How much Vitamin D are you taking Sara? Mine was also really low so I started taking the maximum daily dose of 5000 IU. I take it pretty much every day and my levels are never high, usually middle of...
The drug company paid portion used to count towards our deductible (one infusion and it was met!) and it seems all the biologics have payment assistance. Usually it's $5 per infusion but I found...
The lobotomy treatment is still kind of freaking me out. Medicine has come a long way.... or has it?!...
There is a company in Canada called Qu Biologics that is trying to "fix" the microbiome instead of just suppressing the immune system. I think they are on second round of trials. I am hoping they...
give yourself a few days or more to get back to a regular diet etc. It does suck not being able to just do what we want but chances are it will go back to normal once you are back in a routine....
I do the same thing - trying to piece together all the different symptoms to figure out what is going on. I don't think it's hypochondria, more like I am the one with the the most knowledge of what...
I am lucky enough to live within driving distance of Johns Hopkins and have slowly switched all my doctors there. Some are still better than others but overall I think its a better solution. I like...
I'm finding it increasingly difficult to trust doctors. Not only are they not infallible, a lot of them are either lazy or useless or worse. I obtained copies of the files from my last GI when I...
I can't believe they didn't treat the UTI?! UTI's can have all sorts of symptoms, definitely something you don't want to leave untreated. (sorry, reading just first page.) Hope this is solved...
I'm glad you posted it, I've been thinking about biologics this morning and wondering what treatment was like even 50 years ago, they didn't have all these drugs, did they just do nothing? I am...
Ausruby, how did it go with your GP? I hope you have no signs of lymphoma and the tests weren't too bad. They should be able to do some blood tests and rule things out pretty quick....
Keith - I'm switching because Entyvio just wasn't doing much, except making me hurt all over. The infusion center was at my Dr.'s office, who is definitely in network. I wouldn't just kick it to the...
We switched to Aetna from United Health Care as of Jan 1st, because my husband's employer decided to change. Up until last Friday I was supposed to be on monthly Entyvio infusions. (nb. Entyvio is...
Yes thanks Sara, I was on pred for about 2 yrs. The devil's tic tacs. No pain but I gained 50lbs which I've only managed to lose about half of. I think doctors need to not prescribe it unless it is...
Thanks Straydog. I saw a rheumatologist about 3 wks ago (had waited 9 months to finally get in!!) and just had an MRI of my hips where the pain is the worse. He suspected sacroiliitis, but there was...
The ultrasound showed no abnormalities and my blood counts are good so it's nothing to worry about. I'm still thinking of getting off Entyvio, been on it for a year and a half and have gone from left...
I have been using CBD/THC edibles (20:4) to help me sleep for several months, they work really well most of the time. I live in a state where medical marijuana is legal so I buy it from a dispensary....
Visited the gp last week and he discovered my spleen is enlarged. Going for ultrasound tomorrow. Anybody have this issue? It could be lymphoma and it's freaking me out....
I really like psyllium, both seed and husk. I do not take a lot, start small and see what works for you....
fwiw, my doctor wanted my trough level over 30....
I have had both my tests done through LabCorp and I don't see any reference to Prometheus. My levels were at 13 and 18, the latter after switching to monthly. I will ask when I get my infusion next...
Thanks for sharing this!! I am slowly losing response to Entyvio and am a bit apprehensive about switching to yet another drug but this is encouraging....
By blocking the Cox-1 enzyme and disrupting the production of prostaglandins. But I assume it does not affect everyone equally. I bleed just from taking fish oil. Others may never bleed. Maybe good...
I have been using Curio Wellness Lemon Honey Chews which have CBD and THC at a 5:1 ratio. I usually have half of one at night before bed and if I am especially sore I might have 1/4 during the day. I...
I have heard that it is anti-inflammatory....
Wouldn't it have been simpler/easier to just name it Zeljanz?! :-D...
I had a bunch of plantar warts spreading and some other weird scaly kind of thing going on on my feet after a couple of years on Prednisone. I was amazed when I used some Nair (because I thought...
I agree - just take what he gives you. I took extra strength ibuprofen and Amoxicillin with my last major dental work, with no issues at all. It's not a prolonged course, you'll be fine. That being...
Maybe it's a hemmi?...
I got the results while in the waiting room - no antibodies - yay!! Trough levels are adequate. It's working!!...
If you can tolerate mesalamine then by all means do the enemas....
I did the bloodwork last Thursday, early afternoon, and the technician said it would take 24 - 48 hrs. It's been longer and I have my infusion tomorrow. I am wondering if there's any chance I'll...
Maybe it's time to look for a new GI?...
Just saw this in a newsletter from the FDA: FDA has approved new warnings about an increased risk of blood clots and of death with the 10 mg twice daily dose of Xeljanz, Xeljanz XR (tofacitinib),...
Prednisone has a lot of side effects. Knowing what I know now, I would start with Remicade over prednisone any day, preferably in conjunction with something like Imuran to minimize the potential for...
maybe it's just the effects of the canasa wearing off?...
I had to drive a long distance (10hrs) last year and took imodium. Had no trouble at all. That being said, I do usually worry all the time when going out, despite being close to remission. Its just a...
Some of our medications can make us photo sensitive, and IBD arthralgia does not go hand in hand with a flare, it can exist even in remission....
I'm having the antibody and levels tests done next trough. I wouldn't just stop out of the blue. But what if my levels are good and there are no antibodies? All my other tests have been improving,...
I have had joint paint since weaning off pred. Been on Entyvio almost a year, prior to that Remicade. Before this I never had any pains like this, now I can barely get upstairs. I am woke by the pain...
I asked my rheumy to let me try LDN before Lyrica (because more weight is NOT what I need) and in my excitement to finally try it I completely blanked on the fact that I had taken tramadol that...
Hi decaf, I had to take my daughter to the theater last night so I decided to stop taking the naltrexone. Didn’t want a repeat of the previous night! I do think it may have been caused by the...
Hi decaf4me, The pool is around 89F - 90F so yes all your muscles loosen up. It is hard to get out!! I have been off pred since mid-January, was on it for aprox 2 yrs. I just saw a picture of myself...
I have been wearing Nike Air Zoom Vomero shoes for several years. They come out with a new style every year but its basically the same. Lots of cushioning. If my plantar fasciitis is bothering me I...
I have pain all over, current dx is fibro, has also been lupus and then connective tissue disorder. I just got through trying methotrexate injections which did nothing. I actually feel a little...
No, I'm in the US. I will ask my GI about it although I'm pretty sure what the answer will be already :-(...
https://www.wjgnet.com/2150-5349/full/v7/i1/5.htm I'm not a doctor (nor do I play one on TV) but I think the general gist is they can remove the offending cells from your blood and it will actually...
They find contamination even in the remote arctic. It is spread by wind and water. I agree with Uniform Charlie, we really do suck as a species. We have completed f*cked up the earth. Perhaps the...
Thanks John!! I tried asking Takeda directly and I think whoever answered could work at the White House... Jeez. Doesn't give me any warm fuzzies about Takeda Corp, that's for sure!!...
I think if you are not feeling too bad then maybe wait and try the 4th infusion. I know I wouldn't want to be wondering if only for the rest of my life... I am down to 2 - 3 bm per day, give or take,...