The sun will probably rise

Hello to all. It seems like everyone’s experience with RA is a bit different than anyone else’s and I’m no exception. I’m a 68 year old man whose involvement with auto-immune diseases began in 1999 with a diagnosis of polymyalgia rheumatica. That became, or always was, palindromic rheumatism with spice provided by an ample amount of osteoarthritis. Recently RA was added to the mix but as my original rheumatologist had retired rather than put up with massively increasing governmental regulation – and may the feds RIH for what that’s worth, and I know what it’s worth – so I spent a few years dealing with my local doc, a GP. Anyway the rheumatologist I switched to diagnosed the RA and started hydroxychloroquine to go with the prednisone I’ve now been on for 16 years. Being analytical, I’ve learned a few things and figured out some others since 99.

FWIW I’ve had a hip replaced, the metatarsal and great toe joints fused on one foot, had carpal tunnel surgery on both wrists and, thanks to the prednisone most likely, cataract surgery on both eyes. The bleat goes on. My substantial experience with pred has been a figurative roller coaster boosting the dose as needed for flares and then tapering to get as low as possible: up and down, up and down. As is well known, the pred is marvelous for dealing with the symptoms but does nothing for the underlying cause. Using it for flares also proved problematic as it took longer and longer to taper to my maintenance dose. Recognizing this, I’ve also used oxycodone since 99, mostly at night when my immune system seems to awaken and come out of hiding to attack me literally anywhere. I was very concerned with the potential for addiction when I started so worked out a routine where at least twice a week for a 30 hour period I will not use oxy at all. Since this is at night I get by with sleep medication and acetaminophen if needed for those nights. I’ve never become addicted nor has it become habit forming to the extent I would find it difficult to abstain. I know that as sometimes I do not need the oxy for several nights in a row and have no trouble not using it. For me anyway this works. For several years I got by with nsaids rather than pred but my kidneys started to object so my rheumatologist said no more and I would be far better off just staying on pred. I also switched from Roxicet, which was prescribed when I first started on oxy, to straight oxycodone as I can take acetaminophen with the oxy if needed but not have any in my system if I don’t. I will also mention that MJ, legal in Colorado where I live, is very helpful at night although far too distracting for daytime use. Another discovery was that a hospital type bed that allows me to raise the upper and lower body sections separately has helped a lot as it allows a major change of positions when some body part or the other is complaining and being obstreperous.

Most of the people on this forum seem to be experiencing much worse pain and other symptoms than I do so lucky me, for now. If I’ve learned anything meaningful from my personal experience it is that every night is a new adventure that must be addressed on its own terms. There will be hideous nights but most will be better than that and, so far, the sun has arisen every morning.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


View Comments (1)
  • Mariah Z. Leach moderator
    4 years ago

    Hi Sneed~

    Thank you for taking the time to share your story. I think you hit the nail on the head – everyone’s experience with RA is unique. But I think we can all also find similarities and ways to relate to each other, which is why sharing our stories can be so helpful. Best of luck to you as you continue to face your RA!

    ~Mariah~ (Site Moderator)

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