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#519745 - 07/05/19 09:20 AM Biologic complications
Luvnlife Offline
Member

Registered: 08/08/12
Posts: 48
so last year I decided to do biologic because my AS was spiraling (went off work on disability - not great) and first they wanted Stelera which caused crazy skin issues, like when the sun touched me my skin looked like hickies - and no disease improvement
At all - zero.

Switched to Humira and had an amazing improvement really fast, like by dose 3 90% improvement. But then i switched to the non painful one ( everyone keeps saying it’s the same but it’s not ) and I swear my body just crashed. Went to ER a few times, was ignored because most of medical community has zero idea what to do with biologics. They aren’t used much outside of big cities and older med school grads haven’t kept up so all I got was blank stares in the suburbs. I passed out once, was getting awful dizzy episodes, couldn’t walk the steps or bend over without getting really disoriented, felt like someone was turning my body off. Did a bunch a test apparently my blood pressure was crazy high but would randomly plummet. Caught it on a tilt test - thank God Drs can see it’s real because were testing me for drugs and telling me I was having panic attacks. Nope to both, not a nervous sort and I don’t even drink. Put me on BP medicine but it was making my pain worse. Anyway, some of my blood work has been weird too so I’m getting an adrenal MRI. just sharing because I couldn’t find anything out there if people having complications, or bad aftershocks of treatment so now if it happens to someone at least there is me saying, yep, it’s not all rainbows. Right now I’m on nothing, even afraid of Tylenol and just waiting to see what is found in the MRI.

I think there is something up with that pain free citrate free version, if I could go back I’d just suck it up with the shot.


Edited by Luvnlife (07/05/19 09:22 AM)

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#519779 - 07/12/19 10:57 AM Re: Biologic complications [Re: Luvnlife]
Bry4 Offline
New_Member

Registered: 10/08/12
Posts: 7
I have used those in the past and cause sun problems fro me also. So far Enbral is the only one that does it to a min.

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#519789 - 07/13/19 08:00 AM Re: Biologic complications [Re: Luvnlife]
JamesF Offline
New_Member

Registered: 07/10/19
Posts: 6
Loc: New York, NY
Luvnlife, thanks for sharing this. I hope you get some answers from the MRI soon.
I Just started taking Enbrel and my skin feels itchy and irritated in the sun. I've had some anxiety issues but not sure if it's from the drug.
_________________________
HLAB27 positive since 2001. Fighting AS to run.

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#519854 - 08/12/19 08:55 PM Re: Biologic complications [Re: Luvnlife]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21341
Loc: Upstate NY
I did the regular humira june 2013 til about a year ago and now have been on the citrate free humira for about a year and both work the same and both have been wonderful for me except that the citrate free one doesn't hurt.

I take it weekly and it has been very helpful.

but I do still flare just not as often as badly as I used to. About once a year i need methylpred for my neck and about once a year i need methylpred for my SI joint.

So maybe you just went into a bad flare?

the humira does help a lot for me, but sometimes it is no match for my flares, but instead of needing methylpred every 10-13 weeks, it's now once or twice a year.

taking it weekly has also been a game changer compared to taking it every two weeks.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#519885 - 09/18/19 09:54 PM Re: Biologic complications [Re: Luvnlife]
MichaelG Offline
Lurker

Registered: 08/05/19
Posts: 1
Loc: Iowa
I have just recently been diagnosed with AS (8/2019).
I started taking the citrate free humira (just took my 3rd dose), which I use ever 2 weeks.

The shot is surprisingly painless as I was expecting to have some pain, but I still get nervous whenever I have to give myself the shot.
The next day I already started feeling better and after 2-3 days my back pain was gone, but I also read a lot of success about going on a low/no starch diet.
I never realized how much pain I was in till I didn't have it.

One side affect that I am experiencing is a headache which seems to feel mostly like my head is pulsing, but at times will be painful. Ibuprofen and Tylenol do nothing for it, but Excedrin has been working.
I am trying to not take any NSAIDs so if anyone has anything that seems to work for headaches I am willing to try smile

_________________________

Michael

AS, HLAB27 Positive (8/2019)
Humira (every 2 weeks)
Low/No Starch diet
_________________________
_________________________

Michael

AS, HLAB27 Positive (8/2019)
Humira (every 2 weeks)
Low/No Starch diet

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#519891 - 09/25/19 07:14 PM Re: Biologic complications [Re: Bry4]
Luvnlife Offline
Member

Registered: 08/08/12
Posts: 48
Glad you found something, it’s wonderful to get relief


Edited by Luvnlife (09/25/19 07:19 PM)

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#519892 - 09/25/19 07:18 PM Re: Biologic complications [Re: JamesF]
Luvnlife Offline
Member

Registered: 08/08/12
Posts: 48
Hi, so the MRI said adrenals were ok but seems my neck isn’t great. I still have no idea what caused that but now ihurting seems to have moved into my upper torso which stinks. I haven’t done that medication, it seems all have wicked side effects, we just pick what we can live with. Did they do anything to the itchy skin to help like lidocaine maybe is it all the time or only sometimes? Hope you are doing ok

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#519893 - 09/25/19 07:21 PM Re: Biologic complications [Re: Sue22]
Luvnlife Offline
Member

Registered: 08/08/12
Posts: 48
Well I will say that Humira was working amazingly for AS its just that it kept turning my body off - felt like turning off a light switch - I would just power down. Now I’m getting weird tingling in hands and arms that was not there before so it’s freaking me out a little bit

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#519894 - 09/25/19 07:26 PM Re: Biologic complications [Re: MichaelG]
Luvnlife Offline
Member

Registered: 08/08/12
Posts: 48
I’m glad you were tolerating those medicines well. they worked wonderfully with the AS, it’s just the rest of my body that was crashing & I’m a whole me so that wasn’t so great.

it took a long time before they would put me on humira but at this point I went through some genetic testing and they are talking about going a little bit “upstream “ in biological- I guess once the immunologist and rheumatologist select together I’ll share.

Right now I am an untreated state and it is not terrific but at least I’m not feeling like I’m passing out all the time - that was very scary.

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#519933 - 10/23/19 04:52 PM Re: Biologic complications [Re: Luvnlife]
Luvnlife Offline
Member

Registered: 08/08/12
Posts: 48
Hi again, just stopping in to say that my RA Drs are trying Xeljanz for me soon. Not quite sure what to expect but feeling hopeful.

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