Remission, maybe.

Posted by jrp11948 @jrp11948, Apr 17 11:55am

Diagnosed with PMR on January 14, immediate Prednisone and 60 days later we added Plaquenil. Today was my monthly appt and doc says I’m in remission, but now to get off the prednisone. To me it seems awful early, only 90 days in, to celebrate, considering what I’ve seen on this forum, but I have little pain and my bloodwork is pretty normal.
I felt that the turning point was the addition of Plaquenil. I asked about some of the other drugs mentioned on this site. He said Plaquenil isn’t used much anymore because the drug companies have newer drugs that are more profitable, but Plaquenil is time tested and much less expensive. Maybe the newer drugs are better or more powerful. Anyway, it seems to work for me. He said if things change we may need to try some of the newer ones but he’s had good luck with the Plaquenil.
I start to taper down from 10 mg prednisone tomorrow to 9. Hopeful but wary. Trying to move ahead to normality!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@jrp11948 I actually don’t know if you are in remission or not. Your doctor would be the only one to really know. I went into remission several times with my autoimmune disease but then came out of remission, went back on drugs, and got into remission again! It’s like a roller coaster! I think I’m in remission now so I’m trying to do as much as I can while also taking care of myself. You may want to check out the discussion on planning your day:
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Taking care of yourself is the best way to get into remission and stay there.
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Here are 2 discussions that give more info on PMR.
https://connect.mayoclinic.org/discussion/any-relation-between-flareups-and-stress/
https://connect.mayoclinic.org/discussion/advice-on-managing-pmr/
Do you have any other autoimmune diseases?

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Thanks, Becky, I agree, that’s why I’m a little leery . I’m trying to not let this be all consuming. I feel grateful this has only been a 3 month ordeal, so far. I have always been a”jock”, even at 75, I ride my Peleton every other day, lift weights, play golf. Of course not as active as I was, but I believe it has helped with the PMR. I feel ridiculous in a way when I read about some people fighting this for years and years, and me only being in for a few months.
I’m sure some the fatigue is psychological and a side effect of Prednisone is moodiness and depression. So we’ll see. Fortunately my rheumatologist is very sharp and experienced in this area. He loves his work and has taken this as a challenge.

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I had swollen hands and pain in joints. My blood work was and is normal. My RA doc put me on prednisone. Instantly, pain went away and swelling went down. The shafts of my hand tendons were swollen too. My doc said I had to get off prednisone so he gave me plyquinol, methetrixate and folic acid as I tapered off the prednisone. Now I take plyquinol, methetrixate 8 once a week folic acid. The lumps on top of hands from ruptured tendons still there but left hand lumps almost gone and right done some. I have blood work once a month to make sure my liver and kidneys ok. My blood work is normal. I am going to continue taking the pills at my doctors suggestion unless my liver is affected. The next step would be a biologic and injected once a week. Super expensive. I was not taking one drug before this swelling in my hands and pain in joints. Now I take pills everyday. I also had covid vaccines 2. And I had covid twice. It wasn't bad but I got swollen hands and joint pain after the vaccines.
I will never have another covid vaccine.

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Morning kstar077, and welcome to the club!
The entrance into the RA world often brings a sudden shock, and turns your world upside down: new doctors, new medications, new restrictions on life, and most of all pain and dysfunction... all is overwhelming and can be pretty scary.
Sounds like you doctor has you covered. ( Prednisone is a wonder drug, but one should never be v on it long, as it can bring heavy complications.)
I am so sorry to hear of your Covid adventures! Those of us with RA, and any autoimmune disorder know that our immune systems are not the greatest, and are susceptible to picking up bugs easily. It is important to get your specialist's advise on how to handle any vaccination and when to get them.
Also, did your doc suggest any physio for your hands? They have some wonderful comfort measures, and lots of exercises for your hands to strengthen and to preserve and improve your hand function and movement.
Do you have a R.A. group in your area? Meeting others with this disease is so valuable: you can find support, and advice from others who have walked this road before you. You will also hear from others on Connect who will offer support and understanding.
All the best to you kstar. Let us know how you get on!

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@thisoldewe

Morning kstar077, and welcome to the club!
The entrance into the RA world often brings a sudden shock, and turns your world upside down: new doctors, new medications, new restrictions on life, and most of all pain and dysfunction... all is overwhelming and can be pretty scary.
Sounds like you doctor has you covered. ( Prednisone is a wonder drug, but one should never be v on it long, as it can bring heavy complications.)
I am so sorry to hear of your Covid adventures! Those of us with RA, and any autoimmune disorder know that our immune systems are not the greatest, and are susceptible to picking up bugs easily. It is important to get your specialist's advise on how to handle any vaccination and when to get them.
Also, did your doc suggest any physio for your hands? They have some wonderful comfort measures, and lots of exercises for your hands to strengthen and to preserve and improve your hand function and movement.
Do you have a R.A. group in your area? Meeting others with this disease is so valuable: you can find support, and advice from others who have walked this road before you. You will also hear from others on Connect who will offer support and understanding.
All the best to you kstar. Let us know how you get on!

Jump to this post

Hi Christine @thisoldewe, I see that your comment was directed to @kstar077 but that you didn't have the @ sign part of the members name. I thought I would mention that when you don't use the full @membername, the member you are posting to may not see your post because they won't receive an email notification unless they are following the discussion and even then may miss reading your helpful information.

You can find more information in the Help Center topic here:
-- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

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@johnbishop

Hi Christine @thisoldewe, I see that your comment was directed to @kstar077 but that you didn't have the @ sign part of the members name. I thought I would mention that when you don't use the full @membername, the member you are posting to may not see your post because they won't receive an email notification unless they are following the discussion and even then may miss reading your helpful information.

You can find more information in the Help Center topic here:
-- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

Jump to this post

Thank you @johnbishop
I have been making that mistake all along!
Thanks and enjoy your day!

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@thisoldewe

Morning kstar077, and welcome to the club!
The entrance into the RA world often brings a sudden shock, and turns your world upside down: new doctors, new medications, new restrictions on life, and most of all pain and dysfunction... all is overwhelming and can be pretty scary.
Sounds like you doctor has you covered. ( Prednisone is a wonder drug, but one should never be v on it long, as it can bring heavy complications.)
I am so sorry to hear of your Covid adventures! Those of us with RA, and any autoimmune disorder know that our immune systems are not the greatest, and are susceptible to picking up bugs easily. It is important to get your specialist's advise on how to handle any vaccination and when to get them.
Also, did your doc suggest any physio for your hands? They have some wonderful comfort measures, and lots of exercises for your hands to strengthen and to preserve and improve your hand function and movement.
Do you have a R.A. group in your area? Meeting others with this disease is so valuable: you can find support, and advice from others who have walked this road before you. You will also hear from others on Connect who will offer support and understanding.
All the best to you kstar. Let us know how you get on!

Jump to this post

I went to hand therapy. I am now doing at home. I am working on getting rid of lumps on top of my hands that are down some but still on top of right hand about a half left. The methetrixate, plquenil, folic acid keeps hand swelling away. Still working on lumps that happened from beginning hand swelling and rupture synovial fluid from tendon shafts. My hand surgeon wanted to do carpal tunnel surgery on both hands and cut out the bumps but the carpal tunnel is almost gone and I wear braces at night. Seems better. I just need the bumps on right and left hand to go away. Rt hand has reduced 50% and left hand 80%. I think the ra is in remission and I continue with my meds. If it flairs up again and meds don't work anymore, I will take enbrel injections. My blood work good so I can co tinder methetexate, plyquenil folic acid. Does anyone know how to get rid of the synovial fluid lumps on top of hands without surgery? As I said the left is almost gone from me heating , tens, rubbing and bracing. The right is more stubborn and 1/2 gone.

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Hello @kstar077,

Sounds like you are on the right path, and with medications that working... well done!!
Being vigilant with your exercise regime and all treatments is crucial.
I was put on Embrel at one time, and it was marvelous, but sadly developed side effects.. 😢.
So keep on doing what you are doing!
All the best.

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