TNF Blockers

• By Boxerlover
• Posted August 26, 2008 at 11:53 pm

My docs wanted me to try these, but my insurance denied them. I'm not so sure to be upset about that because those meds are a little scary. Hopefully someone will be able to give you some input.

Melissa

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• By sarcoidjeff
• Posted August 27, 2008 at 2:58 am

Boxer, sorry to hear about the insurance probs - I think there is a special place in hell for HMO's and insurance company policy makers - a few weeks ago I got a frantic call from my wife - my primary (union) insurance said they would no longer pay for one of my wife's cancer meds as some low level decision maker deemed the drug too expensive - and since I couldn't afford the $2,000.00 a week for it I was concerned - called them back, got another decision maker and got it straightened out.
My doctor did give me the option to start them now or wait 6 weeks on the high dose meth - main problem is my lung doc is in Fort Lewis, Washington and I live in North Pole, Alaska. He said realistically he'd need to see me at least weekly on the TNF. But the good news is the internal medicine doctor here at Fort Wainwright here in Fairbanks trained under my lung doc and has experience admnistering TNF blockers. (I am retired Air Force so I get my health care through the Army when it is available).

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• By lwkmd1
• Posted August 27, 2008 at 4:59 am

Is your pulmonary MD treating the increase in the nodules in your lungs? Or is he treating evidence of active alveolitis (inflammation) as recognized by a high resolution CT of the lungs or a gallium scan, or recognized by worsening lung volumes/ diffusion capacity by PFTs.

Typically escalation of therapy is reserved for pts who exhibit evidence of worsening physiology, progressive symptoms that can't be attributed to other causes, and not so much to changes in nodule size. Many people with sarcoid will have awful changes on the xrays but exhibit NO progressive worsening of their physiology and no active alveolitis.

There are no large studies as it relates to anti-TNF-alpha therapy and their efficacy in sarcoid treatment..merely case reports.

If you are worsening and your PFT physiology is unchanged and there is no alveolitis..then your worsening is not caused by pulmonary sarcoid involving the lung parenchyma, and your doctor may want to consider pursuing other causes...cardiac disease, cardiac sarcoid (MRI of the heart would help), pulmonary hypertension, steroid induced muscle weakness, deconditioning, bronchospastic disease (all common co-contributors to morbidity in sarcoid that should always be considered and survailed for on a regular basis). The best patient is the most informed patient...you must become as smart at the MD in this disease---go to the medical text books.

Hope this helps.

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• By Cathy5
• Posted August 27, 2008 at 8:42 am

Hi, You can contact the maker of the TNF medication company directly. They have programs that might pay for your treatment. Everyones experience with the treatment is different. I was on Remicade for almost a year. It was like fertilizer in my lungs. I developed new nodules and the ones I had grew larger plus more scarring. I ended up back on the lovely prednisone which is hell in itself. Look up TNF on your computer and do your own research. It is scary with all the side effects but so is this disease so you have to weigh the pros and cons. Good luck..Cathy

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• By micheleb
• Posted August 27, 2008 at 1:18 pm

I did humira for over a year and it helped. I did shots weekly instead of the standard every 2 weeks. I had no side effects and never got any infections.

This past Feb I switched to remicade hoping for more improvement and its really starting to help a lot. I have more energy, less pain and swelling and just generally feel better. I am not cured, I still have fatigue and pain if I over do it but remicade has improved my quality of life immensely!

You will read all sorts of scary side effects. Lymphoma being the scariest in my opinion. The problem is that they really don't know if the TNF drugs actually cause more lymphoma or if people with auto immune diseases are more prone to lymphoma. I think you have to weigh the increase in quality of life is worth the possible effects of the drugs.

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• By valkman
• Posted September 7, 2008 at 2:18 am

Sarcoidjeff,

I've been on Remicade since December 2007. My lungs are stable and it's made a dramatic improvement with my joint pain. To limit side effects, my doctor has me take 650 mg's of Tylenol and 25 mg's of Benadryl. I also take 5 mg's of Methotrexate weekly. It has really helped me.... I will never go back on Prednisone, so this has been a wonderful alternative.

valkman

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• By priscurl
• Posted September 7, 2008 at 4:20 am

That is scary. My dad had lymphoma of the stomach and suffered 5 years of absolute hell before he died.

Pris

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• By greeneyes
• Posted September 7, 2008 at 10:43 am

I have been on Humira a tnf blocker for three years. For me i take it every two weeks. I used to take every week. But for me that was unbearable. Every shot i take the side effects are different. It's like each shot has it's own personality. Sometimes the shot make me feel sore and achy for 1 to 2 days. Some shots i take , the next morning i feel like i been hit by a truck. You also have to very careful about being around other people and young kids who are sick because you will become very sick. I work for the public and it causes me to pick illness more . For me , i'm feeling slow and tired for one week. And the next i feel pretty good. But this last three weeks i am experiencing gosh awful pain thoughout my body and i am on my good week. So take your time and read all the info out there, but if you need to talk more please feel free to write. Have a great day and find something to laugh about.

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