Just Dx with RA

 I am new to this forum.  I have been under the Fibromyalgia forum under healingwell and found it quite helpful as I was diagnosed in May 2005 with it.  I was just told Friday after a series of tests and two MRI's that I am in the early stages of RA. So I am very interested in getting advice and sharing my health issues with others regarding the RA. 

I have only spoke with my Rheumatolgoist over the phone and have my next appointment scheduled for the beginning of December to discuss his plan.  He mentioned steroid injections and a new drug to help slow the RA down.

My first question to him is whether he still thinks I have Fibro. All my blood work for RA came back negative and yet the MRI shows joint problems.  I just had a complete body bone scan done in May and no signs of arthritis showed up. One little spot by my foot/ankle may have some inflammation was all that test showed.

I had been completely healthy until about 1 1/2 yrs ago when I went through a hard divorce. I injured a toe and and spread to complete foot pain to calve pain-tendonitis.  I had been through 2 rounds of physical therapy, a foot cast, a brace on each foot, to a boot on each foot, to computer made orthodics( I can only wear tennis shoes). I then began getting fatigue, insomnia, stiffness around the neck, shoulder,elbow, wrists, hands, muscle pain in different areas, to not being able to sleep at all, anxiety, depression and now fingers are deforming. Also skin flare on scalp. My rheumatologist has been super!  He really has listened to me and taken me seriously and acted quickly on everything! It has been a long haul!! Lots of confusion, unanswered questions, lots of blood work, tests, $$$$$ because of lack of insurance, etc.  I now feel better knowing I have more of an explanation for my health, but am wondering if the Fibro would still exist?  I have done some research on RA and am finding alot of the symptoms from Fibro match RA.  This has got to be very challenging for RA's! Especially when blood work comes back normal. I think it says so much when you have a Rheumy that will really listen to you and not just think it's all in your head!

Please, anyone that has any comments or similarities to mine, I would appreciate comments.

Thanks,

Sweetpea 

I wish you good luck @ your rheummy appointment.  Along with RA and other autoimmune disorders and illnesses, the fibro will/can still exist.  You may find, that when your arthritis flares, the fibro may get worse.

The frustrating thing with rheumatics, is that it is very much an art!  People will present with ALL OF THE SYMPTOMS physically, yet bloodwork comes up negative.  Some may have all the positive bloodworks and yet there physical symptoms are not that bad!  And some are a happy medium...well, who the heck is a HAPPY arthritic anywhoo??  LOL.

The great thing about it is, docs are very eager to  treat RA with meds like Enbrel, Humira, Remicade early so that the disease lessens its chances of becoming too bad!  Which is wonderful. The injections are simple and people adjust to the freakiness of sticking themselves pretty quick!  We have shootin' up parties here when one of us goes on an injectable for the first time!     LOL.  Early treatment and findings is key.

I have been on both Enbrel and Humira and also all of the Cox 2's/NSAIDs  and yes...the dreaded   PREDNISONE .

Steroids are life savers in acute flares.  The steroid injections are helpful to many people.  I've had them into the knee joints and shoulders.  Painful yes, but short and worth it.  Just be sure to keep off your legs a while, they'll be a little sore.  The intramuscular shots are great too.

You may already know that with dealing with arthritis, it is a trial and error practice sometimes.  Sometimes even doctors do not know what to do sometimes!  Patience is a must, especially since you have a lot of symptoms going on.

Look forward to talking with you Sweetpea!

Also, I want to add that there are many theories that are pretty much proven that in woman especially, going through divorce, tragedy and pregnancy can trigger autoimmune diseases such as RA and others.

Write back soon to let us know how you're doing!

Sincerely,

Erin 

I was on Prednisone for a while also, however, it was for Grave's Disease (Hyperthyroidism)... I was on extremely high doses of it for 6 months and I am a lucky recipient of the weight gain, moon face, buffalo hump and now it seems kidney problems... I haven't been on it since, and I hope I do not have to go back on it...

Anyways - you said that you have scalp lesions, as well as lesions on your arms and fingers... To me, it sounds like you have Psoriasis.. and if you do, then you probably have Psoriatic Arthritis... For your scalp, I recommend getting a tar shampoo.  I have found that Pentrax Coal Tar Shampoo works wonders.  It doesn't smell too good, but for the psoriasis, it knocks it out... Also, if you can get temovate cream, that may help with the lesions elsewhere on your body or along your hairline... I have psoriasis on my hairline and I put the temovate cream on it, then within a couple of days, it's gone... You may have to go through your doctor to get it since it is a steriodal ointment.

With PA, for a rheumy to diagnose it, you basically have to have all the signs of regular arthritis, i.e. inflammed joints, pain, swelling, limited mobility but show up negative on all tests.  All my bloodwork was normal and have had MRIs as well as bonescans... So basically since it doesn't show up as anything else, by process of elimination, you have PA... A big indicator is if you have psoriasis.  I went to a podiatrist for the pain in my toes and feet and he was clueless as to what my problems were until he realized I has psoriasis.. He then sent me to a rheumy and within 5 minutes the rheumy confirmed my suspicions...

PA normally shows up in fingers, toes, wrists, ankles and your spine... Also, whatever digits have the arthritis in the will have a "sausage like" appearance... This is called dactylitis... My toes used to be so fat and swollen I had to go up 2 sizes in shoes!

I got this off of the arthritis website:

Psoriatic arthritis is a condition that causes swelling and pain in and around the joints. It can affect a number of joints including the fingers, wrists, toes, knees, ankles, elbows and shoulder joints, the spine and joints in the lower back (called sacroiliac joints). Psoriatic arthritis also affects tissues surrounding the joints including tendons and ligaments. It may cause a swelling of the whole digit called “sausage” finger or toe. There is also skin inflammation, particularly on the elbows, knees and scalp. Psoriatic arthritis is linked to psoriasis, a disorder causing areas of the skin to become inflamed and be covered with silvery or grey scales.

I was on steriod injections for a while, but they didn't work for me.  I have also been on Mobic, Feldene and Voltaren and those didn't work either... So now I am on Enbrel and I am doing so much better.

I don't know if I have helped you at all, if you have any more questions, please let me know and I'll try and answer them the best you can.  You are going to a rheumy in December right?  Let us know what they say!  I am curious as to what the diagnosis may be.  It is possible that you can have RA as well as PA... I wish you the best of luck, and like I said, if you need more info, I am always here.. best wishes to you - Duck

The more options the better, and the more info to discuss with the doc the better too.

I wish you the best and I hope you find the right meds, a great doc, and are able to avoid all the hardships that can come along with going through this.

Never give up.  Fight for your body and your health.

When is your appointment?

Take care

Erin

My heart is swelled with confidence for you!  Stick with this doc...he sounds like one in a million, believe me...they are hard to find.

Well well well...which med to choose?  Hmmmm.  Ya know, the rheumatologist I consulted with @ the Bone and Joint Hospital in NYC said the same thing to me!  I basically got to choose. 

Enbrel and Humira are very very similar, working the same way, doing the same things.  Although, Enbrel is approved for treating Ankylosing Spondylitis and is used more often in psoriatic arthritis.  Other than that.... both drugs act in the same matter to help RA.

I've been on both...so maybe I can help.

• the Enbrel 25mg twice weekly injections were the best (feeling I mean) easy to inject, easy to reconstitute.  Down side, ya gotta poke yourself 2 times and assemble the syringes.
• Enbrel 50mg once weekly.  Those suckers STING a wee bit...but if it's working it is worth it.  They are already prefilled so that's a bonus!
• Humira 40mg, what I am on now.  Typically every 14 days.  They are OK in my book, I inject into the abdomen with the Humira.  Stings a little but not as much as the Enbrel 50's.  I'm comfortable with the Humira the best out of all of them.  On it every 7 days (I need stronger doses than the normal every 2 weeks)

Self injecting is scary sure!  Especially if you are not accostomed to needles.  I gave hundreds of shots before I had to do myself...and it was still weird!  But you get so confident after you do it yourself!  It gets easier.  The doc will most likely have your first shot done in the office.   But it's totally normal to feel freaked out by it!  Don't worry...we'll have a shootin' up party here for you the day you do your first!  LOL

The adjunct med?  Maybe he has in mind methotrexate or Arthrotec...but he'll figure that out, there are so many.  You'll read in the pamphlet that these drugs work well when combined with methotrexate....but that does not mean you will have to absolutely go on it.

The doc appt's will be often.  When you need them and typically every one to 3 months.  Bloodwork maybe often too depending.  Maybe every one to 3 months.  Humira has an assistance program that provides you with the medication if you cannot afford it.  I am on this program!  I receive Humira at no cost.  I do believe Enbrel has one as well, but I am not sure.

Both drugs have telephone R.N.'s to answer questions anytime.

I think you're doing great!  Also, whatever med you choose, if you are not satisfied after say a year or 6 months...you can try the other one.

Stay positive....no pressure!....I feel you're in great hands! Your doc sounds great.

Sincerely,

Erin  

SweetPea, sorry for jumping in so late - it sounds like you have a good doctor. Good luck with treatments. My brother in law feels Humira is the way to go - that it is the newer improved TNF blocker to Enbrel's ancient ways...or something like that. But, what it comes down to is that everyone's body reacts differently  and one may work where another one fails for YOU.

Those tests are important to ensure you have no infections going on when you start the medication.

Prednisone, by the way, put me in such a fog I went a bit crazy - literally. Not a fun drug. It also kicked off severe depression and weight gain for me.

Often, stress - such as the divorce you mentioned - seems to trigger autoimmune issues. It is a vicious cirle, that is for sure. Stress can cause depression and the depression can cause arthritis-like symtoms OR cause flares in someone with arthritis. Then, the arthritis pain causes depression and the depression can caus stress. It seems you just can't win at times. But, I think you are one the right track with a helpful (yeah! He sounds like a keeper!) doctor. Good luck.

**

Oreo, you are right...I was so freaked out by the idea of self injecting into my abdomen; but when I went on Humira that was the area I chose...and it was great.  I shoulda listened to ya way back when .  LOL

Giving patients injections is a peice of cake...but when it comes to yourself, the best of the best probably get the jitters the first time.

It's a very good area to inject, I agree.