Anyone Else have Joint Pain that Persists with Crohn's?

[TvolNbama]

Trying to understand more about the joint pain associated with my Crohn's diagnosis was the reason for my finding this forum. A link to a post showed up in my search. I started searching outside my typical Mayo Clinic, and "safe sites" (the ones that aren't quacks and cooks) for medical info, because I needed to know that I wasn't going nuts.

A bit about my story:

In retrospect, I know that the joint pain began about three years ago. It first showed up in conjunction with another "event" in my health history. You see, I had a staff infection that started in my hand (a spider bite, following a bicycle wreck... Yeah. I know! I have crap for luck! Exercise can kill you! Don't get me started!... Seriously though, I nearly died from this infection, and I saw someone on my hospital floor who did die from one very similar. Nonetheless, (long story/short version) the staff infection moved into the bone in my left foot. I ended up with a pick line to deliver powerful IV antibiotics, and that caused clots to form, and that nearly killed me too! They moved to pic line to my left side, and I finished up the treatment, and got rid of the infection, but had to go on blood thinners for several months to insure the clots were gone.

I still hurt all over, and during all of this, the Infectious Disease Specialist also found that I had gout. For those who may not know, gout is very painful, but is a treatable form of arthritis. I was put on meds to lower the uric acid levels. The gout is controlled with diet, and Allipurinol to keep the levels down. My levels were around a 10 (9.6 and that is very high), and I had quit drinking for over 2 years at that time. So, alcohol did not play a role in my high levels.

This all occurred 3 1/2 years before I was diagnosed with Crohn's (which was this March 2012). Due to a B12 and Vitamin D deficiency, I was put on intramuscular injections of B-12, and given a high dose of prescription Vitamin D to keep them in line. The pain in my feet did not go away completely, and remained a mystery for some time. I still have to give myself those injections, even today. The doctors kept checking my sugar levels, thinking "diabetes", but that wasn't the case either. Then the pain began to spread from my feet to my knees, and then to my hips.

Then the Crohn's flare hit. I was diagnosed in March with Crohn's after a horrific flare-up of the disease. The first noticeable signs of the disease were in November. I had a little blood when I went to the toilet. I've had a hemorrhoid before, and wrote it off as that. It seemed to be the same thing. Then in February while on a trip to the beach, the bleeding got much worse, and scared me to death. The subsequent scope revealed a clear case of Crohn's, and extensive disease in both the small and large intestines. I am NOT a good candidate for surgery, should other treatment fail. So, they started me on Remicade right away, along with Asacol, and I was hospitalized a few times to give IV steroids and other meds along with IV fluids for the dehydration due to Mal-absorbtion issues due to damage of my intestines.

Through all of this the joint pain continued to spread, and worsen. However, at the time when my intestines were primary concern, the joint pain was an afterthought. After a few hospitalizations, and steroids, and now Remicade, the GI issues have started to go away. The bleeding, and shedding stopped after a few months, but the joint pain continued. It persists, even today (7 months later).

I went off the Remicade for a few months in order to treat a sinus issue that resulted in numerous infections, and had to go back on steroids for that surgery. The steroids, and pain meds helped the joint pain for a bit. However, the steroids and pain meds were only for the surgery. After getting off of those, the joint pain started to get worse again. It began to spread to my elbows and now my hands. So, my GI doc sent me to a Rheumatologist. I was started on Sulfasalazine in addition to the Asacol, and was told it could take MONTHS for it to have an impact. Because I have had so many steroids, they didn't want to keep me on them any more. The long term effects of that are not good. But waiting months for the Sulfasalzine to MAYBE WORK? THAT WON'T DO! This crap HURTS! It, literally, takes my breath away, and keeps me stressed, and hurting ALL THE TIME.

My Rheumatologist told me that the joint pain should go away a few days after they start the Remicade again. Well, it didn't. It is actually worse still, and has now spread to my hands, and fingers. That isn't a good thing, because I am a photographer, and a pro camera isn't light. I need my hands, and elbows, and it has been difficult.

I finally had to talk to my Family Practice Dr. about pain management, as I await the Remicade, and Sulfasalzine to HOPEFULLY have some impact on the joint pain. I have to take Lortab to function at all during the day, and that only blunts the pain. Without that, I am inclined to sit, or stay in bed and give in to the fatigue, and just sleep all the time. I think I could, actually, sleep away days. It is a miserable existence, and I don't do well with sitting still, and doing nothing. It isn't in my nature at all!

I make myself get up a go, and push through as much of this as I can. I'm sure people think I have turrets when I am in a store and scream from a random sharp pain at times. It's embarrassing to have people asking me, "Are you alright?" all the time! But I can't help the times when it happens. Otherwise, I try to just grimace and suck it up to keep from calling attention to myself. I'm tired of that, and am at a loss for what else to do, besides wait. I don't know what other choice I have.

I've heard some say that they think the Remicade was making their joints hurt worse. Personally, I don't believe it is the Remicade that made it worse FOR ME, because it actually helped stop the "Razor Blades" in my stomach! So, I KNOW the Remicade works for that part of it. It just didn't work RIGHT AWAY, or fast enough for me! It took months to stop the bleeding and watching my guts come out (literally).

So, I am not planning on advocating to my Dr. the stopping of the Remicade. I want to give it a chance to stop the rest of the pain. Besides, as bad as I hurt now, I DO NOT want to go back to the feeling of razor blades in my guts. That was a nightmare, and to think of having that along with the level of pain I have in my joints now? NO WAY!

I know that I am rambling here, but I just want to know if there are others who have had a similar experience with the joint pain in conjunction with a diagnosis of one of the forms of Crohn's Disease? Is there someone who has found relief from the joint pain that has been on the Remicade longer than 4 months? What else, besides steroids, and pain meds helped achieve lasting relief, if anything? Surely, I can't be alone in this ordeal.

Current Treatment:
Remicade
Asacol
Sulfsalzine
Prozac
Vit. D 50,000 UNT
Vit. B-12 IM Injection 2x/month

 

[Susan2]

When my Crohn's was flaring badly I had extreme pain in my knees and ankles and they were very stiff as well. I had to go down the stairs sideways, like a crab. :crab:

 

[David]

Hi there and welcome to the community I'm so sorry to hear about your joint pain, that must be truly terrible. Various ideas for you to discuss with your doctor and some questions:

1. You're definitely not alone. Take a look at our arthritis forum located here to find kindred spirits.

2. Take a hard look at the Asacol. It can cause joint pain in some people and being on the Remicade and Sulfasalazine, it's probably not doing much anyway.

3. Yes, Remicade can cause joint pain too. However, I believe it is occasionally due to secondary infections that take advantage of your immune system while on the Remicade. For example, on the Remicade homepage they warn about fungal infections while on it. And fungal infections can lead to fungal arthritis (mycotic arthritis).

4. You mention the vitamin D deficiency. What is your current vitamin D level as of last test and when was that?

5. Have you had your magnesium level tested?

6. This will be a hard sell, but ask to have your selenium levels tested. About 25% of people with Crohn's are deficient in selenium and selenium can play a role in arthritis including rheumatoid arthritis.

7. Have they run any bone density scans on you?

8. Are all your blood results within normal range?

9. Have you tried any dietary changes?

Let's start there

 

[TvolNbama]

Wow. Thanks for the feedback, David. I really appreciate the time given for quality feedback. That is very kind, and very much appreciated.

Several Dr. have run blood tests, and so many things have been checked, I'll have to go over all of them online to see what in your suggested list was covered. I also have routine blood work for some of the meds I'm on now as well. So, I will look in to your suggestions.

Separating out the "types" of pain and locations of them all can be difficult, once there are so many at play. Right now, I'm just thankful that the "pirhanna" are no longer gnawing at my intestines (that is the best way to describe my experience with the Crohn's pain). So, I am trying to keep a SHORT list of necessary Drs. who will all correspond and work together. So far, so good on that front!

My Rhumatologist did tell me that the Sulfasalazine and the Asacol will be a bit redundant, once the Sulfasalazine starts working in a couple/few months. I'm hoping I can get off of the Asacol to shorten my list of meds. I'll cross that bridge with my GI doctor, as he started me with the Asacol, and the Sulfasalazine was later prescribed by the Rhumatologist. As you know, Asacol is more localized in its release method to affect mostly the intestinal region. Sulfasalazine is not so targeted, and can work for both intestines, and the joints. So, I'll see what they recommend there in the coming weeks.

Regarding the "secondary infection" note in your post, I've wondered that as well. The thing that scares me most is a recurrence, or reemergence of the MRSA infection that I had three years ago. That was a bugger of an infection. The Infectious Disease Specialist did say that is possible, and that would REALLY suck to have again on top of all this. Really bad combination of things to have: Crohn's and a septic infection from a staph bacteria! I try not to stress over something like that which hasn't occurred, but it lingers in the back of my mind, nonetheless.

They did find a fungus in a culture taken from my sinuses, and I was subsequently sent to yet another ENT who specialized in such things for the sinus surgery a few weeks ago. As you probably know, we aren't supposed to have fungus in our sinuses. That, also, made me wonder about fungus characteristics and manifestations relative to being treated with Remicade.

There is so much to watch, when we enter into the care of so many physicians. While I know that they are professionals in their field, I am one to advocated "checking their work" for my own well being. I have fired a University Dr. in front of his class before for negligence, and inept practice when he and his pupils walked into my hospital room. So, I have no problem speaking up, asking questions, and expecting honest, non-condescending answers from the "professionals" who are treating me.

That would be a good topic, if it hasn't been covered on such a forum as this...Ummm...not the "firing your Dr. part"...that guy nearly cost me my life. I had every right, and got a standing ovation from the nursing staff when he left the unit. I'm talking about people NOT being afraid to ask, and expect answers in a timely, and reasonable manner from our providers. Too many times, I have had instances where if I, or my wife, had not SPOKE UP, it would have cost me my life. Anyway, something to think about...

Have a great week, and thanks again for sharing your insight and suggestions. I appreciate your time, and sharing of your experience.

 

[David]

When they cultured the fungus in the sinus, did they tell you what it was? There are certain kinds known to cause the arthritis and take advantage of Remicade.

Oh man, if you received a standing ovation, that must be one heck of a story and I'd love to hear it some time

And yes, I think it is SO IMPORTANT that we empower ourselves and each other to become advocates for our health. I think it can make a huge difference and in your case, it was a life saving difference.

You have a great week too. We're here for you anytime you want to stop by.