At the end of 2014, I suffered a severe episode of Crohn's disease, which was eventually treated with prednisolone and azathioprine. This combination resulted in potentially fatal side effects in a short time: liver abscess, sepsis, pneumonia, skin cancer. Under this impression, my team and I skipped the usual TNF alpha blockers and went straight to Entyvio (vedolizumab).
Entyvio is a relatively new drug with a unique mechanism of action. It only hit the market in 2014, and I was one of the first to get it out of clinical trials. The active substance vedolizumab blocks a certain protein on the surface of the white blood cells and thus helps to reduce the inflammation.
Due to its special mechanism of action Entyvio acts almost only in the intestine and does not affect systematically, ie not the complete immune system, as do azathioprine or TNF-alpha blockers. At least the side effects of a systemic immunosuppression are avoided, especially infections. The most common side effects are commonly occurring colds, headaches and joint pain. Overall, however, it is comparatively well tolerated, if it works at all. At that time, the likelihood of a positive response was around 35%. Of course, about possible long-term consequences, nothing is known and we are all looking forward to it.
With Entyvio I felt pretty fast, ie in a good half a year, much better. I lived, loved, worked, walked an ran again regularly 40-50 km a week and then moved in the middle of 2016 from Konstanz to Bavaria, closer to my beloved mountains. The side effects of infusions every 8 weeks were tolerable. On the day of infusion and the next day I felt tiredness, headache, but it was ok to endure it.
In 2017, we shortened the infusion intervals to 7 weeks as my condition worsened noticeably in the last week before the infusion. In the winter, I had to stop an infusion for flu, which caused the levels of inflammation to skyrocket in early 2018, and the Crohn came back unmistakably and forcefully. I tortured myself with the help of cortisone to get something baked in everyday life. After a few months, but the air is out. Illness and coping with everyday life are mutually exclusive. Even if I did not want to admit it, it's like this: a person's energy level is limited, and since survival is hard-coded, the body shuts down everything that is not necessary for survival.
Prednisolone, or cortisone, is still the drug of choice in such highly active stages of disease as it was 30 years ago. We tried in parallel, to start Entyvio again with intervals 0,2,4,8,8 weeks. Without success. The weeks, the months went by, I was still on cortisone, and every attempt to step it down ended at 20mg. As soon as I got under 20mg, the Crohn came back full force. In autumn we had to realize that Entyvio probably does not work anymore.
So we started the experiment Humira. Unfortunately, Humira did not work well, and the side effects were much more pronounced compared to Entyvio, especially in the days following the injection. Every 14 days I was completely out of action for a few days: severe fatigue, circulatory problems, uncomfortable headaches, itching all over my body, as with a moderate sunburn. But who will give up soon? So on, clench your teeth and inject every 14 days. I fight back pain with cortisone and strong analgesics. It is known that the effect of Humira is either immediate or delayed. It is also known that approximately 30% of the patients have no effect whatsoever.
Now it will be, in the meantime 2019, so again a try with Entyvio. In the meantime, however, I have adjusted my sense of pain and my ability to suffer so far that I can hardly tell where I stand on a scale of 1-10. I dummple around at 5-6, with tips in the 7, so I would guess. The body is on & #8217; s essentials reduced, after 3 km in walking pace I'm completely sweaty and anyway proud, ever & #8216; gone out. Because of the cortisone, my osteoporosis reports regularly back pain, so that even drinking and eating is only possible with pain. From the neck down the spine down to the pelvic area, I can feel every bite. Breathing is only possible to a limited extent, against deep breaths, the back defends itself, exactly at the points where the ribs end at the spine. Also Tilidin, a rather strong analgesic, hardly comes against it. But I also do not want to know how it feels without painkillers!
The doctors stay cool, that helps of course. If they too panic, I would not really helped. So I get out almost weekly at a & #8220; my team & #8221; in front of them, they also endure unpleasant examinations, regulate their communication with each other, manage the deadlines and the documents, keep them up to date, compile the information, the results of the examination and the lab results. Under the conditions of my current performance, there is little time and energy left for others.
Next week, a reflection is on again. From the results, my gastroenterologist team wants to make sure that we stay with Entyvio. The effect is not optimal, but at least I do not buy the little improvement with gross side effects. There is exactly one alternative in the room: Stelara (Ustekinumab).
I do not like to think about what & #8220; Exposed & #8221; means for me, if this alternative does not work.
update after the reflection: the complete colon is inflamed. Doctor's note: & #8220; If we did not know her medical history, we would have good reason to worry about this finding & #8221 ;. I'm not sure if that calms me down.
Hello Sven,
on Monday comes in the NDR broadcast & #8220; The Nutrition Docs & #8221; also the topic of Crohn's disease. Whether that is what for you?
The broadcast dates are:
Monday, October 14, 2019, 9:00 pm to 9:45 pm
Tuesday, October 15, 2019, 00:45 to 01:30
Wednesday, October 16, 2019, 06:35 to 07:20
I think I have a lot of adapted nutrition to try to stem or, ideally, replace medications.
Greetings, Sibylle of miteigenehaenden
Hello Sibylle,
Thanks for the information!
From the broadcast & #8220; Nutrition Docs & #8221; I keep a lot and have already linked them. I like their & #8220; holistic & #8221; Think.
Certainly, the nutrition is very important in a digestive system disease, and I feel, thanks to 30 years of Crohn, pretty much what I'm good and what is not.
Nevertheless, especially in bad times, when eating is hardly possible, not only experience, but also knowledge is important. Exactly then, one must pay attention to the most optimal and easily absorbed nutrient supply. For the fun of it, every now and then I tinker with my diet to get a closer look not only at the macro, but also specifically in the supply of micronutrients.
Now and then I can persuade a doctor to check one or the other laboratory parameters (eg Vit. D, calcium, B vitamins). Whether this is done, unfortunately, unfortunately, with the budgets of the doctors together & #8211; I have noticed that unfortunately they have to save more and more over the last few years. Even with osteoporosis and broken tem. Illeum, the values are no longer checked regularly and I have to beg and persuade quasi. But that's another and pretty bad topic.
Thanks again for the note to the show!
Best regards,
Sven
Hello Sven,
because of osteoporosis and two of the other & #8220; Challenges & #8221; I drive to the university hospital. In the here local practices I would have to pay despite diagnosis 50 € for a bone density measurement. In the Uniklink a measurement is made once a year without additional payment and an extensive blood count. The values of the other autoimmune diseases are checked simultaneously.
For years, the same Bone Density Meter is important to me for the comparability of readings.
Greetings, Sibylle
Hi Sibylle,
The medical care here in Upper Bavaria is unfortunately no comparison to Konstanz, where I've lived before. There was regular laboratory, bone density measurement, etc. absolute standard. Here I have to think along, do research and virtually beg for shit. The last CRP is, for example, from the spring of the rehabilitation clinic.
As early as 2014/15, I created an Excel spreadsheet and regularly fed laboratory data to keep track of the values at a glance. The table also lists the medications, but also things like meditation or nutritional supplements, etc. I always found it super-handy to be able to read lifestyle changes with a slight delay in the lab values. However, since 2018 the laboratory has only been made very sketchy, so the table does not make much sense anymore.
At the beginning of November I have the colonoscopy with the professor and I hope that there will be another lab soon, because of the broken intestine I tend to have resorption disorders, especially calcium, vitamin D, B-vitamins and folic acid the candidates who often run & #8220; empty & #8221 ;.
In all likelihood, we will now use cortisone again to bridge the inflammation, hoping that Entyvio will receive the remission so induced. Cortisone is not a walk, I fight from time to time more with the side effects. In practical terms, this means weeks and months again for me, going into the country until you know more about it. That's how it will be in 2020. I am really very patient, but we are working there since 2018, without any real successes. So slowly I run out of breath. So that I do not get bored, I am now also allowed to deal with health insurance, medical service and employment office.
It definitely remains exciting and tiring.
Best regards,
Sven
Oha. I wish you a lot of strength and endurance! As if you are not already plagued enough & #8230;
Greetings, Sibylle
Hello Sven,
Have you ever made a nutritional therapy with modules? It is a challenge but it gives the intestine a break to regenerate.
That's how I used to treat my MC and I'm thinking about trying hard to get back to it.
But less about me.
Also myhrrinil and incense are supposed to help a lot.
The doctor who discovered myrrhinil also has a clinic that specializes in ced patients and treat them holistically as conventional medicine and also other areas such as eating, psyche etc.
I hope that can help
K
Hey K,
The torture with the nutritional therapy I have already participated 30 years ago, without success. But I always have modules in stock, as I can not eat anything for days or weeks at a time, so of course that helps.
I also tried frankincense back then, unfortunately without significant success. I tried myhririnil last year, but I was not thrilled. Unfortunately, it is also true that I have to pay attention now extremely to & #8217; s money and the cashier, of course, hardly anything from this area.
What surprises me and annoys me: in the last 30 years, not so much has happened in the field & #8211; Of course, apart from the biologicals. I'm extremely happy about that, even though it's not yet clear what happens to the body in long-term use. Nevertheless, they enable me to lead a reasonably normal life. Sometimes more sometimes less.
Best regards and good health!
Sven
Hi Sven,
A promising new drug is currently in the Abivax pipeline. The data in ulcerative colitis patients are quite impressive and there is a Phase 2b study for Chron's disease this year.
Greetings and all the best!
Hy Sven. When I read all of this I get really scared. I'm 45 and a truck driver. It's hard enough to get along with Crohn anyway. I get Sterela ... unfortunately the effect wears off a lot and it bubbles and rumbles like the devil. No matter what i eat. Lefax enzyme helps a little and otherwise… .jo… nothing at all. I am now hoping for new products in the biological area. Otherwise the intestines will no longer be able to be saved at some point. Fortunately, I only have Crohn's in my colon. Lg Mike
Hey Mike, medicine in our field has made such progress over the past 30 years, I wouldn't be surprised if Crohn's disease became curable in our lifetime! Until then there will be the biologicals - no comparison with the mallet methods of the 90s ... Don't be afraid, I always think: everyone has their own package, and we are somehow lucky with our “batch” process that it doesn't stay that way for the long term, but also gets better.
By the way, respect your job, it's definitely not easy with Crohn. I think I would strap a camping toilet to the passenger seat 😉
Greetings and stay strong!
Sven
Hello Sven,
I just came across your entry and read it with interest :-).
My son is 24 years old and 7 years ago he was diagnosed with UC. It has had a difficult course over the years with few rest phases. After a lot of medication, he first ended up with Remsima and now with Entyvio. Unfortunately, the effect also wears off with Entyvio. Now, as is so often the case, prednisolone is in fashion. As his mom, I'm very worried about what's going to happen after Entyvio.
I will first send this text to see if you read my message (the other entries were some time ago). If so, I would like to get in touch with you again, maybe to hear about your experiences.
Thank you and best regards,
Gabi
Hey Gabi,
in fact, I rarely look inside, unfortunately that's true. But currently I am not at all into the outdoors. But that will definitely get better in summer 🙂
I would like to say “don't worry”, but of course it's not that easy. Nevertheless, even after Entvyio, “everything is not over”. Also had a loss of effectiveness, then on Humira, same game. Now Entyvio again and: wonderful, everything as usual! The complaints are halved within a very short time! I am now taking the pens and am very grateful that I don't have to take the bus and train through the pandemic every 8 weeks.
In principle, I even hope that the corona research will also bring knowledge about Crohn's, there is overlap (monoclonal antibodies, inflammatory reactions, cytokines, etc., etc.). In any case, a lot of money is currently flowing into research, and that will be noticeable. If I think where I come from, how Crohn was treated in 1995, we have come a long way and, with the Biologicals, we have come a good way.
Crohn has ups and downs, that's just the way it is. And none of this really can be understood, even the Docs and Profs are still puzzling over many details.
Please give him greetings! I've lived with Crohn for 30 years, that's okay. And now it's completely “normal” for me.
If you (her?) Like it, I am also happy to assist you by email as best I can! (sven at giersig.eu, I look there more often)
Greetings, also to your son,
Sven