UC and Joint Pain - a Personal Odyssey. READ!

Good Morning Boardies,

This may serve as a wake-up call for some of the members. And I think it's important enough to start a thread. Someone mentioned far down in another thread DO NOT IGNORE joint pain. I checked mine off as "oh well, I am getting older".

But when I mentioned it to my GI it set off his alarm bells. 10 questions later he was pointing me to a Rheumatologist "stat".

I was surprised by the length of that first Rheumy appointment. He poked, prodded, questioned for 90 minutes and then sat down and wrote a BUNCH of orders for lab tests and x-rays. He said to start with Celebrex 1 or 2 times a day.

Celebrex alone did not do the trick and I wanted to hear my diagnosis so I went back in 30 days. I have Colitic Arthropothy. Well, enquiring minds like mine want to know so he needed to expound a little.

We UC'ers have a crummy immune system. We have inflamation. We're ripe for the taking on joint involvement, lung involvement....well involvement.

Multiple lab tests and lung x-ray suggested that he could be aggressive in my treatment.

I'm taking Celebrex twice daily and a whopping big shot of Methotrexate every Friday. It just gets more and more fun all the time!

Do I feel better? Yes and no. Some days after I work out the initial stiffness and get moving I have a GREAT day.

Other days I just am resigned to having "grandma's body" at the age of 53. 'Cause like all of you there's no OTC product to take to ease off the pain. Rheumy said it could take six months to get the full effect so I'm hanging in there. I'm only 3 months in and he just upped the MTX by half on Friday.

Rheumy said quite clearly - YOU are LUCKY your GI sent you in here. Early and aggressive treatment will keep you from joint deterioration and keep you moving. He said we WILL find the right combination and have you pain free again because we caught you EARLY!

EARLY AND AGGRESSIVE TREATMENT is the key.

I feel blessed to have alert and compassionate health care professionals on my team.

If you wake up with pain and stiffness that takes longer than 30 minutes to resolve you may have this condition. Remember Early and Agressive treatment may allow you to dance at your grandchild's wedding.

Sorry so long. I'm feeling the need to reach out today because it's important!

**Please edit signature to 10 lines or less (including blank lines)

Post Edited By Moderator (tjf) : 4/13/2008 6:02:40 AM (GMT-6)

Hi Sherry,

Bloodwork confirmed the high inflammation. Other tests weren't as definitive.

Chest X-RAY was clean as a whistle.

Rheumy wiggled and pressed all my fingers, toes, etc and asked literally 100 questions before he told me I'm a "classic" case.

The internet was VERY useful once a diagnosis was provided.

What's classic? Warm joints. Symmetrical involvement with hands, wrists, feet, ankles, knees, elbows and shoulders (not all in most cases). He says the spine is generally spared. Stiffness lasting 30 minutes or longer in the morning. Pain upon rising after sitting for an extended period of time. Lots more.

Curiously one of the medications used for treating this condition is sulfasalazine! So some of the boardies in here may already be "treating" their problem. Not me, it gives me violent headaches.

Happy Sunday!

I'm heading over to edit my signature as it's too long. Thanks moderator :)

I was just wondering on how it presented itself because I'm sort of in a pickle myself and so far no doctor can give me an answer. I have been to so many doctors lately that I feel like I'm living there! The latest doc I went to was a rheumy and boy was that a visit from hades! Hmph......don't get me started on that one again! LOL But I've had xrays and MRI's both of which showed nothing wrong with my lower spine and hips, yet I'm in almost constant pain. I am scheduled for an EMG next week so I will see if the pain is nerve related or not, but I'm getting quite frustrated. What's sad is that I too feel like I'm in a Grandma's body and I'm only 38!

Interesting diagnosis. I've gone thru 3 or 4 differing periods of joint stiffness, but bloods have always tested pretty much o.k. My gastro, who subspecializes in IBD, recommends testing vit D25 level-- because under a certain level of D, one's bones likely do not absorb calcium properly. What were your lung symptoms, Rot Gut? / Old Hat (nearly 30 yrs with left-sided UC ; currently on 3 Colazal daily for maintenance of remission, + daily Centrum Silver multivitamin, 1 tablet Glucosamine500/Chondroitin400 with gastro's blessing)

Thanks for lung explanation, RG. I've actually been doing better jointwise since taking the 2 supplements mentioned above. For a good while I had been taking the AARP mail-order multivitamin, which may not have been potent enough-- because I definitely started feeling peppier about 3-4 weeks after switching to Centrum Silver. It has 500 mg of vit D per tablet & somewhat less A than most multis-- which my gastro thinks is good. Of course that fact that Colazal helps me stay in remission from UC longer than earlier 5-ASA meds makes a big difference, 1st & foremost. Best wishes for your recovery; unfortunately, elementary schools can be great breeding grounds for problem microbes, especially when overcrowded. It's good that your Rheumy proceeds cautiously to explore all bases. / Old Hat

Isn't Celebrex an NSAID?  Aren't we supposed to stay away from those since they are so hard on the intestines?

Jane 123,

Rheumy is not thrilled that I'm taking 2 Celebrex a day and wants me down to 1 as soon as the increased dosage of Methotrexate kicks in. He's just not willing to leave me with no relief until then and we're not ready to go to a mixed cocktail of MTX and Enbrel due to cost.

He has lots of experience with us UC'ers and never fails to ask me about my "other symptoms" since it' represents the WHOLE me.

I have one shot at .7 under my belt now. Wish me luck - I'm trying to live happily ever after here!

Best of Tuesday to you!

Rot Gut