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Humira problems:need input.
#272718 11/28/15 08:05 PM
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I have managed four shots of humira and have had to stop. It flattened my SI joint wonderfully but it made my neck extremely painful and covered with swollen lymph nodes that were up to one cm in size(ultrasound). I ran slight fever with it and was extremely tired with it. My rheum gave me a zpak and nothing else. It did nothing for the lymph nodes or tiredness. I do not feel safe taking the humira because my doctor does not seem to take my obvious signs of infection very seriously. It has been six weeks since my last shot and while I am not as bad as I was in August when I started, my SI joint is starting to act up a bit. It is easier for me to get in a neutral position to aleviate sacroiliitis then a stiff neck. I want to try Enbrel but not if I end up the same. Has anyone had these issues with a biologic and if you did, was your rheum a little more careful with you than mine? Should I have gone to the ER rather than expecting my doctors to care? My diabetes dr ordered the ultrasound of my neck by the way and the funny thing? The ultrasound helped my neck to feel less stiff. Any ideas folks?


25 years a pharmacist HLAB27+(thanks dad!)iritis at 17, plantar fasciitis at 22, sacroiliitis at 25,first image at 31,diagnosis of AS at 48(hello medical community!!) it's all been downhill since Taltz, Celebrex,Trazodone,Tramadol,benztropine(antispasmodic), high Omega3,A&D to tame immune system,quercetin,bromelain) previous meds were Enbrel Humira Simponi, biggest issues are subacromial bursitis and weight gain on biologics. As of Nov 2021 seropositive RA
Re: Humira problems:need input.
theyoungestmuse #272720 11/29/15 09:48 AM
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Sorry that sounds awful. I haven't had swollen glands to that extent but just wanted to point out that steroids also suppress the immune system so the zpack might be contributing to keeping the glands swollen.


Shirley
Peripheral and axial AS diagnosed October 2011 aged 50, more than 15 years after the symptoms started. Also PCOS, GERD/oesophagitis/dysphagia, IBS, asthma,chronic rhinitis. Taking enbrel, methotrexate, folic acid, omeprazole, vitamin D, metformin, steroid inhaler and eating low starch/low GI.
Re: Humira problems:need input.
theyoungestmuse #272752 12/03/15 01:34 AM
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Did you have neck pain early in your AS journey?

I too am on Humira, 4 shots, and my neck is bothering me too. I was at my rheumy yesterday. I had neck pain like this about 20 years ago, slowly it decreased till about 5 years ago, since then I've had virtually no pain and now it's coming back.

My rheumy explained to me that sometimes when inflammation from spondy is decreasing, the old pain (which in my case might be some osteoarthritis or disk issues) may come back due to the tissue being less swollen. My SI-joint pain is also gone too, and I've been more active, and she explained that might also be contributing to my neck pain.

I haven't had the other problems you listed so can't help there, sorry.

Last edited by Sheep1; 12/03/15 01:35 AM.

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
Re: Humira problems:need input.
theyoungestmuse #272766 12/04/15 07:00 PM
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Did not have any problems with Humira, but since you have had tests, I assume blood tests too? That would tell if it was an infection.

In the beginning, I did have sinus issues and had to eat spicy hot food to keep them open--they were swollen. That ended after two three months--darn because I was milking it for Thai take out.

Sometimes you do have more pain in the beginning because the swelling around the joint goes down.


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.
Re: Humira problems:need input.
theyoungestmuse #272777 12/05/15 07:16 AM
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When I was first starting out with Humira, I would get severely inflamed folliculitis cysts a few days after every shot. That subsided when the medication built up in my system after about 6 months.

I recently stopped Humira and methotrexate for a cold, and as soon as I went back on it, I ended up with a cyst with the diameter of a quarter on my chin. It subsided over about 2 weeks, and I'm not having any folliculitis problems now.

Your symptoms sound a little more dangerous, so definitely be careful, but in general, some of the random infections and swelling that pop up when you're starting Humira can go away as your body acclimates. Though, methotrexate is a different story. I guess I restarted my methotrexate too soon after my last cold, because the same infection came back in force. frown


Dx 08/2014: Non-radiographic axial spondyloarthritis (nr-axSpA).
HLA-B27+, uveitis.
Meds: Humira (40mg/wk), Cosentyx (150mg/2wks), dexamethasone (0.75mg/day), gabapentin, baclofen.
Re: Humira problems:need input.
theyoungestmuse #273011 01/07/16 02:39 PM
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For what it's worth, I had far fewer side effects with Embrel than I do with Humira. I had to switch to the latter recently because of my insurance.


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