Doctor visit update

General Blog
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Hello all. The last 7 days have been exhausting, but hopeful. Let me explain:

'Thanksgiving day my husband and I got up at 4:20 am to head to the airport to fly to Pharr, Texas to spend some time with my parents and my oldest son. We all went out to Luby's for Thanksgiving dinner, then spent the rest of the day at our old house packing up the rest of our stuff and getting prepared to load it all up in a truck. Friday I went to my doctor's appointment which had gotten canceled without warning (more on this later). We picked up a 26 foot long, 12 foot, 7 inch tall moving behemoth and began loading up. Spent the morning on Saturday loading, and the afternoon cleaning the house to prepare it for sale. Sunday we spent the day working on clearing out the multiple viruses and malware from my dad's computer, then went to a movie. Monday I went to the doctor, filled my prescriptions, and hit the road. I drove to Pfleugerville where we spent the night, then I drove the rest of the way to OKC on Tuesday. Got home about 8:30 pm and we unloaded the truck until about midnight, then returned the truck. We were pooped, and I am paying for all that driving (and falling out of the truck on Monday night) in terms of inflammation and generalized pain..but it is done and we now have the rest of our stuff!

DOCTOR: The doctor looked at the pictures and after a bit of discussion decided the following:

1) Enbrel is absolutely not effective for me, so I am switching back to Remicaide (yeah!!!!) I have applied for the assistance program and am waiting to hear from them as to approval. In the meantime I am continuing Enbrel/MTX.

2) I am likely developing Psoriatic Spondylitis, and I will be going in for a series of x-rays and possibly a MRI to determine whether or not my discs have started to fuse.

3) I have Inflammatory Bowel Syndrome

4) I am in an unacceptable amount of pain, and need daily treatment for it, as well as some rescue painkillers for those days I cannot get out of bed. I also need to continue taking muscle relaxers, as the spasms in my upper and lumbar areas are out of control.

5) I have spiraled down into a deep depression, and need medication to get me to a more level mood.

6) I am now taking sulfasazine (cant remember how to spell it) for the IBS and arthritis and amitryptaline (again with the spelling) for depression, insomnia, and nerve pain. I also have an increased dose of vicodin for really horrible pain days and a muscle relaxer for days when my back is spasming. I will continue to take MTX at the same dose (7 pills on Sunday) as well as daily Folic Acid.

7) I feel really good and a bit more hopeful than I have in a long time. The doctor is taking me seriously, and has noted the increase in inflammation in my hands fingers, and wrists. She is also very concerned about the increased deformation in my legs. Although I have an increased risk of serious complications and possible reaction to the Remicaide because I was on it, and then off it for so long, I know that I felt better and my psoriasis cleared up completely on it so I have high hopes that it will work at least as well as it did when I was on it before. Lets face it, when my psoriasis is bad enough that a young girl saw it as I washed my hands at the movie theater, and she freaked out and ran out of the restroom in tears, I feel somewhat justified in my fear of going out in public. Yes, I realize her reaction was a bit extreme, but it still made me sad and ready t go home and stay there forever. Even if I weren't in an excessive amount of pain, I need to be on a medication that will get the psoriasis under control if for no other reason than to help me get out of this depression.

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Hi tmbrwolf329,

I am new to this BLOG, but not so new to PsA. I believe I've had it for a very long time but was only recently diagnosed. As I've read through the messages from others, I realize that I am not alone in this, and seeing photos of others, I know I've joined a good group of people trying to deal with the daily challenges of PsA.

My hands are the most visibly deformed area of my body to date; however, my feet and hips over the past two months are joining the deformity club. I was initially started on the antimalarial medications, progressed to the DMARDs, and am now on Humira + Sulfasalazine. Initially, I believe the Humira was helping, but now I am not so confident.

I totally relate to your symptoms, feelings, and falls. My balance is not what it used to be, that's for sure. I have taken to wearing gloves at night to help with the pain in my hands. One thing that completely caught me off guard was Raynaud's syndrome. Imagine this: I am at a very important business meeting in New Orleans. I am waiting for the people attending to show up when I notice my hands look dirty. I go into the restroom and look at my hands, and my palms look as if I'd flattened then in a blue ink stamp. Seriously, they looked so bad I started laughing out loud. My first thought was I'd touched my dark colored jeans, and the dye from the jeans had transferred to my hands. A possibility, but upon further investigation, I noticed that dye had not transferred to any other body part. Hm, I thought, what the heck is going on? I went on with my meeting thankful that the lighting was dim enough so others would not see my hands, then flew home to California. On Monday morning, a colleague of mine noticed my hand color and searched Google for a possible cause - yep, Raynaud's syndrome. What!?! I contacted my doctor and he confirmed that, yes, Raynaud's is another symptom. Now I am left thinking, what's next?

I can tell you that on the days when I just don't want to get out of bed, I think about my grandmother, because she had arthritis from an early age, and back in the early 1900s, the only pain relieve offered was aspirin. She is my inspiration to continue to move even when I want to stop. As one of 11 children and the eldest, she had to drop out of high school at 16 and help her mom by getting a job and taking care of the other kids in the family, particularly since her father died at a very young age.

So, I know, too, that the only way to combat this blasted disease is to remain on medication, get the inflammation under control, and hope that researchers are looking for a cure for autoimmune diseases.

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Oh timberwolf

...sounds like you nearly drove yourself to collapse and now you are just miserable girl. I am so sorry that your trip was not a pleasant one as you had hoped. The reactions of small children have driven me to stay out of public when I look like an alligator. My own husband will not look at me or touch me when I am like that. I feel like a leper and it is difficult to overcome the humiliation and the downright hurt feelings. I used to be pretty- now I am a blimp with digits and crusty patches that itches on the inside like a crack addict. I have seven different pairs of gloves for every day wear in public. I had holes in my palms all last Christmas and the tops where covered in scales, no one wanted to accept gifts after I touched them.

How are you doing with your depression today? Are you feeling any better? I missed your cherry disposition!!

I love having a normal person who is just like me to talk,bitch, moan and groan with because you are suffering many of the same issues. I am terrified of my first MTX treatment next week because I spent my entire life avoiding those types of chemicals in any form! The steroids wore off suddenly in the middle of last week so I am suffering enough to remember why I need to do this but whoa, I'm scared to death.

They are putting my husband in his first wheelchair tomorrow and I have andSSI hearing for my disability next month ....so how do I tell the judge that not only am I messed up big time I already have a full time job caring for him. They used to pay me to take care of other individuals why can't they pay ME to take care of him? I feel so old . I had to call mobile services for all of my rides this winter ...really feeling amoung the disable and thrown away. I was so hoping you would get back to talk to ....:)XXXX

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Hi Crazylady! I missed you too. :)

The amatryptaline seems to be helping. getting sleep at night is also helping a great deal. When we got home, I booted up hubby's computer but it..didnt. My fingers are really stiff too, so I am hunting and pecking on an ancient laptop that is super slow...so forgive my misyakes.

For the next 5-7 days Iam going nowhere because we are getting hit with a huge nasty winter storm. below freezing all week, base temp of -7 tuesday night with windchills even lower. ugh!!! My house is COLD. lol

I promise I will get back to mt quirky perky self soon.

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Amatryptaline is an awesome thing when you are having those sleep issues. I took it for several years after our MVA in 1993 and then I didn't feel like I needed it anymore so I was able to dose down and get off. I wish I still had it most days.

It's is stupendously cold here in the state of Wash, we are about fifty miles from the famous Coeur D' Alene resort and it is about ten degrees this a.m. The weather alert is going on the TV and it says prepare for gusting winds and a chill factor of -28. I am praying fervently that our pump house does not freeze up :)

I cannot handle those temps either and I am also stuck here until it warms up. I have to take the mobile bus downtown next week for my infusion and I will freeze if it stays like this. I hate not being able to drive any more and my husband can't be out in the extreme cold because he is a heart patient. ARRRRRGGGG....

Bundle up! It doesn't look like any relief from this is coming soon. My niece in Alaska says it is

well below zero at her house in Anchorage and it has not warmed up in two weeks.

My son has my good Dell and the old gateway is toasted out in the networking department so I am using an ancient creature with a monitor bigger than my first house! LOL

Some days she loads other days...not so much..... reminds me of me!

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Glad to see you are finding your way around VAT. Sorry to here you are in the boat with us, not a very fun ride but the people are friendly!!! It is not always a sinking ship.... we flounder most days, but we somehow manage to be each others lifeboats. Sorry couldn't resist the boat analogies. I Hope this finds you not suffering too terribly from the cold . I loved your jeans story :)