Rheumatoid Arthritis

Hello everybody,
I've been recently diagnosed with Rheumatoid Arthritis. R hand/wrist area "drained" in Emergency Room on Monday.

Anybody else have RA? How do you cope? What has worked best for you? 

I've got so much swelling in my knees, back, wrists, and ankles that it's very painful to move. However, when I get a pain med on board in the morning, I'm able to be a "little" more functional.

When will this end? Anybody else have a "flare up" of RA or something similar after DS? 

My RA Specialist (I just met him on Wednesday morning) has be on Prednisone (yes, I've already GAINED SIX POUNDS) and Percocet.

I'd like to find a pain med that doesn't make me lose so much of my ability to concentrate, and a better/more effective RA drug, cuz the swelling in all joints is still causing so much pain.

Any input is very much appreciated.

Thank you all,
anne

P.S. My RA Doc says he has seen several folks who've had WLS, and he wonders if an overgrowth of bacteria in the gut is causing the autoimmune response in us. Your thoughts? 

RA sucks.  I have it too.

You need a biologic medicine.

I never took a steroid.  My Dr. put me on Methotrexate and Remicade infusions.  In fact, today was my day to have one.

There is no need to suffer or bloat up from meds.  

When mine struck it got so bad my Dr. told me he had never seen numbers on a blood test as bad as mine and I was using a walker and having my son push me in my office chair to the can.  Also paid a housekeeper to clean my home.  

If your insurance will pay for it, insist on Remicade or something like Enbrel.  I feel for you and wish you the best.

Forgive my ignorance - what is a "biologic" medicine? 

I was so bad for a few days there that I could not use my hands, whi*****ludes doing anything with them - from washing dishes to you-know-what that we must do in the bathroom. Terrible days. But my primary doctor misdiagnosed it, and when he made a diagnosis of it on the 22nd, he said it was "Infectious Arthritis - viral and migrating." Said Advil should be able to take care of the pain.

I was icing and heat-packing my hands, knee, and back all Thanksgiving weekend, and trying to bear through my birthday "celebration" on Sunday before finally seeing my primary again on Monday. However, his only opening was at 7pm, and I just couldn't wait that long...so I went to Urgent Care, and they directed me IMMEDIATELY to the ER. I had no idea I was in an Emergency situation, but they said if I didn't start on an RA medicine asap, my bones and joints would get WORSE.

They've gotten worse anyways. The bone pain in my back moved from the right side into the left, and higher up. The knee pain used to be only on the left, now it's in both, leading me to "not trust them" with the amount of weight I have on my body.

I just want this to go away. When will it be gone? 

The first sign of it was November 8th, as a bump on my left hand/wrist. My doctor said it was just a soft-tissue injury, and sent me away with "watch for it to turn into a big bruise." It never did. Instead, it "migrated" into my right wrist, knee, ankles, back, everywhere.

I don't know exactly what this is, but it doesn't seem like the doctor's are able to define it well. My RF bloodcount is low, but my white blood cells are high.

Sorry to go on and on, but thank you for listening, and thank you very much for your input on what the difference between "biologic" medicine for RA is (vs what I've got? steroids and opiates?).

:)
anne

this is from the mayo clinic
Tests and diagnosis

In addition to the physical exam, your doctor might order imaging and laboratory tests to help determine the cause of your signs and symptoms. Rheumatoid arthritis can be difficult to diagnose in its early stages because its early signs and symptoms mimic those of many other diseases. And no one test or physical finding confirms the diagnosis.

Blood tests
People with rheumatoid arthritis tend to have an elevated erythrocyte sedimentation rate (ESR, or sed rate), which indicates the presence of an inflammatory process in the body. Other common blood tests look for rheumatoid factor and anti-cyclic citrullinated peptide (anti-CCP) antibodies.

You state your RF is low and your white counts are very high, may not be RA at all, there are infectious arthritis (yes viral that mimic the clinical disease) but never get the RF factor or the more definative anti-CCP. If I was you I would want to have a sed rate, RF and the anti-CCP done again and a CBC to see where you white blood cell count is going. This is critical information as long-term biologicals, prednisone and other medications have very very serious side effects.


I speak from experience I caught slap-face from my kids and developed infectious arthritis. In adults we do not get the rash. Your symptoms sound like mine both small and large joints ( RA- usually small joints only). I had a high sed rate, elevated cbc, RF low but other antibodies elevated.
Parvovirus B19: The incubation period is 7-18 days, and the state of viremia lasts 5-6 days.

• CBC count (to assess hemoglobin, neutrophils, lymphocytes)
• High immunoglobulin M antibody levels 4-6 days after the initial viremia
• Viral B19 DNA by polymerase chain reaction
• Immunoglobulin G antibody titer (of little diagnostic significance)
• Low-to-moderate titer values for rheumatoid factor, anti-DNA, antinuclear, and anticardiolipin antibodies possible in some patient

Regardless of what is causing it the immediate thing is too halt the inflammation and destruction of joints. Glad you have a rheumatogist on board, did they see you in the ER or do you have an appointment to see one??

Hi Amanda,
Great to see your familiar and beautiful face again.

Thanks for your response.

I truly believe my primary doctor evaluated this correctly, but I could be wrong...inthat he said it is "viral migratory infectious arthritis." It does sound like just what you had - though nobody in the medical world has given me the incubation or states of viremia parameters. Thank you very much for that, and for all of the information (which I'll be sharing with my R Specialist, as he's "winging it" with me, and it's almost as if he's willing to try whatever I (yes, you read that right)...willing to try whatever I suggest!). Oh hell, I'm in for a bumpy ride, methinks, since I have no idea what this infection came from, or how to treat it.

I've read up on Infectious Arthritis. A bump on my left hand, on the 8th, and then appears on the 22nd. The 19th and 20th, barely able to hold myself up, my bones felt like they were melting inside me, unable to hold me up. Very frightening feeling when trying to hobble to the bathroom that is not really that far away!

Chills, low grade fever, and those are intermittent. Is this just a case of menopause? Are those symptoms part of menopause? What about sweating at night? 

What about the pain in all of my joints, and my joints feeling so unstable? I wonder what that's all about.

Prednisone might cause weight gain. Nobody wants that, but I cannot handle the swelling in every join in my body anymore. I feel like I should be "drained" of all my extra fluids, so that my joints have room to breathe.

If we don't know if this is RA, why are we treating it as if it were RA? Is there any other way to treat it? 

My hair has been falling out for a couple of months, pretty heavily. I've almost lost that pretty little widow's peak that used to be at the front of my face. :-(

I saw the Rheumatologist one full day after my ER appointment, on the 30th. I saw him again today.

We changed the 20mg prednisone amount to twice a day (thinking I'm not getting the benefits of the drug due to my malabsorption rate cuz of wls).

After one week of taking prednisone twice a week, Dr has told me to add methotrexate once a day (plus folic acid). I'm not sure what I'm doing here, but I'm in such great pain, and all I wish to do is to get back my typing hands, and to be able to wipe my butt in the morning after my DS bm (which we all know can be an endeavor!).

Oy vay. Thank you so much for listening, Amanda. I'm going to print out your response to me, and take it with me for the R Spec.

Nothing indicitive of RA yet. But I'm being treated "as if I've got it." What is up with that? Shouldn't I be being screened for other stuff? Perhaps cancer? 

Absolutely no problem I am glad to provide any help I can.
The reason to treat it aggressively at first with the  prednisone/ methotrexate is to nip the joint destruction and to try and stop the inflammation in the bud.

Mine was diagnoses 19 years ago ( in medicine this equates to the dinosaur period). They did a viral titer for parvovirus ( we were pretty sure as all three kids had gone through it before me with the classis disease presentation).

The good new is the infectious arthritis if viral will usually  improve over a shorter period of time where RA is with you forever.

Unfortunately some people with infectious arthritis trigger whatever  their autoimmune arthritis would of been. For me my viral triggered a non-specific autoimmune arthritis ( RF -, Lupus ANA-, but multiple anti-phospholipids +, and multi-system autoimmune symptoms (sun sensitivity, facial rash, hashimoto's thyroiditis). My rheumatologist said in a serious voice " I will not label you Lupus until another organ system fails- your kidneys, your heart, your lungs or your GI system." After my shock at his bluntness I was relieved that I knew what the worst would be.

I had the DS after all this, and it was the only surgery I would of had I knew I needed to be able to take non-steroidals and any other medications that I would need to fight this autoimmune disease.  For the most part I do really well a few flare-ups that I am able to control with oral medications. I keep out of the sun, wear sunscreen faithfully. I do water exercise 5 days a week as it is the gentlest form of exercise for my joints.

How are you doing with tiredness? The worst part besides the swollen joints was the fatigue, I mean I was taking more naps than my 6 month old at the time?

I have Hashimoto's, another immune disease that easily leads to RA. I did not ever want to deal with RA so I did some research and found out about an off label use for naltrexone. In high doses, naltrexone is used for opiate addicts. In small doses it does miraculous things for the immune system and stops the progression of any autoimmune disease. My Hashi's is in remission. It is called low dose naltrexone (LDN) when used for autoimmune diseases and I do mean small doses. Please go to this website: www.lowdosenaltrexone.org 

I am speaking from experience  and I even turned my OTL surgeon on to LDN (he actually gave me the script.) He now has the rheumatologist at the hospital involved in trying LDN on RA patients so I am very excited by this turn of events.  The website I listed above has a wealth of information to get you started. If you want more info or if you need to ask me any questions about it, please feel free to PM me.

Thank you very much, Sandy. I'll print out your message, and see what the doctor says. I'd much rather go with something tried and true by someone...rather than this guessing game I'm in right now.

Old scaredy cat,
anne

Good luck! Not all doctors are open minded about trying this which is a pity because it works particularly well on auto immune diseases (if it can stop MS in its tracks, I mean really, shouldn't the doc at least let you try it?)  What I did was I printed out that entire website I emailed you and asked my doc if he would consider letting me at least try it once he read through everyting I gave him. I was not demanding. He got back to me in a week and gave me the script. It has been a life changer for me.

I also called Skip's Pharmacy (on the list of reliable compounding pharmacies on that website) and asked them about the dosing for Hashimoto's. The pharmacist was so helpful, she even gave me the name and number of a facility in - heck I can't remember what state it was (New England somewhere) so that my doctor could call an actual medical establishment and speak to the staff there about their experience with LDN for Hashimoto's. I am sure they can do the same for you except they'd refer you to a rheumatologist or other doctor who treats RA. Considering the side effects of the commonly prescribed meds, not to mention they don't actually take care of the underlying problem, this is a very appealing alternative. As long as you stay on it, your RA will not progress (and it will revert and/or go into remission if you aren't too far along, which I don't think you are)  AND, you will be protected against suffering other autoimmune diseases. What a deal!! I truly hope you can get a script for this. It is already FDA approved so this is not an issue but it would be an off label use for the drug (doctors do this all the time so there is no ethical or legal issue here.)