Since my last post my disease has steadily gotten worse.
I’ve tried countless supplements. A Physicians Elemental Diet for 14 days to reset my entire digestive system. Going back on the AIP diet. All to no avail.
This is by far, the worst my disease has been. I called my rheumatologist and discussed going back on meds. I requested trying Xeljanz again. It’s been a long time since I’ve been on meds and a couple years since trying Xeljanz. My hope is that my body will respond.
Starting immune suppressing drugs during a pandemic is not what I want to do, but I know my body, and know it’s time to try and stop the disease progression and damage it’s causing.
The benefit of Xeljanz is that it’s a daily pill so if I do get sick with COVID, or anything else for that matter, I can stop it temporarily and let my immune system fight whatever it needs to.
And speaking of COVID, I just had the antibodies test done to see if I had it and was asymptomatic. Having been in a house with people that were sick, I would have thought I was going to get it. I’m curious if I had it and that’s why my RA symptoms have gotten so much worse. Any virus, bacterial infection, or pathogens can aggravate symptoms by causing an immune response. More on that to come when my labs come back.
In the meantime I’m waiting to figure out the cost of the meds and what kind of assistance I’ll get to pay for them. I started a new job on December 21st which has been a God send allowing me to work from home.
I joined a nice gym where I can go and try to keep up my workouts and have some equipment at home for days I just can’t go and do a big workout.
I continue mindfulness and meditation to try and keep a positive mindset. Some days are hard though. On those days I’m working on allowing myself to cry and accept that I can have bad days and that’s ok too.
Don’t take your health for granted and love on each other.
It’s been a while since I have written. Life has been incredibly busy.
In my last post I had come off Kevzara because of an allergic reaction. After that my rheumatologist put me on Olumiant, a once daily pill similar to Xeljanz. It’s a JAK inhibitor with an added black box warning of deep vein thrombosis and pulmonary embolism, in addition to the typical scary side effects that all the biologics have.
Similar to my experience with Xeljanz I felt some improvement in about 3 weeks. And similar to my experience with Xeljanz that improvement was short lived. I had a UTI, also a common side effect, and had to hold the meds while I took the antibiotics. Also similar to Xeljanz I began holding fluid in my legs. And not just a little fluid. About 8 to 10 pounds heavier with swollen feet and ankles every day. By the end of the day I was loosening my shoe laces to the point where they barely tied.
My rheumatologist said to stay on it. The medicine didn’t say that fluid or weight gain were side effects but that it’s too new of a drug to really know all the side effects. Perfect….
In the meantime I sought the help of a naturopath doctor. In our first 2 hour meeting she looked over some bloodwork I gave her and identified an issue that predisposes me to blood clots. So my rheumatologist was given the same bloodwork and never questioned my elevated homocysteine levels. And is not concerned that the meds have clots as a side effect or just didn’t look at the info I gave her.
That’s the final straw for me. I have failed methotrexate, Xeljanz, Humira, Kevzara and Olumiant. All due to side effects and no benefit.
I told my rheumatologist that I was stopping the meds. The naturopath shipped me a turmeric tincture to start. I’ve been taking turmeric capsules but they’re drug store variety, and not in this strength.
In the 5 days off Olumiant the fluid is almost gone. I started Tumero 10 mg 2X a day on Friday.
I’m hopeful and optimistic that the naturopath will help get to the root cause of my disease and treat it not just my symptoms and suppressing my immune system but bringing it into balance.
I know the answers are out there. It’s time for a change since what I’ve been doing isn’t working.
I’m 3 months into the autoimmune protocol diet. The knowledge of food allergies has helped me fine tune my eating even more. I added back two food groups and will be tweaking to determine if they’re inflammatory. My pain is coming back to levels I haven’t been having, and with the pain comes fear.
I’m afraid of how bad the pain gets. I’m afraid of the medications and their side effects. But more than that I’m afraid of losing my mobility.
I’ve been off the Kevzara for a month trying to rule out an allergic reaction. I’m trying to decide along with my rheumatologist if I will try it again or go on to the next step.
My prescription vitamin blend came in and I’ve been taking it for two weeks. I’m hopeful that they will be absorbed by my body and begin to help. We’ll do some blood tests in 3 months to see.
Healing my gut and my body will take time, patience, and persistence. I know that all the damage was not done overnight and will not go away overnight.
In the meantime I continue to move and strengthen my body and I am thankful that I can.