Can you be having Joint Damage w/o Swelling?

[Serenity]

Hi all –

I have been on minocycline for the past 2 years and am doing well on it (diagnosed 2.5 years ago).  It is my 1st RA medicine aside from prednisone.  I have slight stiffness in my hands most mornings but it goes away within a few minutes of waking up.  On a scale of 1-10, the 'pain' is a 1 or 1.5 at the most.  I believe this is the technical definition of remission (or at the very least, under control).

I don't have any swelling in my hands, but I'm SO scared of the commercials that say my joints could be getting damaged even though I don't feel anything.  How can I guarantee that AP is working for me?

Dr. T does not believe in x-rays and he dismisses my concerns by telling me to enjoy the spring weather.  However, I cannot let go of my fears w/o getting some answers and I keep running into dead ends with my online research.

Can someone please help?

Thanks in advance!!

[richie]

Hi

Seems to me if you were getting joint erosions things would hurt much more than they are –Enjoy the spring

richie

[steph-sclero]

Hi Serenity,

You can have joint damage without swelling, however your pain would probably be much worse, as Richie said. If an x-ray would clarify that for you ask for one. Your doc works for you.

All the best,

Steph

[Patti D]

Hi Serenity,

Thank you for the question. I have the same one and have been on AP for 5 months. My doctor did not do xrays either. My blood work was normal after 1 month of being on AP and he does not want to see me until October. That is 6 months from now. I too am worried. I still have pain but it is getting so much better.

I am glad to hear your have done so well. I too was on prednisone for 3 months and am off now and have only been on mino 2tx a day since the beginning. I hope I do as well as you have done.:)

Happy Days!

Patti D

[whaleharbor]

This is one of my questions too.  I wonder how much of the “joing damage without swelling or symptoms” is actually marketing for the latest blockbuster drugs.  Cause before them, what did we do?  Just deal with it it I guess.  Or no one seemed to care to take as many xrays then or whatever.

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Susan LymeRA]

Hey! If you are having no pain, no swelling.  Worry about joint damage when it happens.

Commercials for medications should be outlawed.  All advertising is based around creating a need in the consumer's mind.  It should be illegal for prescription medications.

Flip the channel.

Susan

[linda]

You can get joint damage w/out noticeable swelling, especially in the large joints. In small joints, a little inflamm. will  be visible because of the small area involved. In a large joint like the knee, hip, shoulder etc, you need quite a bit of inflamm to notice any swelling, but there could be a small to moderate amt of swelling that is not visible to the human eye. That's why x-rays are so important. I've had various problems with doctors over the years, but not getting x-rays was never one of them. If you are having any pain or stiffness in a joint, there is some degree of inflamm going on, even if you can't see inflamm.  Most joint damage is irreversible, AP can stop the progression of the disease, but it does not repair any damage that has already occurred.  It's a good idea to keep tabs on any painful joints, with or without swelling.  So while they are using a scare tactic on those commercials, they're not lying. (fear and sex, that's what sells)

The thing that bothers me about those commercials are the beautiful people running on the beach, playing golf, etc, while they list off all the dangerous side effects. I get a monthly magazine about arthritis, half of the ads are for biologics and meds like mtx, the other half are for diabetes. Why diabetes?, because it is a very common side effect of long term prednisone use, and many people with AI dx are rx'd prednisone without being educated by their doctor on the side effects. We're definitely a gold mine for pharmaceuticals, and their use of fear in advertising is unconscienable-sp?- but unfortunately that does not change the fact that we can develop joint damage without any noticeable swelling.

linda

[whaleharbor]

Ok…but don't you think you'd feel some sort of pain in the joint?  I see your point on the noticeable on the larger joints but wouldn't it hurt?

Also, wouldn't the blood work show signs of inflammation?  Like elevated Sed or CRP?

If there is no pain and the blood work is all good…I have a problem with taking meds for inflammation that isn't there…just in case.

 – – whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[linda]

“If you are having any pain or stiffness in a joint, there is some degree of inflamm going on, even if you can't see inflamm……… It's a good idea to keep tabs on any painful joints, with or without swelling. “

Hi whaleharbor,

Sorry that I didn't make that more clear. In a nutshell, you can have pain without any noticeable inflammation, and therefore be at risk for joint damage in that situation. If there is no pain and no inflammation, I agree with you, there's no reason to continue with NSAIDS or other anti-inflammatories.

As for bloodwork, there have been times when I was severely ill and my sed rate was normal. I trust my body more than labs, but I believe that they are for the most part good indicators of disease progression; as long as they don't override a patients symptoms. It's all too common for someone to go in to see a doctor, and have a bunch of tests done which all come back normal. The patient is declared healthy, implying that the pain is all in his/her head. Nothing is more frustrating. I have PsA, it took over 5 yrs for a diagnosis because I tested seronegative for Rh and my other labs were normal. It wasn't until I literally couldn't walk into my doctor's office that he was willing to acknowledge that something was wrong.

These are elusive diseases that can be difficult to pin down, esp now since it can take 1-2 months to get in the see a doctor. By then the symptoms may have temp subsided so the patient doesn't look sick. But I'm off on a tangent here, sorry.
Short version: no pain, no inflamm, no anti-inflammatories.

linda

[whaleharbor]

Hi Linda,

I agree with you. The lack of pain I was referring to was Serenity's who said in her post that her pain level was at 1 or 1.5 at the most on a scale of 1-10. 

Serenity,

 I share your fears. And no one really knows for certain who is going to get damage or what extent the damage could take.  That's probably one of the hardest issues to deal with us the constant uncertainty.

But perhaps take it a bit further down the line…if what “they” say is true that only Enbrel (and possibly other biologics) can stop or reverse erosions..which is a BIG IF…if you are having any damage are you willing to take Enbrel…knowing all that you know about it…assuming you've researched it.  Or…are you willing to risk or suffer damage in hopes of avoiding other side effects.  A real catch-22 isn't it?  I think this is a question only we can answer for ourselves. I wonder if your doctor is hestitating going the xray route because you are either (1) doing great and there's no need for them or (2) because he wouldn't consider an alternate treatment for you because of the potential side effects so why bother with the xrays.  Perhaps that is the question to ask him so that you can make a completely informed decision about your health.

 

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Serenity]

Thank you to everyone for all your thoughts on this matter. 

My concern is exactly what Linda articulated, that the pain in my hands (though slight) means that joint damage is happening even if I don't have visible swelling.  I'm trying to figure out if the dangers of taking Voltaren (or other NSAIDS) outweighs the potential danger of not controlling the pain/inflammation/progressing joint damage.  My Rheumy will NOT entertain these questions, sadly.

I would really like a preventative treatment measure rather than dealing with joint damage down the road.  I'm young (30), would like to eventually have a family, and would like to do everything I can to heal myself without destroying my body with more serious drugs.

I will continue to research this, and will share any news that I can find.

thanks again!

[Serenity]

Oh, and I completely agree with everyone who says the latest RA commercials should be banned.  My mom cries everytime she sees a Humira commercial.  They definitely prey on peoples' fears to peddle their products.  Grr!

[Todd WI]

My Rheumy will NOT entertain these questions, sadly.

It sounds like you need a new doctor. Questions of risk vs. benefits of medications is definitely on topic and something your doctor should be more than willing to entertain IMHO.

Todd

[Sierra]

I had an erosion show up on a toe joint that had absolutely no swelling, redness or pain. That has prompted me to be somewhat forceful about asking for an annual       X-ray to monitor my condition.

Sierra

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