A few things...

This is the second day after infusion number four of Remicaide. This is my second "therapeutic dose" and I'm pretty sure I need more than I'm getting because I don't make it to the next dose so far each dose still moving. The last dose didn't seem to last more than a few weeks. Yesterday I was pretty sick and in bed, today I went to lunch with my mom and son and to the store. I bought myself two new nightgowns and I am unbelievably excited. I am so tired of wearing the same two all days most days that I can't wait to pull one from the dryer. This was the first time I used my Rolly (rollator) in the store and it really helped me a lot. My son used the cart and anytime we had decisions to make I could sit down. Still today has been a huge improvement because I have been in unbearable pain for days and finally I got the infusion and it seems like things are chilling out. I woke up and my hands were open, I've sat up for several hours against pillows in the bed so things are looking up.

Rolly and I at the airport recently.

In my life I have a few friends that have people in their lives that have been recently diagnosed with RA and I always offer to be a resource to those people. I went through a lot of hell to get to the hell I'm in now and I would very much like to help people that are just starting out avoid some things that were not told to me so in no particular order I'm going to list off things that come to mind for the new folks. First of all, I'm in the age group that most people get diagnosed 30-50 and I'm a woman. That does not mean a 14 year old boy can't develop RA ok? I'm just in the prime zone so I know a lot of people in the age group.

First of all get your Vit D level checked. Most Americans are low because we are not in the sun foraging for food and other things. If you are low on D a LOT of things can go wrong, so get it checked. Mine is very low and every few weeks I take 50,000 IU's and then other days I take 500-1000.

Methotrexate (MTX) is terrifying I know, but it is the Gold Standard for control of RA. I know you just read that it is chemo, it is, but it's a lower dose than cancer patients. Still, it isn't anything to be casual about so since it can damage your liver that means DON'T DRINK, and make sure to get your liver levels checked on a regular basis. Also, my Dr. says that MTX SubQ (injections) are easier on your liver and that is what I do. I drink a lot of water and when it's infusion or injection time I make sure to push it even harder. If you are getting infusions it's easier for the nurse to get a vein and it helps your liver in both cases.


MTX is a DMARD, a disease-modifying drug. It is probably the first thing your Dr. will put you on.  It is used to slow or stop the progression of the disease. Usually you won't feel so hot after an injection or the pills so take it right before bed on the day before you are off work or have a light day ahead. You have to take it the same day every week or you can get sick if you change them up so if you miss a dose I would call the Dr.

The injections are hard for me to do. From now on I am going to have someone draw the injection up for me before everyone leaves on the night I take mine. Last week I bent five needles, took one unit short, and ended up with a broken bent needle in my belly. The reason is my Dr changed me to another syringe. I have been using the BD syringes and I hated them because they are dull, the thing about them though is you can unscrew the needle from the syringe and put a fresh one on if you have to pull your complete dose from two separate bottles, got me? Last week my choices were to go one unit short, get a shot from a needle that had punctured two bottles, or get poked by two different needles to get the full dose. This is all very hard to do when your hands don't work.

Folic acid, you need to take it every day when you are on MTX or you will feel sick.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0010757/

Keep moving. You have to keep getting up and moving. If I am awake I try to get up about every 20 minutes and walk up the stairs or down the hall at least. Sometimes I take my dog for a walk four or five houses down. This is very sad to me as just two years ago we were topping out at 6-7 miles a day, now both of us are getting our butts kicked by arthritis. He takes Rimadyl. Please, if your dog has arthritis, get him some medicine and not just supplements, that is totally uncool.(Cats get steroid shots) When Walter got his first pill I left and came back two hours later and I hadn't seen his tail wag so fast in a long time and I realized how much he must have been hurting and that makes me sad. If you buy the regular generic and not the name brand chew-able it is less than half price. Walter has 1/4 of a peanut butter sandwich with the pill inside and he is one happy dog. Sorry about the dog thing, but it had to be said.

Hot showers help a lot, hot baths with Epsom salt do too. Stretching, yoga, swimming, all super good for you. I read of people who get on meds and feel better and start running again and claim victory. Personally, I think that's probably not a good thing to do, pounding your joints when you have a disease that affects your joints.

People are always going to be telling you all kinds of crazy things, all kinds of diets, avoid gluten they say, no nightshades someone proclaims! I did an elimination diet, I did all kinds of diets, I've found that no processed foods, very little meat, especially red meat, lots of fruits and veggies raw or lightly cooked is really best. Avoid low-fat, "diet food", artificial sweeteners, GMO's, corporate food, stick with the Farmer's Market and avoid the drive-thru ok? Any of that made up crap that's been extruded, processed, fake sweeteners, my friend once said "think chemical shit-storm" and she is right. Fresh food is best! No high-fructose corn syrup, and look! It's in everything! I have an app called Ippit I got for free for my Iphone, I don't know if it's android too but I scan the SKU number on the package (try not to buy much that comes in a package) and it tells me if I can have it based on the setting I provided, it's pretty cool and helps a lot.

RA is not just a bone disease, it's an inflammatory disease and it isn't just your joints that get inflamed. The meds are hard on your liver and kidneys, and the disease is hard on your heart and lungs among other things. You need to take a lot of supplements to help avoid damage, one of the most important is fish oil. So, how to buy fish oil. I started out with the giant pills from a big box store and they freaked me out, they are really hard to swallow and you need three a day. Since this is fish oil and we don't take care of the planet the fish have a bio-accumulation of methyl-mercury and that is super bad for you. So, you need to get triple filtered, third-party tested oil. I have moved all the way to oil that is just liquid and it tastes like orange and is so thin it's almost like water. No more fish burps for me. Also, please buy a brand that has a sustainable certification.

Here is a complete list of vitamins from the Arthritis Foundation. They also have a list of herbs that are good, some I have already mentioned above. You probably can't afford to take them all so I would take the list to your "Rhumey" and prioritize them. I have a certain list that I feel are most important but I'm not a Dr.so I'm not listing them.

 http://www.arthritis.org/living-with-arthritis/treatments/natural/vitamins-minerals/guide/

When you go to the Dr. I would have a list of questions, you are going to have to prioritize them because the Dr. will probably not have time to address them all. I would also start a diary of your days, your pain level, where you hurt, how long it takes you to loosen up every morning, that sort of thing. Always go prepared, always get your blood work done like you are told so the Dr. has the information for your appt. They can't do anything if they don't know what's going on.

Prednisone will probably make you fat. It is an evil siren, it will chill out a flare but there is ALWAYS a price to pay. Don't take it if you don't have to. I remember as a teenager I was on it for two weeks and the Dr. didn't have me taper off of it. A day or so after I stopped it I was trying to brush my hair but it was causing me excruciating pain, in another few days I was black and blue from playing softball. I was incredibly angry with the Dr. because I had to go back to find out what was wrong with me, it literally made me sick to go off of it with no taper. It's just not a drug to be casual about.

http://www.peoplespharmacy.com/2012/04/08/prednisone-side-effects-deal-with-the-devil/

You can have RA and be seronegative.

You will probably suffer from two things: exhaustion and brain fog. Both are very real and your friends and family are going to have to learn to accept it and adapt. You might just not be able to do what you did before, my life has changed dramatically. My Dr. describes my disease as aggressive and severe, yours hopefully is different.

Here's me, on a real bad day.

and the old me, or me, who I really am.

I am working on being somewhere in the middle, or back to me. That is the goal. In any case that is what I have to give for today, I'll try to think of more things to learn the easy way and skip the hard road! Gentle hugs!