Remicade - its almost 6 months now.

I had to increase my prednisone to 15 mg. a day so I can function better and do things like work my job and do things around the house without crying out in pain. I do not feel that increasing my pain meds really helps much. The unfortunate thing about prednisone is it has so many side effects and can harm the body over time i.e. increased fractures, cataracts. But, I feel I can do more and get basic housework done.

My dilemma is the work thing. If I can't get my RA under control with a biologic, how can I work. This will put a major strain on my marriage and my own self esteem. Its quite a circular problem. I have to work to get insurance, I hurt when I work, I have to take more meds to compensate, I go to work, I hurt. It really is quite frustrating.

I will be seeing my rheumy in March, and I will see what will be next. But for now, I will be posting more pics and other more fun things. This is part of my new thought process for the new year. Here is a picture of the hippy hat I am knitting on circular needles very slowly. 

Its been a while, I know, but the Remicade has been a challenge.

Well, I've been on Remicade since August 20th and my last infusion was on December 31 (under the wire for insurance!). This last time my dose has been increased and my next infusion is every 6 weeks. It hasn't been very promising. I just dropped my prednisone from 10 mg a day back to 5 mg a day (my usual dose). And my wrists and fingers would be hurting more, if I hadn't scratched my eye last night at dinner and made a corneal abrasion which required stronger pain meds (for something small, corneal abrasions hurt like bl**p!).

I was really wanting this very expensive drug to work, however, I don't think that TNF inhibitors are for me. Perhaps another biologic? I'm concerned that it isn't working because, a small voice in my mind says (what if it isn't RA?). What else could this be tho'? Swollen knuckles, wrists, elbows, neck stiffness, knees, ankles, toes, hips, jaw. All joints are effected.

On  Facebook, some have said that NO biologic has worked for them. Sometimes they peter out. But one thing is for sure, you can't go back to one you've been on, because the body makes antibodies to those. UGLY.

My Dr. Rheumy put me on Celebrex, which helps somewhat. But he wanted me to increase my prednisone before giving me stronger pain meds. Makes sense, but again, why is this very expensive biologic NOT working? Prednisone is an ugly drug. It makes you ugly inside and out. On the inside it makes your bones brittle and your adrenal gland shrink, it damages your eyes, and increases your blood sugars. On the outside it makes you bruise easily and your skin more paper-y, it gives you a "moon" face and a hump back and a fat tummy. It makes you crazy and wish you could stop your mouth from running like a dummy saying dummy things. BUT it can bring down some ugly inflammation from RA. Its a beautiful-nightmarish drug. Like many that we take just to get along. (we with RA and other autoimmune diseases).

When I scratched my eye last night, I could hardly think it was tearing up so badly. I thought because eye cells are much like cells in the mouth, they turn over pretty quickly, I would feel better in the morning. Nope. My dear hubby, took me to the Urgent Care with sunglassess and a hanky to have a looky-loo. Sure enough, I had a corneal abrasion. They had given me numbing drops (thank the good lord!) and some orange UV dye to see what had happened.Yup, a scratch at "12 o-clock" above my iris. Stupid Maybelline! Stoopid girl pride!  So, I was given a stronger med, oxycodone for pain. it has been relieveing my eye pain that's for sure. And some of my RA pain. But I'm going off it soon. And back to the good ole tramadol. I know that as I get along with this disease, I have to be able to go somewhere with choices with pain meds if things (or when) get worse.

I see my Rheumy in March. I hope that the Remicade starts working, or I get some other choices. Cause its hard pretending.

Attempting to knit and crochet for charity!

I know, who do I think I am? Attempting to do a hand intensive charity gift such as knit and crocheted items. Well they are needed. It is going to be a cold winter here in the northwest! And its a way of keeping my hands moving and not being stiff. However, the key is to do a little at a time and stop before things start to hurt.

I learned from being a respiratory therapist that when I have to bag a person for any length of time to keep the elbows in to reduce fatigue (otherwise you look like a bat!). This is true for knitting and crocheting. I keep my elbows in or rest them on a pillow to help with pain and fatigue. I will post pics of my attempts at making hats and scarves for those chilly heads and cheeks out there.

You are welcome to post any links with charities that need knitters and crocheters with donations.

Merry Christmas!

My favorite blog is RA Warrior. Kelly Young is an amazing woman and has the courage through all of the tiredness that one has with not only having RA but a mother and wife to have a terrific blog that supports many, many people lost out there with RA. She is an angel.

She asked a question today about how did your RA start for you? RA for the Rheumatologists follows that RA is mostly about the hands and wrists. But, is it really? There is no research out there for potentially other ways of looking at how RA starts and possibly helping the General Practitioner or DO to set RA patients in the right direction (instead of floundering around for years). Here is what I wrote in my little answer block provided...


"I think it started at my feet, but its hard to say. I remember getting cramps in my toes and having them curl up. When I had my first kiddo, I had to have cortosone shots in my right wrist from overuse. Then my shoulder started hurting, my hip would lock up if I was reading on the couch and tried to stand up. I would be walking around like a limping cowboy! Then I needed shots in my heel and ankle (no one ever said arthritis, but the x-rays would say "arthritic changes.") Then cortosone shots in my shoulder.

I had my second baby and while I was preggers I would hide my hand under the pillow where it was warmest to ease the pain. And at the end of that pregnancy my pubis symphis would click (the joint in the center of the hips). When I had him I couldn't lean against the counter without horrible pain. Then at the end of my schooling two years later TMJ appeared with a vengenece, my jaw would get stiff and I would (still do) have to open it to crack it and make it feel better. My wrists started getting stiff and cracking. My knuckles would too. My knees, my ankles followed. My DO sent me to a nice but spacy rheumy who just didn't help at ALL. Frustration, then went on with my busy life!

My neck a year and a half ago would crack as I turned it and realized couldn't turn it all the way to the right anymore. I had a bad bought of asthma and got lots and lots of steroids and mentioned to my pulmonologist how much better my joints felt (I just noticed, did not realize how much they hurt!). He said that a lot of people feel that way after a lot of steriods, so I brushed it off.

Then last December every joint went to town. I thought I was crazy! My wrists hurt! My knuckles were red. I couldn't type for more than a few minutes. I couldn't put my elbows on the arm rests. I couldn't sit for more than a few minutes. I was a pain in the butt and my family thought I was nuts! My very caring DO sent me to a rheumy and he finally after more cortosone shots in the hand and a thorough check up he diagnosed me (seronegative). Vidication! (And not quite a year later after diagnosis) Whew!"

And the question is where does it start? Is it somewhere else? Because RA does not just affect the joints, it also affects the lungs, heart, eyes, cardiovascular system. I wonder if it also is a part of my GI, because I always had issues there? Or just having a kicked up immune system - see my asthma. RA is about an INCREASED immune system. An AutoImmune Disease that is not like HIV/AIDS which is about no/low immunity. Its about the body attacking itself, out of control body! Where and when does it start? Is it genetic? Is it spurned by a viral or bacterial infection? A surgery or injury to bone? So many questions.

In the end, we cannot be afraid to live our lives. We as people with any condition cannot be afraid to let go and try our best to do what we can with what we have. No matter what the ticking time bomb is. Fear is not an option. That is why I support RA Warriors around me. xxxooo

Remicade on different schedule.

Had another Remicade infusion 2 weeks sooner than originally scheduled. My Rheum said my test were "normal" although he has said that and things were elevated. Hmmm. Anyway, after night shift I went to the infusion center and got my Remicade. I was so tired that I could barely sleep when I got home at noon (a 8 am to noon infusion). I slept until 5pm. Not enough. Then worked Friday night. Its getting colder around here and my hands are swollen and hurt.Time to take some pain meds and get ready for work. Positive attitude! Positive attitude.

Weather is changing; it affects the joints!

As the weather has changed, and it gets colder or rainier, my joints have been more painful and stiffer. I was hoping that the Remicade would be kicking in. I have two weeks to wait until the next infusion. I had to start up the 5 mg of prednisone because my wrists felt like they were broken one night. Now, many of my joints despite the meds are hurting, my knuckles, my wrists, my shoulders, knees, ankles, toes. Yikes! Placed a call to my Dr's office and told the MA. Had to go in and have labs. Kinda pissed me off. Like I would be faking it? But that's OK. If my sed rate is high it only underlines the situation. But its a factor in RA. Just getting to the diagnosis of RA is an uphill battle. And the having to prove you're hurting. Not fun. I begin to doubt myself even! Well I hope that things are figured out tomorrow.

The wind has been very driven tonight! Saw some transformers blow over the ridge in town. The power went out in the grocery store as I was just finishing my transaction. Whew! I was about to get a lottery scratch ticket from the machine. Good thing I didn't! I would have lost a dollar to the windstorm!

Got my infusion EOB today. Ugly. Now I will turn it in to the Remistart program people for assistance. Thank God! they are able to help. I would be facing the bankruptcy path. Seriously. I'm a bit unhappy that its not working as well as I had hoped. We shall see. There are other biologics out there.