Not only do I have two types of autoimmune arthritis, but my mother has two types of arthritis that are considered as autoimmune arthritis (RA and SS), as well as another autoimmune disease (polymyositis) which is classified as a type of arthritis but does NOT fit the definition of "autoimmune arthritis" as defined by IAAM and the Rheumatology Board that worked to come up with the definition and types of arthritis that fit that definition. The reason is that "autoimmune arthritis" as defined by IAAM first of all includes primary joint involvement in 90%+ of all reported cases. Polymyositis, an autoimmune disease that is considered one of the 170+ types of arthritis by the Arthritis Foundation, does NOT have joint involvement in 90%+ of all reported cases. The joint involvement is considered secondary. So while my Mom has polymyositis, she also has RA and SS. Her RA was diagnosed within the last 6-8 years and her SS was just recently officially diagnosed, even though I've been telling her for some time that she sure had all the symptoms of SS: dry eyes, dry mouth (so bad water doesn't even help) and dry skin.
I also have another reason for caring so much about awareness and the above mentioned groups. My bestest friend, Mary, was diagnosed over 15 years ago with rheumatoid arthritis, one of the types of arthritis considered an "autoimmune arthritis". She also has scleroderma as well. I may not have had the most effect treatment, or for some time any treatment at all. But, her case angers me because not a single one of her doctors has treated her RA aggressively. And she has more joint damage than I do. None of my docs have brought up joint replacement surgery except one who mentioned it was possible within the next 15-20 yrs and it's been only 11yrs maybe. But Mary has had enough joint damage that her docs have recommended joint replacement surgery or some other type of joint surgery 5 times. She had 4 surgeries in as many years I believe. She started with having joints on her right hand replaced as well as having her wrist fused. The next year, same surgery on her left hand. The third year she had surgery on her right foot where the doctor put a rod in all but her pinkie toe so that her toes were straighter and less painful. He also did something to the large joint on her big toe but I'd have to find out what. The fourth year, same thing on her left foot. That was last summer. Now her rheumatologist is recommending surgery on her right shoulder, or at the very least seeing the surgeon and discussing it. I wonder how much of this damage could have been prevented had they been aggressive in their treatment? But the most aggressive treatment she's had was a 2 disease modifying anti-rheumatic drug (DMARD) combo of Plaquenil and Methotrexate (MTX), a chemotherapy drug used in lower doses to treat rheumatoid and other types of autoimmune arthritis. While many consider MTX to be the "gold standard" of therapy since it is the general first-line therapy most docs reach for, it obviously didn't do much to slow the progression of joint damage for Mary. And that bothers me. Because now, there are SO many choices of medications that more aggressively treat RA that are on the market now, a number have been out 5+ years and yet not once have they wanted Mary on a biologic response modifier (BRM). I've been on 3 BRMs and while I have more than my fair share of damage, I don't have the damage she does. And it's not a contest between us as to who has more damage or who hurts worse. Mary was one of my closest friends growing up. How I, of all people, missed the signs of her RA in her teen years I do not know. Well, I do in a way; she was a softball player, so a lot of the warning signs we just thought were from playing softball. Then when she was pregnant the first time, she felt better. After having her daughter, who is now 16, she got worse. The doctors were not finding anything wrong and I think were chalking it up to post-partum depression to an extent. I may be wrong about that. After having her daughter in April, she got pregnant again in Dec. Once pregnant, she felt better. By then I had recognized the signs. I kept on her about not taking the answer of "You're fine" from the docs. But it wasn't until after her second child was born in Aug and she worsened again, as it typical for women with RA who have a child, that they finally made her diagnosis of RA. Like me, she is sero-negative, which means that the marker for RA, rheumatoid factor, is not present in the blood. 75-80% of all people with RA have the marker in their blood. This is called sero-positive or RF positive. Those remaining 20-25% of people who do not have the marker are sero-negative or RF negative.
In many cases, doctors like to make a patient think they are fine if they are sero-negative. But that doesn't mean they are fine. It simply means that in many cases, they'll have a less active form of the disease. There are always people who don't fit that profile as well. Just as there are many sero-positive people who have a milder form of RA. In the past, to receive a diagnosis of RA, there was a list of 7 items, and 4 of them had to be present, some being present for more than 6 mo, before a patient was considered to have RA. It was not 3 of 6 AND being sero-positive as many docs made new patients think.
Here are the 2010 ACR-EULAR criteria for classification of RA: http://www.rheumatology.org/practice/clinical/classification/ra/ra_2010.asp
Here's what my daily reality of having RA, SS, as well as a number of other types of non-autoimmune arthritis is like:
|Morning Medications 10 pills|
Then approximately 3 hrs after taking my morning medications, it's time for a dose of a pain med. This is not a scheduled dose exactly, although I tend to take it around the same time every day. I do so because the act of getting up, getting cleaned up, getting dressed etc. takes a big enough toll on me that it's best I take a PRN pain pill to keep ahead of the pain in a way. But thankfully, the PRN pain med I am currently taking is a fairly small pill! I also tend to take the medication I need to help control my dry mouth. I was diagnosed with Sjogren's Syndrome between 6 and 8 years ago. It is an autoimmune syndrome that causes problems with dry mouth, dry eyes, dry nasal passages, dry skin, and for women, dry vaginas. We're not talking just a little dry. We are talking gritty, sandy, painfully dry eyes that are prone to getting scratches at times because they are so dry that you tend to want to rub them to try to get some relief. Mouths so dry that you get the feeling of the worst cotton mouth you could ever imagine. It sometimes feels so dry that you could swear your tongue is swollen.
|PRN or As Needed Medications 2 pills|
Oh by now, three hours have passed.Yay! That mean I can take what would be considered my "noon" medications IF I took my morning medications on the schedule I was used to taking them at the nursing home. But sadly, I can set my alarms (usually 4 sometimes 6) and sleep through them. Especially if I was awake late in the night and had just fallen asleep an hour or so before the alarms go off. So they are labelled noon for lack of a better term. And since when I wake up, it's my brekkie time, this is my lunch time (if I ate lunch) and typically people think noon when the think lunch right?
|Noon Medications 4 pills|
|PRN or As Needed Medications 2 pills|
Ok wow! Another 3 hrs have passed! Time for my evening medications.
|Evening Medications 3 pills|
|Bedtime medications 6 pills|
|Daily Medications with Bottles|
|Close up of Doses of Daily Medications|
As a last look, here is what all of my medications look like when seen all at once. The picture at the left with all my medications out (I did not repeat the PRN doses) and their bottles, with the names of what I take and how many times I take them per day listed under neath. On the right are the pills close up. None of the pictures show the 2 calcium pills or 2 vitamins I take as well. Including vitamins, calcium and what is shown here, I take 31 pills per day! This does NOT include anything I have to take to treat headaches, colds, infections, etc. which happens more often than I'd like! The pics that are broken down by dose also do not show the eye drops I have to use several times a day (thank you Sjogren's Syndrome) or the various creams I need to use. At times I have to use an anti-fungal cream because I get a rash in my underarm areas that can spread across my chest and under my breasts, and sometimes under where my gut hangs over my waist (thank you pred and inactivity) as well as the creases of my legs where the brief rubs against the skin. At first it was diagnosed as a heat rash. And heat does have an exacerbating and irritating effect on it. But, it's not as simple as a heat rash. Heat rashes do NOT last for more than 3 YEARS! And generally they are confined to areas where you have skin touching skin. Mine started in my underarm area, yes. But it wouldn't have spread across my chest if it were a simple heat rash. Heat rashes tend to go away when there is a lowering of the level of heat as well. And generally heat rashes are itchy. This oddly was not. No I was the lucky? owner of a fungal rash. The 10 yr old in me is saying "I guess that makes me a fun....gal."