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Uncertain about medication path.

Posted by betsyhase @betsyhase, Aug 31 10:27am

First diagnosed PMR but once I finally got to a Rheumatologist he said RA. I didn't tolerate Methotrexate so he suggested Orencia infusions. I seem to be tolerating it but my concern is how long can I expect to need this? Also, the cost is pretty high even with some coverage. I tried to ask about it and he got kind of defensive and said I could go back on Prednisone. which I am still taking 9mg and tapering 1mg per month.
Question, is there someone out here who is on Orencia? How long are you excepted to take this? Is Orencia really better than Prednisone. I guess I dislike the idea of infusions long term. Now I am alittle confused of the right path .

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Profile picture for tweetypie13
tweetypie13 | @tweetypie13 | Sep 3 7:26am
In reply to @kmg218 "@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take..." + (show)
Profile picture for kmg218 @kmg218

@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take up to 6 mths to help my joint pain. It has done nothing...I had trouble with nausea and diarrhea with it throughout and my rheumatologist said if I can't tolerate it I would never be able to tolerate methotrexate, which was so disheartening. I see her this week and have no idea what will be next. I also have osteoarthritis and she says my pain is likely that and not RA...I'm so confused. I can't take any NSAIDS due to kidney issues so no pain meds except tylenol arthritis which does nothing. I'm an active person who works out daily and have all my life. I'm battling through it all but so disheartened by the feeling that there is nothing out there to help me. Do I insist on trying methotrexate despite her negativity towards it? ugh...

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@kmg218
Ask for more tests. Has the dr tested your SED and CRP?
They are the first test toward PMR.
I do not know the tests for RA.
Have you tried a trial run of Prednisone?
Prednisone tends to bring quick relief and is one of the ways they diagnose.
I have PMR and have great success with KEVZARA. It is also used for RA.

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tweetypie13 | @tweetypie13 | Sep 3 7:29am
In reply to @adlttl123 "In my walk with RA and meds I’ve been on several medications and I have NEVER..." + (show)
Profile picture for adlttl123 @adlttl123

In my walk with RA and meds I’ve been on several medications and I have NEVER BEEN ON A MEDICATION THAT TOOK 3 MONTHS TO KICK IN! And I would NEVER consider it. It’s been my experience that it is not necessary!!

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@adlttl123
I have PMR and Kevzara hs been a great help.
I was able to taper off prednisone completely as the Kevzara was kicking in.
And YES, it CAN take up to 3 months to kick in, and is worth it.
Fortunately, I have not needed to try other medications.

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adlttl123 | @adlttl123 | Sep 3 8:45am
In reply to @kmg218 "@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take..." + (show)
Profile picture for kmg218 @kmg218

@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take up to 6 mths to help my joint pain. It has done nothing...I had trouble with nausea and diarrhea with it throughout and my rheumatologist said if I can't tolerate it I would never be able to tolerate methotrexate, which was so disheartening. I see her this week and have no idea what will be next. I also have osteoarthritis and she says my pain is likely that and not RA...I'm so confused. I can't take any NSAIDS due to kidney issues so no pain meds except tylenol arthritis which does nothing. I'm an active person who works out daily and have all my life. I'm battling through it all but so disheartened by the feeling that there is nothing out there to help me. Do I insist on trying methotrexate despite her negativity towards it? ugh...

Jump to this post

@kmg218
When I was first diagnosed with RA the doctor put me on methotrexate and Plaquenil. and some others and I could not tolerate any of them. For me I knew right away if I could tolerate a drug. No I would NOT PUSH THROUGH!! I’m with my 4th Rheumatologist and he is great. They are not all created equal so I hope you learn to trust your self. There are great drugs out here. The first medication that worked for me was Embrel the epi pen. I also have Osteoarthritis and I have…ALL MY PAIN FROM RA. It’s inflammation and Tylenol will NEVER EVER HELP YOU. Sorry to be so blunt but I’m way ahead of you and I wish someone had said these things to me! Even though they are just my experience. I think everyone has to start on methotrexate for insurance purposes if nothing else and they say…it’s the “gold standard of RA! Boo Boo!!😊

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1 reply
Profile picture for betsyhase
betsyhase | @betsyhase | Sep 3 10:41am
In reply to @kmg218 "@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take..." + (show)
Profile picture for kmg218 @kmg218

@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take up to 6 mths to help my joint pain. It has done nothing...I had trouble with nausea and diarrhea with it throughout and my rheumatologist said if I can't tolerate it I would never be able to tolerate methotrexate, which was so disheartening. I see her this week and have no idea what will be next. I also have osteoarthritis and she says my pain is likely that and not RA...I'm so confused. I can't take any NSAIDS due to kidney issues so no pain meds except tylenol arthritis which does nothing. I'm an active person who works out daily and have all my life. I'm battling through it all but so disheartened by the feeling that there is nothing out there to help me. Do I insist on trying methotrexate despite her negativity towards it? ugh...

Jump to this post

@kmg218
I feel for you and totally understand. I tried Methotrexate and it gave me horrible diarrhea. I am now on Orencia infusions and I am tolerating it so far. I have had only 3 infusions and the only negative effect so far is mild dizziness that lasts 1-2 hours. Because of this I make sure to have a driver.

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kmg218 | @kmg218 | Sep 3 2:58pm
In reply to @adlttl123 "@kmg218 When I was first diagnosed with RA the doctor put me on methotrexate and Plaquenil...." + (show)
Profile picture for adlttl123 @adlttl123

@kmg218
When I was first diagnosed with RA the doctor put me on methotrexate and Plaquenil. and some others and I could not tolerate any of them. For me I knew right away if I could tolerate a drug. No I would NOT PUSH THROUGH!! I’m with my 4th Rheumatologist and he is great. They are not all created equal so I hope you learn to trust your self. There are great drugs out here. The first medication that worked for me was Embrel the epi pen. I also have Osteoarthritis and I have…ALL MY PAIN FROM RA. It’s inflammation and Tylenol will NEVER EVER HELP YOU. Sorry to be so blunt but I’m way ahead of you and I wish someone had said these things to me! Even though they are just my experience. I think everyone has to start on methotrexate for insurance purposes if nothing else and they say…it’s the “gold standard of RA! Boo Boo!!😊

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@adlttl123 I smiled at your 4th rheumatologist comment...I'm on my third and don't like her!! Looking for another. I know tylenol does absolutely nothing. Its so sad!! I do believe I have to try methotrexate before anything else is offered. I have a friend who is on it but injectable. She tolerates it well because it doesn't go through her intestines. That is my trouble, everything bothers my stomach. Thanks for your note, it gave me hope!!

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1 reply
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adlttl123 | @adlttl123 | Sep 3 3:04pm
In reply to @kmg218 "@adlttl123 I smiled at your 4th rheumatologist comment...I'm on my third and don't like her!! Looking..." + (show)
Profile picture for kmg218 @kmg218

@adlttl123 I smiled at your 4th rheumatologist comment...I'm on my third and don't like her!! Looking for another. I know tylenol does absolutely nothing. Its so sad!! I do believe I have to try methotrexate before anything else is offered. I have a friend who is on it but injectable. She tolerates it well because it doesn't go through her intestines. That is my trouble, everything bothers my stomach. Thanks for your note, it gave me hope!!

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@kmg218
Me too I have a stomach with a mind of it’s on. Sometimes it gets up in the morning and says “hey I’m running the show today you might as well go back to bed!!” I go really…not on your life!!😅

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Profile picture for kjoed53
kjoed53 | @kjoed53 | Sep 4 7:31am
In reply to @kmg218 "@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take..." + (show)
Profile picture for kmg218 @kmg218

@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take up to 6 mths to help my joint pain. It has done nothing...I had trouble with nausea and diarrhea with it throughout and my rheumatologist said if I can't tolerate it I would never be able to tolerate methotrexate, which was so disheartening. I see her this week and have no idea what will be next. I also have osteoarthritis and she says my pain is likely that and not RA...I'm so confused. I can't take any NSAIDS due to kidney issues so no pain meds except tylenol arthritis which does nothing. I'm an active person who works out daily and have all my life. I'm battling through it all but so disheartened by the feeling that there is nothing out there to help me. Do I insist on trying methotrexate despite her negativity towards it? ugh...

Jump to this post

@kmg218
There are other options for RA, including kevzara which I take for PMR. It takes up to 3 months for full effect and does nothing for my osteoarthritis though. I also take 3mg LDN, which I started as a bridge from prednisone to the kevzara. I know it helps me sleep pain free at night. I can't stay on prednisone because of a subsequent SMM diagnosis. I will mention that LDN is an off label prescription, requires a compounding pharmacy and is not covered by insurance. The cost is quite reasonable though. I pay $110 for a 90 day supply at a local compounding pharmacy, but if I use an online compounding pharmacy I would only pay about $80 and they would mail it to me. There are very limited and very small studies so far for its use with RA but it is garnering more attention for its potential.

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ssk999 | @ssk999 | Sep 4 8:13am

Simponi aria is a good biologic.
It falls under your supplemental if you are on medicare. So no drug co pay.
However any of the biologics are good if they work for you.
Get off that prednisone. It is only a temporary feel good drug. It causes all kinds of health issues. You are on a very heavy dose. Also exercise as much as you can. Use your joints even if they are sore. They get better. Use it or lose it.

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Profile picture for betsyhase
betsyhase | @betsyhase | Sep 4 10:54am
In reply to @kjoed53 "@kmg218 There are other options for RA, including kevzara which I take for PMR. It takes..." + (show)
Profile picture for kjoed53 @kjoed53

@kmg218
There are other options for RA, including kevzara which I take for PMR. It takes up to 3 months for full effect and does nothing for my osteoarthritis though. I also take 3mg LDN, which I started as a bridge from prednisone to the kevzara. I know it helps me sleep pain free at night. I can't stay on prednisone because of a subsequent SMM diagnosis. I will mention that LDN is an off label prescription, requires a compounding pharmacy and is not covered by insurance. The cost is quite reasonable though. I pay $110 for a 90 day supply at a local compounding pharmacy, but if I use an online compounding pharmacy I would only pay about $80 and they would mail it to me. There are very limited and very small studies so far for its use with RA but it is garnering more attention for its potential.

Jump to this post

@kjoed53
Interesting info. I will check it out. I am tapering Prednisone now slowly but now at 9mg. Plan is 1mg per month. I am newly diagnosed RA and learning to navigate the meds and minimize negative effects.

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donna2008 | @donna2008 | Sep 5 10:02am

I have tried several medications for my RA ...have not tolerated any so far, recently stopped the Leflunomide. So after researching different medications, I've found two I will be asking my doctor about. Have you or anyone here tried Azathioprine or Cyclosporine? Thanks for any information you can provide.

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