General RA questions | Arthritis Information
Hi all, I am new to this forum, without a positive RA diagnosis yet, but growing symptoms and positive for the bloodwork (RF level of 1780!!!).
I have a few questions about life with RA, if you don't mind answering...
1. When you are not in a "flare up", what does it feel like? Is it pretty benign? Does it vary by person? I have some strange sort of zingy feelings in my fingers and sometimes feet, that I would describe as uncomfortable but not all the way to "painful". I'm wondering if what I'm feeling is RA related or not. And also, if I continue to worsen, what I should expect.
2. Are you on lifelong medication for this, or do most people treat only when they are experiencing a flare up? My doctor has suggested plaquenil and I'm not too keen on any on-going medication so I'm trying to collect more info on what is the usual course of action.
3. If you were blood positive for RA, what were your Rheumatoid FActor levels like? I'm just wondering wheter a level of 1780 is consistent for people with RA, or whether it's way, way higher than the average RA patient.
4. If you are a woman, have you experienced any reproductive issues? Have you ever heard of RA issues being linked with reproductive issues? (I ask b/c I am, and I've had 8 miscarriages, which is what uncovered this RF issue- whether it's linked or not).
Many, many thanks!!!
1. Definitely varies for every individual. When I am not in flare mode I feel pretty normal, except for the fatigue I experience for maybe 12 hours starting about 48 hours after I've taken my weekly dose. Small price to pay. I sail and generally have no restrictions on what I do. But then consider that I’m older and have other medical conditions going on, so this question is best answered by someone younger with only RA and no other diseases.
2. Yes, I am on Methotrexate and never get off it. Why? Because it halts the progression of the disease. If I were to get off it I would induce a flare. You definitely need to be on one of the DMARDS – to decide to forego a med now will invite great trouble down the road. Typically doctors will start with the drug that will best halt the progression. They won’t necessarily give you “the big guns” – best to hold something in the weapon arsenal for later if you need it. Though I have been reading studies that claim it’s best to get really aggressive in the beginning.
3. I am sero-negative.
4. My diagnosis came a few years after an early menopause so I can’t address reproductive issues, per se. However I can tell you that Methotexate [MTX] is what you should not take if you are planning on getting pregnant as there is a high rate of teratogenesis. Also, I have heard that women may feel well during a pregnancy but then the RA comes back like the devil. But again – your mileage may vary. Considering your 8 miscarriages and that you were told l[if I could recall correctly] that it was autoimmune related, I would definitely want to talk to an autoimmune fertility specialist and get answers. On a personal level, I can tell you that life can be very fulfilling without being a biological mother. I think the real question is, given that there’s some inheritance for RA, do you really want to pass on this disease to a child?
I know you’ve probably done a lot of research but maybe this link might help. You need a subscription but you can at least read the abstract.
http://linkinghub.elsevier.com/retrieve/pii/S0015028201016752
Thank you so much and fthanks for the article too! I think I"m a bit in denial about actually having RA, since the doc hasn't officially diagnosed it. I also wonder if te RF factor is elevated so much b/c of some other (yet undiscovered) autoimmune issue I have related to the pregnancy complications.
FWIW, I actually ended up opting for gestational surrogacy after my loss history and now am the biological mom to two wonderful children (twins). It's 2 years after their birth that I've discovered this RF/RA issue, and yes- it occurs to me that I have passed this to one or both of the kids- just hoping my husband's gene pool happened to win out in this area.
Sam1234- I just read the abstract of the article you posted.
Can you tell me (just high level) why you picked this article to post to me? In other words, what is the correlation between the Interluekin 1 receptor and RA? Why did you think of this link? (I don't know enough about RA to make the lnk myself- sorry!) (The abstract is pasted below).
Interleukin 1 receptor antagonist polymorphism in women with idiopathic recurrent miscarriage
Fertility and Sterility, Volume 75, Issue 4, April 2001, Pages 683-687
Gertrud Unfried M.D., Clemens Tempfer M.D., Christian Schneeberger Ph.D., Barbara Widmar B.Sc., Fritz Nagele M.D. ...
Abstract: Objective: Proinflammatory cytokines have been described as etiologic factors in idiopathic recurrent miscarriage. We investigated the relation between idiopathic recurrent miscarriage and polymorphisms in the gene encoding for the interleukin 1 receptor antagonist, an indigenous modulator of proinflammatory immune response.Design: Prospective case control study.Setting: Academic research institution.Patient(s): One hundred five women with a history of three or more consecutive pregnancy losses before 20 weeks of gestation and 91 healthy, postmenopausal controls with at least two live births and no history of pregnancy loss.Intervention(s): Peripheral venous puncture.Main Outcome Measure(s): Polymerase chain reaction was performed to identify the different alleles of the gene encoding for interleukin 1 receptor antagonist.Result(s): Allele frequencies among women with idiopathic recurrent miscarriage and controls were 0.34 and 0.11, respectively, for the polymorphic allele 2 (P=.002; odds ratio: 7.4, confidence interval: 2.9–10.8) and .05 and .05, respectively, for the polymorphic allele 3 (P=.6; odds ratio: 1.3, confidence interval: 0.8–2.3). Allele 2 was present in homozygous form in 9% of women with idiopathic recurrent miscarriage. In contrast, 1% of the control women were homozygous for this allele (P<.001; odds ratio: 13.5, confidence interval: 7.5–21.8).Conclusion(s): These data support a role for allele 2 of the gene encoding for interleukin 1 receptor antagonist as genetic determinant of idiopathic recurrent miscarriage.
IL-1 is a pivotal cytokine involved in the pathophysiology of RA and the studies show there is a connection to miscarriages in women with RA [possibly latent].
This article lays claim to a genetic indicator for miscarriage and presents the chromosomal link to IL-1 which is related to RA.
Do you have any children?
[Not sure if I answered your question.]
Sam- thank you, this answered my question perfectly!!!!
And yes, I have 2 kids, but they were born via a gestational surrogate. I was never able to carry a pregnancy to term - miscarried 8 times until we threw in the towel and opted for a surrogate (biologically our kids but carried by someone else).
Look, the way I see it is that the REAL mother is the one who wipes the noses and dishes out curfews and chauffeurs them everywhere. Doesn't matter, in my book, who carried the kids or even if they have your blood at all.
Two kids is a perfect family. Maybe now is the time to put yourself first, Mom, and not worry about which drugs might impact a pregnancy. Maybe a tubal ligation to prevent future pregnancies? That's something only you can decide.
Sam1234, fwiw, I don't have any issue with drugs that impact pregnancy. At all! As in, we are done with our family. BUT I do have an issue/fear/generally suspicious nature about any drug that I will have to maintain lifelong...
But thanks again- I agree wholeheartedly on what makes a mom!
[QUOTE=U510545]Hi all, I am new to this forum, without a positive RA diagnosis yet, but growing symptoms and positive for the bloodwork (RF level of 1780!!!).
I have a few questions about life with RA, if you don't mind answering...
1. When you are not in a "flare up", what does it feel like? Is it pretty benign? Does it vary by person? I have some strange sort of zingy feelings in my fingers and sometimes feet, that I would describe as uncomfortable but not all the way to "painful". I'm wondering if what I'm feeling is RA related or not. And also, if I continue to worsen, what I should expect.
2. Are you on lifelong medication for this, or do most people treat only when they are experiencing a flare up? My doctor has suggested plaquenil and I'm not too keen on any on-going medication so I'm trying to collect more info on what is the usual course of action.
3. If you were blood positive for RA, what were your Rheumatoid FActor levels like? I'm just wondering wheter a level of 1780 is consistent for people with RA, or whether it's way, way higher than the average RA patient.
4. If you are a woman, have you experienced any reproductive issues? Have you ever heard of RA issues being linked with reproductive issues? (I ask b/c I am, and I've had 8 miscarriages, which is what uncovered this RF issue- whether it's linked or not).
Many, many thanks!!!
[/QUOTE]
Welcome to the board.
Generally speaking, if my medication is working, I don't have any pain. It's somewhat difficult to answer your first question. When I was first diagnosed, I started on Plaquenil. I did really well on it for the first few years with only a couple of flares. Then, it just wasn't enough. I tried a few others before moving on to Enbrel. While I was searching for something that worked, I would feel pain every day. Now that I'm on Enbrel, I don't experience any pain. The key is to find something that works. I also think it makes a difference on whether or not you have damage.
Yes, I am on lifelong medication. If you are diagnosed with RA, you'll want to stay on a "disease modifying" medication as well. That's what keeps you (or delays) damage. The only medications I take on an as-needed basis is prednisone, NSAID, and Lortab when I flare.
I was positive for RF as well as Anti-CCP. The Anti-CCP is more specific for RA. My RF was 330 and my RD said that for my lab, below 20 was normal. He said that 60-80 was considered a high positive reading. Labs have different lab ranges, but I'm guessing your range is high. Did you have any other positive results besides the RF? I was also positive on the ANA, Sed Rate, as well as CRP.
I was diagnosed with RA after I became menopausal so I really don't have an answer for your last question.
1. When I'm not in a "flare-up", I typically feel normal. Sometimes it's hard to know exactly.... When I go to bed and my knee sort of hurts... is it because I worked out too hard that day or is it my RA? When I wake up in the middle of the night with a slightly sore shoulder... is it because I carried my son around all day or is it my RA? The big flares... where I'm in tears and can't move the joint... I know that's RA. But day to day little pains... it's often hard to tell what exactly it is.
2. I feel a lot like you do when it comes to medication. I don't want to get pregnant at the time, but I'm not on birth control (we use other means)... I hate medication that much! That being said, I just got put on plaquenil for my RA. I had delayed meds for two years because my RA was fairly inactive and I was a bit in denial, however, last check up my blood tests didn't look so great and we decided to start meds.
This is how I see it. The most frightening thing to me is the deterioration of my joints. So I asked my rheumy, I said, "I can deal with the pain right now. I don't want to start meds for my comfort. But, will the meds help stop the progression of my RA?" And he told me that we would be starting meds to help stop the progression of my RA. I figure, if my RA isn't too bad right now and I can find a med that my body tolerates, why wouldn't I try to stop my RA in it's tracks? It's very manageable right now, so why would I wait for it to get worse before I try to control it? Like I said, I'm on plaquenil and tolerate it just fine. And I feel good knowing that I'm doing something to control my RA. As much as I want to be in denial, I can't ignore it. It's not going away.
3. Don't know my Rheumatoid Factor... I know I prob should, but I forgot.
4. I just had my first baby and had no problems with miscarriages. And yes I worry about passing on RA to my children, but not enough to not have children. Yes it sucks having RA, but I'm still glad my mom chose to have me! And I couldn't imagine my life without my son. He has eczema which he most likely got from my genes, and I do feel bad about that, but I wouldn't change a single thing about him!
Maybe you'll find some humor in this:
I know my medication isn't working or is insufficiently dosed when it's the middle of winter and I get into bed and my body heats the sheets better than any electric blanket can.
In Feb 08 when I came back from Xmas holidays I earnestly started searching and then researching this disease. The first thing I discovered s that it was just one of the many AI diseases and it didn't take too long to convince me I had it for life and there was no cure. Once I accepted that fact I began searching for a way to treat the symptoms. At this early stage I was just looking for something to ease the pain but what I found was a therapy that could actually lead to remission.
I started AP on Jun 2 08, choosing to go onto AP therapy before I read 'the book', but I had read a lot on the subject of AP v/s traditional meds prior to making my decision.
Prior to AP my pain levels were at the 'please kill me & put me out of my misery' stage & am now asymptomatic.
I believe it is up to us to research, ask questions and finally make our own decision as to what we are and what we are not prepared to do (hopefully with our doctor's or health care professionals' support and monitoring). For me my treatment plan is 'diet' and 'AP therapy', my long term goal is to get into remission within 3-5 years.
No matter how you choose to treat your disease I wish you well.
[QUOTE=U510545]Hi all, I am new to this forum, without a positive RA diagnosis yet, but growing symptoms and positive for the bloodwork (RF level of 1780!!!).
I have a few questions about life with RA, if you don't mind answering...
1. When you are not in a "flare up", what does it feel like? Is it pretty benign? Does it vary by person? I have some strange sort of zingy feelings in my fingers and sometimes feet, that I would describe as uncomfortable but not all the way to "painful". I'm wondering if what I'm feeling is RA related or not. And also, if I continue to worsen, what I should expect.
2. Are you on lifelong medication for this, or do most people treat only when they are experiencing a flare up? My doctor has suggested plaquenil and I'm not too keen on any on-going medication so I'm trying to collect more info on what is the usual course of action.
3. If you were blood positive for RA, what were your Rheumatoid FActor levels like? I'm just wondering wheter a level of 1780 is consistent for people with RA, or whether it's way, way higher than the average RA patient.
4. If you are a woman, have you experienced any reproductive issues? Have you ever heard of RA issues being linked with reproductive issues? (I ask b/c I am, and I've had 8 miscarriages, which is what uncovered this RF issue- whether it's linked or not).
Many, many thanks!!!
[/QUOTE]
This is a really good site for questions and general info about RA
I'm in remisssion, so I don't have flare ups anymore. Whether or not you are having pain, you may still be having damage
It's very important to treat your RA early to avoid joint damage and more importantly, because it increases the chances of having your RA go into remission....
Lynn492010-03-25 06:08:45Hi U5,
-I've had RA since 2002. 3 separate times, I've had a major flare, each ~1year duration.
-I've been on DMARDs since 2003, first Plaquenil but then Methotrexate by injection. They sure took a long long time to kick in to start showing results, but the benefit was worth the wait; they've successfully prevented deformities. I'm definitely not symptom-free so my RD says I have "Managed active disease". I'm just grateful I'm not as debilitated as during those flare years or stuck with permanently deformed hands. Life's hard enough as it is.
-I can relate to your baby sadness. I lost 2. My medical condition was severe endrometriosis, horribly painful and requiring multiple surgeries until my hysterectomy at 27 which cured me. By 29, I was a happy mom of our first adopted baby. She arrived at age 10weeks, the second at 5months(from Korea) and they are only 17months apart in age from each other. Our 2 daughters are now grown-up, delightful, still devoted to us. They each live just hours away from us so we see them fairly frequently and get phone calls 1-3 times/week. I mostly get the relationship or fashion or dog conversations and my husband the work related issues since my previous career as a nurse was so different than what they do. It warms my heart that at their ages, they still need and want us.
Pregnancy is special but temporary, motherhood is beyond-wonderful and forever.
-Also like you, my RFactor is extremely high. Since '02, mine is always 1250 to 1700.
It's checked yearly and along with it, all the tests for other possible causes ie liver disease like hepatitis or heart trouble like endocarditis.... always negative. Although it's mostly a diagnostic tool, we watch it for changes and out of curiosity. The lab often runs it twice. Our lab says normal is 0-13 and 60 is considered a real positive. Mine goes up and down within my very high range and seems to have no correlation with how I'm feeling... go figure. It's a big mystery if you ask me.
-good luck and feel free to ask us anything
CathyMarie
U510545, in your first post you said you had some 'zingy" parts. Can you describe that more? I have a couple of toes that feel like an electric current is going through them when they are touched. Is what you are feeling anything like that? ThanksHi ya! Welcome to our forum.
I was diagnosed in '97, but didn't get treatment until late '98... no insurance, pre-existing condition... It was shortly before my 40th birthday and I remember that as my worst birthday ever because I felt so old!!! I wish now I could have been treated, and treated aggressively. But the clock only runs one way, and living my life with "shoulda, coulda, woulda" not only doesn't help, but keeps me from exciting things!
As a lay person, I look at my labs and if something is out of whack, I ask what is to be done about it and then, do my best to correct it. My RF has never really reflected how I am feeling, so I pay little attention to that, and, frankly, the rest of my labs as well. I don't mean I don't care what the labs say, I do and I ask for reports, but I try not to stress overly about them and do my best to follow the directions of my doctor in correcting the issues.
I am sorry you have had pregnancy issues, the loss of a baby is so heartbreaking. Cathy is so wonderful to share her beautiful story (miss you, Cathy!
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