Whole body is "shutting down", or so it feels

[jkd1111]

I don't even know where to start. Last year had a HUGE "mystery" cyst on my upper left thigh that they said was not Crohn's related (I'm not buying it), this year had a horrible eye infection that they totally now think is related and have developed Pyraderma on top of everything else (on prednisone for that trying to get it under control), Fistulizing Crohn's that is running amok, no longer on Remicade (long story, but not because it was not working), now on weekly Humira (almost 2 years now), just started to add Imuran with the Humira and have god awful headaches which started immediately! Oh, and I caught a cold from hell last week!!!!

So in reading the posts, I decided to split the dosage of the Imuran to 1/2 and 1/2 morning and night to see if that would help the headaches. I think it did slightly plus some Tylenol.

I'm so lost right now. Gastro is on "sebatical" (fancy name for vacation) so is unavailable. I know there are others in the practice, but one of them prescribed the Imuran without even doing any blood work for it. His comment was "we will hope for the best". Yeah, now he's the doctor I want to go to.

So I guess my question is, do the headaches from the Imuran subside after a time? If they do and there is a light at the end of the tunnel that you can ASSURE me is not a train, I will continue to take it.

Then to top it all off, I'm off work un 7/31/15. Luckily I did purchase via my employer a short term/long term disability package that I'm on right now. FMLA will only hold my job until 7/31/15 but my primary and the gastro say there is no way I'm going back to work. So I have little bit of stress on me to make sure the insurance continues to pay and rolls into long term at the end of October. So I fully expect to be "terminated" in August sometime. I refuse to quit, they will have to terminate me. Good news is, as I started the disability insurance claim while I was an active employee, I will remain getting benefits as long as it is approved (whole nother stress level there).

I just want to feel better! My only wish now is get back a little bit of the quality of life I used to have as I sure don't have any now.

Sorry for the pity party, but you guys are the only people that would ever understand. I actually had an acquaintance come up to me the other day, took one look and said....are you ready for it?......"What is wrong with you now?". Yep, did you notice I said acquaintance and not friend? She has been officially downgraded.

Thanks for listening and any insight into the Imuran side affects would be greatly appreciate.

 

[24601]

Hi Karen,

Sorry to hear about everything you're going through.

I do believe that headaches from Imuran are a side effect that can go away. When did you start taking the imuran?

Did you get blood tests before starting? And I think usually you repeat blood tests at the two week mark then perhaps once a month for the first few months, ending up with bloodwork every 2-3 months for the whole time you are on it.

It's important to monitor to make sure there are no serious side effects from it. Apparently the milder side effects usually go away. Do go back to the doctor if you have severe pain, nausea, aches or fever though.

Do you have a GP who is keeping an eye on you as well while your gastro doctor is away?

I hope you are feeling a bit better soon

 

[jkd1111]

Thanks for the input. Here is the update.

As mentioned, I had the cold from hell which unfortunately turned into a raging sinus infection. Got to the GP for that and that is now under control.

Back story. About 25 years ago I was put on 6MP and had horrible reactions to it. Headaches, joint pain, muscle pain, brain fog, pain so bad in my feet I couldn't walk (sound familiar yet?). This is all in my record. When the idiot gastro prescribed the Imuran, I looked at him like he had 3 heads and said "that was then, this is now, and I'm going to hope for the best. Imuran is a cousin drug to 6MP and you may react to it differently". OK, I can buy that. Who knows what time does. Course I'm laying in the hospital with no resources to look anything up so don't understand that when you metabolize Imuran you are then turning it into 6MP for your body to use. Had I known that, I would have put my foot down right then. He did not order any blood work at that time, and I was not aware of all the blood testing that needed to be done (see previous sentence about no information resources). Followup visit was made for me with my regular gastro on 5/14 but idiot gastro states for me to begin the Imuran the minute I get it from my pharmacy. No worries, I can do that I say.

Fast forward about a week for me to get the drug to 5/13/15. Got the drug and took my first dose. Woke up the next morning trying to prepare for a 110 mile trip to my regular gastro with a bad headache. Didn't really think twice about it as I live with headaches....but I did convince my husband that he needed to go with me as I wasn't sure about driving all that much that day. Off we went. Saw the reg gastro who was appalled that no blood work was requested and that idiot gastro started me right off on the full dosage. So she puts me on standard "50mg /day until you get the blood work back dosage" and sends me down the hallway for blood work. We go back home hoping that all will go well when the blood work comes back.

A week goes by, I'm on the 50mg day and I get the thumbs up from her that all tests and markers come back that I am able to metabolize the Imuran with no problems and all else looks good. In the mean time is when the cold from hell hit me. Started the full dose on 5/22 in the AM. 5/23 about 2 am woke up with a horrible headache and nausea. Took some sinus meds as that is what I thought it was, and it didn't do anything just made the nausea worse. Later that day, I decided that I was taking so much cold /sinus meds that I would just hold off on the Imuran until the cold was better. By the next day the headaches were gone so I figured the cold/sinus meds had done their job and I could then start the Imuran. So I took 1/2 dose the evening of 5/24. About 2 AM had a terrific headache that some Tylenol did seem to help. Took 1/2 dose morning of 5/25 and by about 10 AM had another terrific headache that some Tylenol seemed to help. 1/2 dose that evening and by about 1 AM on 5/56 had a headache that made my head feel like it was in a vice with a fully loaded Kenworth pulling an 18 wheeler completely filled to the brim with the heaviest possible cargo running back and forth across my head. I had some Norco (the new fangled Vicodin) on hand. Took 2, didn't touch, it. 4 hours later, took another 2 with absolutely no affect whatsoever. That is when I decided that I was not going to live my life that way. So I ended it there. I got in to see my GP regarding all of this and she agreed.

I have a call in to the regular gastro for when she gets back. There are just too many other drugs out there for me to have to put up with this, I don't care how short lived it is. Trust me it cannot be short lived enough to have the darn Kenworth driving over my head 24/7. So now you know "the rest of the story".

 

[24601]

That sounds a lot like like my azathioprine and 6mp stories. I got prescribed Aza first when I was 17. The doctor said that as long as we did bloods before starting and at 10 days and they were fine then I would be fine! Well, we did the bloods at 10 days and I'd had no symptoms so he said I wouldn't have any problems because in his experience he'd only ever seen problems with Aza occur in the first ten days and after that period there was no chance anything would happen :ywow:

So I get on a plane and go to Canada and a few days later - just around the two week mark - I get terrible side effects. Fever, headache, aches so bad I can hardly pick my feet up or turn my head. Because I'm thousands of miles from home, I stop the Aza and overnight it all goes away. When I get home the doctor denies that this was caused by the Aza, says he can't even know that I had a fever etc. I change doctors at that point because he's being totally unreasonable and his opinions are clearly rubbish - there are issues that can come up at any time with Aza.

After that there were doctors who wanted me to be on 6mp, but I was too afraid of feeling just the same. They said maybe it wouldn't be the same - and in my case since it was the opposite way around to you, perhaps they were right. Finally I realised that I did need to try 6mp as excluding it would open up other meds. But in the end I had a very similar reaction. This time without the fever but instead the scar tissue on the outside of my body got red and raised and began to blister - I don't like to think about the scar tissue inside my body! I was updating my IBD nurse about my symptoms but she kept telling me to try to get to the one week mark and see if the side effects lessened. I wasn't too happy but did as I was told thinking I needed to give it a fair chance but when she actually saw me she said I should stop straight away. They did bloods and my CRP was about 400. The next week it was back to less than 5.

After that we agreed no more trying to get me to tolerate any of these family of meds - one doctor said "we have our ways". I said no thanks!

And then I went on methotrexate and Remicade and had no side effects on either of them.

So I agree - no need to put up with those side effects. And I do wish that all doctors would be aware of the need to monitor closely and distinguishing between some minor side effects and the extreme ones.

I hope you find the right treatments for you soon!

 

[jkd1111]

WOW, would be nice if some of them would just listen to us! I think I'm lucky now with my regular gastro. She is awesome, won't let me go back to work and actually hugged me! How often does a doctor hug their patient. That was a first in my 61 years.

Thanks so much for the feed back. You have made me stiffen my resolve and I will go forward with my feelings of what needs to be done. They know the drugs, but I know my body. You don't suffer with the stuff for at least 35 years and not learn something.

 

[24601]

That's great that your current gastro is so caring! I think having a good doctor who listens to you and pays attention to your symptoms (as well as doing all the testing to monitor disease) is invaluable. With a chronic illness the patient has to be part of the team and we need our doctors to work together with us to optimize our health.

Let me know how you go! Hope things get better soon!