I am increasingly convinced that I do not have RA. My obesity is the reason
all my inflammatory markers are elevated. Now that my weight is coming
down, I am noticing that I don't have the symptoms. Now, my rheumatoid
factor is negative. I am considering going off my plaquinil because I'm not
sure I need it anymore. I really just do not want this diagnoses on my
records. It has made it impossible for me to get life insurance. There is
such a stigma attached to this disease. Is it possible to get a diagnoses
reversed and removed from medical records?Wow! You're giving us all hope that it can be reversed. Maybe just as we get it for no rhyme or reason, it can go the same way. I don't know about having things removed from your med records. We got our life insurance policies after we had kids and before my diagnosis. Do you think the insurance companies can periodically check up on our current health status and raise our premiums? I guess you sort of are locked in at what you sign up at. Wow again. I wish you great sucess.I hope that is the case. Do you mind telling us how over weight you are? I am topping out at 200 pounds right now (can't believe I admitted to that in public!)
Sounds like a good question for an attorney. Good luck & I'm glad you're feeling good. Congratulations on losing weight as well.
Peace & Love...Neasy
I was 105 lbs overweight when I started and have lost 35 lbs so still prettyThere are a few lucky people that have a form of inflammatory arthritis who have an episode, and then it goes away.
Going from 167 lbs to 100 over 18 months resulted in a 4 year remission (self claimed) for me. The remission started the last 6 months of the diet... I never was convinced that the weight loss did it because I got sick while I was still thin. So I never did know what made me get so much better. And I don't know what made me sick again either.
I have felt pretty good joint wise for 16 days! Could it be humira?
Lorster if your labs look normal I think you would be ok for life insurance. If you are old enough for AARP (50) you can buy a resonably priced term policy. (No Health Questions)
Sorry I have to disagree with most people with RA being obese. I'm at the most I've ever weighed in my life but certainly not obese. I have RA and hypothyroidism...I'm 5'9" and weigh 173 so a bit on the chunky side. I'm sure some of it has to do with genetics and the fact that I'm definately not as active as I used to be. I'm certainly not mountain bike riding or running through amusement parks like I once did. I've also met plenty of people that are thin, average, chunky and obese with RA. I do agree that extra weight is not good for us for many reasons but don't feel that everyone that has RA is or will be obese. Congratulations on the 35 pounds...that is a great accomplishment and you should be very proud. I do want to caution you to be realistic as far as your health. Although I truly hope you don't have RA and am glad you are feeling good, it would be very sad if you went off current medications and relapsed. I wish you all the best...just please, be careful when making these important decisions. I've read plenty about people in denial or people that go into remission going off medications and having to start over from square one...sometimes never being able to get back to where they were.
Peace & Love...Neasy
lorster that is really scarey. So many docs are just plain dumb. I know my RA has hurt me some finacially - but it is because I drag myself in. You just don't promote folks who are draggin'.
I am also stuck working for a big firm because the only health ins I can get on my own is the state high risk pool - 00 per month. This has also ruined my plan to retire early - I just have not saved enough to pay that much for health insurance for the next 11.5 years.
I read somewhere that RA can fizzle out over time and go into a permanent
Congratulations on the weight loss!!! I have read different things and been told different things about weight and ra. There are quite a few women here on the board that are not overweight at all and have a raging case of ra. So how much does weight actually have to do with ra? It is an interesting thing to research that is for sure. We all know extra weight is hard on the joints, but it is more of a wear and tear on the joints (OA).
Eating sensibly whether or not you have a chronic illness is a good idea anyways. It is even more important when you do have a chronic illness. Some of us on pred have a hard time doing that and the weight comes on. Unfortunately, that is one of the most annoying and self esteem damaging things about pred. Some of us can not be as active as we used to be...hence the weight comes on with or without pred. Even the smallest bit of activity helps. IF it can be done.
The only experience I have with remission is when we lived in AZ. My ra just *poof* went away and then took about a year for it to *poof* come back. I did very well on meds and went back into a short lived remission once again on meds. From what I have researched about RA it is possible to go into a long lasting remission. There are many of our JRA kids that can go into a very long lasting remission because of the meds that they have out there now.
It could very possibly be a combo of the weight loss and the plaquenil bringing down your numbers. I urge you as I would urge anyone that is thinking about stopping a med all together to consult with their doctor first. The goal for me is remission and although I would love to do it without meds I just don't think it will be possible. I am going to have to stay on my meds in order to stay in remission when I get there. Again. LOL.
Interesting Mary...thanks for that information.I dont know about the weight thing. My sisters are 5feet 6inches and over 200 lbs. They do have OA but no RA.I'm no scientist but some of my research has shown me some interesting things.
As RA progresses, supposedly people will either become really large or really small. I mean years and years with the disease. I have no idea why. My hypothesis is that there must be something going on with the gut bacteria. And a lot of the meds don't exactly help with this. Dr. Brown said that on AP the body will reset to it's correct weight. I find that this is what seems to be going on with me. I've dropped almost 20 lbs effortlessly. Before it was a struggle to get 5 lbs off and then if I even looked at chocolate it would magically reappear on my thighs.
Also, with RA my research has shown that less than 1% of people will spontaneously remit from the disease. I've seen that stat in multiple places.
However, with Palindromic RA (my diagnosis) researchers post the spontaneous remission rate at between 35% and 50% (depending on who is doing the research). As far as I can tell, this is the ONLY AI disease to do that.
What little I know about JRA I learned here - and small amount research when I heard about it. JRA seems to be a slightly different animal in that it is even more connected to adrenal/hormones than regular RA. (Please, JRA people - don't jump on me, this is just some stuff I read). It's why JRA people can either go into a remission around puberty or have it come on. No, this doesn't explain babies but will work with 3-4 year olds as various parts of the lympic (???) system starts coming on line then.
That being said - is the diet you're on anti-inflammatory in nature? Because if it is...that will explain a lot. I know of at least 2 people controling their RA with diet alone.
As for the negative and positive RF's. Docs use 7 criteria for diagnosing RA. RF is just one. People can and do have sero-negative RA and they tend to be in a world of hurt because doc's seem to concentrate on that number instead of the other criteria.
From posts here I've seen a lot of people post they are 'in remission' meaning their RF numbers go down clinically because of the meds but they still feel awful. I am nowhere near remission but my RF has gone from 706 to 286. Everything else is now negative. But I still 'feel' my PRA even tho I have no pain. Does that make sense? Like I can feel it lurking. If you feel lurking you are not in remission (IMHO) and should use that as a guideline. Does that make sense?
Also, I too intend to try and get the diagnosis off my records if I can eventually get off my antibiotics. The price for this diagnosis is way too high.
Pip
I have stiffness in the morning...and then all day long if I sit down for anyLori,
RA is such a strange disease....fatigue doesn't affect every person with RA and even when it does the levels of fatigue vary. Also the damage of joints varies too. Some people develop damage quickly with pain levels from mild to severe and some people don't develop damage for several years even when they suffer from severe flares. I hope that made sense. Me for instance, during my study they only did x-rays of my chest, hands and feet. According to my RD, there was no significant damage although I have a lot of problems with my hands. The majority of my really bad flares are in my knees and shoulders although the RA does seem to affect just about every single join imaginable including my jaw. At my next visit I am going to ask my RD to set me up for the MRI we discussed because I am worried about my knees and shoulders.
Although I do understand where you are coming from and how you're feeling...I also think that you are experiencing some denial. You are definately experiencing signs of RA along with a diagnosis and stopping the medications could leave you in a very bad place. Please don't make any sudden decisions without first discussing it with your doctor. If you are doing well and you quit the meds and crash...there is no guarantee that the medications will work for you in the same way again or that you will ever find your way back to where you are now. I don't know what else to say honey...just be very careful with the decisions you make when it comes to your health.
Peace & Love...Neasy
Lorster,
I just started methotrexate last weekend, but for three years, I was on Plaquenil. I had some wrists x-rays last february and I didn't have any erosions either. Like you, it made me wonder if I had RA.
Be careful about stopping your Plaquenil. I will tell you that I was doing so well that I (along with my RDs approval) decided to cut the Plaqnuenil in half to a "maintenance" dose. I feel like I gave the RA an inch and it took a mile. I had a very very difficult time getting the RA under control again. I was able to make some headway, but not like before - hence the addition of methotrexate this last weekend.
[QUOTE=lorster]Marian, once a doctor writes RA as a diagnosis, you own it regardless of
whether or not you really have RA. That is why it is so frustrating to not
really know if it is that or something totally different...or reactive arthritis
from a recent strep infection, who really knows and then when I converted to
RF negative, I really had to go back and question the diagnosis. I thought
that once RF positive, always positive. Isn't RF an antibody? And once an
antibody has been formed, isn't it always present? If that is the case, why
was I positive, then negative? Was the first test a false positive? These are
the things I don't quite get. The other thing is...if people on here are
seronegative on all their labs, can a doctor really write down that they have
RA? This diagnosis needs to be absolute in order not to screw up peoples
future. A mis diagnosis can really harm us financially.[/QUOTE]
Congrats on your weight loss! That is awesome. I hope you continue down that path and get to your desired weight. I have RA and I am not overweight. 5'7" 125 lbs-- pretty normal.
It is quite common for the Rh factor to fluctuate. Mine started at 282, and came down to 14 on antibiotics.
Yes, doctors do diagnose (and write it down) seronegative people with RA. I know several seronegative people who get disability, so I am sure their doctor had to "write it down."
Rh Factor can be positive for many different reasons. A good test for you to get would be the CCP or anti-CCP. Have you had this test? It is very specific for RA and should help answer your questions about whether you have RA. If it is positive, 99% you have RA. However, if it is negative, you might still have RA.
I agree, that it might be a good idea to see a lawyer about reversing the diagnosis.
Is your new diet anti-inflammatory? Do you think you might have eliminated some foods that you are allergic to? Maybe these are factors in your disease process slowing down.
Best wishes. I hope you don't have RA! [QUOTE=grammaskittles]
Congratulations on the weight loss!!! I have read different things and been told different things about weight and ra. There are quite a few women here on the board that are not overweight at all and have a raging case of ra. So how much does weight actually have to do with ra? It is an interesting thing to research that is for sure. We all know extra weight is hard on the joints, but it is more of a wear and tear on the joints (OA).
Eating sensibly whether or not you have a chronic illness is a good idea anyways. It is even more important when you do have a chronic illness. Some of us on pred have a hard time doing that and the weight comes on. Unfortunately, that is one of the most annoying and self esteem damaging things about pred. Some of us can not be as active as we used to be...hence the weight comes on with or without pred. Even the smallest bit of activity helps. IF it can be done.
The only experience I have with remission is when we lived in AZ. My ra just *poof* went away and then took about a year for it to *poof* come back. I did very well on meds and went back into a short lived remission once again on meds. From what I have researched about RA it is possible to go into a long lasting remission. There are many of our JRA kids that can go into a very long lasting remission because of the meds that they have out there now.
It could very possibly be a combo of the weight loss and the plaquenil bringing down your numbers. I urge you as I would urge anyone that is thinking about stopping a med all together to consult with their doctor first. The goal for me is remission and although I would love to do it without meds I just don't think it will be possible. I am going to have to stay on my meds in order to stay in remission when I get there. Again. LOL.
[/QUOTE]
That's it -- I'm moving to Arizona!
[QUOTE=lorster]Marian, once a doctor writes RA as a diagnosis, you own it regardless of
whether or not you really have RA. That is why it is so frustrating to not
really know if it is that or something totally different...or reactive arthritis
from a recent strep infection, who really knows and then when I converted to
RF negative, I really had to go back and question the diagnosis. I thought
that once RF positive, always positive. Isn't RF an antibody? And once an
antibody has been formed, isn't it always present? If that is the case, why
was I positive, then negative? Was the first test a false positive? These are
the things I don't quite get. The other thing is...if people on here are
seronegative on all their labs, can a doctor really write down that they have
RA? This diagnosis needs to be absolute in order not to screw up peoples
future. A mis diagnosis can really harm us financially.[/QUOTE]
Hi again,
I can answer a few of these questions from a medical record/insurance perspective. All insurance companies and health care entities use ICD-9 diagnositic code numbers, it is required by HIPAA. One reason is for reimbursement and the other is for statistical reasons. The codes are used worldwide and since they are numbers they are easy to translate. RA has the same code number in Japan as it does in the US.
There are many rules and regs regarding how these codes are used and it can be quite confusing. If a person comes in to the ED and presents clinically with pneumonia, even though the xrays and labs are not conclusive a physician can still diagnose pneumonia. The next patient can come in with pain in the limb, an xray can show no fracture and the physician can still diagnose it a clinical fracture. One of the reasons physicians are paid so much Yes, but history of still means you have to include it on your life insurance
application doesn't it?Yes, it is still on there but if you are clear for time it is less likely to matter. Some companies use 5 or 10 years clear. I see what you mean though. The only way to make it any different would be to have your physician add an addendum that states the previous DX was incorrect and then have them state the new one.
Unfortunately, you have "orphan" records out there all over. Bits and pieces of our medical information has been forwarded to other physicians and facilities. That was why it is important to get an accounting of who has asked for your records and where they have been sent.
Because the medical record is a legal document, information can be added but not taken out.
Hi Lori - congrats on your weight loss. This disease is so bizarre as is your health insurance system in the U.S.
I can never figure out what is going on with my RA. Mr
RF factor never got higher than 30 but I was bedridden for a long timebut my other markers were high - esp. CFC (?)(cant find them at the moment, it certainly affected my by organisational skills. The dr. said I had sero negative RA and xrays to my hands and feet were confirmed by the radiologist to have RA. I have known quite a few people with RA who are slim and I generally have had lack of appetite although have put on a little weight lately due to a bad diet but have never been really overweight even when I like on chocolate biscuits etc.
As you know I think diet has an effect on my RA, believe it was got me out of bed and moving again - was a huge coincidence if not. I am not cured, like I think Pip said it still lurks, I flare, not as often but sometimes quite severely. Fatigue is my worst symptom. I can cope with the pain but the fatigue really gets to me.
I have read RA changes its format after a period of time,
I think I read 10 years and you ache more but dont have the same no. of flares. I go to the dr. tomorrow to get the result of blood tests, my RA has been worse and my diet has been shocking - I have felt the effects and have been aching and tired, also under a lot of stress lately.
My diet will improve, I have a new helper for food preparation who is great and I will start up the veg/nutrition thread shortly.
RA is such an infuriating disease - I have posted before re deformities, swelling and pain - there seems to be no logical pattern. I have deformities in my hands and feet but little swelling lately.
I had a friend who went into remission for 19 years but ended up dying from the consequences of RA at 62 yrs.
Dont know if this information is of any help, I certainly have trouble figuring it out but have a firm belief in diet,
I am worse when my diet is bad so I will support you in your dietary changes. I dont know if it works for everyone - I have a lot of genetic history of RA going back to 1860s. Maybe we are all suffering from different diseases, I certainly think the medical profession has little knowledge of auto immune diseases.
There is a book I have mentioned before called Diet & Arthritis by Dr. Gail Darlington, Rheumatologist at Epsom
General Hospital in the U.K. which is interesting to read.
Amazon will prob. have it.
If you are doing better with your diet then stick with it, the medics will hopefully regard you as not having RA and will do what is required for your insurance. This is such an unpredictible disease and seemingly impossible to make sense of. You are seemingly on the right track and I know I keep saying this, but I will start that thread soon which I hope will be of help to you and others.
Kind wishes,
Mary - so if it's "history" and you go past the 5 or 10 years, are you in the clear with the insurance companies? Does it matter if I'm PRA because, in theory, we have no joint damage (but it can move on to regular RA).
Lori - are you Palindromic RA? The asymetrical nature is a key. Large joints at first. Then the smaller.
Cassandra - I'm seeing a nutritionist on the 9th. I'm looking into allergy testing. Any advice? Did you see that post from Karin about it a little while ago?
Pip
On the weight issue, I weighed 139lbs when i was dx with RA i AM NOW 126 ILBS AND MY RA is worse than before
Marian- is the humira helping you?
The article I read about obesity may very well have been talking aboutLori -
Please go over to www.palindromicrheumatism.org and check them out. Lots of PRA people there. You might find you are 'one of us'.
:-)
Pip
Hi,
Even I never had big flare, just once I had my couple of fingers swollen..and in last year swelling came and go, but not very frequently. I just feel little twinges here and there and that's it.
My RF factor was 16..now after 3 months it's 12.9. ESR was also 2 points elevated than normal.My CCP was 100+.thats what worries me.and it didn't go down from last 3 motnhs Antibiotic.
Pip, I had to change from minocycline to Doxycycline because of yeast infection. Do I need to eat probiotics now?
JustGotIt,
Hey JustGotit!
I was surprised how important the probiotics are - I skipped them for 6 weeks when we were living out of the motel and I noticed a lot more 'aches and pains'. It took over a month to get back to my pre-what-am-I-an-idiot-probiotic level. It's not like you start taking them again and instantly feel better. It has to sort of build up to optimum serum level.
As for the numbers - part of that is when your 'disease becomes unstable' and it's part of the healing process. I know - seems WRONG - but it worked that way for me too. You and I are almost reversed on the blood tests and don't worry - another AP friend of mine is just like you test wise and she's doing fantastic. Anyway - My RF was sky high (706) but my CCP was 0 when I started. Blood tests pulled by a different doc and lab showed me dropping to 395 but going back up to 414 ( or 441?!?!) then dropping back down to 286 where I am now. My CCP went positive to 2.9 and I think that one is now 'in remission' but I need to see a different lab sheet to be sure. Everything else except the RF is normal now. It's the waxing and the waning of the stupid disease process as you give your body ammo to fight the disease. Things other than ABX can effect your lab tests like if you were recently sick (where I went back up) and diet etc.
Did your doc switch you to Doxy because it is a somewhat weaker drug that is usually used in ABX rotation later on when you are well into remission. You could very well still have a yeast infection but because the med is 'weaker' not be as able to tell. We girls are lucky this way - tho it sure doesn't seem like it. LOL
If at all possible, I'd inquire more into going back on Mino to speed the AP along (and as we know AP is NOT as fast as some of the other meds).
And I'd definitely up the probiotics dosage. For me, I'm taking 4 X the RDA on the bottle + 1 diflucan a month trying to get the yeast under control - which is one of the major factors that allowed me to get sick in the first place. When I finally figured out I had forgotten the probiotics I was taking 6 X the RDA trying to get myself back up to speed. As far as I can tell - no research has said anybody ever overdosed on probiotics and so many people post about taking 8 - 12 caps a day (I'd gag) that I think I'm pretty safe.
Hope this helps.
Pip
P.S. What is your doxy dose and schedule?