Possible RA now with UC

Hello Everyone and Hi Quincy!

It has been a while since I have been on this forum, the format change looks good.

Was holding well for a long while..a change in meds from 1.2 g mezavant 1 pill 3x/day back to 400 mg asacol 1 pill 4x/day in April 2021 due to heart palpitations that I was having. No more heart palpitations on asacol.

Since July 6th, I am having joint stiffness and pain on my fingers, wrists, elbows and knees, off/on lumps on elbows, wrists and right knee. Knuckle joints just below fingernail ache and bit lumpy, especially the 2 ring and 2 point fingers. Mornings are a bit difficult. I asked my pcp for bloodwork, done July 13 2021 rheumatoid factor is 214, normal range is 14, nuclear antibody 1:160, normal range should be 1:80. I dont know much on exact details but to me, it points to being positive for RA. I am going to guess this is part of the UC issue. Doing a lot of reading up on it. I honestly did not know this was a possibility with UC. (30% of UC'ers may develop this?)

I have my every 3 yr colonoscopy on August 11 2021 and I am writing up questions and info for the GE. I usually do this before each visit. My pcp is on holidays and will call me Aug 10 2021.

Have been taking 1 pill of 200 mg advil per day and meds. I know advil is not good for uc but it helps. Currently cautiously experimenting with voltaren (also not good for uc) and alternating with cream thc/cbd as needed. These get me through the day.

Been using entocort buesonide enema (2.3g) 3 days per week (every 2nd day) as my uc is probably not under control as I thought (not flaring with diarrhea or blood though) and have noticed it also helps with the joint inflammation. I read glucocorticosteroids not best for RA with high doses, long term use.

So I have so many questions for pcp and GE about inflammation control, meds, diet, heart health, cholesterol, etc. I am considering anti-depressants at some point also.

I am doing my best to keep in good spirits, stil going to work, glad my employer is considerate of my condition.

Any suggestions would be helpful!
I love this forum 💚

Hi Kat!

Neither point to RA specifically...
Is the test antinuclear antibodies or nuclear antibodies? Im assuming ANA...that would indicate autoimmune and can also be high with UC, lupus, liver disease. Are all liver function tests OK?
The RF high indicates inflammation, but not specifically RA.
What other tests did you have that would indicate a low?

I suggest strongly that you stay off the ibupro0hen and naproxen...You could try Celebrex. I've been on it for a while. Other options could be to try Low Dose Naltrexone.

You will definitely need to be tested further re RA...what knuckles are affected on your hands?

q

c reactive protein 5.6

urate 223 (with a note) potential interfering substance present

nuclear antibody titre 1:180, (there is a note), homogenous pattern is suggestive of SLE, chronic autoimmune hepatitis and juvenile idiopathic arthritis.)

test performed using indirect immunofluoresence antibody technique

(Another note), follow up tests may include anti-dsDNA or ENAs if not already performed.)

I had moderna vaccine march 31 and that activated the UC, and a migraine thay eventually calmed down in time for 2nd moderna vaccine april 28 with no side effects.

I forgot to add I have a prescription of 40 mg pantoprazole. I am taking it off on
for stomach acid.

Get your PCP to refer you to a rheumatologist if that hasn't already been done.

Good to hear. A rheumatologist will evaluate your joints, maybe order x-rays, will order further blood tests, and possibly urinalysis.

It's quite possible that you'll need a treatment for this. They'd often start with NSAIDs, but with your UC, that's generally not an option. Next step might be something like methotrexate. If you can tolerate it well enough, it might help your UC and this (likely) RA.

Katkat,

I will tell you my own story which is similar to yours. I was in the exact same position as you in 2013. Same symptoms and same bloodwork and I suspected RA on top of my UC. However, and this is important, my UC was flaring back then as well and that ultimately was what was causing my joint issues. I started Imuran and it put both my bowel and joint issues into remission and they have been since 2013.

I still have high ANA and RF and always will. However, neither my GI nor my Rheumy believe this was RA. It could be that I develop RA at some future time-point however as of now I do not have this. Both say the joint issues were a form of reactive or enteropathic arthralgia that was induced by inflammation or immune activity in the bowel. In particular my joint symptoms were flitting, non-swelling and actually presented more in the tendons than the joint themselves. I'm sure some of what I had was enthesitis and dactylitis neither of which are consistent with RA (but are consistent with the Spondyloarthropathies of which IBD arthralgia is one of them).

The important point is that blood markers are not on their own an indication of a certain disease or condition. RA cannot be diagnosed based on positive ANA and RF alone. It needs to be diagnosed by a Rhumey in relation to your whole body and symptom presentation. Too many of us are reading incorrect web literature and immediately associating certain disease and conditions with certain positive blood markers. This is absolutely incorrect and as any good doctor will tell you more especially for the vagueness that surrounds autoimmune conditions.

Now it actually turns out that I am currently having some joint issues and unusual bodily symptoms and I have again questioned the RA diagnosis with my GI and Rheumy and again, on physical examination and X rays and MRIs, I fail the RA criteria and they put my symptoms down to mild bowel activity which is inducing reactive effects.

For you good to have further RA testing done by your Rheumy but the fact that your UC is active here is highly suspicious of another explanation. Try a topical steroid such as Entocort which is specific to inflammation in the bowel and if this also provides significant improvement for your joint issues then that would point away from true independent rheumatic conditions being present.

Finally you mention that you read that 30% of UCers experience RA. That is not correct. What you likely read is that 30% of UCers experience joint issues of which the vast vast majority are forms of IBD arthalgia, AS or other forms of SpA. RA is just one of the many forms of joint conditions which run into the hundreds. To have PsA or RA would imply an independent and separate autoimmune condition and memory serves that that % is under 2 or 3.

D

Post Edited (damo123) : 8/1/2021 4:20:15 AM (GMT-6)

But aren't enteropathic arthropathies generally considered to be in the class of *seronegative* arthropathies? (meaning that the person does *not* have positive ANAs nor positive RF)

In other words, arthropathies associated with IBD are quite common - possibly around 30% of patients having some such symptoms - but such arthropathies do not have high positive ANAs or high positive RF blood tests.

I do agree, as I suggested above, that a rheumatologist is needed for a correct diagnosis.

I don't fully agree that getting a benefit from Entocort would prove that the arthritis-like symptoms are bowel related. Entocort has less systemic effect than prednisone, yes, but for some people it does have sufficient systemic effects to have a direct impact on joints. I speak from experience - every time I've been on Entocort, my allergies improve, my dermatitis improves, and my joints improve. All temporarily of course.

You are right that it's not 30% of IBDers who get RA. It's 30% of IBDers have some sort of arthropathy.

But the amount of IBDers who develop a concurrent additional autoimmune disease is, if I remember right, estimated to be higher than 2-3%. I'm not sure what the estimates are, but that would be on the low end.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3261248/

Thank you for your input on this, good feedback that I would never have considered. This setback is new to me, am feeling a bit anxious, will deal things one at a time, like a process of elimination. I appreciate the sharing by everyone, it is comforting to know I am not in this alone. 😄

I do once in a while think about the vaccine too. 🤔

Yes D, I did misread about the 30%.

Lots to think about as I write my questions for my pcp doc and GE. Will keep everyone updated.

Hi D
Yes, same level so far, same areas. Knees, fingers, right wrist, a bit on elbows, outer edges of feet.

The CRP of 5.6 was measured as mg/L.

Colonoscopy was Aug 11, 2021. No signs of active ulcerative colitis, polyps or pseudopolyps, no areas of dysplasia, random biopsies taken for dysplasia surveillance.
Received copy of report with discharge directions complete with pictures of my descending colon, terminal ileum and cecum! I thought the pictures were interesting (as strange as that sounds).
Recommendation of GE, continue with 5 -ASA and does not favour NSAIDs for RA
first line therapy.

PCP called, said July 13th bloodwork is pointing to RA, prescribed steroids 20mg/d (@pill 5mg) for 2 weeks then taper down. And prescribed hydroxychloroquine 200 mg/day and it is a 90 day prescription. Havent taken any pills yet, too anxious about all this atm. I do look at them once and a while.
Pco did referral to a rheumatologist.

I have a pcp followup Aug 19. I want to start a health history baseline. Eye appt Aug 18th.
Joint pain is lessening. I have been catching up on sleep and rest. Right ankle (left side) minor swelling goes away by morning.

A lot going on for me, feeling overwhelmed and emotional at times, reading too much on internet (about RA, med side effects and worst case scenarios). I am considering asking for anti depressants or something to calm my body down...not sure tho. So much to think about. Thats my update so far.
I really am thankful and appreciate everyone in this forum. 🤩

I'd wait to see the rheumatologist before starting any medications, especially the hydroxychloroquine. You could take the steroids if you're miserable, but otherwise I wouldn't take that (yet) either. You could try tylenol, heat/ice treatments, or maybe topical anti-inflammatories like voltaren.

kitkat, we know you are miserable & tired of being miserable, however, a rheumatologist is the appropriate dr that needs to determine if you have RA. I would not take either medication because the rheumatologist will order his/her own specific labs & you don't want to skew those labs by taking either of these medications.

Hang in there.

Hello
Yes, no assuming. Can't wait for RA doc appointment, no date yet. And you are right, stop self diagnosing myself 😐

On a pain scale with 10 the worst, pain is a 2 to 5 in mornings for a couple of hours, back down to 2. Sometimes the ball of my right foot feels like I stepped on a stone or something.

July 1st, I was dancing a bit, jumping and hopping pretty much on my tippy toes for about half hour, I was wearing heavy bottom soled shoes

July 2/3 on a ladder up and down washing outside windows

July 6/7 pain stiffness started mainly on knees, feels like both tendons but mainly right outer knee

July 9/10 pain stiffness starts
to include areas of 3 middle fingers, 3 middle toes on each foot (like cramping and some puffiness), right knee ankle and right side by foot sole. Doubled up on asacol from 3 pills/d to 6/d thinking UC might start up.

July 10 to 31 in addition to knees and feet pain, wrists (off on right wrist bone nodular, no real pain) elbow tips pain off and on (no nodular) like I banged my funny bone then very tender to put elbow on couch arm. Both palm wrist areas below little finger, nodular off on, bit of pain if I bump it especially or if need to write with a pen (I use a folded face cloth to cushion the nodular to write). Some off on right shoulder pain

July 28 back down to 3 pills /day, pain started to decrease somewhat

Aug 7 stopped asacol to see if pain decreased more, it did to about a 1 to 3 overall. I did read asacol can maybe cause joint pain? Maybe just wishful thinking on my part..hmm

Aug 11 colonoscopy
Aug 12 took 1 tylenol 500 mg
Aug 13 took 1 advil
Aug 14 took 1 tylenol 500 mg ,starting asacol again to 3/day, see how joints feel

The slight swelling I have is right ankle left side during day looks a bit bruised, come morning no swelling, no bruise color, right lower side of foot a bit tender. On left foot 3 middle toes feel like they want to cramp off on.

Mild swelling, both hands 3 middle fingers top knuckle comes and goes, can look like red little triangles on ring fingers top knuckles. Knees not swelling at all.

And I am noticing I can walk barefoot on grass and sand with little to no knee or foot pain. That is strange...

I am sorting out which type of shoes work well, wearing at work all day. Finding some arch support feels okay. Then I am barefoot at home.

Wonder if Tylenol Arthritis works or if it is just like regular tylenol?

I now have another entocort enema prescription filled, was thinking to use twice per week but don't want to tempt fate in making my UC dependent on it.

I really appreciate all the encouragement 🤗
Thanks Everyone