Frozen Joints and Therapy Q’s

[lyndsaylee]

WEll, it’s been quite a while since I last posted here, but I’m still doing AP – 100 mg twice a day every other day. I’m also on Etodolac 400 mg twice a day every day. Still, after all this time, I can’t go without the Etodolac. In fact, it seems the only thing doing me any good is the Etodolac. The reason I say “doing me any good” is because without it, I immediately get a lot of pain and swelling. Unless, Im just having one year-long herx ( 😕 ), the PsA doesn’t seem to be budging. (I did read the post of green tea and I DO drink green tea every day so maybe it is!) Since being on the AP, two fingers have been attacked, affecting all three joints in each finger. One joint is completely frozen. They seem to be slowly getting worse. Also my neck can really lock up. Sometimes it feels like the muscles want to pull my head back. I ‘m guessing that’s because PsA can affect ligaments and tendons, too, not just joints. My right knee is beginning to swell and I broke out with psoriasis on my elbow and ear, which I’ve never had before – previously, it’s only been on my scalp. I get other intermittent pains all over, including my ribs, back and feet. On a positive note, I haven’t had any pain in my teeth, jaw or face for some time now – hallelujah! – that was especially bad pain. I’m guessing to really give this a fair shot I need to see an AP doctor. I just don’t have insurance and I’m worried I wouldn’t be able to afford it. Doing it “on my own” is confusing and it seems, not working. How do you know when you are one of those for whom this doesn’t work?

So, here are my concerns – tell me what you think: 1) Continuing on like this, am I doing irreverible damage to my (finger) joints? They’ve been stuck for quite a while now and they really hurt. Should I take something stronger – even temporarily – to get them unstuck? My Rheumatologist has been wanting me to take Embrel. 2) Does anyone know how long “long term use” is when taking anti-inflammatories? I worry about having been on Etodolac for so long (3 years.) I appreciate anyone’s thoughts and insights.

[Maz]

@lyndsaylee wrote:

So, here are my concerns – tell me what you think:

1) Continuing on like this, am I doing irreverible damage to my (finger) joints? They’ve been stuck for quite a while now and they really hurt. Should I take something stronger – even temporarily – to get them unstuck? My Rheumatologist has been wanting me to take Embrel.

2) Does anyone know how long “long term use” is when taking anti-inflammatories? I worry about having been on Etodolac for so long (3 years.) I appreciate anyone’s thoughts and insights.

Hi Lindsaylee,

Gosh, it has been a long time since you last visited – so sorry you’re still having such pain. Will try my best to answer your questions and a warm welcome back to you! 🙂

1. Yes, rampant inflammation and swelling can and does cause joint damage.

2. “Long term use” of anti-inflams is anything over and above what is recommended on the bottle. So, in effect, anyone who takes even an OTC anti-inflam longer than the recommended time (say 10 days of Advil, though I’d have to check a bottle to be sure), then it’s considered “long term.” With any chronic pain, it’s unavoidable to not be taking pain killers long term. With AP, however, the goal is to shorten this time frame by treating root causes.

PsA is classed as a reactive arthritide – a spondylarthropy. With newer research on these types of arthritides becoming available, it seems that these patients are responding better to combination oral antibiotics. See the article in the RBF Summer 2010 eBulletin:

https://www.roadback.org/EmailBlasts/ebulletin_summer10.html

(see Article entitled: New Study Asserts Effectiveness of Combination Antibiotics for Reactive Arthritis).

While some PSAers do okay on just oral minocycline and sometimes adding in IV clindamycin, after 6 to 8 months, if there is no sign of improvment, it’s definitely time to go back to the drawing board as secondary coinfections may be preventing progress. In JD Carter’s studies, combination oral therapy, such as doxycycline and rifampin or azithromycin and rifampin seemed to benefit these patients, which is a more broad spectrum approach.

It’s really difficult to receive the kind of help needed in these sorts of instances without working with either an open-minded doc who is willing to do some therapeutic probing with different classes of abx or an AP doc who believes in infectious causes. However, with this new study to back you up, you might be able to find a doc within your financial reach who might be able to support you in this kind of treatment choice.

Have you been able to make any dietary changes, which seem to really benefit PsAers?

Wish I could help you in your decision to try Enbrel or not, but I know that the only way is to for everyone to make their own informed choice in these things. There are some posters here who do use conventional meds while on AP with the goal of slowly weaning off their drugs in time. What you will likely already know is that, without insurance, Enbrel is a pretty expensive drug. You might be able to get assistance in some way to obtain it…some drug companies give out their drugs free for a period of time or at a reduced cost to those without insurance.

If you need an AP doc list, let us know where you are and we can take a look and see if you have anyone near you in your state.

[lyndsaylee]

Maz,

Sorry to be just now getting back. Thanks for taking the time to share with me this good information.

I have tried some dietary changes. I tried gluten free, dairy free, and a few other things. For the most part I could find no rhyme or reason to what I ate, (tomatoes or no tomatoes, potatoes or no potatoes, spicy food, citrus, etc.) with the exception of possibly wheat (gluten). I probably need to give more attention to this and go at it with more care and diligence.

Must go for now – daughter needs the computer! I’ll finish reading the info in the link you provided and will get back with you. Thanks again.

Laura

[APbeliever]

Etodolac is a little safer than other NSAIDs but I would not continue on them for too long. Besides they do cause stomach damages (along with other organ damages). One should be on some kind of PPI’s such as Nexium, Prevacid or Prilosec to minimize stomach damage. However , use of such PPIs also causes the reduction of stomach acid(since PPI’s are normal used for acid reflux disease) which causes the bacteria in the stomach(reduced acid due to PPIs will cause bacteria to flourish) to accumulate prompting an immune response. This immune response will eventually end up hurting you more (arthritis).

[chrysalis]

Hi can’t comment on medications and joints but my experience was having my shoulder joint and arm muscles so locked up it was a real challenge to drive as I could not lift the arm for about 6 months. I used Bowen therapy as it is not intrusive and has minimal pain when applied. Two sessions gave me back movement and then the Mino started reducing the inflammation and now I have about 90% use. Have found from this site that so many different things work for different people. Am constantly questioning whether I should go for the Methatrexate in case my joints disintegrate but each time I think this I meet someone else on it that is doing much worse than me with more side effects. Getting one body part moving again was a triumph. I really hope you get the info you need. good luck chrysalis

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