I've posted a few times to no avial.... I was having hair loss problems last year which my doc thought was autoimmune related so I took tests. My RA factor was 90 (norm= 0-40). Then it hovered around 120, and is now back down to 90. I really had no other symptoms except jaw pain and mild finger pain in my pointer finger. And neck pain--so they thought I had RF (I also had a mildly positive ANA, and now it is back to negative). and perscribed me plaquenil. I never took it becuase I thought I didn't have RA. I took two more RF tests which are pretty constant at 100. And now I am getting some really horrible knee pain. But I still don't think I have RF because doesn't it start in the hands? Is it possible to have a constant high RF and not have RA? Am I just in denial? This week my jaw was hurting sooooo bad, but my hands feel really fine. Does RA cause hairloss? Can it cause hairloss?

Hi Kathie,

I was diagnosed with RA in January 2002, with a postive RF factor.

My RA started several years earlier than 2002 in my feet. I just thought I was wearing "cheap" shoes; bought more expensive ones...no help. My toes also had a burning sensation, although not constant. Being that I had an awful fear of doctors (have since conquered that fear), and being stubborn, I put up with the pain until it got to the point that I could not even bear the thought of putting on shoes in the morning. I also noticed that my fingers in the morning were starting to swell, and making a fist was almost impossible. The pain in my wrist, well -- I put that off to too much typing, household chores, etc.

And then one morning I woke up and couldn't move. I knew then I needed medical intervention. After blood tests, x-rays, and several follow-up appointments, RA was the diagnosis. I had never even heard of RA until then (yes, I thought arthritis was an "old" people's disease -- I was 41 at the time).

RA does not have to start in the hands. Even today, with the help of a great rheumatologist and meds, I'm 90% back to "normal". However, there are still days when my wrists may hurt; the next day, my knees; the following, my feet -- or all of them at the same time. That is what can be so discouraging about having RA, you don't know from one day to the next (sometimes even one hour from the next), what may start "flaring".

As far as hair loss, I have to say that my hair has definately taken on a different texture. I also know from experience, that nerves and worrying can cause hair loss (trust me on that one!).

Has your doctor recommended that you see a rheumatologist? I would definately get a referral to see one (sometimes it can take months to get into one). I have to travel about an hour and a half to mine, but she is well worth the extra time of travel.

I will check this board to see if you have any questions, Kathie. Hang in there!

Karen

Yeah I am working with an RA, but haven't had time to follow up. The thing is my pain is not symmetrical. It affects my left side much more. This past month my knee has been unbeleivable. My doc said for sure arthritis, and I haven't had time to get x-rays. My RF factor keeps coming back consistently high. They wanted me on Plaquenil, but as of now have not gone on it. Still not convinced I have it. I don't see the nodules either.

Kathie,

I know it can be nerve wracking to start meds, but you should try the plaquenil. If you don't try, how will you know if your knee pain will subside or not? I originally started on plaquenil -- and NOT to scare you, but had to stop after a few weeks due to an allergic reaction (I'm also highly allergic/sensitive to the new TNF drugs).

I've never had any nodules either. I believe I read somewhere (and believe me, I've done hours of research on RA), only about 25% of RF positive people get them.

I was in such denial too, Kathie. (Before I forget, my pain is mostly in my left hand/wrist/fingers -- right knee/feet.)

Karen

Kathie-
I too have RA, being recently diagnosed after living with lupus also for the last 8 years. I don't have any hair loss, and no nodules. I do experience joint pain, and some are one sided (ie: my right elbow and right knee), but some hurt on both sides. My hands only recently started bothering me. I have taken Plaquenil for the last year and a half, and have noticed much improvement in symptoms (mainly fatigue). My joint pain has also diminished. It's been my understanding that having a positive RA factor with a positive ANA is pretty definitive of RA. Both can fluctuate positive/negative. Plaquenil is a very safe drug- I'm having to talk myself into starting methotrexate. But if the drugs stop joint damage, or slow it, it's worth it. I don't want to end up crippled in ten years. Good luck with whatever you decide- you'll find a lot of support here.
Pambyboo

Thanks. I haven't had really bad joint pain, but I did these past two weeks. My RF is about triple the normal amount, but the rest of my blood tests and ANA came normal (though it was mildly high last year). However, I felt horrible. Now I feel ok with joint pain (none of my pain has been symmetrical), but I feel really fatigued. I don't feel sad or anything so I don't think this is deppression, I just feel really sleepy all the time, and find myself sleeping 15 hours when I can (mini coma!). Could this be the beginning symptoms. My rheum wanted me on Plaquenil...

Fatigue is a common symptom of RA. My RF was 330 and my joint pain was not symetrical either. Not everyone presents in the same manner. If you are still in need of more confirmation of an RA diagnosis, ask your doctor to run a blood test called Anti-CCP. It is a newer test and while it isn't as sensitive as the RF, it is "highly" specific for RA. My doctor ran it for me and he said because of the positive results, 380, he was sure I had RA.

The Plaquenil is a fairly safe drug. If I were you, I'd go ahead and start it because it will take several months before it takes effect. In the meantime, you could have the Anti-CCP. You could always stop the drug if you find that you don't have RA.

Hope this helps.

Hi Kathy,

I have been dealing with RA for the past 2 years. I feel as if I've tried everything. I am currently trying a mix of humira and methotrexate. I was told that methotrexate can deplete the body of folic acid, which can cause hair loss. To curb that, I am taking a supplement along with the methotrexate. I have not personally noticed any loss nor a texture change.

Anyone on Humira? If so, what are your thoughts? Its seems to work for me 90% (along w/methotrexate) but I think that everything is drying out my skin and making it very sensitive to everything.

Anyone on Remicaid?? I am looking for alternative treatments. My doctor wants me to use remicaid, but I fear all of the side effects of long-term use.

Stay Strong.
Kate

Tests, positive or negitive mean little when talking RA. My mother tested positive for RF till the day she died but had only one minor, little flare that affected her hands, both-she was symmetrical, then promptly went into remission, without any treatment, and stayed that way for close to twenty years. It was smoking that killed her but that is beside the point.

I, on the other hand had a major flare fifteen years ago with lots of damage to both hands and wrists and I have never tested positive for RF. I was on Plaquenil for over a year and it did nothing. I did manage to get pregnant, that was my goal, and that put me into remission (something like 80% of women will go into remission while pregnant and 50% will stay in it after delievery). I lucked out and stayed in remission for well over ten years after my son was born. I still do not test positive for RF nor the newer CCP IgG. My CCP IgG was 2. I do come up high on platelets and the sensitive CRP test but not the regular not so sensitive CRP. And sometimes my sed rate will be high but not all the time.

Since Plaquenil did nothing for me I was put on MTX last year when it was decided I was finally coming out of remission. My hair fell out and I threw up for eight months before I quit taking it but it wasn't working either. Now I am on Enbrel and it does work when I can take it. Unfortunately I have go off it every time I get a sinus infection which will apparently be once a month.

So remember, every person is different. Some will test positive, some never will. Some will be symmetrical, some will be one sided. If your doc thinks you have RA it is probably best to just except it and work towards getting better. Do research and decide what is best for you. Doctors are handy but they are not the be all and end all. And some of them are just plain idiots. Cold blooded, cold hearted idiots. Question authority, it is good for the soul. The internet is great, I use to have to go to the medical library to look up things now I just go to the search engine.

Take care, Bobbie

Hi Kathie,

I was diagnosed with RA in January 2002, with a postive RF factor.

My RA started several years earlier than 2002 in my feet. I just thought I was wearing "cheap" shoes; bought more expensive ones...no help. My toes also had a burning sensation, although not constant. Being that I had an awful fear of doctors (have since conquered that fear), and being stubborn, I put up with the pain until it got to the point that I could not even bear the thought of putting on shoes in the morning. I also noticed that my fingers in the morning were starting to swell, and making a fist was almost impossible. The pain in my wrist, well -- I put that off to too much typing, household chores, etc.

And then one morning I woke up and couldn't move. I knew then I needed medical intervention. After blood tests, x-rays, and several follow-up appointments, RA was the diagnosis. I had never even heard of RA until then (yes, I thought arthritis was an "old" people's disease -- I was 41 at the time).

RA does not have to start in the hands. Even today, with the help of a great rheumatologist and meds, I'm 90% back to "normal". However, there are still days when my wrists may hurt; the next day, my knees; the following, my feet -- or all of them at the same time. That is what can be so discouraging about having RA, you don't know from one day to the next (sometimes even one hour from the next), what may start "flaring".

As far as hair loss, I have to say that my hair has definately taken on a different texture. I also know from experience, that nerves and worrying can cause hair loss (trust me on that one!).

Has your doctor recommended that you see a rheumatologist? I would definately get a referral to see one (sometimes it can take months to get into one). I have to travel about an hour and a half to mine, but she is well worth the extra time of travel.

I will check this board to see if you have any questions, Kathie. Hang in there!

Karen

What happened to you sounds very similar how my symptoms started. I thought it was the two herniated disks in my lower back that was doing it, but then my fingers and wrists started going numb, then swelling. Got up one morning and could just barely hobble to get to the bathroom then getting on and up from the toilet was like torture. What I am wondering, do you still work? I had to quit my job after being there for twenty years. I just could not do it. Thanks, Shelley T.

Hi Shelley,

I get pain in my lower back too. Another thing I put off -- sleeping wrong, you know (LOL).

Yes, I am still able to work. I work in an office environment so fortunately, I don't have alot of standing or walking. If that were the case, I think I would have had to quit at the beginning of my RA. I have FMLA and on really, really bad days, I use that (I think I've used it maybe a total of 2 days in the past 3 years).

I have a high pain tolerance, thank goodness. Plus my family is not very supportive so I try not to complain or "be sick" -- cause it is easier for me to go to work then put up with the rolling eyes.

Karen