This last 6 or 7 months has been a roller coaster.
Last fall, after being on the methotrexate for a couple of years, my quarterly blood tests started showing elevated liver proteins above the "normal" range.
It happened once before in 2020 but my doctor said test abnormalities happen occasionally and not to worry. He ordered another blood test after 30 days; the results were normal.
When it happened again in Oct 2021, my regular rheumatologist was on PTO so a fill-in doctor had me cut my dose in half and retest after 30 days. Again, the subsequent test was normal. When I had my next quarterly screening at the end of the year, my liver results were again abnormal. This prompted another reduction of weekly dose and another 30 day screening. This time the liver test results were just barely within normal range BUT my iron levels were elevated. My doctor said to stop taking the methotrexate all together and had me see a gastroenterologist for additional tests including an ultrasound. My last dose of methotrexate was Jan 17, 2022.
The ultrasound and blood test results were normal as far as I could tell but I hadn't actually talked with the GI specialist or my rheumatologist. The test results were fairly easy to understand and used plain language. From my consultation the GI doc before the ultrasound, if the results were good, I could resume taking the methotrexate.
When I finally connected with my rheumatologist's office, he was again out-of-the-office on PTO. The fill-in doctor's assistant said it was my choice to restart the meds but that I'd have to get more bloodwork after 30 days. This was during a time of insurance uncertainty; I had just started the job with a technical staffing agency and wasn't sure I'd have coverage when the test was due. I opted to not restart the methotrexate. I was feeling pretty good but was still inside the 6-week period that it takes for the medications to be fully metabolized.
During this time I was also treated for nose bleeds (mild epistaxis) with acupuncture & TCM herbs. We talked about a naturopathic treatment for the RA as opposed to the pharmaceutical one. I started this discussion with other doctors in the past and had always wondered how I'd even be able to test the efficacy of a TCM treatment because it meant not taking the methotrexate. I felt a bit like I was on a ride I couldn't safely get off.
I remember the rheumatologist warn me when if I stop taking the meds and then try to get back on them, it would likely be more difficult to control the symptoms the second time around. So when I unexpectedly had to stop the methotrexate, I suddenly had this opportunity.
Unfortunately, after passing the 6-week mark I could sense my arthritis getting worse and the symptoms becoming more diverse. I'd been on an herbal treatment treatment for the nose bleeds. The doctor at NUNM changed my formula which included a stronger ingredient for the RA that wasn't available from the medicinary. The one source is in SE. Kind of an Achilles Heel but I suppose they fulfill orders by mail; I'd just have to stock up.
I started taking it with my other supplements like fish oil and bromelain. At biweekly acupuncture session, I reported that the meds seemed to work but that I still had sleep issues and pain in my joints. I said they seemed to work about an hour after taking them in the morning. He advised me to increase my dosage from 2xs a day to 3xs a day. While I was glad to find a non-pharmaceutical treatment, I was looking at around $150 a month for this one formula.
Unintentionally, I ran a couple of tests:
- When I took the weekday trip to the coast with my mom, I only took one dose in the morning. My symptoms were minimal, barely noticeable for the whole day. I didn't even take any that evening because I ate some food and went to bed before an hour for digestion had elapsed.
- A couple of days later, when I woke up with stiff hands & painful joints, I had my morning coffee but didn't take the TCM herbs like I normally do. After about an hour, I noticed my hands and joints felt pretty good and limber. It seems I felt okay after an hour regardless of taking the herbs.
For the next couple of days, I skipped doses when I felt like I didn't need them. I was experimenting and trying to extend the bottle of herbs I had to save a little money.
I continue to have problems my joints and the symptoms seemed to be getting worse, not better. I was still able to complete a couple difficult hikes. For my Hamilton hike, I took 800mg of ibuprofen about 2 hrs before setting out. I felt nearly symptom-free though I was sore in the evening, the usual refractory period with muscles and IT band. For my Dog Mountain hike, I didn't take any pain meds and had a lot of trouble with my right knee/IT band.
When researching alternative pain management treatments, I looked at CBD again. I hear the commercials on the radio but wanted to check for negative interactions with my other meds. It turns out that blood pressure and cholesterol drugs are bad combos for the liver. Fuck.
I am thinking after just ~3 yrs, "I'm having to choose between my joints or my critical organs." Kind of a no-brainer but I know that the joint pain is a symptom of likely irreversible joint damage. I already have trouble writing with a pen or pencil.
I will be seeing my acupuncturist again tomorrow to ask about possible interactions of the TCM herbs and the blood pressure and cholesterol drugs similar to CBD.
On Friday (a couple of days ago), I accepted a new job and unceremoniously ended my contract with the staffing agency. Certainly mixed feelings. My hours were cut to nearly zero without much warning and my coworkers were ambivalent at best. Professionally I was bored but being able to work from home full-time and being able to cook & use the restroom freely were huge benefits. Also, I knew I'd be afforded the flexibility to take time for short trips and hiking. Sera sera.
I got a new haircut and was feeling some relief and anxiety about the new job. I went to a movie.
New health issue I never expected.
Warning: personal stuff below
Here's my post to the interwebs (website omitted):
"I’m embarrassed and freaking out a little. Last night before bed I was having some ’me’ time and when I finished, the fluid was brownish/pinkish. There were two small red specks as well. After a short panic, I managed to drift off to sleep. Today I wasn’t in the mood but wanted to see if the same thing would happen again. It did. A lighter shade of brown but no specks. I have some health issues related to RA but generally in good health, diet, shape. I’ve been celibate since the beginning of the pandemic. I read it can be benign if it doesn’t persist for more than a few days. Can’t see regular doctor until next week. Any guys here (or their SOs) had this happen? Did it resolve itself? Or did it lead to tests or a diagnosis? Why ask strangers? I don’t really have anyone I feel comfortable asking. Just hoping to calm my nerves until I can talk to my doctor."
Dream I had Saturday/Sunday.
"Weekend adventure with H and B (but I end up in a car with only H and some other ppl). Over the weekend my stuff slowly disappears (stolen). Items from backpack, then finally entire backpack. My Jeep is stolen out front of a touristy restaurant. At the end of trip, I'm in an SUV with 5 others. Going home. Looks like Portland Westside/Pearl. I'm hoping to get a ride home or at least get dropped off at a MAX station. [I yelled at H for not understanding my predicament.] Suddenly, we're at a snowy ski resort. We all get out and ascend a hill. Then it's a long down hill. I'm barefoot but everyone goes ahead. I'm by myself. There a kind of lodge on the other side of this deep stream/melt-off that I have to cross. It looks deep. Some other guy also has to ford it but he quickly disappears. when I reach the other side it's waist deep."
I've been having a lot of dreams lately that I've been able to recall and jot down a flimsy summary. The themes have been connecting in stepdad, feeling overwhelmed with possessions, a trip abroad with familiar acquaintances but losing my luggage and shoes, a weird sex party at a cabin, strange blend of locations with LM (Pacific Beach, Brawley), a work retreat where I'm unprepared for a presentation, a break-in/breach of my house.
While curious topics, I didn't think much about them. However, my dream last night seemed to encapsulate my feelings in an enlightening way. It combines these themes:
- My desire to connect with people, travel, outdoors
- Feeling like things are being taken away by friendly strangers - this could be symbolic to my health and well-meaning doctors & nurses but knowing I have to advocate for myself
- Losing my Jeep to theft, which is less about the object and more about personal freedom
- Trying to get "home" but having troubles knowing exactly where that is or how to get there
- Losing my shoes like in a previous dream, might be about losing my footing, path, the way
- Having friends leave me behind and being angry with them
- Having to negotiate major challenges alone
Next steps.
I'm afraid of what blood in my semen means to my overall health. I think about Paul and his sudden demise and passing. My post to the interwebs didn't really help a ton but confirmed (a) it could be nothing but I need to consult my doctor, (b) it is scary to others.
I am going to send a message to my PCP and follow-up on the phone in the morning. I also have another acupuncture appointment tomorrow night so that's good to talk about the TCM herbs and new issue.
I'm terrified that if the new thing is "not nothing" that I will have to postpoint starting my new job or even have to give it up.
I really don't want to check again to see if the color and consistency is improving, ie returning to clear/white.
I just can't seem to catch a break. Sigh.
Related Article.
https://www.elle.com/beauty/a39180046/meghan-orourke-the-invisible-kingdom-excerpt/
"Today, we like to believe that we are rational about disease and immune to this kind of metaphorical thinking. But research shows that these views are still endemic in medicine, particularly when it comes to poorly understood illnesses, which are often seen as symptoms of a psychological problem. While advances in our understanding of mental illness constitute one of the great successes of 20th-century medicine, patients with immune-mediated illnesses confront an often reflexive categorization of their physical symptoms as mental ones—which presents a barrier to proper care and research. If medicine can’t see or name the problem, it can neither study nor treat it."I saw my acupuncturists last night and updated them on my conditions, the apparent efficacy of my current TCM herb compound, thoughts of restarting the methotrexate treatment, my concerns about returning to an office job with all my "issues".
I'm worried about being treated differently or the embarrassment of having to use the restroom often, or having to take PTO to seek treatments or take blood tests so soon after starting. I don't even know what will happen with the blood in my semen, if it's just random or related to the RA. While this disease has been around for a long time and there are well-understood treatments, the length and quality of life is hazy. There aren't any solutions or cures for RA, just meds to suppress the symptoms. TCM intends to address the underlying cause and I have a lot of trust in this treatment but I also know that my symptoms seem to be getting worse and not sure what my options are since I started having problems with my liver, iron buildup, and damage to the joints in my hands, elbow, shoulder, knees, and other places unknown like digestive tract, etc.
