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#277511 - 03/11/17 06:42 AM Humira stopped working..?
Mikefn Offline
Registered Visitor

Registered: 05/08/16
Posts: 25
Hey everyone..
I was diagnosed with AS almost a year ago, i started to take ibuprofen for the first 6 months, which stopped working and wasn't good enough.

My doctor put me on Humira in Jan, i took Humira and it was really good for my spine pain and joint pain, excellect.. But my tendos were still not 100%, which was pretty sad to me, cause i wanted to lift weights, and i can't.

Anyway, for the last 4 weeks it seems that the pain is back.
Humira stopped working suddenly.. i woke up one morning with pain in my knees and ankles, and shoulders too.

No hope for Humira anymore? i'm pretty young(21 y/o), i hope there are more options. Humria worked really really good for a month or month and a half. Is it because i didn't take MTX with it? my doctor told me to take MTX, but after reading the scary side effects of MTX and its effects in sperm, i couldn't take it..

Is it weird? am i lost? what should i do from now on? I can't let this bloody disease take an active part of my daily life..
I started swimming ever since Humira stopped working. It seems that the swimming helps my tendos, but not the spine pain..

I had hope for a month or two with Humira, but it seems that i am slowly going down into a path of madness and depression.


Edited by Mikefn (03/11/17 06:46 AM)

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#277513 - 03/11/17 02:38 PM Re: Humira stopped working..? [Re: Mikefn]
GardenGnome Offline
Registered Visitor

Registered: 08/28/16
Posts: 85
Humira did wonders for me instantly the first time i took it. IT worked within an hours of taking it. Then it worked amazingly for 2 weeks. Then stopped working. Just woke up one morning with all my pain back. My doc told me to keep taking it so I did. And everytime i took it I got worse. So i stopped after 4 months.

Humira or any biolgic drug can stop working very quickly as antibodies are formed to the drug which renders the drug ineffective. IT can happen at anytime. Sometimes right away or sometimes it may not happen for 10 years. luck of the draw and everyone is different.

MTX does slow the progression of antibodies being formed but does not stop it. So th MTX may have made Humira work for a little longer maybe 2 days maybe 2 more weeks but really nobody knows.

There are other biologics to try. If one doesnt work another one may work. You just keep trying other ones. Remicade, Simponi, Enbrel, Cimzia are a few other ones to try. They may work for you even though Humira didnt. They all have different mechanisms of action even though the target the same TNF.

There are alots other type of drugs that target different molecules tht work for AS like. Like Stelara etc. Your rheummuy should know all about these.

If all those dont end up working then you try prednisone which has sideeffects and may not help as much for spinal inflammation but still helps alot of people. ITs been around for many decades and is used OFTEN by millions of people for all types of inflammation. ITs a strong ani inflammatory.

The moral of the story is dont give up dont get depressed there i s alot of other drugs you can try and all you need is 1 good one. And there are also many mroe in clinical trials.

After all that you should still be looking anti inflammtory diets. Strict diets help alot of people and even put some people into remission.



Edited by GardenGnome (03/11/17 02:43 PM)

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#277515 - 03/11/17 04:15 PM Re: Humira stopped working..? [Re: Mikefn]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6461
Loc: New York
Yes, Humira was fabulous and then one day it turned into water. I woke up barely able to move. Sometimes our bodies build up anti bodies against the medications.

MTX is usually added because that slows that process down along with your next medication. MTX is not as bad as it might seem, I took it for years with no problems and at a very high dose. There are special folic that can be added.

I too refused MTX in the beginning and it was a big mistake. Because I went through all three (the only three at that time) very quickly. MIracle to cripple rather rapidly. MTX has been around for 30/40 years used by millions upon millions of people.

Good luck, your job is to prevent damage until there is a cure.

Anna
_________________________
Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#277519 - 03/12/17 03:59 PM Re: Humira stopped working..? [Re: Mikefn]
Sheep1 Offline
Registered Visitor

Registered: 08/12/15
Posts: 210
I had looked into antibody formation before in patients taking biologics. At least in the medical literature (which does not always translate to real world patients), it seems as if Humira has the highest rate of antibody formation, Enbrel the lowest. However, many people make antibodies to the TNF alpha drugs and don't notice any effect at all and the drug is still working.

Your doctor is right that MTX can slow antibody formation and make Humira last longer. There also seems to be a synergistic effect- the MTX works by reducing inflammation in the peripheral areas like feet, knees, fingers, etc, but doesn't do much for spine pain. Humira works on the spine inflammation. By reducing the inflammation in the peripheral areas with the MTX, the Humira can more effectively work on reducing spine inflammation. The side effects of MTX are minimized by taking the lowest dose and taking 1 mg folic acid every day.

If it were me, I'd ask is if you could change frequency of shots. I had knee surgery in May and my Humira went way down in effectiveness after surgery. Before surgery I felt like I was 20 years younger, my fatigue was gone as was most of my pain. After surgery, after a few months when I wasn't getting better, my rheumy changed my Humira dosing to once a week and a month or two later, put me on MTX because my fingers and knee were still bothering me. Wow, the combination of MTX and Humira has been amazing. Right now I'm doing much better and the Humira is working again- I'm now tapering my dose out again, and I'm now giving shots every 10 days. I still do the low dose MTX every week. I'm now feeling so good that i'm lap swimming 1.5 miles three times a week. Very little pain, and my fatigue is much reduced again.

My understanding is that once you go off Humira, if you ever try it again, it may not be effective at all. I would give it as much chance as possible before getting off of it.



Edited by Sheep1 (03/12/17 04:31 PM)
_________________________
48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009

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#277524 - 03/13/17 03:40 PM Re: Humira stopped working..? [Re: Mikefn]
Cake Offline
Registered Visitor

Registered: 08/08/13
Posts: 130
Loc: Madison, Wisconsin, USA
Another factor to consider is that with these sorts of autoimmune diseases, there can be an ebb and flow of symptoms, or "flares" where the symptoms get worse. These can be very subtle and unpredictable. So even if a medication is working, there may be times when it doesn't seem to work as well.

Also, if a medication is working to decrease symptoms, a person may increase their overall activity because they are feeling better. This can lead to a flare of symptoms because the person exceeded what their body can really handle even if they felt like they could do the activity at the time.

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#277525 - 03/13/17 04:17 PM Re: Humira stopped working..? [Re: Mikefn]
Winston Online
Registered Visitor

Registered: 06/30/16
Posts: 188
There are lots of reasons why it may seem like Humira has stopped working for you, but I think it's too soon to tell. I sometimes think I get a bad batch of drugs (I'm on Enbrel, not Humira) because I feel worse for almost exactly a month. When my next month's shipment arrives, I feel better again. Anyway, point being, give it a little more time before you give up on Humira.

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#277534 - 03/14/17 07:44 AM Re: Humira stopped working..? [Re: Mikefn]
Flowers Offline
Registered Visitor

Registered: 07/18/12
Posts: 12
I agree with the others, don't give up on Humira too soon. I still flare on biologics so I will take high dose steroids or steroid shots for flare ups and my doc just added Arava in December and that is helping me not flare. I tried methotrexate in the past and it gave me nausea so that is why I am taking Arava.

LDN helps me with tendon pain. I get more tendon pain on biologics.

Methotrexate and Arava help the peripheral pain so I think it is worth adding either one to your biologic.

Keep us posted.

Shari
_________________________
Arava, Simponi, low dose daily Prednisone, Armour thyroid

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