HealingWell
Search Close Search
☰

UC in remission - suffering from joint and muscle pain

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/5/2017 3:04 PM (GMT 0)
Hope you are are well. Long story short, I have ulcerative colitis since 2005 and it went into remission 2012 and thankfully still is. Around 2015 I started developing massive joint and muscle pains, exhaustion, hair loss and memory issues. Did rounds of blood work and had a positive ana. I was then referred to a rheumotologist. All other labs are normal. I felt really good on prednisone. He gave a low dose for a couple of months. He believes it is inflammatory. My GI felt I should get a second opinion since I did not have a clear diagnosis. I went to a respected hospital (Penn Presperterian) and saw the pa there. She says since all other labs are negative, it is fibro and not inflammatory. Then suggested that my uc could be giving me the issues. But that is in remission. I feel lost and confused. I am not getting relief with amatryptiline that she put me on for Fibro. She also said I should stop the arava that my first doctor had me on. I did start aqua therapy and feel as if I am getting weaker after 1 month. Did anyone have their uc cause inflammatory problems like this?
Posted 9/6/2017 2:25 AM (GMT 0)
Lisabeans I feel your pain.
Exhaustion has been with me since the onset of my UC dx. Doctors have labeled me as depressed, anxious & in later years as having fibro.
I've been in remission for decades and avoided doctors, other than my gastroenterologist for years. about 5 years ago had a full GP examination and I too have a positive ANA - after extensive blood work with a local rheumatologist and extensive testing at Johns Hopkins - nothing explained my aches, pains and fatigue - my blood work shows nothing abnormal - even my inflammatory markers are negative. I was dx with lumbar osteoarthritis after I insisted my local rheumatologist xray - I also have extreme pain/stiffness in my hands and feet (sometimes hips, shoulders & knees) - even a few of my finger distal joints have become deformed but I refrain from additional imagining because, fact is, I'd refrain from more toxic Rxs (other than my Asacol). I try to stay mobile, get adequate rest and eat antiinflammatory foods (although I cheat now and then) which seems to help. I'm sure that entering menopause, this past year, hasn't helped any of my joint issues.
Crohns & Colitis UK says:
"Many people find that their fatigue improves as their IBD improves. However, for some, there can be a time lag of weeks or even months before they regain their normal energy levels. Sometimes the fatigue does not go away even when the IBD seems to be completely under control. Fatigue continues to affect over 2 out of 5 whose IBD is in remission"
I suppose I'm just one of those 2 out of 5 and perhaps you as well. Good luck - rest up.
Posted 9/6/2017 10:49 AM (GMT 0)
I had rosacea, sinusitis and joint pain when I was symptomatic. Interestingly as my symptoms faded----all of those other things have now, too. This is significant because those things were affecting me for about 20 months.

Long story short, I was resisting my diagnosis and making false assumtions (aka wishful thinking) that I just had parasites, a food allergy, candida or something other than UC. I tried a ton of herbs and diets, etc-----finally gave in after 15 months accepted the meds and after 4 months or so with mesalamine (both ends) symptoms have subsided.

The reason I am replying is that what IF some of the other therapies I am doing myself are what have helped those other issues? I am following an antiinflammatory diet, drinking homemade ginger tea twice a day and taking good probiotics (both formulas and homemade).

Maybe the reason I am going into remission is actually more due to these things and not 100% the meds?

Maybe try out a few adjunct things? I wouldn't just assume myself to be one of the "2 of 5"....because there are just so, so many things to try first. That joint pain I had was a beast, I know what you are talking about, and it's 100% GONE now.

Good luck !
Posted 9/6/2017 2:26 PM (GMT 0)
Good points MarjieKay
I'm a bit nervous to try probiotics because who know which ones we need - gut balance is so tricky and would hate to think that I'm ingesting something that'd actually exasperate rather than improve the balance. My IBD stays in remission soley with oral delzicol/ asacol (2400 mg/day)
I'm up for drinking ginger tea & I'll give the umass ibd-aid a go ... Thanks!
Posted 9/6/2017 4:33 PM (GMT 0)
I also developed quite painful arthritis while my UC was in clinical remission (I still had loose watery stools and some abdominal tenderness, but clear scopes, no bleeding, etc). While I had a mildly elevated ESR all other blood tests were completely normal. In desperation I went on SCD, started taking tumeric and started to take more probiotics as I didn't seem to have a lot of medical options. In my case, all three helped to take the edge off the arthritis to a sufficient degree that it doesn't bug me overly and my rheum says it doesn't appear to be progressing. I also stopped having loose watery stools.

I don't think diet is the cause of my arthritis, so I don't consider it a cure, but it gave me something to try when I felt I had no options and it has certainly helped. I do believe the dysbiosis we suffer from can have knock on immune effects and diet modification can help reduce the dysbiosis (some). Just a theory and I'm happy to be proved wrong, but that's my latest.
Posted 9/7/2017 3:02 PM (GMT 0)
Thanks. I have been in remission with my UC since 2012. No issues whatsoever. I was taking lialida to keep it in remission. In 2015 is when all my joint pains began. Since I responded well to presdnisone my rheumatologist feels it is inflammatory. My new rheumatologist feels it is fibro and not inflammatory. I told her I need something to help keep the colitis in remission since she made me stop my arava (which helped the pain about 70%). She won't prescribe anything since she feels my pain is not inflammatory. She also said my UC could be causing the pains. How can 2 doctors see things so different. I did start taking the arava again since my GI doctor says it is good for the UC as well. This is so confusing and exhausting!
Posted 9/7/2017 3:41 PM (GMT 0)
so you are on no UC meds currently ?
Posted 9/7/2017 3:42 PM (GMT 0)
My GI doctor said whatever inflammatory medication my rheumy puts me on works for UC as well. So I just started up the arava again.
Posted 9/7/2017 3:53 PM (GMT 0)
Why does your new rheum think it isn't inflammatory? And if it isn't, how is it supposed to be treated? From your post above, you sound like you're seriously suffering.
Posted 9/7/2017 3:56 PM (GMT 0)
The new rheum thinks I just have fibro. I am suffering a lot especially worse since I went off the arava for 6 weeks. I am so confused and frustrated. My joints are so bad especially my knees, elbows and ankles and shoulders.
Posted 9/7/2017 4:16 PM (GMT 0)
And does she offer you anything that can help? Have you pointed out to her that you felt better on arava?
Posted 9/7/2017 4:27 PM (GMT 0)
Lisa, have you given anymore thought about getting a 3rd opinion with another rheummie? With one saying you have RA & another saying you do not, its time to bring in a new dr.. Your 1st rheummie gave the dx based on a positive ANA which is not reliable. There are false positive ANA's & that is not the only test available to dx RA. You really owe it to yourself to get a 3rd opinion & have someone to give you an accurate work up & diagnosis. Until you do this, you will remain in limbo on what you have or don't have.

Take care.
Posted 9/7/2017 4:44 PM (GMT 0)
My first didn't diagnose me with ra. He is leaning towards ra based upon my symptoms. He is ultra conservative and slow to change medications and has not ordered any tests. That is why I went for a second opinion. I am considering a third opinion but not sure who to go to. I am researching doctors and asking friends if they know any.
Posted 9/7/2017 9:44 PM (GMT 0)
have agree with the susie - time to see someone else or two -

just curious - how many different meds did you try in 7 years before you achieved UC remission ?

how long have you been on zantac & Amitriptyline ?
Posted 9/7/2017 9:59 PM (GMT 0)
My UC is in remission with the Apriso. I have a lot of joint pain and arthritis in my hips/pelvis due to the UC. I have found turmeric, Glucosamine and collagen keep the pain to a minimum. I have tried to stop these and the pain returns. It took a few weeks for them to work but I swear by them for joint pain/inflammation.
Posted 9/7/2017 10:18 PM (GMT 0)
I was on Lialada. I was lucky that my uc is only in a small portion on the left side. My GI does not believe the pains I have are from UC.
Posted 9/7/2017 10:42 PM (GMT 0)
Lisa, I am gathering you are not on any maintenance meds for UC. I did see your post in the RA forum that your gi wants the rheummy to start you on Humira. That is his job since he treats you for UC. Since you don't have a true dx of RA, why does he think another dr should put you on Humira? If you read in this forum joint pain happens even in remission.

I don't know, but if this were me, not only would I get in with another rheummie, I would also find myself a new gi. In this day & age it is not uncommon for a patient to advocate for medical care. Keep in mind we hire these drs, they are on our dime. Personally, I think you are being fobbed off by both drs & only you can take the steps to correct your situation. I am far too old to have drs jack me around, especially when its on my dime. If you have private insurance you can go online to see what rheummie's are covered under your plan. You already know it takes for a new patient to be scheduled & I would not waste another day without finding one.
Posted 9/7/2017 11:51 PM (GMT 0)
My GI didn't say Humira. He was working with me and the rheumy to find one medication that can keep UC in remission as well as treat my pain. The new rheumatologist said to go on Humira if the GI wants me on something but she won't prescribe it.
Posted 9/8/2017 12:26 AM (GMT 0)
Sorry, I did misread your post. I can understand her saying ask the gi to start you on Humira. It may or may not help with the joint pain. Its a flip of the coin.

Hopefully eventually you will get some answers, for your sake I sure hope so. Take care.
Posted 9/8/2017 12:53 AM (GMT 0)
Thanks. I actually started taking the Arava again per my GI doctor. I seem a bit better with the pain. I was re-evaluated at aqua therapy today. He said I am showing improvements and hopefully in a few weeks I can start some land therapy. Made my day! Small strides equal large smiles!
✚ New Topic ✚ Reply