How to address PMR pain while decreasing prednisone

Yuk John turmeric in coffee does sound terrible I won't do that one ......ha ha Beryl

Good to know. I will give it a try. Thanks sallygoose

Hi all, I was just diagnosed with PMR and Temporal Arteritis (TA) today. I was diagnosed with SLE (Lupus) several years ago, which went into remission. I thought I was experiencing a Lupus flare, but no, this is a brand new autoimmune disease. Ugh! I'm taking prednisone right now, but have been managing the pain with plaquenil (my GP also thought it was a Lupus flare). I have only a few symptoms related to the TA, and they're infrequent. I hate the idea of having to take prednisone long(ish) term, meaning more than a month or so, but the risk of a problem if I don't take it - blindness - is scary! I'd like to know if anyone else here has it and what their experience has been. Thanks in advance for any thoughts.

Hello my name is Beryl, I to have PMR and TA, and have been on Pres for a number of years , I haven't any sign as far as I know of TA any more but am still on Pres. for the PMR.....you will probably find that the Doc will adjust you meds as you go but it is necessary for you to take Pres. for your TA......just go with the flow and don't worry about it blood tests will tell the doc what's happening .......the best of British luck to you.....

Hi @evelyn123, welcome to Connect. I also have PMR but it is currently in remission. It's different with each of us. I have had 2 occurances of PMR. The first took me about 3 years to taper off of prednisone. The second occurrence took me about a year and a half to taper off of prednisone. I started both occurrences at 20 mg dosage. One of the things I think that helps is to keep doing some exercises but not overdoing it. Also, I would work with your rheumatologist or doctor on a tapering plan to help you taper off of prednisone.

John

@evelyn123 - Hi - I am Tinkerbell and was diagnosed with Temporal Arteritis - It is also know as Giant Cell Arteritis. I had my temporal biopsy on 3 May 2017 at Mayo Clinic. I was started on 60 mg of Prednisone 1 and 1/2 years ago. I took my last pill yesterday (1/2mg). It has been a long road and I have gained 12 lb. Otherwise, I have done very well. I am hoping that I will be okay but there is the chance I may have to go back on the Prednisone depending on the symptoms. Once I started on the Prednisone the headache was gone by that evening. The biopsy was done 1 day after my emergency room visit. I also have other autoimmune diseases - hypothyroid and rosacea. If you have any question just get back to me.

@evelyn123. I am elderdiana.Three years ago while on vacation, I temporarily lost my vision in right eye, also jaw pain. When I got home my primary care Doc told me to go to.hospital immediately.I had no headache pain. After 2 days of tests, I was told I did not have TA, also called giant cell arteritis, said it was migraine headaches in eye. My doc insisted I should have a biopsy which was done dec 1 2015 and TA was confirmed att another hospital. I WAS PUT ON 60mg of prednasone For 3 months and methotrexate was added. Prednasone was slowly lowered until last march 2018 down to 3 mg. That is when my sed rate and c reactive protein tests began to climb. My rheumatologist wanted me to come in once a month for intravenous injections of Actemra in her office.I REFUSED. Because INTRAVENOUS USE of this drug is not allowef by FDA.for temporal arthritis. Until a few weeks ago I was still on 3 mg and my c reactive protein test hit 27.I called and said I want more prdnazone and was put on 5mg. My blood tests are improving. I HAVE A LONG TIME Primary CARE DOC I CAN TALK TOO in addition to seeing the Rheumatologist, every 6 weeks. I hope you do not have TA it is a complex disease especially with eye involvement but it is .manageable. It is helpful to read Mayo connect about others withf TA. to view their progress and also good to have a good primary care doc in addition to your rumatolagist.

I am new to the group, having been diagnosed in Sep. 18. with PMR at 67.i was very healthy and walked 3-5 miles every day. Then one day when I got up from a chair I felt a stiffness in back of my thighs and I struggled a little to get started moving. Then over a few weeks the bottom fell out for me. I am still in a state of disbelief, shock, that this has happened to me. Nights are awful.

Hello Rogernj69 my name is Beryl and I too have PMR....glad you found us as I am pretty sure you will feel better about your condition being able to talk to people in the same position .....I feel for you as it is bad to be an active person and all of a sudden you can't do the things you used to do ......talk to us and we will try and help you with our experiences.......

Hello @rogernj67, I would like to welcome you to Connect along with @beryl and other members here with PMR. I was first diagnosed with PMR in 2007 and was prescribed 20 mg of prednisone which pretty much made the pain go away but I still had some stiffness. I was able to taper off of prednisone in 2010 when the PMR went into remission. It came back in 2016 and I was back on prednisone and gradually tapered off in Feb of this year when it appears to have went into remission again. It definitely puts a crimp in ones style but I think one of the keys is to keep moving and doing some exercise but just not overdoing it so that it brings more pain. Interesting that I was also 67 in 2010 when I was first diagnosed with PMR.

You mentioned nights are bad. Have you mentioned it to your doctor or rheumatologist? I'm wondering if they could spread your medication dosage out or take some in the morning and some at night. I never needed to do that but maybe others can share how they deal with the pain.

John