Humira during pregnancy-when to stop?

[laura2015]

Hi there,

I'm new here and wanted to share my story and ask for feedback. I'm currently 20 weeks pregnant and take every 2 weeks Humira because of my colitis. The colitis got diagnosed two years ago and it's actually still not 100% clear if it's a colitis or crohn. However my doc says that for him it's more a colitis as it seems.
Before Humira I was set on Pentasa and Cortison which didn't work as they should on the inflamation. Since I'm on Humira I'm in remissions and without inflamation. My Immundoc suggested now to stop Humira as I'm well and it would be safer for the babies Immunsystem if I'd stop now. My Ibd doc however wants me to Continue throughout the whole pregnancy to be on the safe side as my health is now more important. he also says that there is enough reasearch evidence that it doesn't harm that much the Babies immunsystem. Just the first 6 months it shouldn't have live vaccines otherwise it shouldn't be an issue. I would nevertheless prefer to stop Humira now and be on the Safe side. I could e.g. also make close checkups and if there is some evidence of an inflammation I could restart Humira or a local Cortison which wouldn't compromise the immunsystem of the baby so much.

It's such a big responsibility to decide now on the future health of my child. Is here anybody in the forum who was in the same situation and can advise me? Any feedback would be much appreciated! Somehow I feel really alone with this issue.

Many thanks

Laura

 

[laura2015]

Is nobody on Humira or Remicade and had same questions during pregnancy? :-(

 

[laura2015]

As it seems there are not enough active users here in this forum or just not women taking Biologicals and having a similar issue. Can somebody advise me on a larger and more active forum on thi topic?:sign0085:

 

[InkyStinky]

Hi! I'm not on Humira, but ccfa recently had a "Ask the Doctor" post on their facebook page with Dr. Kane from Mayo about IBD and pregnancy. I hope this link works! https://www.facebook.com/ccfafb/pho...25546.101393913279829/757968574289023/?type=1 Basically, the refrain was to keep the IBD under control. So, "Dr. Susie Kane responded to a similar post –“Most medicines with the exception of methotrexate and certain antibiotics are safe to use during pregnancy to control activity. Again, you will hear the same theme over and over again, active disease is more dangerous than active therapy.” "

Also, here's thread with a study about "No increased risk for adverse pregnancy, developmental outcomes with Humira, Remicade" with stats about when Humira was stopped http://www.crohnsforum.com/showthread.php?t=70413

Again, I'm not on Humira but I just knew of these two resources and hoped they'd be of use!

 

[KayleighMeek]

Hi Laura
I have just recently stopped cimzia at around 27/28 weeks into my pregnancy. My rheumatologist said if it was just there decision they would have taken me off all medication before I became pregnant but my GI said it was better for my health and babies if I stayed on cimzia until the begining of the 3rd trimester. I think each dr will give slightly different advice as there isn't much data for them to go by about pregnancy and biologic medication and also everyone's disease is so different so the risks change.
If you don't feel comfortable continuing your medication then maybe speak to your GI more about that choice and if he is in agreement what would be a back up plan if you did become sick.
I'm just coming up to 30 weeks now and seem to be doing ok but it's has only been a short amount of time with no cimzia.
Wishing you all the best

 

[laura2015]

Ladies thank you so much for your feedbacks! I think I'll continue in this case..however will try to have longer injection cycles and stop at week 30 if possible. What I've also read now is that Cimzia has longer protein molecules and doesn't cross the placenta as Humira or Remicade does. I didn't even know about this medication. For me it's too late now to switch but if I plan to get again pregnant maybe it would be worth changing.

All the best to you too!

 

[InkyStinky]

No prob! I read a lot

Another resource is the infant risk site (Texas Tech) -
http://www.infantrisk.com/content/inflammatory-bowel-disease-pregnancy-and-breastfeeding
http://www.infantrisk.com/sites/default/files/files/IBD drug table.pdf

IBD just stinks. I can only imagine how hard risk/benefit analyses are when you are taking not just about yourself but about your baby, too! Take care - all the best to you, too!!!

 

[Domsmom]

Hi Laura
I am currently 23 weeks and on Remicade. My Last infusion will be at week 29 and then I will be induced around 38 weeks and start treatment ASAP after delivery. What are the thought of your GI and OB?

 

[laura2015]

Thanks for the further links. That's the thing..you not only take care anymore of yourself but also about your baby.

As mentioned previously, my Gastro wants me to continue and my Gyn is using the same source of research papers. At this point my health is more important and there is enough evidence that I wouldn't comprimise the health of the baby too. I think that stopping at week 28 and extending the Humira injections right now is a good way. I also don't have a very aggressive form of colitis I'd say and don't think that this scheme will do any harm. I'll talk with my Gastro again.

Thanks for your feedbacks!

 

[laura2015]

Just read your articles..and what is interesting is that they talk about diet and IBD.. So far I haven't met a single Gastro who thinks that dietry changes can help with IBD. I actually did the SCD diet last year for 12 months and now I'm loosening it a bit with sometimes rice, potatoe and glutenfree products. I'll continue with this diet but won't be as strict as last year. I do think that it helps but never was without medication to confirm that 100%. I just don't want to sacrifice much more for this illness...its sad as it is to be diagnosed with it. But would go back to it 100% if I'd feel that my IBD is getting worse. Are any of you ladies on the SCD or any other diet? If yes, does it help?

 

[Lady Organic]

shall you decide to decrease you injection calendar or stop it, I would suggest you get 5-ASA enemas everyday for a better chance of maintaining remission during your pregnancy. have you ever tried this treatment? is your colitis left sided only?

 

[Domsmom]

Sorry for the repeat question...I'll blame it on pregnany brain. Read all the previous posts and by the time I wrote my response, I must have forgot what I read

How are you feeling otherwise? Tomorrow I go for my 4th Remicade infusion and then only one more in April before baby!!

I've tried many diets...some helped the symptoms, but none put me I'm remission. My personal opinion is that this disease is 10-20% diet related and the rest is caused by stress. Even just little stresses that you don't think are bothering you. All of my hospitalizations (in hind site) I realized occurred within days of a major stressor. My best advice is to try to eat healthy, exercise, and remove as much unnecessary/bad stress as possible.

 

[Lady Organic]

yes, excercise is a good point, A recent research i watched the report on a scientific show on tv last year have compared sedentary pregnant women to a group of women who did cardio-vascular activity 30 minutes 3 times a week (indoor biking). The results were spectacular with superior cognitive capacities (such as memory) for the babies. This phenomenon had been previoulsly observed in rats as well. so we can only imagine how physical activity can play on the immune system, both for us and for a baby in the womb, I really believe this can help.

 

[laura2015]

Yes I also agree with exercising. Did you do the diet for a longer period? I somehow do think that this SCD diet helps, but it has to be done properly and for a longer period. I'll continue with it even if not as strict as last year. What was however interesting is that as soon as I stayed on the diet for 3 months my results where better..so it does have some kind of impact even if its not 100%.

My colitis is right sided however in the first screening it was the whole upper colon but in the second screening right sided. Its not a typical colitis and therefore called colitis indeterminata as the rectum and ileum is fine and only the top colon part is causing the trouble and is chronic.

Pentasa I've taken almost 9 months previously. Unfortunately I always have stomach pain after taking it..I've a very sensitive stomach. My doc suggested it to me as well once I stop taking Humira. Is this also safe for breastfeeding? As I might even try to extend the Humira pause while breastfeeding.

I feel good and don't have any stomach issues so far.

Thank you all!

 

[Lady Organic]

I have indeterminate colitis as well since 2001, so I get what you are taking about! My ileon has been once inflammed along with top right colon, but only in one isolated episode, as opposed to rectum and left colon, my usual, really critical spot and really looking like UC. Sometimes, I think I may have both CD and UC!

Ive been dieting for 4 years now, but I am yet to see any help. Im not giving up as I am continuing it for general health now. If you feel like the SCD was helping you, I really encourage you to continue it at 100%.

If you can tolerate the pentasa while pregnant and while you breast feed I think that could be a good option.

 

[laura2015]

Thanks for the encouragement. My doc said that for him it could be 80% colitis and maybe 20% crohn. However while doing the colonoscopy the small bowel what he could see looked fine..as it's apparently difficult to have a better look at it. There is also no bloodtest to differentiate the Colitis from Crohn..so it's guessing and the therapy is the same. I'll go for the Pentasa definately. Did you have periods without medication? I so hope that one day I'll be fine and won't have to take any medication. The meds do help..but are also a health risk..for other illnesses because of the immunsystem. I just still can't imagine taking them for the rest of my life day by day.

What kind of diet are you on? Scd is a very strict and Limited diet and I just don't want to continue like this. A combination of Paleo and Scd is more appealing to me.

Thank you!

 

[Lady Organic]

There are some blood test called P Anka and P Aska antibodies easy to run which can help orient a diagnosis. You GI prolly already done it :

http://www.ncbi.nlm.nih.gov/pubmed/12050913

My results are more suggestive of a CD.

Right now I am fallowing some guidelines from different diets combined, but one you could try is IBD-AID :

http://www.nutritionj.com/content/13/1/5

its not as strict as SCD because you can eat legumes (lentils, etc...), but its inspired by SCD.

Unfortunately, I had no period without medication. Pentasa and the like were not strong enough for me and I need 50mg of prednisone to reach a strong remission. I stopped Purinethol 5 years ago after about 6 years in full remission, was well for about a year and the flare came back pretty bad. It took about a year to finally put it under control (as purinethol was out of stock and Imuran strangly didnt work for me). At the end of that flare year, I developped arthritis. I highly regret stopping purinethol back in 2010. I was inspired by my friend's husband with severe indeterminate colitis, who stopped purinethol and who is still in complete remission since over 7 years now, meds free. he got the luck, but not me. Its really difficult to predict the future of a patient, as we see each patient is truly different. Ileon involvement was seen in me 8 years after initial diagnosis, before that it was only rectum and sigmoid. Time helps orienting towards a diagnosis, or confuse even more lol. As for me, I have no hopes of being meds free, unless I engage in procedures such as Fecal transplant, for which I have great hope. It saddens me greatly having to take these medication, but I have no choice. I know myself and my disease behaviour since those 14 years and this is absolutely out of the question that I live without some kind of treatment.

 

[laura2015]

Thank you so much. No..my Gi Even said that there are no tests for that...unbelievable. Thank god there are Forums like this to exchange that. As I've a new one..I'll ask him next time to test. I also want to try the fecal transplant..it can't hurt. The diet Sounds interesting..in the scd diet you can eat legumes..I at the early stage didn't tolerate it and didn't try since then. Maybe I should try again.

Have you ever tried Antibiotics e.g. Clont? My colitis started after an asia holiday..sometimes I think that I got an infection there and because it didn't get cured on time with antibiotics it turned to a colitis. I know it's naive..but it was my trigger and few months afterwards it was diagnosed. I actually never heared from your medication which put you in remission. Is this something like Humira? For me Humira is working so well..and I really hope it'll continue like this. Pentasa didn't work at all in the flare and Cortison Never put me in complete remission and I had quiet a few sides effects of it too. Then the next stage was Humira which put me in remission. I have also joint pains while flaring..still sometimes I have that feeling but very seldom.

 

[Lady Organic]

as I was diagnosed in 2001, Biologics were not quite on the market yet. when you had IBD, you could only get the Pentasa style medication and then for more severe cases, the immuno-supressants (such as Imuran and Purinethol ) They have been used for decades for maintenance of remission in IBD. Its a very mild form of chemeotherapy. Im back on purinethol since 2 months (as I was on methotrexate,another immunosuppressant more commonly used for Rheumatoid arthritis, but now in IBD too). i relapsed while on methotrexate. So back on purinethol now and I am hoping my blood reports will continue to be good, because if they show some signs of toxicity, I'll have to stop purinethol and I only have Biologics left in store for me.

about Prednisone, it took me several trials before understanding that 50mg was my dosing. My first GI was somewhat conservative on the pred. at a 30 or 40mg start, I would not get full resolution of symptoms or would flare very rapidly then after. Now I know I need 50 when things are getting out of control. What was the highest amount you had?

Prior to my diagnosis in my early 20s, I can recall 2 occasions where I took antibiotics, it was for urinary track infections and maybe once for a vaginal bacterial infection. I also had several vaccines...which I belive have not proven inocuity in humans. I believe there is a possibility they disrupt the immune system, but I know this topic is really hot!

we often hear infections of the GI track preceeds a IBD or a flare. You case makes a lot of sense. Its totally possible this infection was a trigger.

 

[laura2015]

Prednisone I tried after Pentasa didn't work on its own. Unfortunately It didn't work as it should for me. I started with 30 I think and increased to 50. Unfortunately my inflamation never went down as it should and while reducing I was flaring again. The side effects where also very bad to me. I had a swollen face and neck for months..had a moon face . I couldn't sleep properly and was very nervous. My immunologist also told me that its bad for my fertility and bones. I had issues getting pregnant I've to say. As at one stage I just didn't get the inflamation down my doc said that we've to swich. On Humira my inflammation went down to almost 0. How do you check your inflammation level? My doc is testing the Calprotectin and the CRP.

 

[Lady Organic]

I get really agitated on pred too, but Im lucky enough I dont get the moon face! I remember my first GI being happy and somehow surprised when he was seeing me with a non-puffy face! This side effect seems to be pretty common. I know its a bad medication but it can really be a saviour as its action is usually very fast. Ive seen some people taking 60mg here in the forum, but Im not quite sure what the maximum for home treatment can be. Biologics usually kick in fast too, but not immuno-supressants like Purinethol. They take about 6 or 8 weeks to kick in or even more. I understand why your GI skipped these medication as you seem to be not very responsive to prednisone, so a rapid treatment was more adequate for your situation.

as for tests, I just got my first calprotectine result!!! im in normal range (36). Im am super glad about that. I have been told by a IBD GI that it can predict up to 6 month before we start to feel a flare. But I am yet to know if this test is really reliable for me. The downside with Caprotectine here in Québec is that it takes forever (about a month) to get the result. And its going to take even longer for a little while as I have been told by the biochemestry department. Only one hospital analyses this test...

Im glad you have access to that test, you run it every 3 months or more often? and how fast can you get the result? I hope this measure will be reliable for me because nothing else in my Blood tests can help see I am relapsing. The CRP and sedimention rate are always good unless I have attained a very bad state, so when its too late.... Your CRP is reliable to show a debuting flare? I have also my plaletes which elevate when I am in a medium flare. Its more relaible than CRP for me.

 

[laura2015]

At the moment I'm doing it monthly and I get the results within a week usually. This is because I'm pregnant and thinking of pausing it soon. The CRP is not reliable enough as if you've another infection or the like it can be increased too. Mine is always a bit increased, maybe also because of my Hashimoto thyroid. So mainly the Calprotectin is being used for measurement. The plalates I'm not sure if I got tested..maybe..just didn't know what my doc tested.

 

[Lady Organic]

you're lucky to get the FC result so fast! The plateles always come with the complete blood count, so I am sure you get tested for that. A high number can indicate inflammation in the body. If you are interested, you should be able to get access to all your reports in the archives department of your hospital. I gather all my information (doctors reports, blood reports, tests, etc) since 2001 in a folder, very useful!

 

[laura2015]

I do that too. Just didn't know all the results. I'm doing every 3 months a big blood test because of Humira.

 

[laura2015]

Dear all,

I haven't been in Touch for a while. In the meantime I got a lovely baby and We're overwhelmed. However Humira did a lot of harm to me and my Baby in the end. I had a blocked nose for months and got always told it's because of my pregnancy. Then after a month or longer i got a bad cough..which didn't Go away. I was told thats also my pregnancy or i should Do an xray. I refused this. The cough was coming and going. Humira I stopped in Week 23 of pregnancy. After Labour the cough continued and i went to the Same lung Specialist. Finally After all testing they Diagnosed in a Pcr Test that it's a tuberculosis. Which is at the Moment not active however did some harm to my lung already. I must have picked it up during my pregnancy. Last year before starting Humira, tuberculosis was negative. Few days ago my Baby also got tested positive on the Skin test. Now We're both taking medication for a very Long time. I can't Tell you how I'm feeling..it's a nightmare and i regret so much having taking Humira during my pregnancy. I risked the life of my Baby and myself. I hope the treatment will now help us and won't harm too much my baby. Maybe somebody had a Similar experience or has some tipps. I'll also Open a new thread with this topic..just wanted to update in this first

Thanks

 

[Lady Organic]

Im am so sorry to ear this. what are the treatments you are on for TB?
and what will be your treatment option for CD?

 

[laura2015]

Thank you! For me 6 months of 4 antibiotics and my baby 3 of them for 1 year. These are Special antibiotics for Tb. As for the colitis I might be able to use Budenosid as it's working only local. No biologics for me anymore..they surpress my immunesystem too much.