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Battle Report

polly pocket lizards

So I met with my rheumatologist today and learned several things; my RA/RD is fully active again, I have Sjogren’s syndrome [not a surprise], joint damage in my hands and feet, and my Fibromyalgia is fully active. Obviously most of these things are less than ideal, however we have a course of action. I am a fan of practicing reckless optimism, so let us explore! I will be changing my infusions from my IV Orencia to IV Actemra. We will be taking advantage of me not being allowed to have my IV for 8 weeks due to surgery for me to transition over to my new biologic. For those who are not in the know Actemra is an IL-6 inhibitor which works with a part of the immune system no other drug currently addresses. In addition to this I have had extremely dry eyes and mouth for months and finally asked about it, I was told I had sjogren’s syndrome which my doctor had several medical solutions to help with symptoms. We decided to just take care of the imminent RA issue for now and to explore these options at a later date. At present it appears the joints in both my hands and feet are finally showing signs of irreversible deterioration however we had been aware that we were headed toward that for some time, we had just hoped we could stave it off until I was a bit older. She strongly encouraged my foot operation due to the fact that they are re-aligning the bone, shaving the bunion, and evaluating the deterioration of the joint capsule. My foot operation is scheduled for December 14th and I am to be off my feet for 4-6 weeks. I only have the option of 3-4 weeks so we will be hoping for the best. My husband, younger brother, and close friends will be helping me not lose my mind I also have adult coloring books, movies, and Fallout 4 to help distract me. Due to my history with pain medication I will be attempting to go off of it as soon as possible. They want me on Oxycodone and Percocet for almost a month, we are aiming for less than 2 weeks.

BELSOMRA UPDATE:

DO NOT ACCIDENTALLY DISCONTINUE, I did this due to a refill error on my part, this caused me to not sleep for close to a week. Prior to getting it back into my system I experienced mild withdrawal symptoms that made me a grouch. After 3 days back on my regular sleep schedule, all is well with Belsomra and my world.

Remember: Power, wisdom, courage

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Could We Not

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Alec Baldwin whiskeyAs some of you may know due to my Orencia and other medications that I require to maintain basic function sort of rule out biological parenting. Some in my position opt to discontinue their medications in order to become pregnant but can never take them again due to the immune system developing antibodies against them [this is difficult with my severity]. Additionally both my fiance and I have genetically linked health conditions which we feel are irresponsible to pass down [between the 2 of us we have 3 types of arthritis]. It is due to this that after my fiance and I are married permanent measures will be taken to assure no pregnancies occur. That being said it would appear that the closer we get to the wedding the more individuals feel they have a right to ask when we will be procreating. Now I’ve never felt that marriage and parenting were synonymous, they are two very different types of commitment in my eyes. Eventually my partner and I will have children via adoption but everyone feels they are entitled to ask us when we will “start trying” as we approach our wedding date. It is difficult for me to essentially be infertile in my early 20’s and even harder when everyone feels they have a right to inquire as to our family planning. We have developed some pretty solid party lines for the time being such as: “Well we are waiting until I graduate” or “we want to be a couple first”, while both of these are true it tends to dissuade nosy individuals. The point is people need to stop inquiring as to strangers reproductive choices, it is frustrating and can be hurtful given the individual’s situation.

The Foot Chronicles [Part 3]

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avocuddle

So today I went back to my fabulous orthopedist to review my MRI results and talk about my options. Upon arrival I met another one of his residents [he has a LOT] who poked around my foot a bit then called my doctor in. It would appear that I will have the distinct pleasure of major bunion surgery. Now there’s several different ways to operate on a bunion but given my RA and its severity I will be having the more extensive version. This means they will loosen the joint capsule, shave the bone protrusion down, and break the base on my big toe and reset it straight. My orthopedist did say that were I a 60+ patient he would have fused the joint but didn’t want to do something so extreme on me at my age [thank god]. The recovery time is 6+ weeks so we are waiting until after the wedding and have it done in December. I’m not thrilled about this but we have tried all of the alternatives with little success, additionally the skin near the bunion is paper thin due to steroids and bone pushing against it. I asked my  orthopedist why I had such a severe bunion at my age and he said he felt the RA fed the bunion and vice versa causing it to just keep getting worse. To put icing on the cake my Orencia IV will have to be pushed off post-op. I’ll have surgery 2 weeks after my IV then can’t have it for 6 weeks after the surgery for fear of the foot not healing. I’m going to be talking with my rheumatologist about this as I’ve never gone that long without treatment before and see what she says. In the meantime I was prescribed a topical anti-inflammatory to get me through to December and given a standing appointment should my foot get too bad between now and my pre-op consult in November. I will update as this progresses.

Boom Boom Pow

i failed my wayLadies and gentlemen we have a winner! And may I say about damn time. As soon as they upped my Lyrica dose the “Hamster ball full of stalactites and lava” that I have been dealing with daily finally lost it’s bite. That is to say there is no more burning pain [which is a MUCH bigger deal than the average bear realizes] and the stabbing went from a firm shanking to an unplesant finger poking, progress. In all seriousness though the 100mg 2x a day in combination with my Tramadol, Orencia, Tizanidine, Amitriptyline, etc… has made a huge difference and I am feeling like I can function better now. Additionally I AM BACK OFF OF VICODIN! I haven’t had progress this rapid since they put me on Lyrica in the first place, though to be fair the weather has significantly improved as well. Even if this progress is just a small step in the right direction it’s still progress. On the down side it has made me a bit drowsy but I’ve been powering through like a complete and total boss.

Mayo clinic should be contacting me in a few weeks regarding scheduling my 3 week pain treatment program. On one hand I am so very excited that there is somewhere that hasn’t given up on me and just said ‘you’re trapped, sorry about you’ [looking at you cruddy ER doc] on the other I am not looking forward to 3 weeks in a Microtel by myself, a full week was tough last time. I’m hoping that a couple people can come visit me the first 2 weekends but we shall see. On the upside I get to eat at “Mac’s” which is a fabulous restaurant right outside the Gonda building at Mayo. Let’s be honest food is usually the upside to most situations.

Two doctors walk into a bar…

taxidermy for the ladiesAlrighty! So I went to both my Neurologist and the Rheumatologist yesterday and we learned a couple things. First I saw the neurologist who thinks that the pain issues are related to RA, she wanted to hear what the rheumatologist said. This is the part of the story where I tell you about the longest rheumatologist appointment I have ever had including the one when she diagnosed my RA. We sat there talking about specifically what type of pain it was what I had done for the last 48 hours leading up to it, what was going on in my life, school, work, everything. The best pain descriptor I could come up with was it felt like I was in a hamster ball full of stalactites. She believes that this was a pure Fibromyalgia flare up worse than any I’ve ever had due to the increased stress of failing my first college course, my boyfriend graduating, and the intense cold in the area I live in. She did an incredibly thorough physical and showed that NOT A SINGLE ONE of my joints was swollen granted I had had my Orencia IV two days prior. We did discuss the possibility of me having a minor RA flare as an explanation and she expressed that if we found swollen joints in the near future that she would want to change my IV to Actemra [I feel Orencia is doing a great job though]. The end result of the appointment was no medication change for the time being and both doctors urging my to go to the Mayo clinic’s ‘Pain rehabilitation center’ for the 3 week program. I will be resuming my yoga in an attempt to help with the day to day pain and we will re-assess my medications in 3 months once the cold weather is really gone. On the bright side while I’m not thrilled about not being able to fix this with medication at least I’m not on Methotrexate injections again.

Keep on walking 😉

FREEDOM

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RDJ alcohol and narcoticsToday I went to see my rheumatologist. At the beginning of the appointment I was straightforward in telling her about my trip to the Mayo and what they had told me regarding my lack of RA symptoms and the presence of Fibro symptoms. She was very attentive and listened to my whole spiel. I asked if this meant that we questioned my initial diagnosis of RA and she said no, she pulled up a chart on her computer showing my total swollen joint count over time and pointed out how many swollen joints I’d had initially and how they decreased over time as we became more agressive in our treatment. She checked my trigger points and said that they had not been this bad previously and showed me a chart of my previous positive trigger points, neither of us are sure why it is suddenly worse but we agreed that continued use of Lyrica and Tramadol was in my best interest [due to the use of Tramadol I am COMPLETELY off of the Vicodin!]. Then I asked the question I have been dreading and fretting over: “Can I stop my methotrexate?” For those just tuning in Methotrexate [or MTX for short] is a chemotherapy drug that in small doses is used to treat autoimmune diseases such as RA. It is very harsh on your body and I personally have had the unfortunate side effects of mouth ulcers and nausea. In short I would very much like not to be taking MTX injections once a week. So I asked her if I could stop this horrible drug AND SHE SAID YES! I am officially off MTX! This is kind of a big deal. I then asked about my other RA medication Orencia, she said that if my RA is still in remission [which she confirmed is what happened] in 6 months that I can discontinue Orencia! BUT she was very adamant about this disclaimer, once RA is in control getting back to remission after a major flare can be hard to come back from, so from here we proceed with caution. On a positive note I begin tapering off of the NSAID Celebrax tomorrow as they think it may be contributing to my stomach issues.

Additionally I went to the ENT that my mother is very fond of to seek out help for my oral ulcers, he was very helpful and gave me MEGA oral ulcer solution with more drugs in it than I can remember [mostly used on chemotherapy and radiation patients] and some oralgel paste. They are already getting better!

Really life?! Really?

My best friend and rock Shoobi [also O-bear]

So it’s no secret that life likes to test me sometimes but we are at a whole new level. So I spent this summer recovering from my car wreck and was supposed to move back to college yesterday. However my best friend in the entire world (and the girl who has been by my side for my entire journey through RA hell) fell off of a longboard and broke her right leg in 10 places. I’ve been camped out at the hospital since it happened except for [drum roll please] this morning I received a call from my rheumatologist telling me that my tuberculosis test came back positive and that I have “Latent TB”. Basically it’s hiding in my immune system and theres a 15% of getting it for real later in life. It’s not contagious and only affects me but still sucks. I start a treatment similar to MTX [chemo] monday to try and clear it out somewhat. They made me run in for a chest X-ray right before Shoobi’s surgery, I made it back 5 minutes before she had to go back to surgery. I really wish there was something I could do to help…. This woman has been an amazing friend to me and I just want to know why her. Why my best friend? I know it doesn’t make sense to try and reason this out and that these things happen but I… graaaahhhhh…..

 

In other news I have officially failed Remicade and will be changing to Orencia infusions in a few weeks. Hopefully it will stop the damage as of now the base joints in my hands are beginning to bend as well as some of my toes. If we can’t get a handle on this soon there will be some pretty bad long term damage.

 

So yeah…. life.

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