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Humira, Enbrel, Remicade

saintmaybe

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saintmaybe Collaborator
saintmaybe
Posted

Anyone taking these for RA, Spondylitis, JA, or PA? I'm in the process of getting diagnosed with ankylosing spondylitis, and my doctor wants to skip straight to biologics because my case is now progressing quickly and antiinflammatories don't work for me. I'm curious as to what your experiences are, which one you'd recommend. Are the costs, side effects, and frequent infections worth it? I work in retail and am thus exposed to germs all day, so I'm a little concerned about being on immunosuppressants for a long time...

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Jestgar Rising Star
Jestgar
Posted

I don't have any experience to offer you, but I would suggest you look up the dosage and administration of each of the drugs. That might help you in making a decision.

saintmaybe Collaborator
saintmaybe
Posted
  • Author

I don't have any experience to offer you, but I would suggest you look up the dosage and administration of each of the drugs. That might help you in making a decision.

Yeah. One is at home and one has to be administered at the doctors office. I'd take the office administration if the benefits were worth it, but if the two aren't categorically different, I'd prefer at home administration.

GF Lover Rising Star
GF Lover
Posted

There are two other immunosuppressants that I've taken. Plaquenil and methotrexate (you have to take folic acid with this one. All of them have side effects. My rheumatologist took me off those two at the 1 year mark because of long term use concerns. I was on Dexomethosone longer but have also now stopped that. I was on anti inflammatory meds also which stopped working. The goal is to slow the immune system down to figure out exactly what is happening.

I'm assuming you've been tested for all common autoimmune diseases.

I had side effects from the methotrexate, you dose every other week and a few days of that week were crummy but not severe. I never got any full blown illnesses from them.

You may have to go by trial and error, see what works best for symptoms vs. The side effects. These are heavy meds so go slowly and record everything that happens on the med, good or bad.

It also takes time to find the right doses. You have to be patient. My only advice would be, anywhere along this road, if you start to feel in your gut that the benefit is not worth the risks or the long term risks, tell you Doc, he will have to develop another plan and work harder at fixing things. I wish you good luck with this.

mushroom Proficient
mushroom
Posted

I personally approve going straight to biologics. I got really screwed up with DMARDS and anti-inflammatories. I developed pneumonitis and such other terrible side effects from methotrexate I thought I was going to die. Anti-inflammatories taken as prescribed just about did in my kidneys. Plaquenil worked for a while on my arthritis but really flared my psoriasis.

In contrast, Humira has been a godsend. You inject it yourself every two weeks like an Epipen. It is easy and practically painless. You do have to stop taking it when you come down with an infection and I have gone varying lengths of time without it. My psoriasis always flares quicker than my arthritis when this happens. I have never been left writhing in pain - only when they were deciding whether to make me do the six-month TB dosing of Isoniazid because I had had a BCG vaccination as a teenager and the Isoniazid in New Zealand contained gluten :(. In the end we just started the Humira.

The way the immunosuppression was explained to me, and I have found this to be true, it does not make you more likely to pick up opportunistic infections - in fact I have had only one respiratory infection since being on Humira (3 years) as opposed to the 2-3/year I used to get while on gluten. But if you do get one, it makes it harder for you to fight it off. I have COPD so I always get a flu shot each year because I fear that if I got flu it may well kill me. But we all have to die of something And I don't want to die in crippling pain. :unsure:

Chickenwing Newbie
Chickenwing
Posted

I have been on Remicade and methotrexate for over ten years for ankylosing spondylitis. I went on it after trying a long list of anti inflammatory and other drugs. I am doing great. I have almost no side effects. This medication changed my life.

heathenly Apprentice
heathenly
Posted

My son has celiac disease and has been on Remicade for years, with very good results. Very few side effects (really just a little diarrhea and bleeding for a few days post-infusion; no pain), and the positive effect on his everyday life has been worth every second he sits in the infusion chair. Unfortunately, nothing else worked. He tried so many oral therapies I can't even count, and a couple years ago he tried Cimzia for a year, but it couldn't keep up and he had a slow decline.

If you don't have decent insurance, the cost of Remicade (or any of the biologics, I think) is astronomical. He hasn't had many problems with getting sick due to a suppressed immune system, but then again, he's 20 and otherwise healthy.

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heathenly Apprentice
heathenly
Posted

Oops-- didn't realized those initials converted to "celiac disease." He has Crohn's.

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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

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    • trents
      Accuracy of testing concerns

      By trents · Posted

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    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
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      By trents · Posted

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