Anyone here have RA?

[stormchickx]

Originally Posted by CheshireCat

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.

 

[strange_wings]

^ Did you have an HLA-B27 test done? And is back pain one of your main complaints?

 

[stormchickx]

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?

^ Did you have an HLA-B27 test done? And is back pain one of your main complaints?

 

[strange_wings]

Originally Posted by stormchickx

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.

 

[cheshirecat]

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.

 

[kluchetta]

Got a call from the rheumatologist...all blood tests were negative. That is so confusing to me.

 

[kluchetta]

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?

 

[kluchetta]

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!

 

[kara_leigh]

Originally Posted by CheshireCat

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?

 

[booktigger]

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.

 

[carolina]

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!!

 

[natalie_ca]

Originally Posted by kluchetta

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.

 

[strange_wings]

Originally Posted by Natalie_ca

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.

 

[cheshirecat]

Originally Posted by kluchetta

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.

 

[cheshirecat]

Originally Posted by kara_leigh

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.

 

[strange_wings]

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.

 

[cheshirecat]

Originally Posted by strange_wings

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