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Looking for some guidance
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KandP1998 posted:
Hi all,

I feel terrible for my husband. He's had joint pain for two months now, which came on suddenly. I've been researching information for him online, he had some blood work done, and talked to a Rheumatologist, who said he didn't have RA or Lupus and did not give a definitive diagnosis, so he's frustrated to say the least. He're are his stats:

-42 years old, decent weight, fairly active (runner)
-No real health problems in the past, but has high cholesterol (family history of high cholesterol)
-Pain is primarily in his hands and joints, worse in the morning and at night (when he turns in bed and tries to pull the blankets, he's in pain)
-Some swelling of the fingers, but not consistent
-Pain appears to be symmetrical
-More recently, he has had pain in both knees (for 4 days out of the last 60 he's been feeling like this)
-Experiencing fatigue, but not sure it's because he is not getting a restful sleep b/c of pain
-Running sometimes helps, but not always. Lately, he's saying that it hurts to swing his arms fully while running.
-I've helped him by soaking towels in warm water and wrapping them, and buying him Capsasin cream, but it's a temporary fix. He still needs to work, and can't be home all day to treat himself.

Doctor put him on Meloxicam (15mg) about a month ago, and an anti-malarial about two weeks ago. I want him to feel better, but having no clear diagnosis is hard because once we know what it is, we can treat it and he can feel better. At the very least he could have more good days than bad.

Sorry for the long post. If anyone has any additional information that they could share to help us out, I would appreciate it. Thanks so much for your help.
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bleeski responded:
Hello, First I think you must press the doctor for some kind of diagnosis or at least what your hubby is being treated for.A negative bloodwork doesn't always mean no RA.That is my case.He certainly sounds like he might have RA.I had a lot of the same symptoms.Normally the pt is given a trial period of steroids.If his signs & symptoms decrease of go away that tells the doctor he's on the right path. I'm surprised he was put on the anti-malarial before that. But it is a go-to drug to start with after the trial. That's what I was given but I needed to have another drug added a few months down the road. If he continues on the Plaquenil, don't expect a quick response. It can take weeks to months. There again sometimes steroids are given in low doses to help you over the hump.And sometimes it takes trial and error to get the right combination for each pt. I hope your hubby gets good treatment & becomes painfree.It's very important to have spouse support & I see he already has that. Come back & visit with us.We are all willing to help anyone who asks. Best wishes.
 
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xperky responded:
Hi there. Your husband's case sounds like so many others. It can take months or years to figure out what is really going on. The rheumy sounds good in that he is starting treatments early. It will be important for your husband to be aware of how he feels over the next weeks/months. It's also helpful to keep a diary of symptoms along with activities. This will be good info for the doctor along the way.

So many of the autoimmune diseases have similar symptoms. Luckily they are often treated with the same drugs. Over time your husband's blood tests can change and provide more info. It's hard to be patient through all this!

You are being a supportive spouse. That is very important while dealing with the pain, fatigue and all the unknowns. Kudos to you.
 
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KandP1998 replied to xperky's response:
Thanks for the support! I know it's only been a week since I posted here, but his symptoms seems to be getting worse.

-My husband now says it's taking longer to feel better in the morning
-His pain seems to be much worse in during the night
-His knees are feeling the paid more frequently, and he's having trouble walking at times
-The other day he was walking in the morning, and his index fingers turned purple (!)

This is getting very scary. Has any one had similar issues, and what else can we do? His follow up appointment is on 5/15, and we decided to get a second opinion with another Rheumatologist on 5/23.

Since I'm currently recovering from my own knee surgery, I've been told that I'm the "impatient patient" according to my PT, but we're seriously concerned about his condition, and how fast it's deteriorating. Just waiting for the drugs to work doesn't feel like an option anymore. What else is there? Any information would be greatly appreciated. Thanks!
 
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An_246765 replied to KandP1998's response:
Hi KandP1998 ,
I'm sorry to hear about your husband and that things seem to be getting worse. Like the others have said these rheumatologic disorders do have a lot of over lap and it's not always clear immediately what exactly is going on. Doctors may be hesitant to give an immediate diagnosis because of this. I think it's great that you have an appointment with a different rheumatologist for a second opinion already. It never hurts to have a new set of eyes go over everything.

In my own personal experience my symptoms started out of the blue and were very intense but I wasn't having a lot of morning stiffness initially. The stiffness, fatigue and joint pain got worse for several weeks before I started on medications and lasted for a good 8 weeks after I started on Plaquenil and prednisone. I was lucky and responded well the Plaquenil and it was all I needed but my doctor was willing to start me on Methotrexate if I wanted to feel better faster. I was afraid of the side effects of methotrexate and preferred to give the Plaquenil as long as I could, thankfully it worked.

As far as the finger turning purple, did it turn white first? There is something called Raynaud's phenomenon that can be associated with connective tissue diseases that causes extreme constriction of the blood vessels in the fingers and toes when the extremities get cold or the person is emotionally upset. In Raynaud's the finger or toe usually turns completely white first but then can turn blue or purple. I wonder if that is what is going on. My Raynaud symptoms preceded my RA diagnosis by several years.

I hope your husband finds some relief soon! And hopefully an answer with it. Hang in there, your support means so much to your husband I know! Just try to be patient and supportive, we all need people like you!
 
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xperky replied to KandP1998's response:
KandP, it's good you have some appointments in the near future. Be sure to take along a copy of the lab report for the second opinion. Ask to get a copy at the followup. These reports are good to keep in a file. I know my pcp wants me to fax them as well.

Sometimes we are offered an rx of low doses of prednisone to keep us functional until the DMARD's kick in, or to get through a flare up of symptoms. Some people respond well to 5 or 10 mg a day with little or no side effects. Some, however, don't like the side effects. Of course there are risks with long term use. Some doctors prefer prednisone bursts versus low doses over longer times. There are arguments for and against.

The former poster mentioned Raynaud's as an explanation for the purple fingers. This is another symptom to tell the doctors. It happens to me, but rarely.

Trouble walking is pretty scary stuff. It really lets us know we are sick! Your husband may feel like being a little less active than normal until his symptoms improve. It's good to move enough to keep from getting stiff, but not so much as to cause extra pain, for now.

Keep on supporting him through all this. I hope he is as supportive to you through your knee PT! You are great.
 
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KandP1998 replied to xperky's response:
Thanks so much! Knowing that we are not alone in this and reading the posts make me feel better. I will have to ask about his fingers turning white first; not sure about that. Next time he goes to the doctor, I will remind him to get all of his previous blood work, and ask about the steroids; at the very least, to get him feeling better until they figure out what's wrong.

Because of both of our health issues, we were supposed to run races this weekend (he the 1/2 marathon, me the 10K), but we had to cancel, so it's a little depressing. Hopefully we can get back into some sort of fitness routing soon; with the nice weather coming to NY, it would be nice to get out and do something for a change.

Hope everybody else is feeling well. Thanks again for your information and kind words.


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