Tag Archives: rheumatoid arthritis

The Chronicles of the Orencia Infusion: April

24 Thursday Apr 2014

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I may be taking a few days from my nail painting. My fingers and wrists are acting up. Just as well, I can catch up on my non-nail art related posts!

So, let us continue on my Orencia adventure…

 

April marks eight months on my IV infusion. This is the longest I have been on any biological medication since diagnosis. My symptoms are more even as the medication builds up in my system, I do not feel as awful towards the end of the month, and my flares are less severe.

However, and this makes me nervous…this past month, the immunosuppressant wore off two weeks early! I will not know for sure if this was the medication until next month’s infusion but I think it is since I should not have experienced such bad symptoms.

My knees were gone, my shoulders ached, I could not climb the stairs let alone get out bed. I increased the prednisone and still took double the amount of pain medications just to make it through work. My hand tremor returned. I was completely out of sorts.

Then I sat for my IV last Friday. Saturday, I felt wonderful! Like, I wanted to rock-climb and take a hike kind of wonderful! So…I guess I will see. There were other factors like working at the animal clinic more often and staying on my feet for more than eight hours a day, every day. Hopefully it was not all about the medication.

This month I received the IV in my left arm. Oh, the infamous left arm. Surprisingly, it was not painful and I barely felt the fluid entering my vein. My skin did not bruise or redden during or after and I had pretty good use of my left arm hours after the sit-down.

The only difference from last month was I zonked out afterwards. Last month, rested but did not take a nap. This month, I was out 30 minutes after I returned home and did not wake up for 3 hours.

I forgot to ask off from the gym so I had work in the evening. My pain levels were high, but my energy levels were pretty good.

 

All in all, I think this month was a success.

I am crossing my fingers that this medication will continue to work for me. I do not want to switch medicines AGAIN and have to feel awful for months. AGAIN.

 

Hi, my name is Monica and I have RA.

Second Dexa-Scan

18 Tuesday Mar 2014

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If you are on corticoid steroids long-term, have hit menopause, or have osteoporosis chances are your doctor has recommended a yearly dexa-scan.

I had my first one two years ago. My prednisone dose varied over those two years so I never saw the need to get another one. With my most recent flare and spine difficulty my doctor ordered another one. My symptoms were consistent with a regular flare except for the acute spinal pain.

 

My Dexa came back more or less normal. No osteoporosis!! …yet.

 

While my bone density levels are still “normal” they have decreased in the last two years. I am no closer to lowering my prednisone dose (crossing my fingers for Spring!) so I have to start osteoporosis prevention.

I started Actonel at the end of December and hopefully will be on a generic alternative starting next month. (Troubles in insurance land – I will follow up with another blog post soon).

 

This is good news but it makes me laugh. Three years ago, I was that person who refused to take pain relievers or vitamin supplements. Now I am taking 15+ pills a day and because they are eroding every inch of me I have to add more.

Not only was I that person who wouldn’t take pain killers, I couldn’t even swallow them! I was incapable of swallowing a single candy-coated Advil pill. Incapable, as in, I kept gagging it up involuntarily. (TMI??)

Look how far I’ve come! 😛

 

Hi, my name is Monica and I have RA.

Progressions

26 Wednesday Feb 2014

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The last two weeks I have felt completely unmotivated in life. This last flare left me tired, run down and painful. I barely drag myself out of bed in the morning, keep up with my gluten-free diet or care about anything. Usually, I would say this is just the depression but my mood has been great.

I lowered the prednisone after the main fire of the flare burned out. However, it is too low a dose. I really should be on at least 11mg but I cannot bring myself to take that much.

My mood is awesome. I have not felt “this good” in a very long time. I feel floaty and fun, I have more energy and overall in higher sprits.

But, I feel like the arthritis is in a progressive stage. No matter what I do or how much pain medication I take I just feel difficult. Everything takes 4 or 5 times more coordination, strength and will power.

It is an oxymoron in my body.

There is more inflammation in my toes and fingers. My knees are slightly more bruised. I have constant back and spine pain. Even my jaw hurts when I chew.

Is this normal?

It does not feel like a flare. It feels like a constant, dull ache.

I should increase the prednisone dose back to 11mg. Maybe the RA is progressing so I have more inflammation, making everything a little harder. What if increasing the corticosteroid is not the answer? What if I consistently have the same amount of inflammation?

Worst yet, my pinky gets stuck in certain positions and I have to massage the joint out of locking. It is super painful, annoying and disheartening. It is only my pinky but I know soon enough my other joints will follow suit.

 

Hi, my name is Monica and I have RA.

Chronicles of the Orencia Infusion: January

28 Tuesday Jan 2014

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My December infusion turned into a January one. The speciality pharmacy I have to work with did not send out the medications on time so I had to re-schedule…again.

 

We placed the IV in my right arm. It did not hurt and I did not even notice the liquid entering my bloodstream. If you read my account of the November infusion, linked here, you might remember I had an extremely poor experience. I was ecstatic that for the first time in months, the IV did not affect me!

 

But wait, it gets better!

I was still functioning that same day. Since I switched to the IV formulation, I always had to take the day off from work because it took so much out of me. This month I was able to run all my errands and I only took a two-hour nap! However, I will continue to request the day off just in case because there is no telling how these medications will affect me on any given day. I was kind of hoping this would not happen, given everything else had gone so well.

 

Unfortunately…

I sat with the IV one week late. I am still “new” to this formulation and it is still building up in my body so I cannot really afford to reschedule a dose.  The week following the IV my energy levels tanked, I flared up and had difficulty with normal, everyday tasks. I knew this would happen  because this particular week was the one where last month’s infusion wore off and the new one had yet to kick in.

 

I know I cannot keep taking my medications late like this, especially the most important immuno-suppresant but what can I do if my pharmacy is making me jump through hoops? My doctor’s office and I have had this problem for the last three months! Not right. From now on, after I am done with the IV, the doctor’s assistant will call the specialty pharmacy with me there, have me approve the following month’s shipment and she  will schedule delivery right then and there. Phew!

 

Hopefully there will be no hiccups in February!

 

Hi, my name is Monica and I have RA.

Dumb Sh*t People Say: RA Edition – Series Five, Part One

22 Wednesday Jan 2014

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“How are the aches and pains?”

 

This is not “how are you feeling?” this is “how are you feeling, in your own head?”

I have touched on people’s “suspended belief” before in the first series, and it still holds true. More often than not, people do not want to delve any deeper than words. The cannot help but think most of this disease is me. On the surface, they care but without the action. They look like good people without working to back it up.

 

Then there is my “inner demons” theory. How much of this is in my head? If people cannot see me struggling maybe I am giving this disease more influence and in turn it is making me worse. Instead of thinking I wonder what I can achieve today I think I will achieve everything; I can beat the RA.

Unfortuantely, as anyone with an autoimmune knows, this is not how it works, as much as we wished it is true. Thoughts have a power over us but not so much so as to change an entire disease.

Over the last few months, I realized being ill is the best way to see who my true friends are. Never once did a good friend ask me “how are the aches and pains?” They see when I struggle and they help. They express concern, they check in. They are aware.

People who ask “how are the aches and pains?” rely on words. They appear considerate while fueling their own suspended belief in me.

 

Hi, my name is Monica and I have RA.

Where’s Monica?

07 Tuesday Jan 2014

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Ohhh boy. My blogging hiatus: 

After I got out of the hospital, I felt awful. 

Then New Year’s came around. I hate New Year’s. This is the depressive part of me because why celebrate the start of a new year when the last two years have really sucked? Thankfully, that mood has passed since the 1st!

 

And the best part! I started working at the animal clinic again and I got an awful cold/dry burn on my hands and three nails broke! I could not even file them down they just broke all the way down in the corners so I had to wait for them to grow back. I would love to say I can finally start painting my nails again!

Unfortunately, while my nails are finally healthy again, my skin is not. I have tried everything to get rid of the patches and to no avail! So I apologize, in advance, for any discoloration on my hands!

 

Hi, my name is Monica and I have RA.