Hi all!
It was my full intention to stay current with my blog and update you all often with what is going on in my life, etc. That obviously isn’t how it panned out. I actually this past spring developed drug-induced lupus from a medicine that shall remain unnamed. It was a nightmare. We had an idea that that’s probably what it was, however that particular reaction is super rare and so until all the testing was done we couldn’t say for sure…so it took A WHILE.
In the midst of this reaction, I was very sickly. My joints hurt so badly I was on narcotics almost daily, which for those who know me know that isn’t normal for me. I developed purpura, a sign of low blood-clotting factors, to which it was proved that I developed antibodies to. I also had severe nausea, vomiting, abdominal pain, chest pain, etc after I would take my med.
After stopping the drug in late march, some symptoms went away quickly. Others did not. It was basically a waiting game-most of you know how that goes…
The point of my rambling is KNOW THE SIDE EFFECTS OF THE MEDS YOU TAKE!! I knew that drug-induced lupus was a possibility, albeit a rare one, but nonetheless a possibility while taking the med I was taking. However, I was not aware of what symptoms this reaction involved. It wasn’t until I noticed the broken blood vessels that I went for blood work and the hematological evidence was observed. Looking back on my logs, I realized that if I would have been aware of the specific symptoms that drug induced lupus can involve, maybe I wouldn’t have gotten as sick as I did as I would have raised the red flag a little sooner than I did.
I don’t live with regrets and blame, that’s not what I’m saying here. This experience was a great lesson-always read everything you can about the meds and know what CAN go wrong, even if the chances are slim. You can never be too prepared or too well-read in my eyes. If you have doubts, ask your doctor or even the drug company. Keep a copy of the full prescribing info either saved on your computer or a hard copy with your meds. It always seems so monotonous when you’re given that info EVERY time you get a refill on meds(almost like a waste of paper, no?), but its important and can at times either put you at ease about a certain symptom you’re having or prompt you to call your doctor asap. Having that small piece of paper could literally save your life. Again, most severe drug reactions are very rare, but rare doesn’t equal non-existent. Being previously briefed on possible side effects will make you better prepared to deal with them if and when the occur. So read, read, read!
On a more casual note, hope you all had a great summer with lots of family, friends, and fun. I am now living in Shadyside while attending college at the University of Pittsburgh. Had a bumpy summer with lots of health issues as usual. Had one of my anastomoses stretched a few weeks ago. Also have active Crohn’s so had to restart meds-6MP. We’ll see how it goes. My doc and I were hopeful that I would not have any disease recurrence, but that just wasn’t the case. We may decide to retry a biologic that I have previously been on, but not sure yet. I also have narrowing in the distal portion of my small bowel, so we need to remediate that in some way. I see my doctor in a few weeks so we will be talking heavily about what the next few months hold in terms of other treatment, increasing 6MP, etc. I am hopeful that I will be able to reach a full remission soon and have at least a few disease-free months/years. I hope you all are doing well, or as well as you can be, and that the fall is a relaxing and enjoyable season with minimal sickness, stress, etc. I am going to try to post more from now on so keep your eyes open!!
Take care,
Laci
IBDaily 