Thanks, platinum pixie. I assume Humira didn't work for you? What was your reasoning to stop Remicaid?...
That's true, good point. :) Maybe I should have been on Humira or Cimiza from the beginning. But it's a scary decision to know there are only 2 (I was on Remiciad when the RA hit and we didn't know...
Never heard of ENTYVIO.... I'm going to look it up. Do you have experience with it? How long was your break before starting Remicaid for a second time? What made you decide to go back on it? Did you...
I have been on Orencia infusions for about 3 years. They have been (and are still) working great! I haven't had any reactions to it and wouldn't be changing other than it doesn't help the Crohns and...
Thank you for your reply. In the meantime I continued to do research on the subject and learned about the blood test. I will definitely bring it up with my doctor! Thanks again....
Hi! I was on Remicaid for Crohn's approx. 5 years. ago. Since then I've been on biologics for Rheumatoid Arthritis and keeping the Crohns in remission with Lialda. It was working great-until now....
I'm on IV Orencia and never have experienced a bad taste in my mouth because of it. I've been taking it for a year now. It did take a long time to "kick in". (Slowly, over the course of 5-6...
That happened to me several years ago...it was like the barium turned into cement. I did eventually go...a day, maybe it was 2 days, later. I remember taking milk of magnesium, not mira-lax. Maybe...
73monte, I take "ultimate iron" by Enzymatic Therapy company. I was anemic (cbc @ 8 around Christmas time) and could not tolerate any iron either, due to constipation issues. A lady at church...
ugh! I feel for you as I go through the same thing. I do the mira-lax, sometimes double dose: one cap full in morning and one at night, along with the senna. My dr. has since tried me on amitiza,...
Thank you all for your thoughts. This is a new adventure for me. I didn't even notice the post, "Fibro 101"! Thanks for mentioning it. I do have a schedule that I stick to, for the most part, and...
Hi, I'm new to this spot, although not to healing well. I have Crohn's, Rheumatoid Arthritis, and now dr. says 'fibromyalgia'. I tried zanaflex first, but I felt drugged all day just taking 2mg in...
One other thought, bristol-meyers-squibb has a co-pay assistance program that works with your insurance. It is definitely worth the extra time to put that into place...it's a $5 out of pocket cost...
Yes, I'm on Orencia! I get the infusion at the hospital once a month, and been on it for a little over a year. I do remember though, it takes a LONG time for it to build up in your system and start...
It's looking/feeling thiner than normal. My hair is very fine and always has been thin, so now with this problem, it's making me nervous! Thankfully I have no bald spots (yet). If this keeps up I'll...
I use (and love) zofran. Sorry it doesn't work for you. I've heard that candied ginger works...never tried it personally, but I know that Ginger ale (canada dry) helps! Just thought it was worth a...
Sayyadina: Yes, I'm on prescription (1mg) folic acid...been on it ever since I started the mtx. Let me know if increasing the dose helps with the hair loss. Btw, how much did you increase it?...
Hi, Yes, I am taking 1mg of folic acid, daily and 2000 iu's of vit. D daily, for at least a year faithfully. The hair falling out started when I was anemic this winter, and then was better, and now...
I know that my hair is falling out, but wow! I really noticed how badly today when I put it up in a pony-tail. Now I'm concerned, and want to know why. I have crohn's, RA, and fibromyalgia. I...
I was at Cleveland Clinic three times last year. After my initial appointment I had procedures and tests that the doctor wanted done, but I made a second trip for it. One needed a prep, and the other...
Ouch! I know what you are going through! There is hope...it does eventually go away. I did the medrol dose pack thing, and just like you, it came right back. Long story, I ended up on 40 mg. of...
A nurse at church told me about coke a cola helping blockages. It has to be the original kind with all the sugar and caffeine, and it helps break the food down in digesting. She heard about the study...
Thanks. I did not realize that there were a few different kinds of iron infusions. I had one kind 10 years ago after I had a resection, and it cause vomiting. Not something I'd like to repeat, which...
So what about iron injections? Do you know if the reactions are less? I'm anemic, taking a low dose iron supplement (oral), and magnesium for the constipation. Because of the Crohns, we are not sure...
All the centers I go to ask as soon as I sign in, "do you have a driver with you?" They will not administer the test unless another person is already there to take me home. Last thing you want to do...
Thank you for your replies. With my job, it's probably best that I go for it...although nervous as I've read conflicting stories in my own research. I'm going to check with the nurse at the infusion...
Hello! I've been dealing with erythema nodosum on my legs October and November, treating it with steroids (medrol). I thought that it ran its course, but now today I have another bump coming out on...
Thank you for all your replies! It eases my mind knowing that others are on these strong drugs and the flu shot is still a good thing to do!...
Thank you for your quick replies. Anyone on a biologic med (that's the orencia) and take the flu shot? Kazbern, yes, my doctor made it very clear that I get the shot, not the inhaled mist....
Thanks for your reply, elcamino. Hopefully I won't have to worry about another cold for awhile, but it's nice to know that biologics don't turn the common cold virus into pneumonia or strep throat......
Hi, I've never had the flu shot and my doctor wants me to get one this year. I switched school jobs and in closer contact with the students...and germs...this time around. I have Rheumatoid Arthritis...
Hi, I've never had the flu shot and my doctor wants me to get one this year. I switched school jobs and in closer contact with the students...and germs...this time around. Along with Crohn's, I also...
I've been on Orencia infusions every four weeks for six months. At the time of the last infusion I had a mild sore throat, was nervous about taking it so rescheduled for a week later. Now it hasn't...
Question for bookworm21: Can you give me a name of the procedure for the endo. that you had? I know someone who has recently had the regular laparoscopy procedure, but it would be nice to know of...
Hi, My doctor said told me that I could use ibuprofen as long as I ate something with it. At that time I was in remission. I was on 600-800mg for months because of an RA flair, and it never bothered...
Oh, I can't live without my coffee either...and it must have ALOT of cream and sugar too! When I was completely dairy-free I used coconut milk. I bought the stuff in the can b/c it is thicker and...
Just make sure you take it with food as it can cause nausea, and drink a tall glass of water with it. It has helped me over the past 3 or so years. There are also a few previous posts on this drug (I...
That's what it is...the prednisone! I was thinking it was my birth control meds. It makes sense though, because I see it messing up with hormones in other ways. I'm 26 so no worry about menopause...
I've been on amitiza on and off for 3 years. I do struggle with nausea sometimes, but that could be related to my Crohn's disease. I've never had headaches or other related symptoms. The key is to...
If you can ask your dr. or get a second opinion, ask for zofran to help with the nausea. It works wonders and better than the other anti-nausea med you were on. Zofran doesn't make you sleepy or...
I have been wondering if massages would help with the RA. How do you find a massage therapist that really helps and not make things worse? I don't know anyone with RA in my area to ask, and I don't...
There are assistance programs that help with the cost of biolologics. They are from the drug company and on the actal drug's name website under "support" or "co pay assistance". I've never used...
Ouch! I was there not too long ago--only I'm a professional pianist and church organist! Try striking multiple keys that resonates three strings each! You know that old saying... "the show must go...
Zofran works GREAT for the nausea. It is a prescription and comes in 4mg and 8mg doses in a variety of ways: pills, melt under tongue, and intravenous that I'm aware of. It is typically given to...
Look up: http://www.humira.com/global/financial-assistance.aspx I have used similar programs for remicaid, enbrel, and now orencia with great help!...
Try coconut milk smoothies. I'm lactose-intolerant too. Use the stuff in the can...not in the refrigerator/milk department, and shake the can well. It is thinker in consistency, more calories, and...
Hi, Can I ask who's the doctor you like at UofM? It sounds like you have a good doc there, and I'm thinking that may be my next step. Glad that you found some answers!...
Glad I helped you and had the courage to try methotrexate. I'm sometimes shy about posting, so it encouraged me for you to say you appreciated the comments! It sounds like you have a very caring doc...