If you were a Doctor and read this email/message...

[Sea_Star]

what would you think?

I literally cried the other night taking 6MP....it's PLUMMETED my sense of well-being..

"Hello (insert name of nurse and doctor),

I have a few questions about some reactions/side effects after starting 6MP last Monday (Oct. 27th). I have been able to manage the nausea, bone aches, and tiredness, but there are a couple things I have a question about:

1.) I developed skin itchiness starting this past weekend, beginning on Sat. It's all over, but I don't see any rashes other than when I scratch. I don't recall having this side effect the last time I was on 6mp....is this to be expected? Also, I noticed an increase in moles appearing...is that normal?


2.) The abdominal/flank pain (primarily RUQ extending to the back) that I mentioned at my appointment is there consistently every day now, most of the day. It almost feels like it's coming from my right rib towards the back, and an area in the front. There have been a few times the LUQ gets an ache, similar to what I experienced a few weeks after my colonoscopy in May...so I'm not sure if this is related to the inflammation or not, as I've never experienced aches in these areas prior to this year.


3.) Dr. xxx, this is something I wish I had said at my appt with you, but I value your opinion and didn't want you to think of me as the same person my past records reflect: a non-compliant patient. To be completely honest here, my energy and quality of life feels like it has disappeared since last Monday. I know medication is to improve quality of life, but before then, when I was taking Pentasa only, I wasn't worried, I was happy, and feeling great! I was looking forward to playing tennis, getting out there! I know I'm not the typical Crohn's patient; aside from my first semester in Miami after eating at the dining hall (it gave everybody diarrhea..), I've never had a problem with diarrhea. Tapering Entocort this time, sure I had some abdominal cramping and looser stools initially, but that rebound subsided and I still go once or twice every few days with formed stools. I understand this doesn't necessarily indicate anything, as asymptomatic inflammation exists...but for some reason, I can accept the risk of progression, but not damaging the rest of my body when I don't feel anything.Perhaps if I did have more symptoms, it would be easier to take the med for which I would be able to see and feel the relief. I can't live worrying if every new mole is a problem, or my joints hurting, etc when all I've had is some RLQ tenderness and the duodenitis/gastritis pain. I understand when you say Pentasa has been shown to be like a placebo, but what if I'm in that small percentage of people who respond? I know typically Pentasa doesn't do much..but since I'm atypical, before I can realize I need something stronger, I would be more compliant with the least harmful medication. I would rather have active surveillance, than potentially ending up with some sort of cancer, for which I will never be able to forgive myself. Of course when I took 6mp, it quietted things down, even having a lasting effect for a couple years off it, but my disease activity was a little more "vile" back then apparently. I'm the type to learn by experience. I'm not rejecting 6mp or stronger meds if/when I truly need them, but right now, every time I swallow the tablet, it's scaring me. Could we give Pentasa a try? I accept FULL responsibility for whatever may happen, but i don't mind aggressive surveillance at all. I hope you understand Dr. xxx. I truly want to be your compliant patient, as I finally can rest easy in the hands of xxx clinic, but in an ideal world, I wouldn't take medication....could Pentasa be the halfway point? I promise to not hesitate to go back on 6mp should things progress. There are just certain things I'd like to experience before altering my body's chemistry consciously.."


I'm going for an MRI this weekend because a little mass was found in my left kidney....wish I could see him and talk to him then :/

 

[baistuff]

Since I am a doc, I will take a stab at this.

1) and 2) are important questions that should trigger a conversation between you and your doc about whether you should stop the med. And the first part of 3 should be rolled into 2 because it's pertinent to the question about 6MP.

I would eliminate the rest of #3. Besides rambling, it takes your doc off the focus of "does this patient need to stop 6MP?" into irrelevant things- really, does it matter that everyone got sick in the cafetria in Miami X years ago? If you have history of non compliance, that is indeed a strike against you, but an email or lettter will not fix that, and also has nothing to do with a potentially nasty reaction to 6mp. That is another discussion that should be face to face at a time when things have calmed down. Also, if you don't want to worry about every mole, then don't. Make periodic appointments to be checked out. Make sure you see a dermatoligst once a year. I understand the need to vent, but it really is not only not productive, it again takes away focus from what are very important questions and concerns you raise in 1) and 2)

Keep it to the facts, and while the impact this change has had on your life is very important, don't let emotion and frustration overtake the important questions.

As to whether you should actually stop 6MP and with regard to other medication changes, well that is a decision you and your MD must make. It's not anyone else's place to weigh in on that one.

Good luck.

 

[Sea_Star]

Thank you Dr....both you and my mom basically said the same thing haha. She said email it and make an appt to see him face to face...

Thing is. He's 3.5 hours away and I JUST saw him in October...and I'm not very assertive in real life lol. But yes, you're right....after seeing 8 GI's, i guess it kinda exploded since I've been feeling like a pigeon being stuffed into a square...

 

[Tesscorm]

Sea_Star, I'm sorry you're dealing with this, I can understand why you're so frustrated when it seems the meds are making you feel worse, rather than better!

As baistuff mentioned, your first two points are medically relevant and I would email those questions to your GI.

But, I do also think how you are feeling emotionally can affect your health. Perhaps briefly explain some of the side effects you are feeling (nausea, etc.) and ask if these will lessen as your body adjusts to the medication - if you know they are temporary side effects, you may be better able to cope with them for just a short period. Also, perhaps some of the side effects (fatigue, etc.) are related to nutritional deficiencies - perhaps ask your GI or GP if you can have vitamin levels tested, since you're recovering from a recent flare it may be possible that malabsorption has left you with some deficiencies, ie low HGB or anemia can cause fatigue.

As far as fears of possible complications/cancer - I was terrified when my son started on remicade but, as cliche as this sounds, you do adjust emotionally. :hug: I've found that as time passes, I worry about it less and less often.

Also, keep in mind that there are LOTS of things in life that increase risks (including cancer) - when my son played competitive hockey, he was always at risk of serious injury; he has fair skin, as diligent as I've always been, he's gotten bad sunburns when spending days out in the sun; he's tried skiing, when he turned 16, he got his drivers' license, lots of risk with inexperienced new drivers; etc., etc. But, a big difference is that when you walk out your door, no one is handing you a list of risks and their stats for each activity you participate in and asking you to accept those risks!

Growing up, I let my son participate in all these things because they improve his quality of life. I try to remember that if remicade is keeping him healthy, even with it's risks, it will also improve his quality of life.

The risks with these meds are real, however, they are very small. :ghug:

 

[nogutsnoglory]

My honest opinion is no doctor wants to read more than a 3 sentences. They are rushing and even though our symptoms can be in a binder we gotta prioritize and get to the point very fast. Think 15 second elevator pitch. if you have more to say it's gotta be in an appointment unless it's a real emergency.

 

[Pilgrim]

I think you should see if your levels are showing an issue with your pancreas in relation to the 6-MP. Maybe while you're waiting for an appointment with your doctor you can talk to a nurse about your labs.

Maybe there is an allergic reaction to the med.

 

[Jennifer]

Rather than waiting for an appointment contact your GI and let them know what's going on over the phone. Leave them a voice mail, leave a message with the staff or speak with the on call physician. If you're itchy then that needs to be addressed as soon as possible (let them know where it itches and how bad). Pentasa caused itchiness for me and eventually rashes formed. I called my GI and he called me back within an hour and told me to stop taking it. It went away within a day of stopping it. All of my GIs have been far away so I deal with them mostly by phone as it can take forever to get an appointment not to mention forever to get there when this could easily be handled by phone.

I agree that #3 is rambling and unnecessary. Tell them that you want to go back on Pentasa and see how you do since it's helped you in the past. If it doesn't help then you can talk about other possible treatments later on. Stay on topic and get to the point for fast and effective care.

 

[baistuff]

Agree with a lot of what is above.

Your doc ABSOLUTELY needs to be aware of your side effects ASAP. You can write, call, whatever. It is very important.

We docs will read any length email as long as it is clinically relevant. Rants and venting do not translate well over email. You woulnd't rant in an email to your boss, why to your doctor?

Please also keep in mind, and this is VERY important and something most patients do not realize, the email addresses you get from us are work/office/health plan emails. What you say in them gets usually gets copied to your medical record, which of course is a legal document. Also, in some set ups, a nurse or assistant reviews them first. You can't imagine how many emails we get in a day. Some very good/important ones- about side effects, refills, symptoms etc... Some really silly ones "If I have sex while I'm pregnant will the baby eat the semen?" Many which don't require a doctor's response "when was my last mammogram?" - well the assistants can tackle that one.

So, yes. Email, call. The email can even be long as long as it is relevant. Whines, rants, discussing the Rangers, politics, or that your grandkids never call- well, yeah, those will be ignored.

 

[2thFairy]

New York Rangers or Texas Rangers? :ylol:

 

[baistuff]

New York Rangers or Texas Rangers? :ylol:

In NYC there is only one Rangers. They wear blue, and have a king name Lundquist. so close last year. I urge any hockey fan of any team to take in a game at MSG, just not in flyers or Islanders jersey.

 

[Sea_Star]

But, a big difference is that when you walk out your door, no one is handing you a list of risks and their stats for each activity you participate in and asking you to accept those risks!

Wow, that is so true....great way to look at it!! Thank you

 

[Sea_Star]

Thank you everybody...I know. After sending it I was like "wth did I just DO?!?" but anywho...time heals all, uh, potential stereotypes of anxious patient lol jk. The nurse called me the next day and wanted me to go for labs, which I did this morning

Ironic that I was freaking out, not liking having to take 6mp, but now with the skin itchiness, I don't want to have to stop it...I tolerated it in the past. So we'll see what the labs show.

Baistuff-is it true an immunosuppressant releases the histamines...? I read that somewhere.

Jennifer-how soon after starting Pentasa did you notice the itchiness? I had a mild rash from Pentasa when I first started it, but it went away. Wondering if it's the combo...

 

[Jennifer]

I made a thread about it a while ago (there's one image). It took about two weeks to notice a rash. http://www.crohnsforum.com/showthread.php?t=59999

 

[Sea_Star]

Whoa...that is a very prominent reaction! Glad you figured it out. Was this while you were taking 6MP? Have you tried re-introducing Pentasa, to re-challenge?

I guess you can develop a reaction to something you previously hadn't, and vice versa.

 

[sk12383]

I don't mean to take this discussion off course, but have you been on any of the biologics (Remicade, Humira, Cimzia, Entyvio)?

I only ask because those are new drugs specifically for Crohn's, whereas 6mp strikes me as a very archaic treatment, which may have made sense 20 years ago (when they put me on it and no biologics existed), but surely that can't still be a GI's go-to in this day and age? Using 6mp -- a broad treatment with obvious side effects in lieu of a modern and sophisticated biologic therapy doesn't make sense in my opinion.

If you float the idea of biologics and your doc doesn't engage in a reasonable discussion, I'd call that a pretty strong endorsement of incompetence in his understanding of Crohns.

Just something to think about.

 

[baistuff]

I have not heard of immunosupressants causing histamine release, but I am not an expert by any means. If anything intuition would have me believe opposite. Histamine release is part of the cascade of a repsonsive immune system to some trigger. suppress the system, the LESS responsive it would tend to be. Or so I would think.

That being said, our bodies don't read the textbooks. People can have idiosyncratic reactions to things. Plus you could simply be allergic/intolerant of it.

Itching is a common side effect of certain meds, Narcotics being the most notorious- not an allergy, just simply a side effect, and a common one.

 

[Jennifer]

Whoa...that is a very prominent reaction! Glad you figured it out. Was this while you were taking 6MP? Have you tried re-introducing Pentasa, to re-challenge?

I guess you can develop a reaction to something you previously hadn't, and vice versa.

Yes I was on 6MP at the time. I have been taking 6MP for over 15 years now. Honestly I'll never take Pentasa again. For me it's too little gain with major side effects. Many people do fine on it though.

Itching is a common side effect of certain meds, Narcotics being the most notorious- not an allergy, just simply a side effect, and a common one.

Unless it's accompanied by a rash, if your upper body is affected (face, neck, chest etc) or if it's not listed as a side effect then you should contact your doctor right away.

I don't mean to take this discussion off course, but have you been on any of the biologics (Remicade, Humira, Cimzia, Entyvio)?

I only ask because those are new drugs specifically for Crohn's, whereas 6mp strikes me as a very archaic treatment, which may have made sense 20 years ago (when they put me on it and no biologics existed), but surely that can't still be a GI's go-to in this day and age? Using 6mp -- a broad treatment with obvious side effects in lieu of a modern and sophisticated biologic therapy doesn't make sense in my opinion.

If you float the idea of biologics and your doc doesn't engage in a reasonable discussion, I'd call that a pretty strong endorsement of incompetence in his understanding of Crohns.

Just something to think about.

To this day thiopurines are still widely used and are effective forms of treatment. Not everyone responds well to biologics and many refuse to take them due to scary sounding side effects (all medications have side effects and none are pleasant yet it's their choice).

For me I had extreme side effects from Remicade and Humira (even from Methotrexate but it's not a biologic) which were worse than what the Crohn's was doing. My doctors agreed that I would have the same reaction to Cimzia (it's possible I could try Entyvio in the future if 6MP ever stops working). 6MP has been the only medication that's worked well for me. I've done combination therapy with 6MP and Allopurinol and would still be doing that if I weren't planning on trying to conceive soon. Later on though I do plan on going back on that regimen of 6MP and Allopurinol (that's also something to suggest to your doctor Sea Star which would mean a lower dose of 6MP).

 

[baistuff]

Yes I was on 6MP at the time. I have been taking 6MP for over 15 years now. Honestly I'll never take Pentasa again. For me it's too little gain with major side effects. Many people do fine on it though.



Unless it's accompanied by a rash, if your upper body is affected (face, neck, chest etc) or if it's not listed as a side effect then you should contact your doctor right away.

Agree.

 

[Sea_Star]

I don't mean to take this discussion off course, but have you been on any of the biologics (Remicade, Humira, Cimzia, Entyvio)?

I only ask because those are new drugs specifically for Crohn's, whereas 6mp strikes me as a very archaic treatment, which may have made sense 20 years ago (when they put me on it and no biologics existed), but surely that can't still be a GI's go-to in this day and age? Using 6mp -- a broad treatment with obvious side effects in lieu of a modern and sophisticated biologic therapy doesn't make sense in my opinion.

If you float the idea of biologics and your doc doesn't engage in a reasonable discussion, I'd call that a pretty strong endorsement of incompetence in his understanding of Crohns.

Just something to think about.

Nope, the Biologics (from my understanding) are for moderate-severe cases. I don't have the typical Crohn's. 4 years with this disease(just abdominal pain and perhaps looser stools once ever few days, when in a "flare"..i still don't know what exactly entails one..), 2 of them with Pentasa and 6mp. Off meds for 2 years, some inflammation is back but haven't progressed. Given the benign nature of my disease, my GI (Mayo Clinic) is Ok with giving me just 6MP.

 

[Jennifer]

Nope, the Biologics (from my understanding) are for moderate-severe cases.

They are generally used for more severe cases but remember that no amount of inflammation is acceptable, even small amounts so many doctors do what's called the "top down" approach in hopes of getting the inflammation under control as quickly as possible and keeping it under control. The top down approach is very effective.

Mayo Clinc is awesome. I'm glad you're able to be seen by them. Hopefully you'll be able to stick with the 6MP as Mesalamine meds like Pentasa etc only do so much and they're topical meaning the inflammation in the deeper layers of your intestine will go untreated (assuming you only treat with Mesalamine).

 

[UnXmas]

Your doctors accept and answer e-mails from patients?! Are any of you in the UK able to do this?

Although I've never been able to e-mail any of my doctors, I'm pretty sure you should follow the advice already given: keep it brief, stick to medical questions, and make sure you've made clear what your third question is specifically asking.

But on the other hand I do have a couple of doctors, one in particular, who always spends ages talking to her patients about all sorts of things that aren't at all medically relevant, so your your knowledge of your doctor's personality and communication style should help guide you too.

 

[Sea_Star]

They are generally used for more severe cases but remember that no amount of inflammation is acceptable, even small amounts so many doctors do what's called the "top down" approach in hopes of getting the inflammation under control as quickly as possible and keeping it under control. The top down approach is very effective.

Mayo Clinc is awesome. I'm glad you're able to be seen by them. Hopefully you'll be able to stick with the 6MP as Mesalamine meds like Pentasa etc only do so much and they're topical meaning the inflammation in the deeper layers of your intestine will go untreated (assuming you only treat with Mesalamine).

Right, and I would be ok with that had I worse symptoms...right now it seems meds are giving me more problems than the inflammation itself. Jennifer I see you're in CA! What part?? I'm originally from there Fresno area.

They are...they are the only ones I trust, to be honest, which if it sounds a little snooty, I'm sorry, as I know many deserve to be seen there more than I do given the benign nature...but if anything, that makes it more difficult in such cases, since there's no "gauge" to see what's going on.

Update! My doctor's nurse told me to stop the 6mp until we have the lab results. I think she did this primarily worried about Pancreatitis. But the itchiness could be the Pentasa, or Zantac, or something I'm eating hahaha. jk. I mean, i know I sound like a toddler who first rejects the toy(6MP), has it, but then cries when it gets taken away...but, I kinda want to stay on 6mp. This RLQ soreness has been a reminder of the unknown...so i kinda hope to go back on it. I can't bombard the nurse, so could I increase the Pentasa to 4g in the meantime?
I actually am going up there this weekend to do an MRI because they found a little mass in my left kidney on my US. I always get a reaction from the contrast regardless of being premedicated, so we'll see if it maybe kicks out the skin itchiness by inducing a reaction lol.

Sorry. Rambling. :yfrown:

 

[Sea_Star]

Your doctors accept and answer e-mails from patients?! Are any of you in the UK able to do this?

Although I've never been able to e-mail any of my doctors, I'm pretty sure you should follow the advice already given: keep it brief, stick to medical questions, and make sure you've made clear what your third question is specifically asking.

But on the other hand I do have a couple of doctors, one in particular, who always spends ages talking to her patients about all sorts of things that aren't at all medically relevant, so your your knowledge of your doctor's personality and communication style should help guide you too.

It's a patient portal, so nope, not direct email. Though I know doctors who've given out their numbers to patients.

I'm assuming you're in the UK? There are quite a few you on here that I see!

 

[Jennifer]

I can't bombard the nurse, so could I increase the Pentasa to 4g in the meantime?

You can call the nurse at anytime. Never self medicate.

 

[baistuff]

Yes, we give patients email- our office emails. Many patients abuse it with ranting and stupidity, many use it very well and very appropriately. All become part of the medical record. Our policy is that someone will respond in 48 hours. Often it may be nurse, but I do wind up reading all of them. We even cover our colleagues email while they are away.

I email my GI guy as well. He usually responds quickly- though maybe bc I am an MD I get special treatment. I also do NOT ask him to write me for the latest internet "cure" found by a farmer in Romania, so maybe that helps too.

Keep in mind the health system in the US is overburdened. Countless patients everywhere. Decreased re-imbursements. Email can often negate the need for an office visit or even a phone call. I'll tell someone to up their lasix and then email me in 2-3 days how their symptoms, weight, etc... are doing. Very easy and convenient. the emails "doc, I jammed my finger I need oxycontin," well, those we don't think to highly of.