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ellenh
@ellenh

Posts: 6
Joined: Aug 31, 2018

Rheumatoid arthritis questions

Posted by @ellenh, Fri, Aug 31 8:48am

I had a little stiffness in my fingers in the morning. Nothing else, no pain. My doctor took an ANA which was strongly positive and sent me to a rheumatologist who did an anti-CCP. It was over 200. From this she told me I had RA and put me on hydroxychloroquine which made me sick and I discontinued it. Just saw her again six months later, no symptoms. She repeated tests and anti-CCP was higher than before. She wants me to start sulfasalazine. My question is, has anyone been diagnosed with RA who has never been in an active stage, and how imperative is it that you take a DMARD? The meds make me far sicker than the disease so far. I understand why it is recommended – to keep the disease from progressing – but so far I have no signs of RA. Is that even possible??

REPLY

@ellenh I was diagnosed several years back. My RA here at the University, never said firmly that I had RA. It drove me nuts. Then she found something questionable in my blood work. Still no firm words and I asked her, whats up. She was sending me to an oncologist. She prescribed Methotrexate pills which made me so sick. I could not eat and spent my time in the bathroom. She then prescribed the a shot once a week of Methotrexate which I give myself.
Two things have happened. My RA is getting worse. I am so tired all the time. MY body aches in the morning and after I take my dog out for a walk, I hit the bed for at least an hour to let the stiffness try to calm down. The only pain med I take is Tramadol. It does little, but at least it helps some. My spine dr told me to add 2 Advill along with one tramadol. I have to admit, it helps SOME. The oncologist told me that I am about 1% blood cancer. I forgot name of this. I am 76 and I told him that ok, I am not taking any precautions to end the cancer should it take off. My body and my mind cannot take anymore. When I lived in Oregon, I used Marijuana (oil). It worked and I was able to go out to lunch with my friends, church, everything. Texas Marijuana is illegal and I am suffering for their stupid law People who do not understand what Marijuana does for me should keep their mouth shut until they try it. I pray I get some relief, soon.

Hello @ellenh — Welcome to Connect. Thank you for sharing your post. It is a good thing to ask questions and learn all you can about your health condition. I don't have RA but do have polymyalgia rheumatica that is currently in remission. I found a website that may give you some additional information about the Anti-CCP Test (Anti-Cyclic Citrullinated Peptide):

https://www.rheumatoidarthritis.org/ra/diagnosis/anti-ccp/

There is a link on the site that has home remedies that may provide some relief:
https://www.rheumatoidarthritis.org/home-remedies/

@ellenh did the doctor identify any other conditions along with the anti CCP test that indicates RA? According to the anti CCP test description it is used in conjunction with several other criteria to make a diagnosis of RA. I would ask them what else makes them think RA.

John

@oregongirl

@ellenh I was diagnosed several years back. My RA here at the University, never said firmly that I had RA. It drove me nuts. Then she found something questionable in my blood work. Still no firm words and I asked her, whats up. She was sending me to an oncologist. She prescribed Methotrexate pills which made me so sick. I could not eat and spent my time in the bathroom. She then prescribed the a shot once a week of Methotrexate which I give myself.
Two things have happened. My RA is getting worse. I am so tired all the time. MY body aches in the morning and after I take my dog out for a walk, I hit the bed for at least an hour to let the stiffness try to calm down. The only pain med I take is Tramadol. It does little, but at least it helps some. My spine dr told me to add 2 Advill along with one tramadol. I have to admit, it helps SOME. The oncologist told me that I am about 1% blood cancer. I forgot name of this. I am 76 and I told him that ok, I am not taking any precautions to end the cancer should it take off. My body and my mind cannot take anymore. When I lived in Oregon, I used Marijuana (oil). It worked and I was able to go out to lunch with my friends, church, everything. Texas Marijuana is illegal and I am suffering for their stupid law People who do not understand what Marijuana does for me should keep their mouth shut until they try it. I pray I get some relief, soon.

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Texas Freedom I found one thing out with my fibromyalgia when my body is hot I hurt so I take a lot of lukewarm showers also my thigh burn this helps.

@lioness

Texas Freedom I found one thing out with my fibromyalgia when my body is hot I hurt so I take a lot of lukewarm showers also my thigh burn this helps.

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What I'm trying to find out is if there is anyone being treated for RA who has not experienced any significant symptoms since diagnosis.

@ellenh

What I'm trying to find out is if there is anyone being treated for RA who has not experienced any significant symptoms since diagnosis.

Jump to this post

Hi ellenh, I was diagnosed with RA in 2003. The diagnosis was made from lab work. I had few symptoms. I have been taking Plaquenil for about 7 years and am doing pretty well, with very little progression.

@johnbishop

Hello @ellenh — Welcome to Connect. Thank you for sharing your post. It is a good thing to ask questions and learn all you can about your health condition. I don't have RA but do have polymyalgia rheumatica that is currently in remission. I found a website that may give you some additional information about the Anti-CCP Test (Anti-Cyclic Citrullinated Peptide):

https://www.rheumatoidarthritis.org/ra/diagnosis/anti-ccp/

There is a link on the site that has home remedies that may provide some relief:
https://www.rheumatoidarthritis.org/home-remedies/

@ellenh did the doctor identify any other conditions along with the anti CCP test that indicates RA? According to the anti CCP test description it is used in conjunction with several other criteria to make a diagnosis of RA. I would ask them what else makes them think RA.

John

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Thank you for the links, John. Yes, my doctor tested me for other autoimmune diseases, primarily DRVVT, anticardiolipin antibodies, antiphospholipid panel II, and beta-2 glycoprotein IgG and IgM. My x-rays are negative. My ANA was very high which initiated the investigation. From what I understand, a high positive anti CCP test almost always indicates RA. My concern, of course, is taking a medication that can cause more negative effects than the disease is doing currently. I literally feel great, energy level is excellent, no aches and pains out of the ordinary (I'm going to be 65 next month). So I just want to be sure that taking a DMARD is a good idea when I have no symptoms of RA nor have I ever other than hand stiffness. I live in Kansas City but I'm a teleworker at Mayo. Just want to make sure I'm doing the right thing before I start another med that could potentially make me feel far worse.

@karen00

Hi ellenh, I was diagnosed with RA in 2003. The diagnosis was made from lab work. I had few symptoms. I have been taking Plaquenil for about 7 years and am doing pretty well, with very little progression.

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Hi, Karen. Thanks for your info. Have you ever had significant symptoms or has your life been pretty much normal since 2003? I just do not know what to expect because I feel great and am rather fearful of all of a sudden getting ill. I got terribly ill on Plaquenil with severe stomach pains and violent diarrhea. Was not able to take it. I gave it a try for 6 months but the stomach issues were crippling. But all of the DMARDs basically have the same side effects. Just checking all the bases before I "dive in" again.

@oregongirl

@ellenh I was diagnosed several years back. My RA here at the University, never said firmly that I had RA. It drove me nuts. Then she found something questionable in my blood work. Still no firm words and I asked her, whats up. She was sending me to an oncologist. She prescribed Methotrexate pills which made me so sick. I could not eat and spent my time in the bathroom. She then prescribed the a shot once a week of Methotrexate which I give myself.
Two things have happened. My RA is getting worse. I am so tired all the time. MY body aches in the morning and after I take my dog out for a walk, I hit the bed for at least an hour to let the stiffness try to calm down. The only pain med I take is Tramadol. It does little, but at least it helps some. My spine dr told me to add 2 Advill along with one tramadol. I have to admit, it helps SOME. The oncologist told me that I am about 1% blood cancer. I forgot name of this. I am 76 and I told him that ok, I am not taking any precautions to end the cancer should it take off. My body and my mind cannot take anymore. When I lived in Oregon, I used Marijuana (oil). It worked and I was able to go out to lunch with my friends, church, everything. Texas Marijuana is illegal and I am suffering for their stupid law People who do not understand what Marijuana does for me should keep their mouth shut until they try it. I pray I get some relief, soon.

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@TexasFreedom The diagnostic confusion we all face is pretty rough, and on top of that is disagreements over meds and other treatments. I have RA as part of the package, and it is simply getting much worse while I wait for my next appointment. Lots of issues. But I take what the Doc says to take. Methotrexate injections weekly for a couple years now. I feel it has helped slow down the RA and the AL and probably a few other things. No side effects for me that I can tell. Lots of pain, high serum and urinary protein, fatigue, broken teeth, purpura eyes and toes, brittle toe and finger nails, AFib, blepharitis, macular skin arms, legs, buttocks, forehead; broken bones, brittle nails, dyspnea, OSA, Barrett's, esophagitis, cerebrum cortex deposits, thyroid cancer, prostate CA, cutis laxa, corneal lattice dystrophy, cardiomegaly, splenomegaly, hepatomegaly, lung invasion, spinal nodules, tendon knots on feet and hands, other issues. etc. But thank goodness it is spread all over my body. With only a certain number of fibrils to clone themselves, then die and deposit themselves, this means the whole process is slowed down to a crawl. So at 78 I can just hope to but off the whole disaster for a few more years. In November it will be 31 years since the cardi told us I would not live through the night.

@oregongirl

@ellenh I was diagnosed several years back. My RA here at the University, never said firmly that I had RA. It drove me nuts. Then she found something questionable in my blood work. Still no firm words and I asked her, whats up. She was sending me to an oncologist. She prescribed Methotrexate pills which made me so sick. I could not eat and spent my time in the bathroom. She then prescribed the a shot once a week of Methotrexate which I give myself.
Two things have happened. My RA is getting worse. I am so tired all the time. MY body aches in the morning and after I take my dog out for a walk, I hit the bed for at least an hour to let the stiffness try to calm down. The only pain med I take is Tramadol. It does little, but at least it helps some. My spine dr told me to add 2 Advill along with one tramadol. I have to admit, it helps SOME. The oncologist told me that I am about 1% blood cancer. I forgot name of this. I am 76 and I told him that ok, I am not taking any precautions to end the cancer should it take off. My body and my mind cannot take anymore. When I lived in Oregon, I used Marijuana (oil). It worked and I was able to go out to lunch with my friends, church, everything. Texas Marijuana is illegal and I am suffering for their stupid law People who do not understand what Marijuana does for me should keep their mouth shut until they try it. I pray I get some relief, soon.

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Sorry you're suffering. It was my understanding that marijuana oil had no THC in it, so therefore it isn't illegal. You can order it online, can't you? Do you have any friends in other states that could send some to you? It's available here in Missouri and we're about as conservative as Texas is. I would check about the cannabis oil. I think it probably is available.

@ellenh

Hi, Karen. Thanks for your info. Have you ever had significant symptoms or has your life been pretty much normal since 2003? I just do not know what to expect because I feel great and am rather fearful of all of a sudden getting ill. I got terribly ill on Plaquenil with severe stomach pains and violent diarrhea. Was not able to take it. I gave it a try for 6 months but the stomach issues were crippling. But all of the DMARDs basically have the same side effects. Just checking all the bases before I "dive in" again.

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Hey @ellenh, I’ve had no significant symptoms. Personally I’m terrified of getting lymphoma from DMARD’s. I refuse to start them. My rheumatologist has talked about them, but I shut down that conversation. No need for me to make that decision now as I’m doing ok. How about you? I’m sorry you had an awful reaction to Plaquenil! You’re not scared of side effects from biologics?

@ellenh

Hi, Karen. Thanks for your info. Have you ever had significant symptoms or has your life been pretty much normal since 2003? I just do not know what to expect because I feel great and am rather fearful of all of a sudden getting ill. I got terribly ill on Plaquenil with severe stomach pains and violent diarrhea. Was not able to take it. I gave it a try for 6 months but the stomach issues were crippling. But all of the DMARDs basically have the same side effects. Just checking all the bases before I "dive in" again.

Jump to this post

@karen00 Hi, Karen. Two things. Make sure you have a good grip on what you want your life to be. Then, with that clear, go for it, keeping in mind that you have some extra stuff to deal with. It is like having blonde hair, or green eyes. It is just stuff about you that you cannot ignore, but you can and must account for it sometimes. Do not worry about having it, just deal with it. Except for the extra pain and stiffness limitations it has no more necessary effect than a pimple on your shoulder.

@karen00

Hey @ellenh, I’ve had no significant symptoms. Personally I’m terrified of getting lymphoma from DMARD’s. I refuse to start them. My rheumatologist has talked about them, but I shut down that conversation. No need for me to make that decision now as I’m doing ok. How about you? I’m sorry you had an awful reaction to Plaquenil! You’re not scared of side effects from biologics?

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Plaquenil is a DMARD. The biologics, I believe, are the ones that are concerning for lymphoma. I think DMARDs actually slow down the chance of lymphoma. But yes, I hate the idea of taking drugs for a disease that I don't feel I have. I asked my rheumatologist what the repercussions of not taking a DMARD now were and she said they were "significant." The purpose of the DMARD is to prevent damage to joints and the progression of the disease. So, she wants me to start before I start having symptoms. It's just a hard pill to swallow, so to speak.

@ellenh

Sorry you're suffering. It was my understanding that marijuana oil had no THC in it, so therefore it isn't illegal. You can order it online, can't you? Do you have any friends in other states that could send some to you? It's available here in Missouri and we're about as conservative as Texas is. I would check about the cannabis oil. I think it probably is available.

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There is weed with thc but you can also get weed with cbd which is the one that helps with pain.

@oldkarl

@karen00 Hi, Karen. Two things. Make sure you have a good grip on what you want your life to be. Then, with that clear, go for it, keeping in mind that you have some extra stuff to deal with. It is like having blonde hair, or green eyes. It is just stuff about you that you cannot ignore, but you can and must account for it sometimes. Do not worry about having it, just deal with it. Except for the extra pain and stiffness limitations it has no more necessary effect than a pimple on your shoulder.

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@oldkarl, thanks so much for your thoughtful reply. I have recently moved and can’t see a new rheumatologist for 3 months. You have made me think that I need to talk about progression and maybe it’s time for something different. However, I understand that biologics have the possible side effect of cancer and that makes me run! I am terrified of it! All in all, it might be better for me to stay with what I’m taking now!

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