HELP. Nervous about starting Humira biological theraphy

Bones, joints and muscles
1

dear friends

i have just been approved for humira for my AS my pain is severe and affects my feet, hips, lower back and neck. Even with Tramadol I'm struggling. I was delighted when I got the call but now a week later I'm very nervous......I've been reading the consequences of a lower immune system and wondered how everyone has experienced Humira? 

I would be be grateful for your advice and knowledge....if you have tried this theraphy ......how did you find it.....was it worth the side effects.....did it give more relief then the grief it may have caused with other illnesses? I know ultimately I have to experience it myself but just wanted to know how it's worked for others. I hope you will share your experience with me.

please mention which country you are in....so I'll know what to expect if ur in the UK like me. I'm in East London...Mile End hospital.

many thanks

juberia

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Hi Juberia, I am on Humira. First shot was terrifying. The fact that my face visibly swelled overnight and the next day didn't help too (later on it turned out that my son got a virus that causes that, unlucky start as I almost stopped the treatment)... It was magical at the beginning - the pain has almost gone in days. After a while it started to help less. Going this week to another consultant. I had no fever since I got on Humira, including when having pneumonia. My cuts just stay open for few days and then kind of dissapear. That's as much as immune system is involved. I am closely monitored - blood tests and so on. The first time ever that the blood tests came back abnormal is last week / liver and some other staff is not right. Don't think it is due to Humira but other silly antibiotics I was prescribed. At least I hope so because I really want to get back to it. Anyway, it can be a blessing - after few shots the injections are getting sort of routine. I hope that you won't have any side effects. And that it will help you. Good luck.

P.S. Not from UK but I guess that the processes are rather similar worldwide.

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Hi Juberia

I am from the UK.  I was prescribed Humira as my first anti TNF.  I wouldn't worry too much about the lowered immune system, you just have to be a bit more sensible when around people with infections etc.  I've noticed a bit of a dip in my defences, but some of them might be coincidental.

I didn't get on with Humira too much in the end, it gave me flu like systems for the first 48 hours which didn't seem to reduce as I stayed on the medication.  It completely removed my pain initially (I was taking up to 8 tramadol a day previously) but this only lasted for 3 months and then the effects started to reduce.  One thing I would say is that I think if you get an infections whilst on Humira, stop taking it and take the antibiotics, then restart your humira.  I kept taking the Humira and this seemed to intefere with its effectiveness, and I never got it to work again.  Perhaps this is just coincidence again, but that's my experience.

I changed to Etenercept and had a similar experience in that it worked great for about 6 months, then it became less effective.  I didn't have any flu symptoms on that medication though.

I've then changed to Cimzia and it's amazing.  Some side effects first 24 hours, but pain free (to a certain extent, you still have to work at it with exercise, flexibility and diet).

I think looking at your diet alongside the anti TNF is a must, my wife and I work really hard with this.  My rhumatologist sent me to a dietician and I'm on the FODmap diet now which is brilliant to reduce bowel inflammation and all over body inflammation.

Humira might be the right anti TNF for you, I think it's different for everyone.  Best to give it a go, don't worry about the side effects, they stop after the first day or so even if severe, you can't carry on taking tramadol all the time!

Good luck with it!

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Hi B., I have a question - at which point did you decide to turn Humira down? I am asking this as in my country once you get off biological for another one, you are off for good. Clinical trials do not show benefits of retaking something so Drs simply don't prescribe these. I wonder as I think of switching to something else but fear that it may get worse...

Thanks,

A.

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Hi A

I didn't make the decision, the doctor did. She could see the Humira wasn't taking my pain away any more. Typically in the UK they let you try 2 anti TNF treatments before taking you off them completely. My case was different as I had infections which stopped them from working so they tried me on a third. They get me to fill in a pain chart each visit, this is how they decide what to do with my meds.

Hope this is helpful

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Morning Ama

really appreciate your reply. I usually get the cold quite easily but maybe it's all to do with having this autoimmune disease. Humira may just help all around....or so I am hoping. I can tolerate mild side effects...hope I don't get serious side effect. We have the NHS which is a blessing as well as a pain.....we only get two checkups a year and my rheumatology keeps getting moved....my next app is in December. You probably get more monitoring in the US.

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Hello

thanks so much for your reply...it really helps. Please can you tell me more about this diet...it's something that I really want to work on. Is it anything like the London low starch diet by DR Alan Ebringer? 

I feel for you....I'm on Tramadol and the effectiveness is wearing off....that's the thing with painkillers isn't it....they wear off in time. I think the diet is what can give long term results. I have to confess I need to work harder on this. You are fortunate to have your wife as a partner in this. My husband helps me with everything in the house but he doesn't understand the importance of food and how it can affect ur health. I have to muster the strength to go it alone....he will follow once he sees success in what I'm doing. He is a good person just doesn't understand everything lol. But ultimately I know it's my own responsibility. Could you stay in touch please....I need a bit of help from people in the same situation as me.

thanks

jubs x

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Ps. I'm not following low starch but have reduced rice consumption by half. I'm Asian as you can probably tell from my name.

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Thanks B., this is very helpful. Actually Humira never completely took my pain away (smaller joints wise - on the contrary, but it did help with the pain in the lower back). I just felt much more energy when being on it so dealing with pain was easier. Never filled in a pain chart in my life...

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I have bad back pain so glad to hear that and the energy bit...I need energy for my kids

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Hi Jubs, use your family dr for monitoring. He/she can surely give you blood tests. If you feel something abnormal don't hesitate to contact for help. Ask questions. The diet thing helps too - if your diet is based on rice, move to whole rice instead. Less carbor is generally better. I dropped off diary products, fat and so on. Everyone finds the balance that works for him/her but it's better to be on healthy food than to take meds, right? :-) good luck and keep us updated.

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Hi Jubs

i'll certainly keep in touch to help out, no problem.

diet wise, my diet is called the low FODMAP way. This is a reduced ferment able carbohydrate diet. It reduces the carbs that naturally don't get digested until your bowel, to relieve the strain on your bowel from trying to break them down.

As AS is an auto immune disorder, you're more likely to get other auto immune conditions, I'm suspected to have 2 others (coeliac disease and inflammatory bowel syndrome). I have the issue that all 3 conditions can set each other off, so diet is a key factor in reducing my AS from flaring up. I found that even though the anti-TNF treatment was removing my pain, I was still feeling lousy and lifeless. It wasn't till I went on this diet that I've really started to feel indestructible. I find I'm at my best when super act, and eating plenty but within the remit of this diet. 

I've cut out the following:

Gluten, wheat, pasta, bread etc

fructose and glucose (in lots of processed foods and some more acidic fruits)

artificial sweetners

garlic, onion, beans and pulses, 

i eat a lot of rice, meat, gluten free bread and cakes, lots of chocolate! Eggs, potatoes.

i'm sure you could google this diet. I've been on it for 5 weeks and really noticed the difference already. I've got a lot more energy and I feel like I'm giving my body a chance to work with the Cimzia to improve my muscle strength.

its an uphill struggle, but I feel the incline has levelled out a bit recently.

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Thanks so much....please keep sharing,....

is is there a book or a website or specific search I could do into Google.....there's so much on the internet I find myself drowned on it. Who is the author or doctor behind this method....

i will ill join in this,.....I know o need to take some role in helping myself....medicine isn't the only solution. Diet has no side effect so it's all good. 

Jubs 

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Ur story is amazing and one I'd like to copy.....tell me have you ever tried Dr Alan Ebringer low starch diet? I didn't try it coz it cuts out rice....but I reduced my rice.

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Hello

do you take any vitamins or minerals? And do you know which are generally acceptable whilst on Humira?

my rheumatology care is terrible twice my appointments have been cancelled and delayed so to get to see a Rheumy I'd have to wait 9 months and my doc doesn't know much about biological. So I wanted to know from fellow users if they know what's allowed....please advise

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Hello

hows it going? I hope you are well

ive been 

looking on YouTube and there's so many vid on FODMAP is there a book or a specific website or person I could search for to get the best asvice

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Sorry I meant best source of information.

also do u take any vitamins....do u know which vitamins are allowed....eg iron vitamin d and vitamins b complex.....ur knowledge would be gratefully received. Thank you.

pls PM me websites as it may get deleted by moderator

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My booklet has come from research and Kings College in London, www.kcl.ac.uk/fodmaps

hope this helps

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thank u.

pls private message the bit the moderator took out

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Hi I started humira this week I was nervous too soo far so good I should have been diagnosed in 2002 but they failed to view all of my Mrs scan pics