Well, it's several years later, and it turns out the test I *should* have been getting was the CALPROTECTIN test. Even after 6 months on IMURAN, the Calprotectin (Calpro) test result was 10x normal....
Ask the GI what their LT plan is. Have you recently had your UC measured? e.g. How many inches of disease is your Colitis? They measure form the 'bottom up' in a scope.. I never formally had this...
This is a very old question. One possible answer is that Prednisone promotes fluid retention. It may be that is why your hands are tingling. Fluid shift or retention can create a kind of carpal...
6 feet (~200 cm is extensive, 5cm is not. You can still suffer badly. Try enemas (PM) as well as Suppositories (AM). Suppositories alone can allow it to spread upward. UC flares upward ('bottom up')...
I have heard of IV Remicade for "just" 10cm of active disease. I have 20cm of active disease and was put on Entyvio 9 months ago....
Once a person has had Pancolitis, they need annual colonoscopies, because colon cancer risk goes up....
Ask for the HC suppositories? Anusol HC. Keep in mind that Steroids are a band-Aid. You need to be doing ongoing Pentasa/Lialda/Canasa enemas. Nightly is ideal....
Inflammation at the Cecum and Rectum (5 feet apart), does not make sense for UC. UC ulcers and erythema (the 2nd degree burn type redness) are 'circumferential' and 'continuous', and go in an upward...
Darker bleeding (black, purple, mahogany, burgundy) and/or dark mucus (swirl like jellyfish upon flushing), can mean your UC is spreading up the colon. Call your GI and ask for the Calprotectin test...
Mine started at age 32. I began to have racing heart, hot flushing, face and arm redness with it, more frequent BMs and right sided abdominal pain (R ovary, Appendix, Gallbladder; had many...
The prednisone is my best guess. Be sure to monitor your heart rate and blood pressure on prednisone....
Did you find a surgeon, U B Tough? I am in Canada and there are great IBD GI doctors (a large IBD program) and Prolapse/Fistula surgeons (a large UroGynecology program) at Mount Sinai, in Toronto,...
I have been failing 5ASA drugs, Imuran and ofcoruse Prednisone (when I taper, I flare), so I moved to an IBD only GI doctor. He has started me on ENTYVIO infusions. I think they may be starting to...
I am having side effects to mesalamine. My ears are ringing and I am getting headaches. I also feel like my balance is not right. The Pharmacists (I've talked to 3 of them) have said that it may be...
Don't necessarily dismiss it, or live with symptoms, MyUC. I was just talking to someone who had 1/2 the cm of disease that I have (20cm that won't heal since 2012), and she was being put on...
"Waking up" with a racing heart can be a sign of SLEEP APNEA. Hope you get a Sleep Lab test....
More experienced GIs know to 'treat from both ends'. Pills and enemas....
Consider the Mirena for women who have not had childbirth. It is called Skyla. The copper IUD can cause heavy bleeding....
Pink1: Did the Entyvio wind up working? If so, is it still working?...
1. Tachycardia can be part of taking Prednisone. (They are called 'Satan's pills' and 'the devil's tic tacs' for a reason.) 2. But it can also be related to IBD flaring: inflammation, low iron (low...
A hemoglobin of 10 (male) will most certainly give you heart palpitations/tachycardia. [Tachycardia is defined as a resting HR of 100 and higher.] How is your FERRITIN level?...
The hair shedding cycle is roughly 2-3 months after exposure to the trigger (illness, medication). This is why people often do not make the 'connection' between starting a medication or the onset of...
Remember to treat 'from both ends'....
I was just reading about the formation of Entyvio antibodies. The rate of developing them is 4% after 52 weeks of use. Not very high, IMO. You could also try taking an immune suppressant such as 6MP...
Does the Entocort help, NiceCupOfTea? Is that an enema?...
Sounds like a severe active flare. Can you get on a Biological, ASAP? Sounds like you have exhausted most other Tx options. I have just started Entyvio myself. It take 14 weeks minimum to work. I get...
I'm hoping it doesn't keep me stalled. We shall see. At least I'm still on my old meds too (oral and rectal Pentasa and Imruan), so I'm not losing ground. I've been sick too long since the Pancolitis...
What is IVIG? Not sure I am responding to the Entyvio. I still have daily periods of pain where I feel that either my gallbladder or appendix will burst. I've had IBD symptoms (except the blood) for...
Maybe this (partly) explains the decision to use Vedo for my UC?...
Yeah, that's what I heard too. My new doctor is Mark Silverberg (the #2 guy at Mount Sinai's IBD research). After my colonoscopy, he told me that with 20cm of UC, he didn't want to use Remicade...
Thank you for all your knowledge and willingness to share information. I am grateful that even if Entyvio fails, I am able to escalate to a higher strength of drug. My new IBD GI seems to be highly...
Marauder93 Thanks for all your advice. I had my GP refer me to Mount Sinai's IBD Program. Once I knew the referral was in, I went to their office to make an appointment. An IBD program RN came up to...
It can be colon spasm. As the colon spasms, it pulls on the mesenteric attachments causing pain in the Right Upper Quadrant ('gallbladder') or Right Lower Quadarant ('appendix' or 'ovary') areas. Do...
I didn't go off meds (my GP still gave me suppositories because I told him my symptoms and asked him to). I was unable to get the additional meds that I needed from my GI. She was more interested in...
Observation: The Dry Eye things are a bit better if I scale back in the Imuran from 100mg down to 50mg/day....
Thanks guys. I saw the Optometrist today (Sunday). She is referring me to an Ophthalmologist who is a Dry Eye Specialist. Apparently my GP didn't refer me to the right one. Ugh. She said the eyes...
Did you see an Optometrist or Ophthalmologist, Alice22?...
Low iron and dehydration and inflammation can all cause a high resting HR....
Are they planning to use 6MP or Aza next, Mad Martha? Many don't seem to get controlled with oral 5ASA alone....
Did you see anyone for this dry and red eye condition? If so, what happened?...
Does Aza reduce RBCs as well as WBCs? If it does, that may explain why one's heart rate can increase. RBCs carry oxygen. Less oxygen means the heart has to work harder to move blood around the body...
I got headaches when my Aza was increased from 50 to 100mg. I also tried taking it at night and woke up with bad headaches....
Calcium, Vitamin D, Magnesium, Strontium, Boron, Vitamin K are all needed to build bone.... There may be more micronutrients....
My GI doctor says adamantly that Pentasa doesn't cause ear ringing. My Pharmacist says it does. I'm going with the Pharmacist's opinion. And my own experience. Has anyone determined the daily *dose*...
Good question...
1. Quitting smoking 2. Accutane (some research suggesting this can harm the GI) 3. Antibiotics for acne and UTIs and bronchitis. (Most recent flare started after being given IV antibiotics and NSAIDS...
When was your Mom's last C-scope or Flexible Sig? Body aches and pains can be part of UC. Leg pains w walking can be claudication and other things. Sounds like your mom needs better medical care. Do...
I am going to ask for some cortisone enemas from my GI doctor. In the meantime, I'll be using some Pentasa enemas, not just the suppositories....
Have you tried Imuran?...
One of the St. Mike's GI docs (Kandel) told me that 'you don't have UC, it's just Proctitis'. Now I have Pan-colitis. Could have lost my colon the new GI doc says. Considering a CPSO complaint once...