It’s been a while since I posted anything to this blog, and I’ve struggled with whether or not to share in such a public manner what I am going to be writing about in this post, but it seems like the right thing to do.
I’d had flakes on my scalp for years that would cycle in severity, but it had never been terribly bad. Until, that is, the summer of 2009. I had returned to college in 2008 to finish the degree that had been a loose thread in my life for years, and during the last three terms at the university I had begun to notice a drastic increase in the flaking and itching of my scalp. I put it down to stress and a not so great diet, and didn’t worry about it.
Then in the spring of 2010, I hurt my thumb and it became very swollen and “sausage-y.” After doing all the normal home remedies for that sort of thing (ice, OTC anti-inflammatories, etc.) I went to the doctor. A referral to a hand specialist got me my first cortisone shot and the provisional diagnosis. Not being a dermatologist, he was hesitant to commit to the psoriasis, but he seemed pretty confident. I had already done some internet research (I’d had three weeks between my initial appointment and seeing the specialist) and I had arrived at the same diagnosis myself.
The thumb needed a second shot and in the time between the two shots I developed sausage toe in the left big toe. Another three weeks of waiting for a podiatry appointment, then two months wasted, in my opinion, by a podiatrist who said it wasn’t psoriatic arthritis (PsA) because it “didn’t look like any psoriatic arthritis I’ve ever seen.” Those of you who know me can probably already hear my response to that statement. So it was two months of wearing a rigid boot to keep from bending the toe, which did nothing but mess up my gait and add to my discomfort. Suffice to say, I was less than impressed. I finally got him to give me a corti shot in the toe and recommend a referral to a rheumatologist.
Two more months go by and I see the rheumatologist, who takes one look at the swelling in my fingers and toes, the plaque on my elbows, knees, and head, and says, “You have psoriatic arthritis.” We start with oral prednisone and he gives me a brochure on the various treatments available. Which, of course, I had already done research on and muscle tested myself for. The only treatment that tested positive was methotrexate, an oral immune suppressant that helps stop the body from attacking itself. The rheumy pushed Enbrel (the drug that pro golfer Phil Mickelson is now pimping for) and I told him that I would do everything in my power to avoid any of the biologics (Enbrel, Humira, Remicade) as I find their potential side effects more frightening than the disease. He half rolled his eyes, said fine, and we stayed with the prednisone for six months.
After that time, the x-rays showed slight deterioration of the bones at the toe joints (a common side effect of long-term prednisone use is bone loss), so the choice was made to go with methotrexate (mtx). For the first few months, I experienced the common side effects of nausea, dizziness, and sleepiness, although luckily I only felt one at a time. It was sort of a side-effect roulette: I never knew which one would manifest, how strongly I’d feel it, which day I would feel it, or how long it would last. I take the pills on Friday night, and after being on them now for eight months I’ve learned that taking them early on Friday, like around 4 or 5 pm, allows me to sleep through what would be prime side effect time.
You have to remember that while I was going through all of this, I was finishing college and looking for work. I was out of work for over a year, which I struggled with emotionally. On the one hand, I felt truly lucky to have that time to work on this health issue and get my body to a point where it could handle being at a job. On the other hand, I wasn’t adding anything to the household income, and since I had willingly quit my job to go back to school, I didn’t qualify for unemployment, nor did we qualify for food stamps because of Mitch’s military pension.
So, knowing that stress is a part of this ailment, I have worked to let go of my guilt over my unemployment. I kept looking, mostly for part-time work, as during the early months I felt that full-time work would utterly exhaust me and hinder my healing. Eventually I found part-time work, first with a previous employer for two-three afternoons a week (at a generous enough pay that it was worthwhile) and lately at a small historical society/museum for 20 hours a week.
Anyway, back to the journey. I take 15 mg of mtx once a week, on Friday, and take 800 mg of ibuprofen every night before bed. If the discomfort warrants it, I can also take an additional 800 mg in the morning, but no more often than every-other day.
With the first provisional diagnosis, I began looking at complementary techniques to augment the medication. Acupuncture worked pretty well, but only on a short-term basis. I would have reduced swelling and noticeably less pain for two or three days after a session, but then the effects would fade and I’d need another session. Even at a community acupuncture clinic with a low sliding scale, I simply couldn’t afford to go three times a week on an indefinite basis.
Reiki was also used, and continues to be used, but Reiki alone is not enough to eradicate the issue. I didn’t think it would be, as it is used to help bring the body into balance, but I use it to support everything else I am doing.
I used detox foot baths, the equipment for which was generously gifted to me by a friend, and it is hard to say if it helped or not. It isn’t something I did as a solo therapy, but in conjunction with everything else, so I cannot empirically say whether it was helpful or not. I do enjoy the foot baths, though, and often have interesting healing-related dreams afterward, so my gut says something is happening. I’m just not sure what it is.
The most useful complementary techniques are things that shouldn’t be considered complementary at all: dietary changes and supplements. I discovered in 2008 that I don’t tolerate wheat very well, so I’ve been avoiding wheat and other gluten containing foods. The more “adulterated” the wheat is (meaning the whiter and less beneficial in general) the better I can tolerate it, but even then I need to keep from eating too much. I use wheat-free pasta on occasion, and wheat & gluten free bread once in a while, but I avoid all those other gluten free products as a rule. I don’t need the cookies, the crackers, etc. as they are just junk food anyway.
I have also discovered that nightshades are a problem for me, particularly when it comes to my joints. I had eaten potatoes, tomatoes, bell peppers, and paprika all my life (never a fan of eggplant, though) and had never noticed any problems. But with the PsA came a change in the way my body responded to nightshades. After cutting out all nightshades for two weeks (which means really reading labels, since potato starch is used in a lot of products), I added a normal serving of marinara sauce on gluten-free pasta. The only thing in the sauce that was “new” was the tomato. Within two hours I could feel my joints getting stiffer, and by bedtime I was in severe discomfort, to the point that it kept me awake all night. Not only did I feel stiffness and pain in the PsA affected joints, but I also felt it in every other joint as well. I did the same experiment with potatoes, and not only did I hurt after eating a small serving of mashed potatoes, I also had pretty bad heartburn.
I now note any food that either makes my tongue itch or gives me heartburn and I avoid it. An itching tongue and/or heartburn is a message from the body that this food is not good for it, and we like to mask that message, thinking that our brains somehow know something that our bodies do not. That kind of split-self arrogance gets us into all kinds of problems!
The foods that I avoid are: wheat (and all gluten-containing grains), tomatoes, potatoes, pepper plants (not pepper corns), eggplant, tobacco, strawberries (joint pain), watermelon (makes my tongue itch), soft drinks (joint pain) and acidic foods (heartburn). This means that going to a restaurant is tricky – it works best to go to either a big chain restaurant that lists the ingredients for their dishes on their website, or to a local place that you can develop a relationship with. Restaurants where there is a strict “no substitution” policy are simply out of bounds, as too often there will be an offending food of some sort in every dish.
I do fall off the wagon from time to time, but I do so knowing that I’ll pay a price for it. Oddly enough, the wagon I fall off of the most is the wheat wagon. I cannot eat whole wheat at all – one bite is all it takes to turn my throat into a raging inferno, and nothing is worth that. But crappy wheat, like a pre-made, tomato free, “white” pizza, is a treat that I am willing to suffer mildly for on rare occasion.
Those individuals who can eat anything and suffer no problems are luckier than they can possibly imagine.
The list of supplements that I take is fairly long, and while there are a couple of things that I swear by, I hate to say that one thing or another is the sole reason I feel so much better than I had felt. I think there is a synergistic component to all of this, and I don’t like running out of any of my supplements for very long. The medication is fairly inexpensive, the supplements not so much. Developing a chronic ailment is something only the wealthy can truly afford.
On a daily basis, I take the following supplements:
*6,000 to 8,000 iu Vitamin D
*1 Mega Red krill oil capsule
*3 Tart cherry concentrate capsules ( I do swear by these – really, I do)
*400 mg CoQ10 daily
*2,000 mg Vitamin C
*1,500 mg Organic Nopal Cactus (for inflammation – has anyone tried the tea?)
*1 Calcium + D caplet daily
*1 mg Folic Acid every morning
*one chelated Krebs Magnesium and potassium supplement
*two quercitin & bromelain capsules (inflammation)
*two liver support capsules (milk thistle, turmeric, licorice root, Chinese skullcap root, and schisandra berry)
*an adremal support supplement (Vitamin B6 (as pyridoxine HCL) 25mg, Biotin 1,000mcg, Pantothenic Acid (as
calcium pantothenate) 250mg, Zinc (as malate) 5mg, Copper (as citrate) 500mcg, extracts of rosemary,
ashwaganda and hesperidin methyl chalcone)
*50 mg L-Glutathione daily (for my heart – PsA sufferers statistically have a higher incidence of heart problems, probably due to chronic, systemic inflammation)
I will be adding a hair and nail supplement once I finish researching all the available products (looking for one that is mostly biotin and silica, without the multi-vitamin components).
I am always open to learning about new supplements; if someone knows of something that is working, let me know.
I get blood tests every three months with follow-up rheumatology visits, and my blood test numbers get better every month. My CRP (c-reactive protein, an indicator of inflammation) is lower than it has been in a very long time, my liver and kidney function stays healthy, and my sedimentation rate (another marker of inflammation) is getting steadily lower. I think it is a combination of the meds, the diet, the supplements, and the meditation all working together. I can snap my fingers (both hands), and am walking without a limp (most of the time). Neither of these things were possible when I was first diagnosed.
I no longer think of the psoriasis and the PsA as discreet ailments. I perceive them as indicators of chronic, systemic inflammation. And that is how I approach it, and all the supplements and treatments I use (or try) are evaluated by their effect on inflammation.
I eat less animal protein now than I used to, simply because inflammation is triggered by prostaglandin 2, which comes from animal proteins. Prostaglandin 1 and 3 are anti-inflammatory in nature and come from plant sources.
I’m not ready to go totally vegan, but I’m happy being a partial vegetarian. That means more beans, more leafy greens (not a fan but am working on recipes that I can live with), and meat no more often than every other day.
Lots of people successfully take Enbrel or one of its cousins, eat whatever they want to eat, and are content to take other drugs to deal with the side effects of the biologics. That choice is as valid as any other, nothing in this post, or any other that I make, should be construed as a condemnation of that choice. It is simply not my choice.
I think most of us end up somewhere in the middle, taking the meds we have to take to function (without my synthetic thyroid supplement, I’d be dead in a year), and making the lifestyle adjustments that we can make and are willing to make. Often it depends on our families and what they are willing and able to support. Whatever choice you make, own it. It is your life, and you have the right to choose whatever combination of therapies that you can afford to keep your body as healthy as you can. I am willing to live with a certain amount of joint deformation if I can avoid the harsher drugs. I don’t model sandals, so who cares what my toes look like, as long as I can walk and wear shoes.
I will continue to chronicle my progress on these pages. Feel free to comment, but play nice.
In health,
Davena