One Patient's Positive Perspectives

turning pages was painful

My hands have given me a lot of trouble lately, and normal actions have been unusually painful.  Amazingly, I can play the piano without increasing my joint pain, but a few very simple tasks have been a different story! Today I was convinced it is time to get help.  Yesterday I found it hurt to rip open an envelope.  Today, I was sitting at my desk at work, turning the pages of a reference binder and realized that even picking up the pages and turning them was painful.  That was the last straw!

I think its time for help.  Lately I have had increasing trouble with buttons and zippers and have had to ask for help.  Even putting on socks or pantyhose hurts, but I am not about to ask anyone to help with those.  (Well, maybe my husband could help with the socks.)  Pushing down the button on the car door handle is almost impossible without using both thumbs, and opening snug jar lids or thermal mugs is downright impossible.  I have even had trouble getting my credit card out of my wallet.  The maintenance dose steroids are not helping.

It has been a long time since I last took non-steroidal anti-inflammatory drugs (NSAIDs) to control the inflammation in my joints and lupus arthritis, not since before Rituxan infusions several years ago.  Now, I think it is time to ask for them again.

I cannot take any of the over-the-counter varieties such as aspirin, ibuprofen or naproxen, so I need a prescription. Acetaminophen doesn’t count, since it is an analgesic and fever reducer, but not an anti-inflammatory drug, even though it gets grouped in with the NSAIDs.  After a major car accident almost 30 years ago, we tried all the different NSAIDs then available, and one I tolerated was an (old) seldom prescribed non-steroidal anti-inflammatory drug, sulindac.

drugs

After taking all the fancy new high-tech biologic drugs for my lupus that cost thousands of dollars per dose, maybe this old simple medicine that worked before will work again. Perhaps it is the small tree we missed in a vast forest of drug choices.  Sulindac had few side effects and controlled my ballooning joints effectively, long before I ever took methotrexate, azathiaprine, rituximab or belimumab for my lupus.

I’ve decided it is time to mention this new (old) idea to my doctors and see if they agree with my suggestion, or perhaps they will have a better idea.  I cannot accept the idea that lifting a piece of paper should  hurt!

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Comments on: "Lupus when picking up paper hurts" (3)

  1. my hands are my biggest downfall…when I was working full time it was my feet and hands! Almost a year ago I was in so much constant joint pain that I felt like giving up on life…I used to think I am almost 50, maybe that is old enough? Then I found a rheumotologist, he put me on prednisone and plaquinil. I am down to only 6mg of prednisone and about to drop one more mg and on 400 mg of plaquinil Anyway…it killed my stomach for a long time but now things are a lot better. I’m still careful about the stomach pain BUT all joint pain has reduced to nothing or very small pain…except my hands. My hands still hurt but I garden a LOT and I write books as well. I think if I let up on stuff my hands would heal. I have no health insurance so I can assure you that these meds are affordable! If you have not tried it, do! Hope you found relief already, if not then soon!

    • Thank you for your visit and adding some great comments about lupus arthritis. I, too am on prednisone and plaquenil, and they do help a great deal. Also, I am receiving Benlysta infusions, and have used chemo, transplant and another biologic drug in the past. It sounds like you are on an affordable reasonable treatment plan, and I am glad to hear you are under the care of a good rheumy. The relief comes and goes… that’s just how it goes with lupus!

  2. Thanks for responding to my blog yesterday. I love your blog; will follow. We Lupies have to band together to share our pain and our positives!

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