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naturalcurl

HealingWell Forum
>
Member Profile
Display Name
naturalcurl
Profile Created
11/17/2010 8:51 PM
Last Seen
6/29/2022 7:27 PM
Total Posts
252

Last 50 Posts

Remicade, the good the bad & ugly

Check out my post from today, 6/29, about Remicade and endoscopic remission. I have been on Remicade for 9 months and had a good response after several weeks. No side effects in my case. Also see...

6/29/2022 7:26 PM

Ulcerative Colitis
More about Remicade and endoscopic remission

Like HaleyA I started September of last year and have never changed from 5mg per Kg every 6 weeks, after loading doses. So much better! Look at my join date, 2010 so it has been a long struggle....

6/29/2022 11:54 AM

Ulcerative Colitis
Bloods drawn and i faint😔 on Remicade!

Always lie down when having your blood drawn. I have not had that happen but have witnessed many episodes. Lucky if you didn't wet your pants!...

6/22/2022 2:54 PM

Ulcerative Colitis
Biosimilars and Interchangeability

Does not apply to Remicade at this time but very interesting, from WebMD Professional, given the recent discussion about Remicade: "A biosimilar is a biological medicine proven to work in the same...

5/11/2022 2:44 PM

Ulcerative Colitis
Tell me about Remicade and biosimilars

Clo, all the variations have been approved after validated to be of equal benefit. iPoop posted about a hospital that switched all of their patients who were on Remicade with no problems (one...

5/8/2022 1:25 PM

Ulcerative Colitis
Tell me about Remicade and biosimilars

The specialist agrees that infliximab to Renflexis was a switch. She states that her center would not approve the change except if the patient could not otherwise receive treatment due to insurance....

5/6/2022 8:04 PM

Ulcerative Colitis
Tell me about Remicade and biosimilars

I'm glad there are no stupid questions on this forum! Don't check my spelling either. If Infliximab is the active ingredient in Remicade and biosimilars like Renflexis were approved separately then...

5/5/2022 7:41 PM

Ulcerative Colitis
Tell me about Remicade and biosimilars

I understand a little about brand names, generics and biosimilars and how they are supposed to be the same in terms of effect. I started with Infleximab and the last few infusions the pump reads...

5/5/2022 11:16 AM

Ulcerative Colitis
Flex sig to confirm remission - worth it?

I'm supposed to schedule a scope 6 to 9 months after starting Remicade. Not a pleasant thought, but then how do we know if endoscopic remission has been achieved? Isn't there a difference between...

4/5/2022 12:55 PM

Ulcerative Colitis
Wondering about Metamucil

Many thanks Quincy. It makes sense to use less of the sugar-free (that's what I have) if the bulk of this granular product is table sugar. And splitting it like Serenity does would help, (if you can...

1/20/2022 10:30 AM

Ulcerative Colitis
Wondering about Metamucil

This is a new suggestion from the IBD team. Did I hear the doctor say 2 Tablespoons? It says 2 teaspoons on the container. Some of our most trusted posters report that they use Metamucil. How much do...

1/19/2022 10:10 PM

Ulcerative Colitis
Metabolic Panel/Urinalysis

First thing is to repeat the urinalysis. Cheap and easy. You were probably fasting and withholding liquids if the blood panel was done at the same time. Hydrate....

1/16/2022 2:10 PM

Ulcerative Colitis
TSA precheck?

Having TSA precheck is not always a magic carpet ride through security. If an alarm is triggered, say even for metal from a joint replacement, expect the full treatment just like any other possibly...

11/24/2021 2:14 PM

Ulcerative Colitis
Black streaks on stool

If you see black again you can apply it to one of those occult blood cards and take it to your GI or GP for a quick check for blood. They add a few drops of developing solution to the paper for...

11/4/2021 10:36 AM

Ulcerative Colitis
Proteus mirabilis (pathogen) & female UTI experience

Don't freak yet! If an infection, like your doc says, amounts would be high. It would likely be a pure culture and you would have white cells in your urine. Did they order the culture because you...

10/28/2021 8:22 PM

Ulcerative Colitis
Entyvio has stopped working for me. :(

I am familiar with that feeling of disappointment. Before giving up on Entyvio we tried Prednisone as you have done. I also had a colonoscopy to check for visual inflammation, a calprotectin and CRP....

10/22/2021 3:38 PM

Ulcerative Colitis
Remicade, Prednisone as pre-medication

The wrong dose sounds like a serious error and violation of the medical oath of "first do no harm". The odd Prednisone pre-medication taper comes from the specialist; the dosage originates with the...

10/21/2021 12:05 PM

Ulcerative Colitis
Remicade, Prednisone as pre-medication

I agree Sara. You have motivated me to call, write, message and email a few providers (in a nice way)....

10/19/2021 12:54 PM

Ulcerative Colitis
Remicade, Prednisone as pre-medication

Thanks iPoop and Sara. I have an IBD doctor at a respected teaching hospital too distant for regular in-person visits and a local older sweet generalist GI who keeps up to date. The local guy is...

10/19/2021 5:43 AM

Ulcerative Colitis
Remicade, Prednisone as pre-medication

I got talked into a low-dose taper starting at 20 mg lasting only a month. The reasoning is that decreasing inflammation might make the infusions of this new treatment more effective. Anyone heard of...

10/17/2021 1:35 PM

Ulcerative Colitis
Laboratory markers in ulcerative colitis

With every-other Remicade infusion I get a complete blood count and comprehensive panel. Even before that the same would be ordered at least every 6 months, and an occasional C-reactive protein, by...

10/12/2021 12:52 PM

Ulcerative Colitis
Farewell Entyvio, Hello Remicade

Thanks for your stories and a glimmer of hope. My first infusion will be in about week and I will report the results. Exactly as CCinPA says there is no fine tuning of Entyvio. We went to every 4...

9/22/2021 1:23 PM

Ulcerative Colitis
Farewell Entyvio, Hello Remicade

I know CCinPA and others are experts here. After an Entyvio infusion I could just go about my day as if nothing had happened. Shopping, walk the dog and all that. Remicade seems a lot more...

9/19/2021 3:54 PM

Ulcerative Colitis
Booster Shots for the Immunosuppressed

To confirm my experience: I had no reaction to Moderna #3, unlike #2 which hit me with a fever for a day. CVS offered same-day appointments with almost no questions asked. I did not call my doctor. I...

8/23/2021 9:51 AM

Ulcerative Colitis
Booster Shots for the Immunosuppressed

I was fine with the booster dose. My 2nd dose of Moderna was almost 6 months ago and sent me to bed for a day with a fever. This fits with my son's experience. His first Covid challenge was the...

8/17/2021 9:24 AM

Ulcerative Colitis
Booster Shots for the Immunosuppressed

Like DavidEA, a teaching hospital told me that an antibody level would not be helpful in third dose decisions I had mine today at a CVS in California....

8/15/2021 5:22 PM

Ulcerative Colitis
Booster Shots for the Immunosuppressed

I'm getting #3 Moderna tomorrow. The process was easy at the CVS site. So now I wonder if any side effects from the booster are the same as the 2nd dose of mRNA. I had a fever for a day. I would like...

8/14/2021 9:10 PM

Ulcerative Colitis
COVID vaccine

My choice is to protect myself and others from this senseless disease in whatever way I can. If there is a correlation between the different vaccines and after effects I don't see it. My doctor and...

4/19/2021 1:23 PM

Ulcerative Colitis
There is always hope!

My original gastro said: sometimes this "burns itself out". By that he must mean spontaneous remission. A friend on a single course of Prednisone went into deep years-long remission after that. He...

3/31/2021 6:32 PM

Ulcerative Colitis
Lutein Zanzeaxanthin anyone

I have taken Preservision, usually one a day, for a coupe of years. Lutein 5 mg; Zeaxeathin 1mg with no change in IBD symptoms. 2 per day recommended but the zinc makes me nauseated....

3/31/2021 6:19 PM

Ulcerative Colitis
Hydrocortisone steroid enemas/suppositories

CC those are exactly my questions. In the past I have asked if any forum members have personal experience with steroid rectal side effects. I have also looked for studies or case histories that...

2/20/2021 12:36 PM

Ulcerative Colitis
got the first shot of moderna vaccine

A doctor in our family works long hours in the ER and Covid ICU. After the second dose of Pfizer vaccine the fever was enough to call in sick the next day; common among colleagues. I think this is...

1/24/2021 2:38 PM

Ulcerative Colitis
Questions about new colonoscopy prep instructions

Serenity: Ya it does sound like a two-part prep. But part one is quite early, starting two night before the scope. I guess my question was about the one early bottle of magnesium citrate, when it...

12/13/2020 12:09 PM

Ulcerative Colitis
Questions about new colonoscopy prep instructions

The doctor is handing out Miralax prep instructions with three changes. First change: you start TWO nights before the procedure with a clear liquid dinner followed by a 10oz bottle of Magnesium...

12/12/2020 12:27 PM

Ulcerative Colitis
Is Entyvio working? What do the lab results mean?

CRP is 7 (normal <8). Calprotectin is still high at 126; but last year it was 1200 in April and over 2000 in September. I have been on Entyvio since mid December, 2019. I have read here that...

7/3/2020 5:55 PM

Ulcerative Colitis
Colonoscopy on Thursday..

Trying to follow a schedule is a sure road to uncontrollable nausea for me. I start a couple of hours early. If a 15-minute drink takes an hour I do not care, as long as the doctor is happy with the...

5/19/2020 11:54 AM

Ulcerative Colitis
Entyvio so far. Possible back pain side effect.

QuantE, If you introduce yourself through a new thread you may hear from others who have been down the same medication pathway. It must have been severe for you to be in the hospital and fast-tracked...

5/19/2020 11:43 AM

Ulcerative Colitis
Entyvio so far. Possible back pain side effect.

Quant: Congratulations (that is not the right word!) on your first post. It sounds like you will be a good advocate for yourself. I am coming up on 10 years on the forum and that was early advice;...

5/18/2020 11:43 AM

Ulcerative Colitis
Entyvio so far. Possible back pain side effect.

It has been 5 months and 5 infusions. Even if the response is partial I am happy. No blood! Not tempted to take yet course of Prednisone. The GI was concerned that I still have frequency, three times...

5/17/2020 11:49 AM

Ulcerative Colitis
Only white mucus , is it UC or bacterial infection.

It could be either, UC or bacterial....

5/12/2020 9:58 AM

Ulcerative Colitis
Refusing colonoscopy?

Is the hospital even doing elective, non urgent procedures like that? I would be surprised. A family member in a low-risk New England state thought he was lucky getting the last scheduled scope...

3/25/2020 11:56 AM

Ulcerative Colitis
Entyvio infusion in 2 weeks and COVID-19

I felt safe at the infusion center for my 4th Entyvio dose. The facility was calm and uncrowded. The staff was constantly cleaning with disinfectant wipes. I am from the Land of Shelter-in-Place so I...

3/22/2020 8:55 PM

Ulcerative Colitis
Prednisone- Side effects

Caution! My symptoms do not include the long-term known side effect like osteoporosis and cataracts. A reaction can be different each course so will not happen all at once, if at all. Feel free to...

3/21/2020 7:58 AM

Ulcerative Colitis
Flying or not covid-19

I have canceled everything from 2 airline flights to a haircut. IBD and Entyvio are minor considerations. My main reason is age. But I will venture out to the infusion center. Someone I love very...

3/15/2020 5:19 PM

Ulcerative Colitis
Why not add Prednisone slowly?

It would be like a reverse "taper" at the beginning of Prednisone use, but more rapid, and in non emergency situations. With the usual taper at the end. What could be the disadvantages? I'm thinking...

12/12/2019 9:26 PM

Ulcerative Colitis
Need help interpreting lab results

Let us know what your doctor thinks about the lab results. What was he/she looking for? In the recent past a stool culture was reported only for pathogens. In other words, "No Salmonella, no...

12/10/2019 8:26 PM

Ulcerative Colitis
Should I start Entyvio now?

Thanks everyone! It's unanimous and confirms what I was already thinking. There is no compelling reason to delay and I scheduled the first infusion in about 2 weeks and the second 2 weeks after that....

12/6/2019 2:21 PM

Ulcerative Colitis
Should I start Entyvio now?

The doctor and I have been talking about this for a year and a half. Finally Entyvio was ordered for me 3 weeks ago and I had a big decrease in symptoms during those 3 weeks because I had just...

12/5/2019 7:07 PM

Ulcerative Colitis
Starting Biologics in remission ?

Good timing Tblock. Me too. The infusion center left a message to start Entyvio, my first biologic, but I feel better at the moment. l will stop the 5mg of Prednisone, use Rowasa/Canasa less...

11/13/2019 8:27 PM

Ulcerative Colitis
Remission and Meds

Yay. I really am happy with the replies. I am not on a biologic yet but in the future it would be nice to escape the oral mesalamine rat wheel: what's approved by which insurance; what's the cost...

10/19/2019 9:11 PM

Ulcerative Colitis
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