New Member ....Newly Diagnosed | Arthritis Information

Hello everyone, my name is Gina

Recently i was diagnosed with RA...i have had a positive RA Factor for at least 4 years that i know of, but, finally decided to get it checked out by a Rheumatologist...He did alot of bloodwork and again the RA factor was high at 25...i had x rays done of my hands , neck and pelvic bones, and, thankfully they showed no joint damage yet!!!!

I get alot of joint pains and stiffness especially my hips, neck, hands and elbows, which is more severe in damp weather...sometimes the stiffness is so bad in the middle of the night that i can hardly straighten out my knees and elbows while lying in bed

We discussed medication, but, because of fear of side effects, i am reluctant....my rheumatologist is trying me out on Prednisone, which i am to take whenever i feel bad over the next 4 months, at which point we will do more x rays also....then he will decide if i need to go on something like MTX or Plaquenil...i cannot take Enbrel or Humira because my sister, who also has RA, suffers from Multiple Sclerosis and he said because of that i can not go on any of the injectables

My question is, is there such a thing as "mild" RA???? The strange thing is i have never had an elevated Sed Rate or CRP and my joints never get swollen or red...but there are some days i am so achey and fatigued i can barely get out of bed

Well, I look forward to talkiing with you all about RA..hopefully i can get some good advice

Gina

Welcome Gina - there are categories of RA, including mild. Someone posted the definition once but I can't remember all the criteria. Maybe someone else can find it and will post it for you. The tests while helpful to diagnose aren't always helpful, it's sometimes the symptoms that tell a better story. Both RA and CCP were positive for me (normal CRP) but quite a few on the board are negative on tests. I didn't take predisone and started with mtx right away so not sure if a trial period of prednisone is a common treatment plan.

Welcome again - but sorry you have to be here.

Cathy

Welcome to the board Gina. Seems odd that you had an elevated RA factor for 4 years and are just now seeing a RD, you are fortunate that you don't have any damage, but that may indicate a less aggressive disease. I have been on many different RA of medication over the years and haven't had any adverse reactions, other than they didn't work. The drug companies have to list all the side effects, but that doesn't mean you'll get them, and if you do, you can always stop and try something else. Do searches on this site and you'll come up with dozens of posts on the good and bad about all the RA medications on the market. Being informed will be your best defense, I hope you have a RD you like and trust.Gina,

Welcome! At diagnosis, I had positive RF (330) and Anti-CCP (238) as well as inflammatory markers of CRP (13) and Sed Rate (32). However, I have had flares where my inflammatory markers were completely normal.

I understand your fear of meds. You might want to give Plaquenil a try. It's one of the safer drugs. It definitely has less side effects than the prednisone. Plaquenil was my first drug, and as you can see in my signature line, I'm still taking. When I was first diagnosed, my RA was classified as mild too.

Hope you feel better soon.

Glad you found this board - we are one "large family." Won't offer any words of advice because though we deal with Arthur and His Wrecking Crew and related complications we are each unique in how we respond to any given treatment.

Read the posts to get an idea as to how effective or ineffective meds. have been and check out the medical websites for more info. Also, many posts will contain addressess for many terrific websites. *Gentle Hugs*
Hi. I'm Nickie. I too am 'brand new' to this forum. I am a 61 yr. old female. Fourteen years ago I felt pain in my wrist joint of my right hand. My GP requested X-Rays and blood work. My RF was positive, but the Rheumy that I subsequently visited dismissed my elevated factor as a 'false positive' because I had no other symptoms. Slowly..over time, there have been additional symptoms. More aches than PAIN. My neck, C5-6, and lower back, L4-L5, show DJD and there's OA in the first metacarpal joint of both hands. April 2008, I complained to my new GP about severe muscle aches in my legs, shoulders, etc. This got the ball rolling. He ordered blood work and they discovered that my RF was sitting at 340. He immediately referred me to...THE SAME rheumy I saw 14 yrs earlier. The appointment came a month later and this time I was given a whole blood assay. In a month my RF jumped to 640! EVERYTHING else was negative!! He put me on Plaquenil. I stayed on it for 5 1/2 months, and my factor came back down to 287. A couple of weeks later, it went back up to 320. It was at this point that I asked to be put on a tetracycline antibiotic. I had read a lot about good results with mild RA. Both the GP and the Rheumatologist agreed that was worth a try. Doxycycline for a month..no change. I asked to be put on minocycline--100mg twice a day. After 5 weeks, more blood work. RF....21.5! Unfortunately, I went on vacation before I got these results, and decided on my own to stop the mino while away. The side effects were really getting to me. After 3 weeks off mino, RF rebounded to 284. I am BACK on mino--100mg. once a day and seem to tolerate that much better. Seeing a NEW rheumy on May 11. After this lengthy, disjointed entry, I basically wondered if anybody here is on antibiotic therapy for their autoimmune. btw..Thanks for listening. Nickster2009-04-26 15:13:07Welcome Gina and Nick.

Gina, Before I was DX'd I'd ache and suffer increasing amounts of fatigue but I put that down to getting to old for the Carpentry trade I was working in.

By the sounds of things you might be lucky and have a mild version of this disease.
What I find strange is that you have been put on a trial of Pred.
To my knowledge and in my case, this drug is usually used at the beginning to help relieve more severe symptoms while waiting to get to see a specialist.
Do your research on all the different treatments.

Nick, Yes there are members who follow the antibiotic therapy and if it works for you then that is good.. Thank-you so much Stephen for responding to my post. I have not yet been Dx'd, but with RF numbers like those I described, it seems pretty obvious that it's RA. My readings have waxed and waned on the antibiotics, but I can't say that this treatment choice has in any way decreased my achy muscles, fatigue, short term memory loss and general feeling of malaise. I am so scared because I am entering an unknown territory. Everything I see about high RF points to SEVERE disease. I don't want to feel like I'm just sitting and waiting for the axe to fall so I continue to push. I take Yoga 4 times a week, walk 40 min. at least 5 times a week, take several supplements twice a day and try to ignore my fears. I am unable to take ANY anti-inflammatory medication because of a sensitive stomach. Some days are better than others. I'm BAD in cold, rainy weather, or when there's a sudden change. I still don't have redness or inflammation, but my legs don't want to move after I've been sitting for a while. Are there any members out there that are on the MP?? Once again...thanks for listening. Nickie Nickster2009-04-27 18:28:36Hi, just a quick reply as I am unwell today, my son was put on pred as his symptoms did not show the inflammatory process in his blood, but that doesn't mean he hasn't got it,(it is known as sero-negative arthritis) the RD said if he responded then he knew it was inflammatory and would then start MTX, so maybe your DR is double checking before starting you on a highly toxic DMARD. Pred in the short term is fine, and Stephen is right, it is usually reserved for bad flare-ups to get a quick response until the Disease modifying drugs kick in. All the best, and keep a journal of symptoms and treatments, they are invaluable. Regards Janie.Hello Nickie and Gina!

Two newbies... two very different stories....

Gina.. what battles you have.. dealing w/ two major Autoimmune diseases.... I wish you the best! I have no experience w/ the MS part but hope you find relief from both....

Nickie..... you're unDX'ed but on AP? That is a little confusing. Please explain.

Sorry your meds aren't really working but hope that you find what you need soon.

Best to you both!!

Gina and Nickie... I too welcome you here but sadly, wishing you were not having your difficulties.

My RA history is that after a bad year at the beginning, then 1-2years of improvement thanks to Plaquenil, then another very bad year needing help dressing etc, I finally stabilized thanks to Methotrexate to the level I'm at now. Although less than before, I still have pain, stiffness, and occasionally mild swelling in fingers but also The Great Fatigue that feels like the flu every afternoon. The only positive bloodwork I have is RF. I get it checked every year as well as all other reasons for it ie endocarditis, hepatitis, etc. Eversince the start of having RA, 7 years ago, my RF has been up and down in the range of 1,220-1,648 ! My Rdr cannot find any other reason for it and I do have normal RA complaints, just no deformities or other positive labwork, probably due to being started on DMARD quickly. Since a child, I have never been a typical presentation of disease, so that's not new to me or my family.

I only discovered this board about 2months ago so have been learning a lot about how RA can be experienced and presented in such a variety of ways. There are basic common symptoms, but as you can see by my story and everyone else's, there are variances of joint problems, labwork results, other symptoms. Many of us have other diseases as well, I myself also have an autoimmune bowel disease that has nothing to do with RA but sure adds to my misery. You will see that some RA symptoms are constant and others flare-up temporarily for days, weeks, months. I found it comforting to hear about all these changes being experienced by the others here. I no longer feel so alone and confused (well, I'm not so sure about that part).

Good luck to both of you and ask anything you want here. We won't always know the answer, but somebody will know where to look for it.

CathyMarie

This forum is truly a gift. Although I have read "The New Arthritis Breakthrough" by Henry Scammell, and have done some recent research online, because of the horrible rapport I have with my current RDr., I had no idea about how other REAL people suffer...no...COPE with RA and how variable the symptoms and lab numbers can be. So this is truly terrific for me.

To answer you "babs10", both the work of Dr. Thomas McPherson Brown and Dr. Trevor Marshall suggested to me that the antibiotic --minocycline--might be worth a try in warding off the pattern of worsening symptoms. If you are interested, I have links that describe antibiotic therapy and/or the MP.

Cathy Marie. I can't thank you enough for your post. I honestly relate to your story in so many ways. The atypical RF numbers without RA presentation, the Great Fatigue, (loved that descriptor), and the lack of deformity and inflammation is my story too.
There is consensus among many that minocycline is a DMARD with very few side effects. Maybe I didn't give plaquenil a chance, but when my hair started thinning after only a couple of months, and I discovered that antibiotic treatment was out there, I decided to give it a try. So far, my evaluation is mixed. I don't seem to be getting better, and in some ways, maybe even worse, but I'm not giving up on it yet. I have an appt. on May 11 with a different, (and hopefully nicer), RDr. Perhaps she'll have different ideas as to how to proceed.
I do have a couple of questions: 1) Does methotrexate typically lower RF readings? 2) How often are your injections?, and why injections over capsules?

Finally, I totally agree about the comfort of hearing the cards that others are dealt that both mimic and differ from yours.

I NEVER in a million years thought that this would happen to me. I have always been slim, energetic, nutrition conscious, and full of "joi de vivre". There are times lately that I sink into deep depression and melancholy. When I feel like that now, I will visit this site. :-)

Take care everyone. Nickie

Nickster2009-04-29 16:54:26Welcome ladies!

Hi Nickie,

In reading your post I see you are interested in AP therapy - just thought I would let you know there is another site you may be interested in 'The Roadback Foundation' dedicated to antibiotic therapy & there is a forum there as well ... http://www.rbfbb.org/ may I suggest you head on over there and have a read - there is an abundance of literature on AP as well as knowledgeable compassionate people on the forum.

Welcome to the board, Gina & Nickie!

I hope to get to know each of you a little better and see many more posts from you!