This started some time some time during the winter and just keeps getting worse. First, it was a wrist, then an elbow, then a foot, then the other wrist, then his lower back, and now today, his knee!!!! These joints (areas) get swollen and inflamed. He's seen a foot and ankle specialist, an orthopedic doctor, and more recently, a rheumatologist. His pain has been nearly unbearable, and 600 mg of ibuprofen doesn't help much. He's got bad kidneys and slightly damaged liver so can't take certain drugs. I doubt the doctor would put him on MTX. The rheumy gave him a taper of prednisone a couple months ago and then continued it at 5 mg/day which isn't doing any good! The man is in rough shape! :-( He retired May 1, only to feel like crap every day since.
Oh, GrandmaJ, that is not good news. Not not not. Which of the doctors (foot & ankle, ortho, or rheum) do you think is getting closest to the right diagnosis? When does he go for follow up, and to whom?
Does the swelling come and set in, or come and go? And how do you know at the prednisone isn’t doing any good? Maybe it isn’t doing enough good. What happens if he stops it? And what is your PCP saying about all of this?
Miserable, this. Retirement should be a happy time, and here he is saddled with pain and uncertainty. I’m so sorry – when one is suffering, you both suffer, and you’ve had enough of your own misery. Let us know how it goes.
The swelling sets in and lasts for anywhere from 4 to 8 weeks. Later today he told me now one of the joints that gave him trouble a few months ago suddenly started hurting again today--in addition to his back and knee hurting. (I can't remember which one, his elbow a wrist or his foot!) I messaged the rheumy this morning and he recommended starting hydroxychloroquine 400 mg by mouth daily. Will need a baseline eye exam completed within the first 3 months. Can also try prednisone 20 mg for 5 days, 15 for 5, 10 for 5, etc.....
After I received the doctor's message I remembered there needs to be a new referral to this rheumy from Dave's primary doctor (yes, even if he's just writing prescriptions) because our insurance sucks. So I messaged the rheumy back (tonight) about that, so there will be a little delay in getting the meds.
It so worries me that he'll be taking a med that requires an eye exam! What the...? Dave has so many things wrong with him, I feel like his health is going south real fast. :-(
Thanks, Seenie, for your very kind words. He was looking forward to retirement for a lot of years because he never liked his job, and this was not expected and is a huge disappointment.
Plaquenil can cause retinal toxicity, it is true. But it takes a long time for it to happen, and in the meantime, he will be monitored. I was on plaquenil for almost 7 years with no trouble. My eye doctor said that he had only ever seen one case, and it was someone who had not been monitored and had been on plaquenil for over 15 years.
I hope that it works for your husband. It definitely worked for me for a few years, especially with the fatigue.
Hi GrandmaJ! Oddly I get service while camping. Lucky he is to have you in his corner with so much experience dealing with all this! Don’t get me wrong every bit of it sucks and Seenie is right retirement is supposed or expected to be less stressful and reduce daily pain. Sorry to hear he’s doing worse but stay with and stay strong best outcome is he gets the right regimen and does as well as you are.
Thanks, Stoney--it's always nice to get reassurance from someone who's been there, done that! Also, a friend sent me a link about a different kind of arthritis that's similar to RA, and it nearly fits my husband's symptoms to a tee. I take back his pain/swelling lasts 4 - 8 weeks...sometimes it only does last a few days. It's always different but with the same sudden onset and nearly unbearable pain.
Thanks, Rachael, it is hard to think of not being able to do the things we enjoy if he's suffering too much. With my PsA it was a more gradual onset--generalized pain and stiffness almost everywhere, but not sudden acute attacks like he's having. The only acute pain I've had where I was bedridden a good amount of time was my back this past fall and winter...my feet kept me in a chair more than normal, too. But, he does make a lot of noise (grunts and groans) when he's in pain along with talking about it almost incessantly. IDK if that's a guy thing or what. When I'm in pain I feel like he wouldn't hear me if I complained, so I try not to say much about it to him--that's what I have LWPsA.org for!! Hehe