VERY CONFUSED NEED SOME HELP

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ninny5
Regular Member


Date Joined Jun 2007
Total Posts : 20
   Posted 7/5/2007 7:33 PM (GMT -7)   
OKAY A LITTLE HISTORY. I WENT TO MY FAMILY DR. TO GET A WORT BURNED OFF. HE SAID HEY SISTER HOW LONG HAVE YOUR FEET BEEN BLUE. I SAID OH! THEY ARE JUST COLD. OF COARSE HE SAID I DON'T THINK SO. TOOK A BUNCH OF BLOOD WORK AND SAID I HAD SOMETING WRONG. MY BLOOD WORK CAME BACK BAD. YOU NO RHUMATOID VERY HIGH, COLESTROL HIGH 162. I DO NOT THINK THAT IS HIGH JUST NEED TO MAKE SOME DIET CHANGES . WELL WHAT EVER THE PAIN AND INFLAMATION BLOOD WORK SAID IT WAS 3 TIMES WHAT IT WAS SUPPOSE TO BE. I AM VERY ACTIVE ACHED A LITTLE IN THE MORNING BUT NOTHING TO COMPLAIN about. I AM NOT AS YOUNG AS I USED TO BE. 43 HA! HA! HE SENDS ME TO A RHUMATOLOGIST SHE WAS VERY GOOD DID MORE BLOOD WORK AND XRAYS SAID I HAD SEVERE RA. PUT ME ON A LOT OF MEDICINE, CLINOPIN TO SLEEP DIDN'T THINK I WAS HAVING A PROBLEM. PRILOSEC FOR STOMACHE  BECAUSE MEDICINE IS HARD ON IT. DARVECET FOR PAIN. MUST TAKE EVERY 4 HOURS EVEN IF I FEEL FINE. NAPROSIN FOR INFLAMATION AND MTX. OKAY HERE IT GOES TOOK MY FOURTH DOSE OF THIS HORRIBLE STUFF. I HAVE THROWED UP FOR 4 WEEKS, TIRED ACHY, CAN'T STAND TO BE IN SUN OR I PUKE. I HAD A MRI LAST WEEK THEY CALL TODAY AND SAY I HAVE VERY FIRST STAGES OF RA. I TOLD THEM I DO NOT WANT TO TAKE THESE MEDS. I FELT FINE AND HAVE NOT EVER FELT SO BAD. THEY SAID IT WAS MY CHOICE. I WOULD LIKE SOME OPINIONS ON THIS . THANKS AND GOD BLESS. SORRY FOR MIS SPELLING

songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 7/5/2007 7:46 PM (GMT -7)   
that sounds like lupus....how is your skin???

Yesterday I dared to struggle. Today I dare to win.

 
Diagnosed with severe Crohn's colitis in May 2005. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Taking low amounts of Pred now & 3600mg of Asacol currently...Can't wait till I can get back on Remicade, my miracle drug!


songstress
Regular Member


Date Joined Jul 2005
Total Posts : 393
   Posted 7/5/2007 7:49 PM (GMT -7)   
oh and Im no expert on arthritis but from everything Ive read on the internet....I think RA is destructive to your joints..that is probably why they dont want u to go off ur meds

Yesterday I dared to struggle. Today I dare to win.

 
Diagnosed with severe Crohn's colitis in May 2005. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Taking low amounts of Pred now & 3600mg of Asacol currently...Can't wait till I can get back on Remicade, my miracle drug!


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/6/2007 2:05 AM (GMT -7)   

Hi and welcome!

It seems strange to drug you up so much when you feel fine - especially the darvocet and such. if you are throwing up to that extent, that is not right and you need a change in meds and maybe even doctor.  First you have severe RA and then early stages and they still want to drug you up? I'd get a 2nd opinion if that is possible.

Did they also check you for diabetes?

Some things to try with the methotrexate before stopping - drink LOTS (I mean LOTS) of water on a daily basis. Also, take folic acid supplements daily (I take them in the a.m. and a b complex with it at night.) Stay out of the sun for sure.

Good luck and let us know what happens. ***


 


ninny5
Regular Member


Date Joined Jun 2007
Total Posts : 20
   Posted 7/6/2007 3:49 AM (GMT -7)   
THEY SAIS IT WAS NOT LUPAS AT THIS TIME WHAT EVER THAT MEANS. I AM TAKING FOLIC ACID . I FORGOT THAT MED. SORRY. AND MY BLOOD SUGAR WAS FINE. WHEN I TOLD THEM I WAS THROWING UP THEY SAID IT TAKES 6-8 WEEKS TO WORK OUT OF THIS. THEY ALSO SAID I HAD FIBROMYALGA. I AM JUST REALLY STRUGGLING WITH THIS WAS VERY HARD TO ACCEPT ANYWAY. I CRIED FOR EVER. NO I AM MAD. I HAVE A VERY GOOD FRIEND THAT IS A HOMOPATH SHE IS GETTING ME INFORMATION TO SEE IF MAYBE THAT IS NOT THE WAY TO GO. SO I WILL NOT BE SO SICK. THEY SAID THE METH DRUG IS TO STOP THE PROCSESS. BUT HOW LONG IS THE PROCESS. I MEAN DOES IT TAKE YEARS. OR SUDDEN. THEY ALSO SAID GOING OFF THE MED NOW COULD CREATE A FLARE. I LOOK AT ALL THE FLARES YOU PEOPLE HAVE I HONESTLY DO NOT THINK I HAVE HAD ANY FLARES. AS FOR MY SKIN I HAVE TO LITTLE PATCHES OF PHSORISIS. THEY CHECKED FOR THAT KIND OF ARTHRITUS AND SAID IT WAS NEGATIVE. I DO NOT HAVE A BUTTERFLY RASH. MY LEFT FOOT IS JUST AT TIMES VERY BLUE AND LITTLE TOES ARE ALMOST BLACK THEY SAID IT DID NOT HAVE A VERY GOOD PULSE. RIGHT FOOT DOES NOT GET AS BLUE. I HONESTLY DO NOT NO HOW LONG THEY HAVE BEEN LIKE THIS . I ALWAYS WEAR SOCKS UNTIL THIS YEAR HAVE A NEW JOB AND CAN WEAR SANDLES . SO WHO KNOWS HOW LONG. I HOPE YOU PEOPLE DO NOT THINK I AM BEING UNREASONABLE. I READ THIS DAILY AND FEEL SO GRATEFUL FOR NOT BEING IN AS BAD OF SHAPE AS SOME OF YOU. I THINK I WILL PRAY about THIS AND SEE WHAT I THINK . I JUST DO NOT WANT TO BE SICK. I AM VERY THIN ANYWAY SOME OF THE FIRST MEDS THEY PUT ME ON I GOT UP TO 145 I TOLD THE RA I HAVE NOT WEIGHED THAT SINCE GIVING BIRTH HA!HA! I AM STARTING TO LOOSE THAT. MY FAMILY THINKS I LOOK GOOD SINCE GAINING I DO NOT LIKE IT. THEY SAID IT WOULD ONLY GET WORSE WHEN I HAD A FLARE THEY WOULD PUT ME ON STEROIDS. THAT CAUSE WEIGHT GAIN. I AM JUST NOT SURE about ALL THESE MEDS. WHY TAKE SOME THING THAT MAKES YOU SICK.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/6/2007 9:38 AM (GMT -7)   

I agree - if you never had a problem and this stuff is making you sick, then they need to do a little more research. Are your feet blue all the time or just sometimes.....I was thinking Raynaud's Syndrom, but I think that focus's more on the fingers and toes, not the whole foot and it's typically purple/red, not blue.

I still think you need to see a different doctor. ***


 


ninny5
Regular Member


Date Joined Jun 2007
Total Posts : 20
   Posted 7/6/2007 3:47 PM (GMT -7)   
OKAY DR . CALLE DTODAY AND SAID I MIS UNDERTOOD THE NURSE. THAT IT IS SEVERE RA. IJUST HAD EARLY STAGES OF PIVETS IN THE BONE WHICH WAS GOOD THAT I WOULD NOT HAVE TO START SHOTS. I NEED TO TAKE THE METH DRUG TO STOP THE PROCESS BUT THE DAMAGE THAT IS DONE WILL NOT FIX WITHOUT SURGURY. THE JOINTS ARE GONE. PUTTING PRESURE ON THE BLOOD VESSLES TO FEET AND HANDS. I NEED TO TRY THIS FOR 3 MONTHS TO SEE IF FEET IMPROVE. IF THEY DO NOT WE WILL MOVE ON TO NEXT STEP. I THINK SHE IS VERY GOOD . I TOLD HER I DO NOT THINK THE NURSE EXPLAINED IT WELL. I TOOK IT AS EARLY STAGES OF RA. BUT EARLY STAGES OF PIVITS. THANKS EVER SO MUCH FOR YOUR SUPPORT. I WILL KEEP PLUGGING ALONG WITH MEDS.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/6/2007 3:56 PM (GMT -7)   

Wow.

I'm glad you got that straightened out. I hope the methotrexate stops upsetting your stomach so much. Maybe someone here will pipe in w/some other suggestions for it.

We hope you stay with us and keep us informed of your progress. We're here to listen, to help, to give (albeit virtual) hugs when needed.

Good luck and take care.

****


 


babyplace
Regular Member


Date Joined May 2007
Total Posts : 499
   Posted 7/6/2007 5:26 PM (GMT -7)   
Hi there,
welcome to the forum, it's a great place to be! Sure has helped me out, alot, the people have been wonderful. Sorry you are having such a tough time, butit sounds like at least you go some answers from your doctor this time. It always helps to have a doctor you can really talk to, and takes the time to help you understand what is going on. This all can get pretty confusing sometimes.
Not really sure what pivitis are, but do have some experience with a couple of the meds you take. Naprosin really made me sick to my stomach, I had to go through a several anti-inflammatories before they found the right one for me, but i couldn't handle that one. Are you sick all the time, or just when you take the methotrexate? If it's the methotrexate, some of the people on this board had some suggestions for me when I started it to help with the sickies. Like CaMama said, lots and lots of water, that really helps. Also, some people take it at night, then they sleep through the worst of the nausea. For me, my doctor told me to split my dose. I take half with breakfast, the other half with supper. She said that would help with the side effects. The first few weeks I got upset stomach, pretty queasy at times, but I never threw up. Now I don't even know I've taken anything, it will be week nine for me tomorrow. Sounds hard, but hang in there, this really really does get better!!
Hugs to you, hope this helps a little.
Jody

2sick
Regular Member


Date Joined Jun 2007
Total Posts : 27
   Posted 7/6/2007 6:06 PM (GMT -7)   

Ninny5

Just because rheumatologist say "we don't know what causes RA and we don't know how to cure it"  doesn't mean there is no cause and there is no cure.  Research causes to RA and you will be shocked at the number of causes with bonifide research to back them up.

I am working with a rheumatologist who believes in infectious causes to RA.  When we first met she said if it is infectious, I have a good chance of curing you.  If it is genetic, I will do my best to put you into remission.  Lucky for me, I have lyme, babesia, EBV, QFever and tapeworms. (if you can call that lucky) This means I have a good shot at reaching a cure.

Before finding her, I was working with a doctor who had identified heavy metals and yeast.  We worked together one year using only alternative treatments to bring my body into homostatis.  That is into balance.  Once your body is balanced, illness cannot thrive.

In one year working with this doctor, we brought my RA from high moderate to weak positive.  The rheumy I was originally working with was stunned when he did my 1 yr follow up. He declared me nearly dormant.

Don't believe that just because your doctor isn't up on it that it is no good.  If bacterial causes are behind 70% of RA, then shouldn't you find out if bacterial causes are behind your RA? In addition, food sensitivities can cause joint pain.  Most rheumatologists will pooh-pooh this approach, but if I had gone on the immune suppressing drugs, all the bacteria, fungi and parasites in me would have thrived and populated without any interference from my immune system.  I believe I would be worse today as a result.  Maybe this is why people have to go on stronger and stronger meds to stay out of pain.

Check out the following websites.

www.roadback.org   www.arthritistrust.org  www.immed.org

Good luck to you.  I can't imagine how you could be severe RA and have no pain.  If you want to find an alternative to the drugs that are making you so sick, you will need to really take charge of your illness because some doctors will fight you all the way.

 

 

 

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