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Anyone here have RA? - Page 2

post #31 of 57
Thats awesome!! Get everything under control and out of pain and you should be set to go!!
post #32 of 57
Thread Starter 
I'm a little relieved (maybe a little ashamed to admit) that I can keep taking the pain killer.
post #33 of 57
Thread Starter 
One more question, guys!

If you've had an exam by a rheumatologist, were you really sore the next day? I'm really stiff and sore today, knees, toes, ankles, hands. I think it's the range of motion stuff she did with me.
post #34 of 57
Quote:
Originally Posted by kluchetta View Post
If you've had an exam by a rheumatologist, were you really sore the next day? I'm really stiff and sore today, knees, toes, ankles, hands. I think it's the range of motion stuff she did with me.
No, mine was actually fairly gentle, at least till she got to checking my SI joints - the way those are checked (one way you lay flat on your back and put your ankle over your other knee - in a figure 4 sort of) causes the muscles to be compressed and such. On a good day that still hurts me.

You must be really swollen and sore, or maybe your doctor poked a bit too hard. I have read others complaining about their doctors being too rough.
Also, how long were you sitting in those uncomfortable waiting room seats and is it cold there? That alone can make you worse if you're already sore. Nerves/stress/worry will make you feel the pain more too.
post #35 of 57
Thread Starter 
Quote:
Originally Posted by strange_wings View Post
No, mine was actually fairly gentle, at least till she got to checking my SI joints - the way those are checked (one way you lay flat on your back and put your ankle over your other knee - in a figure 4 sort of) causes the muscles to be compressed and such. On a good day that still hurts me.

You must be really swollen and sore, or maybe your doctor poked a bit too hard. I have read others complaining about their doctors being too rough.
Also, how long were you sitting in those uncomfortable waiting room seats and is it cold there? That alone can make you worse if you're already sore. Nerves/stress/worry will make you feel the pain more too.
She was very gentle, but she did need to test the furthest range of motion I had. So I was sore. But the drugs seem pretty good so far, LOL.
post #36 of 57
Actually when I left I felt pretty good because he had the nurse give me a shot of some kind of Anti inflammatory/pain killer.

This was after he stuck the giant needle into my knee to extract joint fluid.

One time we did discuss prednisone but I would refuse to be on it for any length of time because of the side effects. I've seen skinny people who blew up like balloons. I'm fat enough I do not need to make it any worse.

When I read your post about seeing the rheumatologist I was wondering how it went. It sounds like you had a good first visit.
post #37 of 57
Thread Starter 
Quote:
Originally Posted by CheshireCat View Post
Raising hand I have it.

My advice is find a rheumatologist and get tested. I went undiagnosed because I don't test positive on the simple blood tests.

I have been doing OK but am at a point now where I will have to go to some different drugs and it makes me nervous.

Also I haven't gotten the results of my last labs. That make me nervous. My next appointment is February 4th and I am not looking forward to it.

If you do have it the sooner you know the better your chances of slowing it down. It never goes away but you can keep it from taking over.
By the way...how did your appointment go? What meds are you on? What labs did you have?

ETA: Oh, and I'm now on plaquinal (sp?) too. It makes me thirsty and hyper, LOL. How about you?
post #38 of 57
Quote:
Originally Posted by kluchetta View Post
By the way...how did your appointment go? What meds are you on? What labs did you have?

ETA: Oh, and I'm now on plaquinal (sp?) too. It makes me thirsty and hyper, LOL. How about you?
The appointment was OK. He didn't give me any of the injectable drugs. Said he didn't think it was an option at this time. We had talked about it at my last visit. At first I thought I would have to make weekly visits for shots. Then I found out you do it yourself. I was not too keen on the idea of having to poke myself with needles but it would be better than weekly visits. I'm too lazy for that!

I was really worrying because I was sure my last lab would be bad. I felt really crappy that day and bad days mean more inflammation which makes the tests come out high.

Plaquenil was the drug he prescribed when I first saw him two years ago. And the one that actually made a difference in my puffy feet. I've never noticed that it made me hyper but that could be one reason that I wake up at night with a dry mouth. (because of this I started keeping a bottle of water on the nightstand)

The only change he made was to adjust the dose on my methotrexate. I started with five little pills a week. Then went to seven a week. This time he decided to split the difference and change it to six.

He also decided to go back to doing labs every two months. I had graduated to ever three. My inflammation level was down this time, in the low 30's, but still to high. This was a surprise.

The labs are primarily to test liver enzymes because the methotrexate can do damage in high doses or if taken over long periods.

I'm still taking the relafen and the only other change was because of a change in my insurance. For some reason they will not cover the Ultracet (acetaminophen and tramadol).

Well, they will but only 40 a month, I had been getting 150. So that's out. What I can get is just plain generic tramadol. So now I will take that two to three times a day and add my own generic acetaminophen. The amount of each drug is a bit different but it should work the same.
post #39 of 57
Thread Starter 
Well, that doesn't sound too bad. My drugs yesterday were only about $17, so I was pleased with that.
post #40 of 57
I have RA. I cannot take the steroids to treat it because the side effects for me are worse than the treatment. I cannot take most of the meds for it because I also have lupus, diabetes and an as yet undiagnosed liver disease. We are still trying to figure it all out. I cannot take most of anything for it right now. So far it is not too bad, except my hips and ankles hurt some at night, walking seems to help, so I walk up and down my long hallway. I am 49 and I found out about all this in 1 checkup. I am still having a little trouble accepting it.
I hope it all works out for you. Please keep us posted.
post #41 of 57
Quote:
Originally Posted by CheshireCat View Post

Plaquenil was the drug he prescribed when I first saw him two years ago. And the one that actually made a difference in my puffy feet. I've never noticed that it made me hyper but that could be one reason that I wake up at night with a dry mouth. (because of this I started keeping a bottle of water on the nightstand)
I could not take Plaquenil. It made my heart race all weird-like and I had spots in front of my eyes, couldn't sleep right. I just felt so miserable and was only on it for a few days. My rheumy also put me on sulfasalazine, and my skin just dried out so bad it would feel like sandpaper. My hands are still dry from it. Right now I'm beginning to think I have something other than RA or RA on top of something else that just makes me hurt all over: my chest, shoulders, and upper back aches all the time.
post #42 of 57
^ Did you have an HLA-B27 test done? And is back pain one of your main complaints?
post #43 of 57
Not only my upper back. It's also in my upper chest (around breat tissue.. my ribs feel sore when I rub in that area near my sternum), shoulders, shoulder blades. They just ache and sometimes feel like they are burning at times, all on both sides. What does the HLA-B27 test for?
Quote:
^ Did you have an HLA-B27 test done? And is back pain one of your main complaints?
post #44 of 57
Quote:
Originally Posted by stormchickx View Post
What does the HLA-B27 test for?
Genetic predisposition to certain types of autoimmune arthritis and some inflammatory bowel problems like crohns, also increases likelihood of one getting iritis or uveitis. Main thing associated with it is ankylosing spondylitis - which typically affects back/neck and SI joints, and can cause inflammation in ribs and sternum, or even peripheral joints (usually larger ones - hips and shoulders).

And as with most health problems - particularly autoimmune, you can have more than one type.
post #45 of 57
Drugs affect people differently. I took sulfasalazine for about a month. The only thing it did was make me nauseous. And while I was taking it I had a major flare up.

This was replaced with the methotrexate. Some times this also make me nauseous and tired (today is one of those days) but not all the time and I only take it once a week.

Fortunately for me I only have RA. Doctors have tried to hang other things on me over the years but have been unsuccessful. I have enough trouble with this I don't need anything else, thank you.
post #46 of 57
Thread Starter 
Got a call from the rheumatologist...all blood tests were negative. That is so confusing to me.
post #47 of 57
Thread Starter 
Hi everyone , how's it going?

The drugs I've been on seem to be helping quite a bit. No side effects from the plaquenil, and the swelling and redness have all but disappeared. Unfortunately, my thumb is getting worse (triggering) - I can't straighten it very easily at all now. And I am also starting to have numbness and tingling in my ring and middle fingers.

But anyway - how is everyone else doing?
post #48 of 57
Thread Starter 
Rejuvenating this old thread to update, and I have some questions.

So...it's been almost exactly a year since all this started for me. I was really doing great, but in mid-November I started having pain in my left wrist. Then my left thumb. At this point I can't really pick up or carry anything with my left hand.

Sigh...and my right thumb is triggering again. Next rheumatologist appointment is the end of February. Has anyone had their plaquenil or anti-inflammatory stop working after about a year?

I hope to hear from you all soon! And that you are doing well!
post #49 of 57
Quote:
Originally Posted by CheshireCat View Post
Raising hand I have it.

My advice is find a rheumatologist and get tested. I went undiagnosed because I don't test positive on the simple blood tests.
What tests did they run to finally diagnose you?
post #50 of 57
just found this thread - I have a connective tissue disorder, and the treatment is similar to arthritis, I take Plaquinel (although it has a slightly different name when I Get it from the docs), never really noticed any side effects, although I struggle to sleep (so got given more pills for that!!) and the hairdresser is passing comment on fine hair - I have never had fine hair, so it could be due to that. I think I will put up with the fine hair though. I have had a bad few weeks, my knees have been the most effected (when i had my first flare up 5 years ago, it was just my hands), which is slightly worrying, I am having to take strong anti-inflammatories quite often now, although i try to limit the painkillers, but on a bad day, I am taking meds every couple of hours. The disease i have apparently does go away, it can just take between 2 and 10 years - I have been on meds for nearly 4 I think, as it took them a while to diagnose, and I got a nasty rash before they did!! Stress is definitely a big factor for me, and I would probably have much better health if I cut back on the rescue work, but then I would be very bored. I try not to think too long term, although it can be very depressing when you are laid in bed doing nothing but in pain and I am only in my twenties (although thirty is getting closer!!). Rheumatologist only wants to see me every 9 months though which is good - although I do get more pins and needles than I used to, I must see the doc at some point.
post #51 of 57
For the ones open to trying holistic treatments.... This is one thing I am going to buy for my mother, next time she comes here... Yep, It is used on horses, but it has awesome feedback in human beings. It's only Hylauronic Acid, completely safe... It reduce inflammation on the joints, lubricates them, and promote healthier, less swollen joints...

Since it is an autoimmune disease, you may also benefit from transfer factor...

Here is the link for hylauronic acid:

http://horsewarehouse.com/cgi-bin/hw...crement=000607

Good Luck!!
post #52 of 57
Quote:
Originally Posted by kluchetta View Post
I'm becoming increasingly worried that I have Rheumatoid Arthritis.
The only way you will know is if you go to the doctor and have them test for it. All self diagnosing does is cause you stress and worry. A simple blood test will tell you for sure.
post #53 of 57
Quote:
Originally Posted by Natalie_ca View Post
The only way you will know is if you go to the doctor and have them test for it. All self diagnosing does is cause you stress and worry. A simple blood test will tell you for sure.
You're a bit late on this thread and must have missed her other threads and CheshireCat's post in this thread, too. Blood tests are not perfect, those that end up negative on them all but are show signs of damage and symptoms tend to get labeled seronegative.


kluchetta - I've heard of people becoming tolerant to DMARDs or just not able to tolerate certain ones. You may have to try several meds before you find the one that works for you. I hope you have a good rheumatologist who's willing to work with you, and that you're getting regular blood tests to keep an eye on your kidneys and liver.

As for anti-immflamatories (NSAIDs), ibuprofen became useless to me years ago. I've had good luck with prescription naproxen and relafen, but I have regular osteoarthritis and weird swelling/muscle and joint pain that's from hypermobility and likely a dysautonomia side effect. I have no idea if relafen would work for autoimmune arthritis very well.
post #54 of 57
Quote:
Originally Posted by kluchetta View Post
Rejuvenating this old thread to update, and I have some questions.

So...it's been almost exactly a year since all this started for me. I was really doing great, but in mid-November I started having pain in my left wrist. Then my left thumb. At this point I can't really pick up or carry anything with my left hand.

Sigh...and my right thumb is triggering again. Next rheumatologist appointment is the end of February. Has anyone had their plaquenil or anti-inflammatory stop working after about a year?

I hope to hear from you all soon! And that you are doing well!
There is a long story connected to it and I started to write it here but decided I didn't need to tell the world my long story. PM me if you want the details.

The short answer for me was yes, my anti-inflammatory drugs stopped working. It can happen but not to everyone. I think it's more a matter of the progression of the disease and your individual history.

When this thread first started the doctor had suggested me taking the next step and moving on to an injectable drug. I was not ready to take that step and put it off. Last month he did x-rays and decided that it was time.

There are two name brands one is a once a week injection the other every two weeks. He prescribed the two week one. So far I have only done it twice. It could take three to four months before I know if it is really working.

With the addition of the new drug I stopped the Plaquenil.

At this point I can't say how well it is working. But I did notice a lot less pain in my left wrist. (must be something about the left one) It is the worst and has been the most painful.

Actually the first week I thought I was feeling a lot better but then got hit with the cold that was being passed around the office. Now I just want to breath again.
post #55 of 57
Quote:
Originally Posted by kara_leigh View Post
What tests did they run to finally diagnose you?
He tested two things. This is from the report.

C-Reactive Protein (quantitative)

While the CRP test is not specific enough to diagnose a particular disease, it does serve as a general marker for infection and inflammation, thus alerting medical professionals that further testing and treatment may be necessary.

And CCP Antibody IgG (Citrulline Peptide Antibody)

The citrulline antibody appears early in the course of rheumatoid arthritis and is present in the blood of most patients with the disease. When the citrulline antibody is detected in a patient's blood, there is a 90-95% likelihood that the patient has rheumatoid arthritis. The test for the citrulline antibody is therefore useful in the diagnosis of patients with unexplained joint inflammation, especially when the traditional blood test for rheumatoid factor is negative. The citrulline antibody also has prognostic (predictive) value since it is associated with a greater tendency toward more destructive forms of rheumatoid arthritis.

Lucky me the CCP was positive and my CRP super high.
post #56 of 57
CheshireCat - You're on an anti-tnf? I hope it helps, they really seem to give a lot of people their lives back - or at least more than what they had.
The main problem is just that they're so expensive.

To get over your cold soon. If you find it lingering too long make sure to get in to see your doctor. As with the other meds, the anti-tnfs really knock out your immune system too.
post #57 of 57
Quote:
Originally Posted by strange_wings View Post
CheshireCat - You're on an anti-tnf? I hope it helps, they really seem to give a lot of people their lives back - or at least more than what they had.
The main problem is just that they're so expensive.

To get over your cold soon. If you find it lingering too long make sure to get in to see your doctor. As with the other meds, the anti-tnfs really knock out your immune system too.
Yes, I just started the anti-tnf this month.

Fortunately I have insurance and they did approve it. If not for that I wouldn't be on it.

Thanks for the
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