Hi Everyone,

I have posted many times on the FM/CFS Board. I've been diagnosed with RA within the last 6 months. My hands and feet were swelling for nine months before my Rheumatologist gave me a shot of steriods. That shot made my hands/feet stop swelling, so she clinically diagnosed me with RA. My blood has shown a slightly elevated RF and ANA in the past too.

I started taking 5 mgs of Prednisone everyday and 6 pills of MTX four months ago. (Switched to shot b/c Rheumy wanted to make sure I was matabolizing properly - just took 2nd shot yesterday.) My hands and feet are still swelling as bad or maybe worse. The severe fatigue and pain is almost too much to handle.

I have read a lot of things on the internet about Enbrel and it seems almost like a miracle drug. I see mixed responses throughout this site though. I would love to hear from some of you about what you are taking to control your RA. I will type out some questions so your responses can be quick and easy. I'm starting to lose hope of feeling better.... All your answers are greatly appreciated. (Not being able to excercise has made the FM flare, the steriods are making my blood sugars impossible to control and the pain meds are making me constipated.... The circle of madness!)

1. How long did it take for the MTX to help you?
2. Did you have to adjust the amount you were taking?
3. Were you able to come off Prednisone? If not, did you have to keep taking more to get the same effect?
4. Did you add Enbrel/Humira to the MTX? If so, how long did that take to get RA under control?
5. Did the MTX/Enbrel take away the fatigue, swelling and pain?
6. If your RA is under control, are you able to excercise again?

I have fought through Endometreosis (hysterectomy and both ovaries removed), Menopause, Type 1 Diabetes, Pelvic Congestion and reflux in both legs, gall bladder removal, CFS and FM and worked through it all... I've recently gone on Short-term disability in the hopes of coming back stronger once this RA is under control. Getting answers from people who actually have this disease is the most important for me... No one understands fully unless they have gone through it.

Thank you all very much for taking the time to respond.

Wendysj

My RA is relatively mild, on the scale of things. However, I did discover through dietary challenge that I am nightshade sensitive. Removing that food group was very helpful in reducing my pain, redness, & swelling by over 50%. I did a lengthy baseline before embarking on the dietary challenge.

As a humorous aside, after one week on nightshade-free diet, I had a mini-freak out wondering whether I was developing bone cancer ... however the "tumor" I'd noticed turned out to be a wrist bone that I hadn't seen for several yrs. due to generalized swelling that was starting to subside with dietary changes.

There are only a few research studies about the role of dietary intolerance in RA. Those studies find that 20 - 25% of RA sufferers seem to have contributing dietary factors, which vary from individual to individual. So it can be tricky to figure out if one has contributing dietary factors, and if so, what those might be. However, I would say, worth the effort.

I also have an FM diagnosis. Because I've not done well w/Rheumie approaches in the past, I struck out on my own & tried LDN. My arthritis, FM, and energy have been much improved since starting LDN in July/08. My gait is so much faster & much more normal, even neighbors & acquaintances have commented on the improvement. I haven't used my walker in a long, long time & rarely need to use my cane anymore -- which before LDN was more often than not a necessity most days.

Sorry that I'm the one to answer your med-based questions. I realize you are pursuing conventional medication, however, should things ever disappoint in that dept., remember there may be other alternatives to consider. I wish you well on your quest toward improved health.

[This Message was Edited on 09/28/2009]

The Road Back Foundation board, the majority of people over there deal with RA. And many do take MSM along with their therapy of choice. I deal with OA and FM and do take MSM powder (higher doses) and it does give me some relief. My knees work better since on the MSM since last Dec 08.

Hi SnoozQ,

Thank you for your response... I'm actually looking for anything that might help, so your information is valuable! My Rheumy also mentioned the dietary approach. She told me to cut whatever I'm testing out of my diet for a week and then bing on it for three days... She said if it caused my inflammation, I would see a dramatic increase during the bing.

I'm not going to start that until I see my Endocrinologist in Oct. I think I'll need him to help me control my sugars even more when I try cutting things out of my diet.

That's awesome that you are walking! The excercise is so important mentally and physically. The sense of accomplishment is wonderful. That is pretty funny about your wrist bone! I actually just called my mom this morning and told her my ankles were SO skinny when I woke up... I had forgotten what my wrists and ankles actually look like. (Unfortunately, the swelling set in within an hour of getting out of bed but I took pictures to look at when I need a pick-me-up.)

Thanks for your response... I hope you continue to feel better and walker a little longer each day!

wendysj

hi wendy! how old are you? I'm just curious :) I am 35 and was recently officially diagnosed with RA. I take mtx 6 pills a week . I am not on steroids anymore (thank goodness!)

Mtx has helped my fatigue a great deal. I still have fatigue sometimes though. good days and bad days. my feet hurt if i walk for long periods of time or if im on my feet for long periods of time. went to the local fair the other night and was on my feet for three hours and came home with sore throbbing feet :/

I would never consider antibiotics as the main line of treatment for this as they do not know if this is caused by infection, viral, environmental, etc.

I hope you can get off the steroids soon as they can cause bone loss in the long term and more problems down the road.

I do try to walk around the neighborhood here a few times a week...but sometimes there is no way i can do it. I'm researching some area pool programs as i feel best in water :) I work full time and am a single mom...i do try not to let this get me down but there are days when i need to rest more and so i do. I'm dreading winter though! maybe need to buy one of those snuggy things i saw on tv last year lol! :D

Hi Blueeyedgrl73!

I'm so happy that the MTX has worked for you! I thought it would be good days and bad days when I finally get this under control. I have other conditions that are the same way... I can handle that.

I'm 28 - almost 29. Antibiotics have not been apart of the discussion with my doctor. The Rheumy said I will probably add Enbrel to the MTX. I don't know if I want to continue to take the MTX because it hasn't helped at all AND it makes me feel TERRIBLE. I'm hoping the doc will agree and take me off of it.

I'm happy to hear MTX works for you and you're off Prednisone!!! I'm looking forward to the day I can stop taking those.

Those snuggy things are hilarious... The 30 Rock show made fun of them. I bet they are comfortable though!

Wendysj

I hope your doc has also talked to you about the need for folate when taking MTX. MTX blocks metabolism of all B vitamins, including folate.

Sometimes the nasty feeling on MTX, even with folate, is because some folks' bodies are sluggish at converting folic acid into the active form of folate, -- 5-MTHF or folacin.

Folacin is also available as a supp.

[This Message was Edited on 09/28/2009]

Hi SnooZQ!

Yes, my doctor has me taking 1 Folic Acid everyday... Is that the same thing? I hope so or I'm going to be mad there is something out there that can counter the awful "flu-like" stuff that comes with the MTX.

Thank you again for your input!
Wendysj

These 2 compounds are related. In a well-functioning human body, Folic Acid is metabolized into the more biologically active chemical cpd 5-MTHF, also known as Folacin. However there is a fairly common gene SNP that hampers the enzyme which converts Folic Acid into 5-MTHF.

Whether folacin might be more helpful to you than Folic Acid, I can't say. It may be worth a try. Folacin/5-MTHF can be tough to find. A pharmacist might be helpful. A company called Metagenics makes several products with 5-MTHF.

If I found it necessary to take MTX, I'd supplement with other B-vits as well. Perhaps a "stress vitamin."

Best wishes.

[This Message was Edited on 09/29/2009]

I take either over the counter folic acid or prescription 1 mg. My daughter's friend who is only 12 has JRA (bless her heart) and she takes prescription folic acid but I forgot what it is called....it has helped her with her nausea. I only get dizzy from time to time if I move too fast and that is the only side effect I have from the mtx...I've been really lucky.

However, I dont know exactly how I am supposed to feel with RA. I'm sure there will always be pain but standing even for a little while kills my feet. I will have to discuss this with my rheumy when I go back. Have to have an MRI of my feet cause I possibly have an erosion Yikes! Oh well...take one thing at a time! glad to have feet...some people dont! gotta think positive! :D

Hope this winter will be kind to all of you :) Blue

Hi Blueeyedgrl73!

I take the prescription 1 mg. I have really bad side effects with the MTX anyway. I take caluim/vit D and multi-vit everyday too! I just don't think the MTX is going to work or me. I haven't seen any improvement with the swelling/pain/fatigue since I started it.

I don't know what to expect either. I hear about people going into remission and I really hope I will be able to do that too. For now, I just want to learn to manage it. First things first, right?

I'm sorry to hear about your daughter's friend... 12 years old. She must be a tough little girl.

I hate that your feet hurt so much. Hopefully they will be able to stop that pain. I had my gall bladder removed in June.... Once that pain was gone, it helped so much.

Good luck!
Jamie

i hope you have much better luck on the mtx injections or switching meds. do you take an antiinflammatory med? I take Lodine and it really helps also. you can call me Leslie :) Blue is fine too :)

Hi All:

Saw my Rhuemy yesterday. I had a list of questions and symptoms I hadn't yet braught to her attention... Before I could ask my first question, she told me "I don't have time for this." I asked her what she had time for and she said "Pick 3 symptoms". Tears were streaming down my face.

I told her the MTX and steriods weren't working. She said, "I misdiagnosed it, you don't have RA". She said to stop taking the medications. I asked her about Plaquenil... She said "I don't have a problem given you Plaquenil". She gave it to me and walked out of the room.

I can't believe it. I'm devastated. It took me years to find her... Now she seems to have given up. I'm furious but terrified. Starting over seems way too daunting.

Thanks for everyone who responded. I hope to have better news in the coming weeks.

Wishing you all a good week.
wendysj

[This Message was Edited on 10/14/2009]

Looking for another doctor may seem daunting, but do you really want a doctor that treats you that way???

She is too busy to diagnose you properly... too busy to answer your questions... too busy to think about the consequences of the medication she prescribes... too busy to treat you like a person... too busy to do her damn job???

You should report her and move on.... look for another doctor.

Dar

Hi Dbrown4428,

Thank you for "feeling my pain" or ANGER in this case. I took a couple of days to feel sorry for myself. During that time, I called 3 other Rheumys in Atlanta. I will be seeing one at the end of this month.

In the mean time, my mom's GP in "no where" GA used to be a pretty big deal in NC. I'm going to take my most recently lab results and go see him this weekend. Yes, he is taking time on Sunday to talk about everything with me. He may not be able to do anything but help me understand what those blood tests mean... That in itself is HUGE. Thank God there are still a few good docs out there.

Thanks for the support. I hope you are prepared for the cooler tempuratures. It's cold here in Atlanta today!

Wendysj