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Need advice on what treatment to ask for next- when do you do x-rays?

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Rheumatoid Arthritis
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Posted 8/30/2010 2:12 PM (GMT 0)
Hi everyone, I have been dx'ed with fibro for about 3 years and RA for about 1 year. I also have hypothyroidism, high blood pressure, Sjogren's and Raynaud's. My blood tests for RA have always been negative, my rheumy dx'ed me based on the duration and severity of my symptoms. I have had major pain in my finger joints and thumb joints, last winter it was affecting me so much that I could barely do anything like zip up a coat or turn a doorknob and if I did things like cut up vegetables for dinner I was in agony the rest of the night. I also had pain in my elbows and knees occasionally.

  I take Lyrica for the fibro, and it helps. I tried Cymbalta for a while, but it ended up making me agitated. I have been on Plaquenil for about a year now, and it seemed to help for a while. several months ago, I started going through a cycle of having a flare right before & during my period. It happened for a couple months is a row, and then it stopped happening.

  This past month, I had a really bad flare, you guessed it, right before & during my period. I am resistant to NSAIDS, I have tried several prescriptions and they either give me horrible side effects, or they work for a week and then stop. I  have also tried Ultram, which worked beautifully for a couple weeks and then stopped.  So I have prednisone for flare-ups, and that didn't help either. My rheumy prescribed Tylenol with codeine, which I had an allergic reaction to (itchy rashy face). Then she prescribed hydrocodone and said that sometimes people aren't allergic to that. So I have been taking that. It helps for a short while with the pain, but mostly it just makes me feel out of it.

  So here's my question- what do I do next? I am not in a pain flare all over my body, but my fingers still hurt a lot. It's mostly my index and middle fingers, and I have gotten comfortable clicking a mouse with my middle finger because my right index finger hurts worst of all. I just learned to knit, and I can't do that. Now even doing things like grasping dishes to put them away makes me hurt. I'm wondering if my finger joints are deteriorating and that is causing the pain. I had blood tests recently and they "were all negative" according to the drs office.

  With a condition like RA in the fingers, what can you do? Is it just a matter of finding a medicine that will take away the pain and then living with it? I have already had to stop doing a lot of what I  love because of the fibro and RA, how can I live with this pain? Am I supposed to just sit around the house all day? I can't do a lot of cooking, which I enjoy, unless my hubby is home, and then he cuts everything up ofr me or peels potatoes or whatever (I call him my Sous Chef!) Should I ask my doc if I should get x-rays to see if there is any joint damage? Then what do we do?

  Oh another thing I have noticed is a white bumpy thing under my skin on the middle knuckle of my index finger, right hand. Don't know if that's related to the pain. I know there are things like Heberden's nodes but I don't know if that is it.

  Anyway, sorry to go on for so long, I just want to explain my situation. I want to see if we can figure out what's causing the pain and fix it instead of just covering over the pain with medication! Thanks for reading!

Posted 8/30/2010 5:58 PM (GMT 0)
An X-Ray or ultrasound will show any joint damage in the hands/wrists, along with any fluid on the joints. It is often unnecessary to perform these though, as an appropriate DX can be made on the strength of visually checking the hand and examining the joints.

There are many treatments available to treat the causes of RA (disease modifying drugs - DMARDS) such as Methotrexate, Sulfasalizine, Gold (old), Hydroxychloroquine, Leflunomide. All have different side effect profiles, and their effectiveness varies wildly from person to person. Methotrexate is the mainstay, it is effective and cheap - but can be harsh on the stomach (injecting bypasses this). Also pain and inflammation can be kept under control with NSAIDs, especially the likes of Diclofenac 50mg and Arcoxia (not sure if this is FDA approved yet, it's available on RX in England and is excellent.) Steroid injections (cortisone) work wonders, but the effects are only temporary, good for holidays or periods of required fidelity....

Opiates like Codeine, and Opioids like Tramadol will treat the pain but as you say will not prevent damage and will merely "cover-up" the symptoms rather than attacking the cause, but once the cause of the disease is being treated, there will still be levels of pain which may or may not require treatment with NSAIDS or Opiates. Hydrocodone isn't available, even in hospitals, in England :( There's a jump from Codeine to Oxycodone with a great huge chasm of potency separating them.....

Once you find the right combination of DMARDS and the NSAIDS which work best for you, you WILL feel much better, I assure you, it can just take a little time.
Posted 8/30/2010 8:01 PM (GMT 0)

Thanks for the reply! I'm guessing that I need to add another med, because I am already taking Plaquenil (Hydroxchloriquine), annd it helped for a while. My rheumy always looks at my hands when I see her, but I don't have a lot of swelling in my fingers. I have swelling mostly in my MCP joints (the joint where your finger attaches to your hand). My finger joints have also become bent over the past couple of years. My doc didn't seem to think it was that bad, so I don't know. I guess I need to go back to the doctor.

Posted 8/30/2010 9:13 PM (GMT 0)
If the swelling is mostly in your metacarpals then... do you/your parents/siblings have any psoriasis? Just that what you describe sounds closer to PsA (Psoriatic arthritis) than RA. Less severe swelling (but no less pain!) and a tendency for swelling to be localized to the MCP joints...

Either way, Methotrexate is the obvious drug of choice to try next, it has a lot of benefits and quite a hefty side effect profile, but I think that most people find it is worth it, as the side effects taper off over time! (I don't know where you're from, it may be policy to try Hydroxychloroquine or Sulfasalizine before trying MTX... both drugs offer significant improvements in some peoples health, with less severe side effects, so trying them for a few weeks may be prudent!)

Good luck
Posted 9/1/2010 1:26 AM (GMT 0)
I am on plaq and MTX and together they keep me in pretty good shape-when I have a flare anyway my doc gives me a medrol dose pack.

You need to keep the inflamation under control or it can cause erosions. Pain is actually a poor indicator of how active the disease is currently.
Posted 9/13/2010 6:52 PM (GMT 0)
JayBeSpoke, what you say about psoriatic arthritis is interesting. I have never had much swelling in my finger joints. I have some slight swelling in my MCP joints. My fingernails are ridged & pitted. I showed my rheumy & she didn't seem to think that they were indicators of psoriasis. I have always had an itchy, flaky scalp but I don't know how you tell if it is psoriasis or just dandruff.
Recently, I have had a weird scrust behind my earlobe that burns when I touch it or remove the crust. I don't know if this is related at all.
I'm already on Plaquenil, can't take Sulfasalazine because I am allergic to Sulfa. I guess MTX is the next thing to try. And, I have no idea what my parent's hands look like because I am not involved woth my family at all since they were very abusive to me growing up. I don't ever recall any older relatives talking about arthritis, so I'm not sure.
Thanks for the replies!
Posted 9/13/2010 8:35 PM (GMT 0)

moggy914 said...
My fingernails are ridged & pitted.... I have always had an itchy, flaky scalp ...
... I have had a weird crust behind my earlobe that burns when I touch it or remove the crust.

Each of those independently could be identified as Psoriasis, and given that we have three psoriasis-esque symptoms here, I'd say it's seriously worth looking into considering the MCP complaints. Although to be fair the treatment doesn't really change, but in some circumstances it can be easier to get better treatment with PsA + Ps than with RA (at least where I'm from).
Posted 9/14/2010 3:30 AM (GMT 0)
Hi Moggy, it sounds to me like you need more meds to control your symptoms too. But my hands hurt and I find heat helps a lot. I use a wheat pack in the microwave and wrap up my hands to ease that pain. Before cooking I often run them under the hottest water I can handle , it sort of eases them a bit. Also my OT has made me grips to slide on to knife handles etc so I can use less fingers and more hand grip when cutting. She also encourages me to carry not with my fingers but up my arms, so that I'm using gross motor skills more and moving the weight up my arm more. Plus if I get too sore to change tasks often, so repetitive jobs get broken up more to take the stress off the finger joints or wrist joints.

Prednisone helps me a lot but mtx was brilliant, just took away so much pain. Definately worth a try, best wishes, golitho
Posted 9/14/2010 12:42 PM (GMT 0)
Golitho, I have a rice pack that I use for my hands! Does the wheat smell good when it gets heated up? I made my rice pack out of some leftover flannel that I had, and I put brown rice in it because it's what we had on hand at the time. It smells kinds funky when it's heated up. That's a good idea about running your hands under hot water- I shall have to try that. Sometimes I will soak my hands in a bowl of hot water and that helps too. My husband jokes that I need to make myself a full-body rice pack!
The first time I took Prednisone was incredible- I had energy and very little pain for about a week! Next time, it barely touched the pain at all. My rheumy told me that each time you use Pred, you need to take more & more because your body gets used to it. She only likes for people to go on short doses, like for about a 2 week period also. But I guess I need to try Methotraxate. Thanks!
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