My recent RA diagnoses and looking for advice

Hi, My Name is Pat and I am brand new to this forum. I've been reading through the RA threads and see my story in so many of them. So many people going through the same thing, having the same fears, questions, advice, etc. I decided to join. I was sent to the University of Michigan recently and they finally found out what is wrong with me. I do have Rheumatoid Arthritis and possible Sojgrens. I get tested for that next month.

So here's my story. Approximately 12 years later I finally get answers.

I started having traveling knuckle pain here and there about 12 years ago but nothing showed up on the Xrays. No blood test was ever taken. Time went on and I started having more pain in knuckles and hands. I had a slip on a snow hill in 1998 that left me going to a pain clinic for steriod injections (no sedation!) and a 2 month addiction to Oxycontin. That Dr. had me on 120mg a day. I found out later exactly what that stuff was and they give cancer patients 80mg. What a horrible horrible nightmare that was. To make a long story short, I left that nutcase Dr. and went through 2 weeks of heavy withdrawls from the Oxy. I thought I was gonna die. Never again! Then, my shoulder started bothering me really bad and I ended up having Arthroscopic surgery in my right shoulder to remove Arthritis. More tme went on again, and the pain in my hands became so bad sometimes I could barely move them. My back was really starting to bother again me so I referred to a different Dr. and a different pain clinic. This Dr. is wonderful! He listens, and he cares!
I've been seeing him for going on 7 years. I get depo-medrol injections every 12 weeks in my low spine and I take 3 to 3 1/2 Norco a day for pain management. The injections help tremendously for approx 1 month. (They used to last a good 2 months) The following 2 months, I'm basically miserable. The Norco only takes the edge off. But to my request, I refuse to take anything any stronger. Oxy was out of the question. I will not go down that road again.

4 years ago, My pain clinic Dr. had a blood test done for RA and said my numbers were off the charts and referred me to a RA Dr. for testing. He is supposed to be the best in my city. A blood test was taken and again my numbers were very high, but he did not diagnose me with RA because I didn't show any physical signs of RA. IE; swelling, redness, etc. So 2 years went by and in those 2 years, my feet, knees, legs, and hips started to just kill me in the remaining 2 months that the injection was worn off. My walking stride changes to a clomp. I feel like I am walking on broken feet and knees. My hands, wrists, shoulders, hips, knees, feet, ankles, and toes hurt so bad. Some joints worse than others, but the feet and ankles came on like a tornado and terribly painful.
I went back to this high rated RA Dr. and again took another blood test. Again, very high numbers but he did not diagnose me because of the physical symptoms. He said I could try Plaquenal and Prednisone. He was quite rude at both visits. So, I picked up the meds and went home and read about them on the internet. I did not take them because I didn't feel I should take semi dangerous drugs for something he could not diagnose. Maybe I should have, but I didn't. I was scared to death of the side effects, and without a definite diagnoses, I didn't want to be a guinea pig.

So another year goes by and I am frustrated, in pain, and depressed. My pain clinic Dr. referred me to the University of Michigan. Last week I seen a wonderful RA Dr. and he did all the blood tests, (They took 11 vials!) plus a full physical evaluation, listened to my history and my symptoms for over an hour. He called me yesterday and told me there was no question. I have RA. and I am being tested next month for Sojgrens. Finally, I know whats wrong with me. I certainly didn't want it to be this, but at least I know what it is now and that I'm not crazy and it's not all in my head.

I'm scared, I'm scared of the medication (Methotrexate 2.5mg 3 tablets once week for the first 2 weeks, then increase to 6 tablets once a week) along with Folic Acid, and the Metho's side effects. I picked them up this morning but haven't taken them yet. I'm just staring at the bottle. I know I have to take them, I hurt so badly. I just don't want to feel any worse than I do now. I am not a fan of side effects. Can or does anyone else take this stuff that could give me a little encouragement. Is it really as bad as the fact sheet says it is?
I just hope that the RA hasn't done any permanent damage. I'm only 53. I'm not done living.

I had to quit working in 2006. I can't sit or stand for long periods, and walking over 1/2 block is pretty much out of the question. Just walking through the grocery store my legs and feet just ache and my back just burns. I don't know if I qualify for any state disability help or not but we've already lost one house. I don't want to lose another. Any advice on this? This is all new to me.

Well that's my story. Thank you for taking the time to read it, and any advice, comments, or support will be greatly appreciated.

OliveEyes

Methotrexate made it possible for me to stay employed at a semi physical job. Drinking lots of water is important as is taking folic acid.

Hi,
Can I ask who's the doctor you like at UofM? It sounds like you have a good doc there, and I'm thinking that may be my next step.
Glad that you found some answers!

Yes, the meds are scary, but they are needed if we are going to live productive lives and work. I was afraid of the MTX, it sounded so toxic! I admit it through me for a loop in the beginning, but after that it helped me so much and kept my head above water.  Another drug that works wonders is Plaquenil, it can really turn things around, you may want to ask your doctor about this medication. Currently, I take MTX and Enbrel and occasionally I take something for break through pain, but these medications allow me to get out of bed in the mornings, and also manage to get to work, otherwise I don't know what I would do without them.  I am so sorry to hear you have lost your house, when you can't work, it can be a true financial strain. I hope you can find the right cocktail of medications to get you back on track to where you feel better.

Good luck to you!

Wow, sure sounds like you've really been through a lot. It's such a shame when illness can cause people to lose their homes amidst all the pain and suffering.... Have you spoken to a disability attorney? Sorry I am not a ton of help. I've only had this about 1.5 years and my case (while it doesn't feel all that mild) is actually pretty mild compared to some of the stories I hear about RA. Good luck with the mtx. I hope it works for you. I have an appt next month and wonder if the doc will put me on it. My three month remission, which was heaven and unexpected, ended this week.

I have been taking MTX and sulfasalazine for RA and when I first started the MTX I was on 6 pills once a week and 1 Folic acid per day...I was very tired a day or two after I took the weekly dosage so my RA dropped my dose to 4 MTX once a week and has me taking 3 folic acid pills each day and it has helped the fatigue a lot. The other side effect I have is very dry mouth at night so I keep a bottle of water by my bed and guzzle it all night! I haven't had any other issues so far.

I agree, the meds are scary, but so is the alternative. Your chance of serious side-effects with the biologics is a lot less than your chances of developing serious problems from the disease. RA doesn't just affect the joints, its a systemeic illness which can manifest in a lot of problems.