I found that the longer you keep from doing something (e.g. posting a new blog post!) then the harder it can be to start. Rather than continue to procrastinate I have decided just to jump in.
So what am I currently on? For the longest time I was on daily Lyrica – between 300mg to 450mg per day – prescribed for my RLS but I am sure was helping with controlling some pain from PsA; Avara (leflunomide) 20mg per day – for PsA; Enbrel 25mg SC injection once per week – for PsA; occasional Voltaren SR (slow release) 100mg at night if I had been waking with back or rib pain – this usually may happen if I lengthened out the time between Enbrel doses – for PsA; Lipitor 5mg per day to keep cholesterol in check; Tramadol 50mg as needed for breakthrough pain from PsA, and for controlling RLS.
So you are probably asking how did I fare on that medication regime? Well, firstly the typical dosage for Enbrel is 50mg per week (2 injections of 25mg) and I found that I was keeping the pain away with just one injection and so was doing that. Oh, I also need to point out that since 2016 I have been buying all my own medication as my health insurance of my employer did not cover pre-existing conditions. So I had to make sure that I only took what I really needed as it was coming out of my salary.
Occasionally I had a breakthrough of lower back pain before my next scheduled dose of Enbrel, and in that situation I would take it earlier. Also, occasionally I forgot for a few days that my Enbrel was due, and so would end up taking it later than scheduled.
Overall, I was pain free and mostly skin psoriasis free apart from a few persistent patches on my scalp.
The biggest cost of course is Enbrel, which in Thailand goes for about USD$250 per dose (i.e. per week for me). Lyrica is also expensive, going for about USD$75 for a box of around 42 capsules (150mg each). Arava here is around USD$100 for a bottle of 30 tablets (20mg each). Tramadol is pretty cheap when purchased via hospital, but I can’t recall how much I paid for the last prescription. Tramadol purchased via shady OTC pharmacy was more expensive of course. I also was on Percocet on and off, which I alternated with Tramadol (and sometimes together with Tramadol) for breakthrough pain, and mostly for control of RLS. Percocet was expensive through the doctor who was prescribing it for me as it was from a private, high-end hospital.
The project I was working on for my job came to an unexpected end around a year ago, and so I was let go along with the rest of the project team. Since then I have been unemployed and so have been using up my savings. Unfortunately, this has resulted in having to stop a lot of medications as keeping my kids in school and a roof over our heads has taken priority.
So, which medications did I quit, and how did I quit them? Well Enbrel is obviously the biggest cost at over USD$1,000 per month, so I started by trying very hard to push out the time between doses e.g. 2 weeks, 3 weeks, etc., and usually only taking an injection when the pain was just getting too much. Where was the pain? As mentioned above I’d suffer from lower back pain on waking – but typically this wasn’t too much. However, this lower back pain is what increased a great amount when I pushed out the time between doses. As a result I was taking Voltaren 100mg SR far more regularly. I had raised stress for a while as I was worried about the effect regular Voltaren would have on my cardiac system as well as my microbiome, however as my pain increased I came to terms with the compromise.
I cut out Lyrica completely over a period of a few weeks and was surprised that I felt no untoward effects. There is some controversy about whether Lyrica’s effect is real or placebo, and I guess in my case it was placebo. Right now I am still off Lyrica. I also cut out Avara for a period, but started again after psoriasis and arthritis symptoms got to be too much.
Current Status with Reduced Meds
So how has reducing my medication affected me? My last dose of Enbrel was 1st August last year (2018). At that time as mentioned above I was pain free (aside from occasional lower back pain on waking which would require some analgesic pain relief) and mostly skin psoriasis free, apart from a few persistent patches on my scalp.
I am pretty consistent with keeping a pain score record, and looking back to my records from that time I can confirm that I only recorded lower back pain and RLS i.e. no other areas of pain. My fingernails were also clear and normal.
How about today? Here are my hands. Note the pitting and deformation of the fingernails – especially on my left hand – as well as the swelling of the finger joint (depicted in the rectangle) and psoriasis skin spot.
My thumbnails are about 90% normal, however, pitting and white spotting is noticeable.
That swollen finger joint on my left hand can get very painful, to the point of interfering with my concentration and being agonizing (6-7 on the pain scale). Note the picture below from the 25th January when it was very swollen and an angry red color:
Apart from the changes in my physical appearance from psoriasis, at this time (February 2019) I’m tracking pain in 20 different joints, including hips, shoulders, knees, feet, hands, neck etc. Pain comes and goes from each site with only a few being consistently painful, such as my neck. Increased pain has resulted in a large increase in taking analgesics, although honestly speaking the pain isn’t really in control.
It has now got to the point where the pain is so bad in my left heel area that I limp, so I’ve decided to buy another 4 week supply of Enbrel (USD$1,000+) to try and get that under control, putting it on my credit card. It is a difficult decision as right now I have no way to pay off that credit card debt. However, I think it is necessary in order to a) be able to walk normally when presenting for an interview for a job, and b) reduce the systemic inflammation which must be present in my body and likely stressing my cardiac system. At the time of writing I’m waiting for the hospital to call me saying that the Enbrel has arrived (they had to order it in). At the same time I’ll see the doctor and try and get something better for my pain – although I don’t have much confidence that the doctors in this area are very competent at dealing properly with a chronic disease such as my PsA.
In restarting Enbrel I did a little research as I wanted to know if I needed to initially take a higher, loading, dose. Interestingly, I found that researchers note that often once someone stops taking a biologic it typically is not effective at all if the patient restarts it, particularly with Remicade. However, Enbrel is the exception with patients usually have a good response on restarting, although never as good as the first time using it.
Now I understand why my Rheumatologist put me on Enbrel after I had stopped Remicade!