Concerned

Has anybody ever been unlucky enough as myself to come down with methotrexate interstitial pneumonitis (MTX-P)? Then after about a year of recovery and my lung Fx has returned to within normal limits to have rheumatologist start them on Arava or Leflunomide? The reason I ask is because if one goes to pubmed.gov and searches for "patient with prior MTX interstitial pnuemonitis and Arava" it advises that 100% of patients who had MTX-P who unfortunately came down with Leflunomide interstitial pneumonitis (LEFIP) died after coming down with LEFIP. I asked my Dr what if I came down with the same symptoms as before what should I do? She didn't answer my question. So, after researching it myself I see it takes 11-14 days to washout Arava out of one's system and when I got MTX-P after 4 days in hospital I went into respiratory failure and arrest. So, if same thing were to happen again I'm assuming there would be nothing that could be done by what I have been reading at reputable websites. PubMed.gov is part of the National Institutes of Health in Bethesda, MD and I have found similar articles at www.FDA.gov. One thing that was mentioned was that LEFIP was rare, but overall considering all reasons for coming down with it that 1 in 5 will die. That scares me especially with what happened with me on MTX. BTW I am taking Enbrel and just stopped Plaquenil with very little joint pain relief. Humira and sulfasalazine both cause me to get acute pancreatitis and I have chronic pancreatitis now. Any advice would be appreciated I haven't started Arava yet. I'm doing some soul searching. Thanks.

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it sounds like you can't take anything...your doctor didn't answer probably because she had no clue. is your doctor a dermatologist? you need a rheumatologist. it sounds like anything would not be helpful at all esp with the pancreatitis

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She's a rheumatologist

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OH MY! What an ordeal you've been through, RoyalSpan.
My heart goes out to you. Thanks for sharing your experience, as I am having to make a decision
about treatment. May God grant you strength through all this.

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After a long heart felt decision process and speaking with a clinician my pain management doc I have decided to go ahead with the Arava (LEF) course of treatment. I explained to him I was scared to go ahead with the treatment as there was a risk I could contract Interstitial Lung Disease (ILD) as I did when being treated with Methotrexate (MTX), and per an Oxford U study showed that most people who had gotten MTX-Pneumonitis (MTX-P) and then acquired LEF-P died from LEF-P even with washing their system clear of LEF. However, after he explained he understood my concerns we discussed the study and how much pain I was in. After our discussion I got the ambition and guts to go ahead with the treatment. So, I still have some reservations but feel better about my decision going ahead with the Arava/Enbrel treatment plan. I'm sick of being in pain and watching my hands/fingers and feet get more and more disfigured.

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I use this site called public citizen when I want drug information.
That site lead me to this article.

Methotrexate

http://onlinelibrary.wiley.com/doi/10.1002/art.1780401016/abstract

Abstract
Objective. To describe the clinical, laboratory, radiologic, and histopathologic features of methotrexate (MTX)-induced lung injury in a combined cohort of selected patients with rheumatoid arthritis (RA) and all cases reported in the English-language literature.
Methods. Retrospective combined cohort review and abstraction from the medical literature. Case reports were obtained from 6 centers that had 4 or more cases of potential MTX lung injury per site. RA patients who were seen between 1981 and 1993 and who satisfied predetermined criteria for the presence of MTX lung injury were identified.
Results. Twenty-seven patients satisfied the criteria for definite MTX lung injury, and 2 for probable MTX lung injury. Predominant clinical features of MTX lung injury included shortness of breath in 27 patients (93.1%), which was present for 23.5 ± 22.3 days (mean ± SD), cough in 24 (82.8%), present for 26.9 ± 28.5 days, and fever in 20 (69.0%), present for 10.4 ± 12.8 days. Five patients (17.2%) died, compared with 12 of 68 (17.6%) reported in the medical literature. Four of the 6 patients who were re-treated with MTX after an initial pulmonary event developed recurrent lung toxicity, resulting in 2 deaths, compared with a recurrence rate of 3 of 6 in the literature.
Conclusion. MTX lung injury is most often a subacute process, in which symptoms are commonly present for several weeks before diagnosis. Approximately 50% of the cases are diagnosed within 32 weeks from initiation of MTX treatment. A patient who recovers from MTX lung injury should not be re-treated. Earlier recognition and drug withdrawal may avoid the serious and sometimes fatal outcome that has been observed in this and other studies.


Another site with different warnings that are quite serious. Lymphoma is one of them.

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682019.html

Just snooping around found me this one.
Andrew Herxheimer believes there needs to be a 'complete rethink' of the current pharmacovigilance system:

'A basic fault is that research aiming primarily to find benefits of drugs, devices and procedures gets vastly more funding than the investigation of potential and actual harms from them.

'The ratio between the two seems not to have been properly estimated. We need the data: ethics and common sense demand parity of funding for research on positive and negative effects of treatments,' the pharmacologist said.

He also said that spontaneous reporting alone – such as the Yellow Card Scheme – 'is not an adequete solution and can only supplement proactive research on adverse effects.'

'Research on harms cannot be left to the industry – manufacturers cannot be expected or made to do it,' Herxheimer said. 'The priorities and the funding must come from society as a whole, and logically that should apply to all therapeutic research.'

Campaigners have previously highlighted the MHRA's links to industry funding – the agency is partly paid for by fees from pharmaceutical companies – although the body denies there is any conflict of interest and says complex licensing decisions are referred to independent advisory committees.

http://www.theecologist.org/News/news_analysis/1272463/revealed_the_prescri ption_drugs_and_medications_most_likely_to_harm_or_kill_you.html

It is a very tricky position to be in and it is hard to know what to do. It all comes down to your own personal choice. I hope everything works out well for you. Please update as often as you can.

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hello susan55555

nice post.

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