I just don’t know. Got anything to share w me?
Barbararene’

Oct 24, 2017 · Other pain medications for Polymyalgia Rheumatica besides prednisone in Polymyalgia Rheumatica (PMR)

I am taking 1/2 tramadol in the am and 1/2 tramadol in the evening. Seems to help.

Oct 17, 2017 · How to address PMR pain while decreasing prednisone in Polymyalgia Rheumatica (PMR)

I am 1 mg of prednisone currently. I know it is not a high enough dose, but I can manage. I say it’s not a high enough dose bc I still have a lot of pain in my neck and shoulders, especially in the mornings getting out of bed. I go to work at 5:30 am everyday, so I take 1/2 a tramadol at 5am hoping it will help a bit, then I take my 1 mg of tramadol.
I am walking about 20 minutes a day and trying to do a few stretches. I go see the rheumatoid Dr tomorrow and I will see what my inflammation levels are. I had lab drawn yesterday. Some days I feels really good and think, oh my, I’m healed and then the next day comes, and I’m like not!
I do have some fatty pockets around my lower neck and my research tells me it is from the prednisone. Each time I have tried to stop the 1 mg of prednisone, I can hardly move or walk and the bottoms of my feet feel a lot of pain.
What a mystery this illness is!

Sep 28, 2017 · New to PMR and worried about Prednisone in Polymyalgia Rheumatica (PMR)

Morning everyone.
I got off of my prednisone for 1 week. I was on 1/2 mg before. Well it didn’t last. All the pmr pain came bk. I am now on 1 1/2 mg of prednisone. I am not pain free but can manage much better. Don’t know what I will try next.
This has been going on for 2 yrs. No remission for me yet, but I am hopeful. When my pain returned it was in my neck and shoulders, but most in the bottoms of my feet, making it hard to walk.
Hope everyone has a good day.
Barbararene’