Cervical Dysplasia

[rdwoods7]

Just looking for anyone that is also on immune suppression medication for any auto immune disorder (ie I have Crohn's) that is HPV positive & had dysplasia. I had an abnormal pap 13 years ago and colposcopy showed mild dysplasia and 6 months later back to normal. Nearly 3 years ago, I developed Crohn's and after failure to control on lots of meds, Remicade has worked for me. Unfortunately I believe its immune suppression has brought about other problems. I believe 13 years ago I was infected by HPV & suppressed it. Now my immune system is not suppressing it. I delayed my pap by an addition 9 months (bad idea) . My pap showed mild dysplasia and I tested high risk HPV positive. I just had a colposcopy and results aren't back yet but the Dr. said it definitely looked at least moderate dysplasia & I will need a LEEP procedure. So I have been looking for someone with similar conditions to chat with & find out if your weakened immune system was able to eventually suppress the HPV virus again. I am very concerned that I face a future of repeated colposcopies or LEEP's or even hysterectomy as a result. Thanks for taking the time to read and hopefully respond and share.

[fallingapart]

Hi. I was diagnosed with Crohn's 2-3 years back and put on Remicade earlier this year. Also had psoriasis. It has done a great job clearing me up of these conditions. I never had an abnormal pap until the Remicade, was told I have hpv for the first time 8 months ago. I must have had it for years and it must have been suppressed by my immune system. Had a colpsocopy and was told everything was fine, test was negative--whatever that means. I was calling for two weeks to get results before someone would talk to me. There was no one to answer questions, which of course, I gave up on with a sigh of relief when I heard "everything was fine."

Went for my pap this time (8 months later), and had a biopsy done of an external irritation. I was told both tests came back pre-cancerous and was told to go straight to an oncologist I'm 35, no children, petrified of what happens next. I don't know what to expect if I go off the Remicade either...I am SURE this is related to the Remicade. I have had a few other weird side effects, including lung problems with phlegm, and my gastro told me they were in no way related. A lung specialist told me they were and I called Centocor, who also said they were most likely related. When the Remicade wears off, my lungs clear up, and as soon as I get an infusion, the phlegm comes back. I'm on an inhaler for it. It's not a very bothersome symptom compared to Crohns and psoriasis (though disgusting), but it made me wonder what else Remicade is doing. I'm afraid now I'm starting to find out. I've also had other symptoms come and go right after infusions, like swollen gums, leg pain, and I get sick if I go out in public right after infusion. My gastro says they are all unrelated, I am starting to think my gastro is an idiot who just wants to get paid lots of money for pumping Remicade into everyone he can find. I asked him about cancer before I went on it and he said, "oh, if you look at the statistics, that's so rare, it won't happen to you. They're obligated to report it...blah blah blah."

This drug is starting to scare the living daylights out of me. While it has improved my quality of life, I've been on it less than a year and now I'm afraid its going to kill me with cancer. I would have expected to be on it for years before anything weird like this happened, especially with the BS reassurances I was given. Would like to hear more from you and what you are going through. It seems like we are in the same boat, I think anyone with HPV who goes on Remicade is at a high risk for getting cancer. I didn't know I had HPV and I think I should have been told to get tested before starting the drug; I don't even know if they can find HPV in someone who is suppressing it with their immune system as I never had an abnormal pap before the drug.

Ugh.

[rdwoods7]

I am afraid that's not so much the Remicade that is the problem as it is the fact that we must suppress our immune systems to feel well. I have had a slight increase in chest colds since on Remicade, but there again, I believe it to be because my immune system is suppressed. I also work in a doctors office, so I am chronically exposed to colds. I believe that I am better off to stay on the Remicade. Not all HPV turns into cancer, it just causes the cells to look abnormal and if left alone for years could turn into cancer. My colposcopy came back mild dysplasia, which is good, because on the exam she thought it would be moderate (CINII) So for now we will watch & see in 6 months. Try not to worry too much, just know that over all you feel better than you did a couple years ago!

[fallingapart]

Thank you for your response.

I guess it didn't help that my gynocologist practically threw me out of the office telling me she can't help and I must get any further treatment from an oncologist. Of course, I was unable to get an appointment with a recommended oncologist because I have been diagnosed as pre-cancerous, not cancerous. I feel like I'm no longer a person, I'm just a liability and no doctor wants to take responsibility because they don't feel like getting sued. In the meantime, I'm afraid of dropping dead.

On the whole since being on the Remicade, I have actually gotten sick less--provided I practically quarantine myself after treatment. I usually get infused on a Friday, sleep all day Saturday, and don't go anywhere until Wednesday (I work remotely Mon and Tues bc I have a very understanding boss who saw me get really sick w/chest colds after my first three treatments, I think bc my immune system is so low those days--third infusion, I got a cough spasm and didn't sleep for five nights bc I was coughing every 10 seconds...I thought THAT was going to kill me, it was very scary...that's when I started the inhaler...I think as soon as I get on the subway I become a germ magnet)...since I've been doing the quarantine thing, I don't get the colds (just the phlegm). When I was sick with the psoriasis and crohn's, I got colds all the time, I think my immune system was so busy attacking me, I couldn't fight anything else off. However, I can't help but feel something about the remicade is doing long term damage to my lungs.

I have to get my report from the gyno. She just told me on Tuesday and I was so freaked out and didn't know what to ask. (This was my second bad pap in 8months). Now that I've been reading online I need to find out how bad the test was...she didn't give me any technical terms, like what stage it was CINI, II , etc...

Anyway...I don't feel better going from one chronic illness to something that can turn terminal. ~Sigh~...please keep me posted on if you have to get the LEEP. It sounds like you are in the clear for now. I've been reading about LEEP and it sounds extremely scary. I have a feeling from my doctor's reaction (which I translated to "get out of here so I don't get sued" and "probably CINII or worse") that I'm going to end up with some really unpleasant treatment in the near future. If I can get a stinkin' appointment anywhere...

I'm glad you are feeling better on the Remicade. Just be careful. Really really careful.

[rdwoods7]

They say Drs practice medicine. That is because it is an ever changing science with infinite variables in every patients unique collage of medical conditions. My gastro seemed to overlook some of my minor complaints. It really bothered me at my resection site, that gas would build up and it would hurt until finally a big "gurgle" and it was better. I found reassurance in talking with others in the Crohn's forum at healingwell.com.

I can understand your anxiety not knowing the level of abnormality. Especially if you have been reading on the internet as I did. You must take it with a grain of salt...make it a salt shaker! You may be concerned about the future and having children and the effect treatments for dysplasia may have on you. If you have a good relationship with your family doctor, you might sign a release to have the report sent to him/her and make an appointment to discuss it. Make a list of questions so you don't forget something, or maybe even bring a friend. They sometimes bring a different perspective to things or think of something you missed. Plus it's someone else to remember what the Dr said!

Have you had a history of exposure to first or second hand smoke, a dusty home, animals in the home or seasonal allergies? Any family history of asthma? My mom was diagnosed with asthma in her 60's. I am 34, so I tend to think it was in my gene's & brought on early due to my other medical issues. But environmental factors play a large part. Gee darn, someone else has to dust my house, or I end up with asthmatic bronchitis :)

Always look to the bright side, keep me posted.

[fallingapart]

Hi,
I can't get an appointment anywhere. The oncologists won't see me bc it is precancerous, and as I said, the gyno kicked me out for the same reason--bc I may have cancer. In the meantime, I got a copy of my report: CIN I and VIN II. Then I did some research and I found out often if you have VIN, you are often mistakenly diagnosed with CIN I when it is really VIN III, because everyone is looking for CIN and no one is looking for VIN. I talked to my gastro and he looked at me like I was crazy and said this diagnosis has nothing to do with being on Remicade. I never had a bad pap before the Remicade. Anyway, I'm concerned that I may have advanced VIN and I just got another dose of Remicade yesterday. The nurse suggested I should consider getting off it but like I said, the gastro insists there's no relationship. I think he lies or is uneducated. I've been faxing my records all over town trying to get an appt with an gyn-oncologist. :( I just feel like crying. I don't know if I'm poisoning myself with Remicade or what.

[rdwoods7]

If you're referring to the case study online from 2002, it appears to be referencing that the pap smear will miss the diagnosis of VIN. But you have had a biopy which is above and beyond the basic pap smear in diagnosising. I think you can rest easy that your diagnosis of CIN1 and VIN2 is just HPV effect, and not cancerous. When they say precancerous, it just means there's a potential for it to be or not to be cancer. Just like you might or might not get hit by a truck. So when you say your gyn "kicked you out" of the practice, does that mean you received a letter from the doctor saying they would no longer see you after a period of 30 days? Sounds like a follow up pap/exam in 6 months would be sufficient. I hope that you can find some reassurance and peace in the matter. Did you at least discuss this with your family doctor?

[fallingapart]

Hi
Any time I ask my family doc a question, he says, "you will have to speak with a specialist. I am not a specialist." Everyone is afraid of getting sued, I swear.
I finally got an appt this morning for next month. My gyn said "This is the second bad test, and I didn't expect this biopsy to come back with this result. You have to be seen by an oncologist I can no longer treat you, it is outside of my expertise."
~sigh~
Thanks for your response. I think it helped calm me down. I'll let you know what happens next month. I'm hoping its nothing!