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Are tnf that bad? #281712
10/09/18 10:28 PM
10/09/18 10:28 PM
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worldofme Offline OP
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Every web site I read are saying tnf are bad blah blah blah...then here there promoting some herb or something claiming to cure arthritis.

So those serious infection causing death by tnf are real?

Re: Are tnf that bad? [Re: worldofme] #281714
10/09/18 11:34 PM
10/09/18 11:34 PM
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This is also a great question for your doctor.

Dr. Weisman talks about this in a spondylitis patient education semiar fast forward to 1:00:05 - 1:06:02.

https://www.spondylitis.org/Seminars-and-Webinars/spondylitis-educational-seminar-san-francisco-ca

He talks about the complexity of the issue, shows studies and shares his final understanding.

hope that helps.


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Are tnf that bad? [Re: worldofme] #281719
10/10/18 02:18 AM
10/10/18 02:18 AM
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worldofme Offline OP
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Wow I just watch the entire video about SpA. Looks like tnf are main stay with less infection without prednisone. But, what if you have an active in infection in your body hidden. How does tnf do then?

Yes, I have ask this same question to my Dr. There answer is dont know try and see. Lol

Re: Are tnf that bad? [Re: worldofme] #281729
10/10/18 12:57 PM
10/10/18 12:57 PM
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That's a really complex issue. And not everyone responds to same to biologics.

I'm currently on Humira. And in many respects, it's working. My pain and inflammation are GONE. In addition my ALT and AST numbers (liver enzymes) as well as my PSA number (prostate) dropped once I began the medication. So the inflammation WAS doing things to my body. No doubt. And Humira has had a positive impact on that.

On the other hand ... since starting Humira I feel mildly sick all the time. Over the summer it was a stomach bug I couldn't get rid of. Now it's an upper respiratory infection. My body itches a lot of the time and I've stopped sleeping well when that was never a problem before. I often feel ... and it's weird to describe it this way ... hot on the inside. I don't know if it's possible for the Humira to be working TOO well, but I wonder. I don't know if I'm having a run of bad luck or if there was an infection lurking in my body that the Humira allowed to come out or what's going on.

I feel trapped to be honest. I'd like to try going off of it. But I've read that if I do my body will build up antibodies to it and it may never be effective again. So I don't feel like I can stop. But I also hate being itchy, mildly sick and unable to sleep all the time.

I don't know what to tell you. In my experience it's been a mixed bag.

Last edited by MichaelSean; 10/10/18 03:11 PM.
Re: Are tnf that bad? [Re: worldofme] #281736
10/10/18 07:11 PM
10/10/18 07:11 PM
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seymour Online
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Anti-TNF are safer than NSAIDs and absolutely safer than uncontrolled AS inflammation.

Such a no-brainer to me but I guess some people can tolerate inflammation better than I do and have the luxury of hesitating.

Re: Are tnf that bad? [Re: seymour] #281739
10/11/18 02:12 PM
10/11/18 02:12 PM
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MichaelSean Offline
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Originally Posted by seymour
Anti-TNF are safer than NSAIDs and absolutely safer than uncontrolled AS inflammation.

Such a no-brainer to me but I guess some people can tolerate inflammation better than I do and have the luxury of hesitating.


I hear you. And I get what you're saying. Inflammation does terrible damage to the body well beyond the pain you can feel. And you're right ... it probably is a no brainer.

But the side effects, if you're unfortunate enough to have them ... they begin to get to you after a while. They have me. And they'd made me question this drug I'm on (Humira) which is many regards has done by body a world of good.

As I've said in another post, I'm anxious for the first few frosts (luckily I live up north) to see if the Humira has been exacerbating my allergies. If THAT has been the source of all the illness trouble, itchiness and insomnia I've had this spring and summer. I should know in a few weeks once the trees are bare and it's cold.

Last edited by MichaelSean; 10/11/18 02:13 PM.
Re: Are tnf that bad? [Re: worldofme] #281760
10/12/18 01:42 AM
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worldofme Offline OP
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Well that's the problem i have an active prostate infectikn and doc feels tnf outweighs prostate issue.

I read some horrible side effect story on Reddit. I'm guarantee to go septic or something yet spine hurts and nsaid arent doing much .

Re: Are tnf that bad? [Re: worldofme] #281815
10/17/18 02:17 PM
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worldofme Offline OP
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So guys / gals, I really really need an expert opinion from someone who has taken TNF blockers for a while. I'm getting really conflicting information from both my PCP, ID & Rheum.

Apparently, my next course of action is to start a TNF drug. The doctor (Rheum) have suggested this is a good course for now. My ID doc says if someone with prostatitis was to ask him if its okay to treat a patient with TNF he would say "yes" without a hesitation. PCP says he doesn't know what to say.

Knowing this is great, but however I have chornic prostate infection with known staph & e-coli, but we can't seem to get rid of them despite countless Abx. There is no point of throwing bunch a abx at something for months at this point. My worry is what if one of these bad boys from latent phase become active and go right into blood stream causing an infection. Now, of course I may be looking too much into this but what if.

While I was researching TNF and it's side effects there are lot of literature out there stating TNF can cause endocarditis or such. I really don't want another problem added to the list.

I have try NSAID and there okay. They help for few hours but really messes with my BP .

I'm really lost and I really don't know who to turn to for some advice. I hope someone here can shed light. TNF will be the only things my Rheum said that will slow down the spondy.

I'm not looking for medical advice just some info on risk tolerance.

Last edited by worldofme; 10/17/18 02:18 PM.
Re: Are tnf that bad? [Re: worldofme] #281817
10/17/18 04:37 PM
10/17/18 04:37 PM
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Originally Posted by worldofme
I'm not looking for medical advice just some info on risk tolerance.


I am glad you are not seeking medical advice because I have none to offer. Info on "risk tolerance" is highly individualized. You need to ask yourself "how much risk am I willing to tolerate". Nobody can answer that question for you. I understand your uncertainties in regard to your health care but realistically there are never any guarantees. The general consensus on this forum seems like the answer is "yes, biologics are worth the risk relative to the benefits. Some may disagree.

It seems like you have received 2 medical opinions from your Rheum and ID doc regarding the amount of risk there is. Your PCP had no opinion which is where I am at. Now it is your choice, whether or not you can tolerate the risk.

I suppose you could take an opinion poll and maybe get many more opinions, but it still boils down to "how much risk can YOU tolerate."

I wish you good luck with your decision.



Re: Are tnf that bad? [Re: worldofme] #281847
10/22/18 02:03 AM
10/22/18 02:03 AM
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worldofme Offline OP
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I'm just confused aren't people afraid of side effects of nsaid and tnf?

It's like people take nsaid 3 times a day where I take it once and feel ill get a heart attack or something .

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