When I stop to consider some of the challenges RA folks face over time one has popped up for me just this past week. It involves sorting out the difference between routine illness and those related either directly or indirectly to RA. I recently started a new biologic and so, of course, whenever I begin a different medication I try to be aware of any unique symptoms I might be experiencing. I began to have some overall body fatigue, almost flu like, as well as sinus stuffiness, mild sore throat and a cough. ALL of these are listed as potential side effects. Some fall under the Common category while others are under the Less Common/call your doctor category. But hang on, there is yet another option. Perhaps I just have a general illness and these symptoms are completely unrelated to RA. Well, guess what? I did have an illness unrelated to RA - a sinus and ear infection.
The question is how to differentiate and further does it make any difference? That is the tough one. What I did, and will continue to do, is simple. Consult my doctor(s). I am not a medical professional and to try to make that diagnosis on my own is counterproductive. That may sound like easy advice to follow but remember as a manager of a chronic disease, you learn to deal with the ups and downs, the nuances and the decisions we need to make for day to day management of RA. So for me the tendency is to try to sort it out to some extent myself. The key is BALANCE and I don't mean in the physical sense. I mean we have to learn to balance when to manage ourselves and when to check in with the medical team. That is not always an easy call as I highlighted in my example. It may seem like a cut and dry decision but rarely is that the case and this situation is no exception. To some degree you have to use your instincts. As a general rule of thumb however, I call the doctor. Then not only will I get the correct treatment and proper diagnosis but it gives me peace of mind which is priceless.
The problem with trying to make the determination myself is that I tend to dismiss or overlook issues sometimes not knowing they are in fact related. That can prove very significant. Or I am simply wrong. Why risk that? Better to check in with my physician and get that expert advice and ease the anxiety. For instance in my case finding out I had an infection meant I needed to stop taking my Methotrexate and my Orencia. If I had not gotten that diagnosis, I have little doubt I would now have a super infection. In fact my Rheumatologist said to me, remaining on the RA medications I take that suppress my immune system while fighting an infection is both risky and dangerous. I needed to hear that. I have been so happy with the results of my treatment protocol that I was reluctant to rock the boat despite knowing full well that halting them for the duration of the infection was the prudent thing to do.
I have another great example of the challenges we face when it comes to sorting out cause and effect and it just so happens to be directly connected to this same story. So just to refresh, not knowing if I was having a flare, a reaction to the new medication or I was ill, I went to my PCP and he determined I had a sinus infection and a nasty cough. He prescribed an antibiotic and some cough medicine. I have some intolerance to a variety of antibiotics and so we decided to try a new one. For two days all was well. Sinus pain and pressure had receded, the cough medicine was working and I was feeling much better. I even took my methotrexate! Well on the second night (4 doses in) of the antibiotic I had the most excruciating stomach and intestinal pain I have ever experienced. It felt like someone had pumped air directly into my intestines and stomach. It lasted several hours and eventually led to diarrhea. Of course, during the night while this was going on, my husband was suggesting we go to the ER as well as looking up the medication side effects, interactions, etc. to see what was going on. That is when it gets tough to decide. I just instinctively felt I could handle this till the AM and then I called my PCP and he said to stop the medication (I did not need to be told that twice) and then he called in an antibiotic that both he and my Rheumatologist agreed would be fine. This turned out to be the correct course to take.
The truth is, though, once again I had to make some assessment of what to do. The lesson here is this - be prudent, use your experiences to help make the best decision but the failsafe course of action to take - consult your doctor(s). And how long you have had RA has little if anything to do with this. I am going on 20 years and I was still questioning what was what. Working with my doctors was the absolute correct course of action and thankfully I am on the mend and will hopefully recall this specific incident the next time I am faced with a "general" health issue.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?