Rheumatoid Arthritis Community

Dear MyLife76,

Welcome! I can understand that your scared and upset, but you're in a good place to find support and information here.

First of all, let me give you a link to RAtv . You can learn not only about getting diagnosed and working with your doctor, but about diet and exercise. You can also meet real people like an exercise director, beauty queen, state representative, and even a black-belt winning grandmother—all dealing with RA and its challenges. Then check out this Life with RA Guide.

We have many wonderful members here, so if you have more questions or comments to share, please don't be shy!

Best wishes,


Byroney

The good news is that early treatment with drugs like MTX may greatly help with joint pain and prevent joint damage and deformity thereby helping you stay functioning. Unfortunately, drugs like methotrexate may take up to 8-10 weeks to become effective. Not everyone absorbs methotrexate so in my practice, I offer patients the option of taking the medication by injection given subcutaneously. This may improve absorption. Because prednisone has a number of potential side effects, I try to limit the dosage to the lowest dose that controls patients symptoms. Some may need higher doses than others to get the disease under control. Once medications such as methotrexate start working, I typically start tapering the prednisone.Fortunately we have many medications that we can use to help control this disease including TNF blockers although most Rheumatologists will consider methotrexate before prescribing a TNF inhibitors. I always recommend that patients who may have RA see a Rheumatologist for confirmation of their diagnosis and to establish a treatment plan. With proper treatment I am hopeful that you will get back to enjoying your activities very soon.

Hello. I was diagnosed in January 2010. I had the most acute onset, and within two months I was unable to bend my fingers. I was put on Methotrexate 20mg/week, and prednisone dosepaks for the worst pain and swelling. The pain was just terrible and what was worse almost was the fatigue. There were days until August 2010 that I would sleep 18 hours a day. I really just could not get up. I own my own business, so this was extremely problematic. I started Humira in March, and it did nothing. I moved to Enbrel in August and have gotten all of my energy back, although none of mobility. The pain is minimal at this point, though mornings are difficult. I can only type like this for short periods before my hands swell.

I am so sorry you are having such a hard time; I just wanted to share my experience so you know there is light at the end of that tunnel. I think removing negative stress has helped nearly as much as medicine.

Don't give up or give in to it.

Wishing you the very best.

Ok, I know exactly how you feel. First, make sure you take your meds with FOOD. I can tell you that for the first year it was bad and bothered my a lot but now in my second year it rarely bothers me, no more stomach, intestinal issues. I take mine (metho) on sundays in the morning so that I can deal with diarreah or stomach upset. My Dr. told me many folks take it at night.That wouldn't have worked for me.

Fatigue is not uncommon, and lessens as you start stopping the "progression" of the RA, meds take time, be patient. I also have Sjogrens so am on Plaquenil to halt that.. took about a year for me to start feeling better and less tired. This acutally gives me more stomach issues now than the metho does. You need to go talk with your RA doctor to see if there is something more that needs to be done, or a change in meds is need. I used to fall asleep at the table or as soon as I sat down as well. Also, if you have an EAP at work, go to it. Depression is not uncommon after the diagnose.

I too am a very active person. I have not stopped workingout, going for walks, running etc. Yoga *(the streching and gentler versions) water aerobics are also really good to get yourself back into activity. I will tell you that exersize helps STOP the pain, gives you energy AS LONG AS YOU DON"T OVER DO IT. remember your body and mind right now are REALLY stressed and unhappy. It has only been 2 years since my diaganose but the past year has been SO much better for me emotionally and physically.
Lastly, I recommend that your husband go the the RA doctor with you with HIS questions. He needs to understand what you are going through as well, it changes both your lifes and you have to both support each other as you learn how to deal with the RA. My husband, now that we know why I have been so tired for the last 7 years, has become my best support. He tells me often when I need to slow down, checks on me when I garden etc to make sure I don't overdue it so that I am now wiped out for the next 48 hours.
I am writing this quickly so please forgive the typos.

please try to stay positive, it will take time to start feeling better, get energy but it can happen once the right meds are found for you and they work. Do not stop taking anything until you speak with your RA dr. if you are not going to the specialist yet, get one. A primary can not address all the questions you need the answers to.

have heart and hope

I think the first year is the hardest. Nobody tells you that the medication is worse than the disease.
Here is what I have found to relieve the majority of symptoms and side effects:

• Stop eating all restaurant and fast foods. It's hard to do when you are the one expected to cook but you will feel the difference immediately.
• Stop eating foods with added MSG, Aspartame (nurtriSweet), or sucralose (Splenda). Do the research and you will see why. Purchase prepared foods that say organic or all natural, or that come the way nature made it.
  
• Avoid Bell peppers, tomatoes, and mushrooms, I feel the effects within an hour or so of eating them, plus they set off my IBS.
  
• Eat Activa or other pro-biotic yogurt daily or twice daily until your IBS is under control. (not the sugar free or low fat kind, they are filled with additives- see above)
  
• Start walking everyday regardless of the pain. Once you get moving you will feel better, you won't want to stop. Also helps with endorphin release.
  
• I use a breathing exercise presented by Ken Cohen that helps with depression, circulation and also helps me sleep better at night.
• See a sleep doctor, I was diagnosed with sleep apnea, before treatment I was falling asleep anywhere that I sat still for more than five minutes. (embarrassing in the doctors office). Now I sleep seven hours at night and feel rested in the morning and don't need naps.
  
• I found that half a xanex in the morning and one in the evening helped me feel better, eased some pain, and lets me greet my wife with a smile and cook dinner.
• Contact Binder & Binder and get your Social Security Insurance claim in the works. It can take up to 18 months so get started now. The extra money will help with the extra office visits, meds, and if you need some help with housework you will be able to hire someone once a week. This goes a long way with the spouse as well.

I was ready to give up about nine months ago. Slowly my medications are on track, the depression is gone, and the pain management is better. I practice the philosophy of Tao, not the religion, and it has helped me considerably. If nothing else it calms my anxiety, a side effect of RA and Fibro. I have been slowly, under the Doctor's direction, decreasing the anti-depressants and mood elevators. Tao may not be for you, but addressing the inner struggle has helped me avoid driving my wife away with self pity and frustration.

Best of luck to you, I hope this has helped.

Hi, Im glad you are seeking support from others who share in your frustrations. I am a 34 year old mother of 4 who was diagnosed at the age of 29. I too was initially started on methotrexate and prednisone. The fatigue that comes with RA and the meds is incredible. after multiple medication switches I have found that plaquenil, prednisone and humira are the best combo, I dont get quite as much relief as I would like but can manage the side effects of these meds ok. The prednisone is probably what is hurting your stomach. I suggest taking prilosec twice a day to counteract this. ( im also a nurse). that has helped me immensely. Hang in there, this disease is hard to live with, but it can be done. I dont think anyone who doesnt have to live with it can begin to understand it fully. I hope that your husband is supportive, sometimes an understanding shoulder to cry on is all you need to help get through your day.I also find the weather effects me very very much, I adjust my prednisone to counteract my flares, I find taking a bit more prednisone at the very beginning of a flare will minimize the duration and severity of them. You may want to discuss this with your doctor. Make sure you are taking a good calcium vitamin D supplement as the prednisone ravages bone density, Im already facing this issue. Finally if your body is telling you to sleep then sleep, on good days increase activity, its hard to learn to listen to what your body is telling you to do when you have a busy life, but I have found this is VERY important. I wish you the best of luck, hang in there, with some modifications you can live ( a slower. lol) but very full life!!!!

P.S. make sure you are comfortable with your rheumy, it is so important to find one who will listen to EVERYTHING you say, if he/she doesnt do that look for another one.

I too have been recently diagnosed with RA of the hands wrists and shoulders. Because I have coronary artery disease and Type 1 diabetes, I cannot take many medications.

I too am very concerned; as the only thing that I was told I could take was Mexthrotrexate for my RA. I chose to inject it because of supposedly less side affects and since I already inject insulin; what's the difference?
However, what I want to ask those out there; since this is an inflammatory disease, as is diabetes etc. has anyone gone to a differtent source such as an intergrative doctor or Eastern medicine doctor who to treats the cause-inflamation and why our bodies are so inflammed in the first place?

If so were you successful in NOT taking these nasty drugs?

There is a chinese doctor in my area who does acupunture and blood tests and I have heard he can tell what kinds of foods etc. that are hurting the body, along with acupunture to relieve the pain.
Am I wasting my time and RA is what it is?

I am supposed to start my injections next week and I don't even want to start unless it is the last course of action.
I hear so much advice, I am so confused as to what to do..so right now I feel good and am doing nothing.

Will the RA progress anyway; can it be stopped without killing my immune system?

HI
After a year of pain and thinking I had ostoes. and not being able to got to the Dr, I understand, I was just given the official word a couple of weeks ago, I have suffered from IBS & GERDS for over 10 years now. Supposedly the Predisone helps the IBS? I spoke to my GI DR and talked to her about it, there is a new anitbodolic that is available, If you have a GI DR I suggest going to see him/her to help keep you on track. The Greek yogurts are helpful or I really like yoplait or try activa, I have the RA in my hands , feet, ankles, knees and y neck was even bothering me, my arms I just hurt all over. I have been low energy, but am so starting to come back, I was very very active and it is killing me, I used to work out all the time, that even became hard. From what I have been reading watching what you eat may or may not help, you will need to figure out a plan to see if certain things bother you. Check to see if there are support groups in your area, In mine there are not, so it makes it difficult. Do google searches when you can read all the meds documents etc. If i find anything out I will come back her and post. the Presidone really helped me in easing the pain. Check out the Artrithis. org website too. You can write me anytime if you like You are not alone

Hi,
I've had similar problems with methotrexate. I remember one time that I was so exhausted that I couldn't make it from the chair to the bed and I literally slept on the floor. I was 37 and had been a triathlete and found myself unable to make it 60 feet.

I talked to my dr. and he reduced my dosage for about a month. That seemed to help me adjust.

Then I discovered that the side effects from some manufacturers of MTX are different. I discovered that when my prescription was filled with MTX from Roxane Labs that I didn't feel so bad. When it was filled by another pharmacy (Barr, I think) I would have stomach pain, more hair loss and a lot of fatigue. I tested that theory for a few months and I had consistent results. Now I ask my pharmacist to only order the Roxane Labs and I'm back to almost normal.

It will take time for the medicines to work - I am sure your Dr. told you this too. Fatigue is part of RA - I know how awful it is too. All I can recommend is to talk with your Dr. about your IBS and the effects the meds have on this condition.

You will have to rest more and learn how to "pace" yourself. When I am too active or push myself too hard, I have relapses and pay the consequences the next 2 days. So learn to take care of your body/rest/pace/conserve energy. It is a learning process - taking care of your RA body/joints.

I am frightened too, but I am learning to take care of my body/joints and work with my RA Dr. and my Family Physician to protect my joints.

It won't go away. With medicines, time, rest, and following RA Drs. orders, you can manage the disease.
Good luck!

Hello. I too was recently diagnosed. I was diagnosed 2 weeks before my college graduation last June, after my hands went from fine to unable to hold cups over a 4 month period. I was started on Methotrexate and Plaquenil. By the time I started the medication my feet had started giving my trouble too. Now both hands and feet are affected and it only seems to be getting worse. Unfortunately my medical benefits have changed twice in that time, so I haven't been able to start a consistent relationship with a Rheumy, but I see a new one at the beginning of March which I will hopefully stay with for a while! I too find myself consistently frustrated and confused. Over Christmas I found myself waking up not being able to move 2 of my fingers some mornings. When I eventually went to the Rhuemy he said it was my tendons causing the problems and gave me (unbelievably painful) injections into the tendons. Which really did help, but it caused more confusion as I had no idea that RA could cause tendon issues as well as joint. But the aching and consistent pain in my feet and hands, especially my thumbs, just keeps getting worse. I also have IBS, which has been getting worse lately. Its so hard to talk to anyone about it because they don't understand when I "magically" have good days then am exhausted and crippled the next. I just keep telling myself I will get it under control, and sometimes I even believe it

MyLife76, I'm sorry this isn't a helpful response. But I know it makes me feel better to know that I am not alone in the frustration and confusion of a new diagnosis of RA, and that the people here understand the feeling of being unable to get off the couch or hold my coffee cup. Hang in there!

I know exactly how you feel; I am 57 and also work full time. I was diagnosed three years ago - it started with my both of hands - agony every morning - finger tip to elbow. The drugs do work, keep taking them. Ask your GP about all painrelief you can take and take it - don't suffer in pain. Whan I had the pain under control and was sleeping better I was more like myself, it will take time but you will get there.

I JUST FOUND OUT I HAD RA ABOUT A WEEK AGO. ONE DR. SAID ONE THING, AND ANOTHER SAID SOMETHING ELSE. FINALLY AFTER I HAD THE BLOOD TEST, I FOUND OUT I HAD RA. I CAN'T BELIEVE THESE DR.'S TODAY. NOW I HAVE TO GO TO A RA SPECIALIST TO SEE WHAT HE/SHE WOULD SUGGEST WHAT I SHOULD DO. I HAVE RA IN MY HANDS, WRISTS, ARMS, AND THE WAY IAM FEELING I THINK I HAVE IT, OTHER PARTS OF MY BODY. I KNOW HOW YOU FEEL ABOUT WANTING TO SLEEP, BECAUSE YOUR IN PAIN, AND YOUR TIRED. IAM SORRY YOU HAVE TO WORK, AND BE IN THAT CONDITION. IAM RETIRED, AND IAM 63 YRS. OLD. I WAS KIND OF ACTIVE MY SELF, NOW IAM DOWN AND OUT. I FEEL THE SAME WAY YOU FEEL, I JUST WANT THIS TO GO AWAY. IAM HOPING YOU FEEL BETTER SOON. TAKE CARE YOUR SELF, THE BEST WAY YOU CAN. FROM A CARING PERON.

THE MORE I READ PEOPLE COMMENTS, I FEEL SO HURT, BECAUSE SO MANY FOLKS ARE SUFFERING. I HAVE THE SAME PROBLEM WITH MY HANDS, FINGERS, WRISTS, ARMS, AND WHAT EVER ELSE. I HAVE AN APPT. WITH THE RA SPECIALIST IN A FEW DAYS. I JUST FOUND OUT I HAVE RA. I HAVE THE SAME PROBLEM WITH MY HANDS THEY SWELL UP, BUT I WANTED TO LET YOU KNOW THANKS FOR SHARING YOUR COMMENTS. I HOPING THAT THE COMMENTS I HEAR FROM OTHER FOLKS WILL HELP ME TO BE STRONG, AND START TAKING CARE OF MYSELF ALITTLE BETTER. TAKE CARE OF YOURSELF.