Humira and TB diagnosis

General
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I wanted to share some updates and also any input on our current situation. My wife had biopsy in mid december 2018. Reports came back around mid Jan 2019, No lymphoma but she was diagnosed with tuberculosis. She did not had any other symptoms (no cough, no weightloss etc). Her chest CT scan was normal. So it was concluded that she has extra pulmonary TB. Few days later few more bad news, even though her Chest CT scan was normal, her sputum smear was normal but her sputum culture developed some MTB bacteria and she was told she had pulmonary TB now. Another bad news was after sensitivity test result were out she was also told that she had Drug resistant TB. We have started her MDR treatment now which is 24 months long.

History:
She was taking Humira. We did TB test before starting Humira which told us that she has latent treatment and our rheumy started her on INH (latent TB antibiotic) for 6 weeks before starting humira. Point is even after that she got TB.

Now she has to take Short term disability and we are worried she might lose her job and insurance in case that happens. Because we are not sure how employers reacts to these cases.

I am not sure why Humira was suggested by rheumy instead of enbrel (read few papers saying enbrel is safer for latent TB patients). Does it have to do with lawsuit that was filed against abbott labs because they were asking doctors to push Humira over other medication.

My wife is in pain and her fingers are also swelling now may be because of all stress. But we cannot take any PsA related medication for few years now (MDR TB treatment is 24 months long). I was hoping if I can get some help on this community to control PsA with taking any drug.

I didn’t mean to discourage anyone from taking Biologics. But I just want share our experience. I know all the warnings are on Huimira packet. But what nobody tells you is when something actually happens there is chance that you might lose your job, your insurance and you will be locked in your house and not allowed to go out till doctors say its okay. It was our 5th wedding anniversary this tuesday and we couldnt even go out to a restaurant to celebrate.

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So boiled down she had latent TB which they treated, started the biologic, discovered it was drug resistent and reappeared and now they are treating that.

Iunderstand your frustration but I don’t see how a different biologic or for that matter NO biologic would have made a difference. Help me understand please.

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Well no biologics would have helped because we could have avoided Active TB occurrence. That was also what our rheumy said later on.
But right now my concerns is how can we control her PsA which drugs. Any help on that will be great.

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That is very unfortunate and problematic. I hate to hear that for you and your partner. It is hard to say that if the biologic was avoided that there would be no problem. It sounds like there was not a problem and then it appeared on your horizon. Humira is a common and well used biologic for psa/psoriasis and other disease. As with any drug there are issues that must be weighed against the overall health profile. It sounds like the focus is treating the TB and getting that under control. I do not know much about the disease but it looks serious. Just pointing out that Humira is a common medicine that dampens the immune system. Was Humira a factor for TB? Yes, probably. Was it the cause? Hard to say. The problem is that whatever disease being treated can also be serious and it is not wise to leave untreated.

Your doctor should be able to help you focus on what to treat and work out a plan that fits the disease profile. There may be other drugs that can help while dealing with TB. The symptoms you are describing sounds like a combination of health issues that is creating a storm of problems. There are no easy answers to address this. I would just encourage you to work with your primary provider to coordinate treatment options with the specialist you are working with to treat each issue.

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I’m wondering it this isn’t a terrible case of having to pick your poison. The PsA needs treated and yet there’s a latent TB issue to be considered and treated as well.

You know the PsA is going to progress. The latent TB may or may not progress, there was no way to know it was going to be that resistant until it actually happened. So what do you do? In this case, treat the PsA and monitor the TB. Which, unfortunately, didn’t go well in this case.

She had latent TB long before the treatment. Did the PsA treatment allow the TB to progress? Maybe. But latent TB can also progress at any time for any reason (I actually have latent TB, I caught it at summer camp in 1984 from an international camper who had not been screened).

I’m sorry she’s going through this! Nothing is more upsetting then having the treatment for one serious issues created a second serious issues – kinda like people who have had organ transplants, the anti-rejection drugs open them up to cancer. But what do you do? Not have a life saving organ transplant because you might end up with cancer? Which evil are you going to go with? It’s a nasty decision.

Luckily TB has solid treatment protocols, even when it’s resistant. My fingers are crossed for you.

Never mind that part of the reason there’s more TB in this country now then there has been for decades is because of illegal aliens who aren’t screened for it… but that’s another topic.

azurelle

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We have our fingers crossed too. Hoping treatment is completed successfully without any issues. And then figure out what we can do with PsA.

It’s just unfortunate that we didn’t know anything about drug resistant Tb before. If we knew then we could have chosen mtx instead of humira

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So sorry to hear of this added burden.

I was tested for TB after exposure in 2016, result was negative. But of course I was concerned about the impact of potential treatment for TB on the PsA treatment regime, I was already taking both Mtx and Humira.

TB is on the rise in the UK too, but given the choice again I’d still plump for Humira. The biologics are often considerably more effective than traditional DMARDs, they’re a real investment for the future in terms of preventing catastrophic joint damage.

How long will the TB treatment take? Or is it a case of wait & see?

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TB treatment will be between (18 to 24 month) because of drug resistance strain of TB. Humira is stopped and currently we are just taking home remedies for PsA to control symptoms. Our rheumy is MIA after this diagnosis. Only suggestion we got from her was stop humira for now.

I only hope we knew that TB strain, my wife was exposed to was drug resistant in advance. I think our decision would have been not to take Humira. Because it is not only my wife that is trouble right now and undergoing long treatment but our whole family is at risk of MDR TB exposure, which is a big thing and I think should be told before suggesting biologics in case of latent TB diagnosis.

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Really?! That doesn’t sound good - your wife needs their input right now, real clarity, not just a ‘suggestion’.

I can understand how you both feel. I recall looking at the length of TB treatment a couple of years ago, it’s daunting. Best wishes to you both, I hope your wife does really well.

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Is everyone in your house on preventatives for TB?

I’m just wondering about it because I know I was on an 18-24 month treatment for my latent TB but no one else in my household was put on anything. Of course this was about a thousand years ago, I don’t know what strain I have or anything…

azurelle

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Hi Everyone , I have read all the comments regarding TB . I just a question regarding my son. I have PsA and now I am on Sterla , I tried Embrel and Humira both stopped working . But my son is on Humria for Crohns and has been having a cough for a few months . What is lantent TB and how is it different from the type of TB we were both checked for. I am going to make him a dr appointment… how is TB tested besides blood work and chest X-ray

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Hi Cindy,
Latent Tb is when you were exposed to TB infection but you don’t have any symptoms and you are not infectious.

Active TB is when you have symptoms and infectious too.

Test protocols are

  1. Blood test or skin test
  2. If above test is positive then chest X-ray or CT scan
  3. If above shows something then sputum test to identify if it’s actually TB bacteria.

Praying for good outcome for you and your son.

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Cindy, as I understand it you & your son will have been tested for TB and if you had latent TB that would most likely have shown up. It is not a different type of TB, ‘latent’ just means it is not active as @formywife explains.

Unfortunately formwife’s wife has a type that was drug-resistant. I don’t think you and your son need to worry unduly. I hope the doctor is able to reassure you both.

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So sorry to hear of this diagnosis. The issue with psa biologics and other health issues is possibly unresolved in some cases, due to the nature of treatments. In my case the fear is cancer, already a survivor but biologics am taking create a risk of recurrence. There was no alternative when got given cosentyx after mtx and prednisone and cortisone shots on joints and tendons proved insufficient (and probably caused my hip bone fracture), am living in fear of cancer return amongst other issues which can occur in our cases, and as a result, also due to fact that earlier on in the fall even these medications had ceased to work and pain had returned, that I embarked on autoimmune diet and fasting protocol. I had immediately results pain and inflammation wise, now six months later have restricted the field to carnivore style diet, and noticed swelling of the legs disappeared even further than with keto style diet. All sorts of people amongst whom doctors and researchers have found remission of autoimmune issues with this diet. It is a way of fighting inflammation without recurring to extra medicines. After all,what have we got to lose by trying?

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Can you describe your autoimmune diet for us, or is there a link to information about it?

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Dear Grandma,

carnivore diet, also considered an extreme form of keto or paleo, is a shift from low carb (only carbs from leafy veg) to no carb.
The underlying theory, carbohydrates, which are metabolized in the body in the form of sugar, are toxic to the liver and to the body, carnivore diet as eating fish, meat, eggs, cheese, butter, cream, and drinking coffee and water.

No sugar, fruit, grains, industrial or natural sweeteners, seasonings other than animal, possibly grass fed meat and eggs.

Have just started this more extreme form, have not bought nor organized grass fed produce, but as I said results are definitely encouraging. Seem to feel even more heightened the beneficial effects found upon embarking on low carb high fat food with increasingly longer fasts, that is to say, clearing of brain fog, massive weight loss, dramatic disappearance of extreme pain, feelings of mood improvement , blood tests showing values of cholesterol, glucose, and other values in the normal range, same with blood pressure, when before they had been alarmingly off key. Witnessings of researchers, doctors, and normal people who all solved our inflammation problems completely, many of them have been on this carnivore diet for years, and all can be found on youtube. Autoimmune protocols in general have as principal element the elimination of sugar and gluten, especially for some forms of psoriasis. Doctors lecturing on this subject in the international field include Dr Jason Fung, Canada, Professor Tim Noakes, South Africa if am not mistaken, and a host of others. Even more impressive though was listening to witnessings of patients and how they had resolved their issues. Naive credulity driven by desperation on my side can be waived aside for the moment as I have had on my own body the results reported. This is all I can say so far, will post results of further testing when will have them. These ways of eating are also used with success for the treatment of type two diabetes, fatty liver, epilepsy, and cancer treatments support to maximize body recovery, as well as Alzheimer and autoimmune diseases. At the moment the US military is being given a form of these guide lines, and professional athletes of Olympic games status are also using them. Good night and good luck…

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ps this diet needs magnesium supplements as well as eating cristals of hymalaian pink salts, so as to replenish body supplies of electrolytes, dispersed with increased urination as a result of the lack of carbs binding liquids in cells.

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Whoa … to me that is close to claiming that this diet can cure PsA. I regard such claims with considerable suspicion.

I think we have to be very careful about disseminating such claims. Many of us know desperation at one point or another and at such times we may be vulnerable and open to trying just about anything.

When I hear ‘this diet may help’ I’m receptive. But hyperbole and sweeping statements make me suspicious.

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Absolutely. Have no intention of saying it is a cure, am talking about witnessings of people who talk about remission, and am talking about my personal experience so far. We have read how this disease travels even in the absence of symptoms, but mine was in answer to the request in this post, namely if there were non medical ways to reduce pain during tb treatment period, and for a similar reason, bedridden after hip operation, not allowed to take methotrexate,adopting this way of eating in a short time eliminated the pain was feeling. It is my experience so far (7 months), and by the way have trouble w my eyes at the mo, but surely feel a darned sight better than before, these are all facts, remission from symptoms alas does not mean a chronic disease is eliminated, but symptoms can be.

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And bye the way have resumed mtxt every week and cosentyx once a month, this way of eating is in addition to medication