First Year with RA and Unsure of the Future

By Josephine Tuesday, May 20, 2008

- A
- A
- A

Hi All, I am 52 years old and have seronegative RA. A year ago I began experiencing fatigue and morning stiffness in my hips and legs. I went to my PCP and found out that I was anemic and my sed rate was 60. My doctor diagnosed me with polymyalgia rheumatica and put me on 40 mg of prednisone daily. I was very uncomfortable taking this large a dose but he explained that it was better to treat inflammation aggresively and then back off. I had a lot of SE and we dropped the dose to 20 mg but then had to go back up to 30 mg. Eight weeks later I had my first rheumatology visit. The rheumy said that he thought that I was too young to have PMR and that this was more likely early RA. He started me on Methotrexate and we started weaning the prednisone. I've never been able to completely get off the prednsione, only reduce to under 10 mg but still experienced pain and lots of fatigue. Then I began to have pain in all my joints and so much fatigue that I could hardly function. We added Enbrel one month ago and my energy level is much better but I still have pain, especially in my hands and wrists. I've been reading all I can about RA. I am a nurse and so I have been reading in nursing and medical journals as well as sites like this. I understand that the course of RA is highly variable, and that outcomes differ from person to person. Yet so many of the personal stories of the struggle with RA while courageous, are accounts of pain, fatigue and loss. My ability to work has been extremly limited this past year. I've always been active and taken good care of my health. I just completed three years of training as a movement educator, and now movement is so painful. I fear losing the things in life that have given me so much joy. Can anyone share stories of people doing well with RA, or thoughts to help me cope with this unexpected turn that my life has taken? My hope factor needs a boost.

Please Urge your Senator to vote YES on the Arthritis Prevention Control and Cure Act

Comments (22) | Add comment

brenda

5/20/08 1:11pm

hi my name is brenda im 61 and have ra for over20yrs i finaly got over an infection that i had for over a year and in half due to a rutuxin infusion i finaly get to see my rheumy for something new. everybody thhinks they are alone they are not so please feel free to email this goes out to anyone who would lile to talk. brenda

Josephine

5/23/08 4:58pm

Thanks Brenda, Good luck with your visit to your rheumy.

Linda

9/14/09 2:11pm

Thank you so much for your comments. I have been diagnosed 2 years ago. I have not responded to any medications. From over the counter to Humira. I am in so much pain, and I am on my 5th rheumatologist. I don't know what to do next. I do feel I don't know what to do. Have you tried anything that brought relief?

Hollybgroovin, Health Guide

5/21/08 1:08am

Josephine my heart goes out to you as I will never forget my first year after my diagnosis. I will give you the short version of my story and hope I can give you hope. My name is Holly and I am 28 years old. I have had RA for 14 years, but only got my diagnosis 3 years ago after many, many years of testing for multiple sclerosis. I have 2 boys and have been married to my high school sweetheart for 10 years. I use a walker and my can to get around, and am waiting on my insurance to approve my hip and shoulder replacements. My husband also works out of state in the oil field so we can afford my medications. Despite the many obstacles RA has thrown in my face I still have hope. I see a pain specialist who has helped me dramatically. Life is hard for me, raising my kids by myself, but despite the severe damage I have suffered from RA I am living well. The first year is so hard, but so are the second and third...What helps me is knowing that I am not alone in this battle. We all have experienced the same emotional damage as well as physical damage. We are all here to support you whenever you need it. Just know that RA can't take everything away from you. I was going to school for court reporting when I received my diagnosis and was told by my rheumatologist that my dream of being a court reporter could not happen because of the severe damage in my hands. So I had to adjust my dreams and slow down a little bit. Dont let RA take your dreams. I have hope for the future, for medication, for relief. Don't get me wrong, I have my share of couch days, the days that I want to hide under the covers and wish RA away. But I also have a family that loves me, and for that I have hope for the future. We are all here for you! Good luck and best wishes!

Josephine

5/23/08 5:10pm

Hi Holly, Thanks for your encouragement. I have been reading some of your posts and I really enjoy them. I very much admire your positive attitude and the inner strength you have to care for your children and "hold down the fort" while your husband is working out of state. Wishing you the very best and good luck with your joint replacements once all the insurance red tape is out of the way.

Linda

9/14/09 2:15pm

Thanks for that uplifting message. Somtimes it can feel like it is never going to br normal again. I'm 50 diagnosed just a little under two years. It has affected 28 joints, and I cannot find a medication I have responded to. I have tried 8 different drugs, and I don't return until late Oct. I have lost my job, and really don't enjoy much of my life. After reading your message, I feel hopeful that they will find a drug that works.

Bonnie

5/21/08 6:27am

Hi !!! I to was a Rn & shared same results from the meds that you have been subject too. First was meds. that had acetafene. It worked for awhile, but couldn't be on for any extended period of time because of there dangers. Then I was put on Enbrel. Enbrel worked for abt. 4 yrs. then my body chemistry said "that's it." I no longer got the releif that I was enjoying. I was also on predisone 40mg. The company that made the Enbrel had to stop some of the people from receiving it. There were more people needing it than they could produce. So I was dropped & put on predisone 40 mg. for almost a yr. Well you know as much as I do the damage pred. can cause over a long period of time. I ended up with 3 cracked vertebrae & 3 cracked ribs. Iam now on injection of methotrexate & seems to be working. Hope the best for you. Bonnie

Josephine

5/23/08 5:19pm

Hi Bonnie, Thanks for your comment. I'm sorry to hear about your complications from prednisone. Are you on any counter measures for osteoporosis? Can you tell me a little bit more about your experience with Enbrel? Did you just gradually stop responding or was it sudden? I did not realize that there was a shortage of Enbrel, only that it is very, very expensive and that that is a very sad and unfair barrier for the many people without insurance and even those with inadequate insurance coverage. Are there still periodic shortages in supply or was that a one time event? I hope the methotrexate continues to work well for you.

6/ 2/08 9:27pm

To Josephine and all who commented: I really appreciate all your comments. I am a 57 yr old Type I diabetic with all the metabolic siblings: hi blood pressure and hi cholesterol. I was just diagnosed with both PMR and RA within months of a peripheral neuropathy diagnosis. I cannot take any steroidal med as it will interfere with my insulins. I am now starting Avatar. I feel like I am 100 yrs old sometimes.

I also know I am still blessed, and it could be worse. Your positive comments help a lot, and it also helps to know that there are people who understand. I can identify with Josephine and her questions.

I have to start looking for a new job as I just lost mine, and also my health insurance; am trying not to get freaked out about any of this.

Does anyone know what kind of jobs I should look for, or any agency that hires semi-disabled people? I am also partially deaf in both ears.

This is for real, but it doesn't sound like it, even to me!

Josephine

9/ 6/08 12:34pm

BS, Wow, it sure sounds like you are dealing with a lot. Yes, I beleive there is an agency that helps people with disabilities find work, but I do not know the name. Perhaps you could contact the social security disability office - I bet that they would know. Or maybe google "help finding work for people with disabilities" Its worth a shot. Best wishes to you.

Josephine

6/ 2/08 9:28pm

I have to start looking for a new job as I just lost mine, and also my health insurance; am trying not to get freaked out about any of this.

Does anyone know what kind of jobs I should look for, or any agency that hires semi-disabled people? I am also partially deaf in both ears.

This is for real, but it doesn't sound like it, even to me!

michelle

6/13/08 9:34am

Hi Josephine,

I just read your post. I am also a registered nurse and have just been diagnosed recently. I have not been feeling well for sometime with joint pain and feeling very tired. I was saddened to hear of my diagnosis but relieved to finally know what I have so I can deal with it. I have had my share of crying jags and grieving over the potential loss of some of the things I enjoy doing. I don't have any answers for you but just wanted to share that I understand what you are going through and that it is normal to feel down. I work with a couple of other nurses that also have RA and they told me that they went through a very rough period with difficulty just turning over in bed but are now in remission. Their stories have given me hope that it won't always be like this and I wish the same for you.

Michelle

Josephine

9/ 6/08 12:42pm

Thanks Michelle, I wish there was a group for nurses with RA. Perhaps we should start one! Yes, talking with others definitely helps because we're all in this together but it can feel very lonely at times. The hardest days for me are when it seems like everyone else is out enjoying their lives while I stay at home because the pain and fatigue are too much for me to go about my normal day. Not that I know what "normal" is like anymore . Thank goodness for the internet! Thanks for your message.

Joesphine

Aimee Disser

6/17/08 1:19am

Hi,

I'm 39 and recently diagnosed with RA. I too, need better news. I am in shock and disbelief that this is happening to me. I am a single mom of a 13 year old son (who doesn't understand the sudden changes), I'm a teacher, I've always been active. Suddenly I'm in so much pain and so so tired. I'm scared to go on meds--scared of the side effects and the cancer risk. I'm on medrol but it only helps a little...I'm scared of losing my active lifestyle...sorry I'm no use to you but I had to write because I am comforted a little that I'm not alone. I need to keep searching this site for some good news.

Aimee

Josephine

9/ 6/08 12:50pm

Hi Aimee,

I'm sorry to hear that you have RA too. I know that the meds are scarey but IMO and experience the untreated (or insufficiently treated) RA is worse because of the pain, fatigue, and destruction of the tissues and joints. I am doing better now and I attribute that to the meds and i think also to diet changes. I ate a pretty healthy diet before my diagnosis, but this summer I changed to a vegan diet and I really think that it is helping me. I highly recommend "Eat to Live" by Dr. Joel Furman. It was recommended to me by another nurse who also has RA and found it helpful. Hang in there!

Josephine

otis

6/28/08 8:35pm

I am a 58 year old female, newly dx RA , and trying to cope with this new dx. I am a breast cancer survivor (10 years ago) and this dx is far worse than cancer. I too am so scared of what is to come. My rheum started me on Plaquenil one week ago. Says it is the least toxic which I appreciate, but want to be as aggressive as possible as well while still time to prevent damage Do you experience any days when you feel normal?? Have you noticed any improvement in symptoms?? I too am a nurse and I never realized now devastating this disease is. Have seen a lot of patients with this dx and never appreciated how life altering this disease is. Am not a candidate for biologics due to hx of breast ca but think I am a candidate for B cell mediators. Feel like I can actually feel my joints deteriorating daily. Please let me know how you are doing now - am waiting for a "remission" hopefully. Listening to other patients seems like between flares there is hope of "normalcy". Thanks for any info Pat

Debbie

7/20/08 4:53am

Hi, my name is Debbie

I've tried many drugs for RA

I am currently on MabThera infusion

this is done in hospital in oncology,

as you probably know is the cancer treatment ward

It involves 2 infusions taken 2wks apart

It takes 3mths to kick in

But it has made a huge difference to me--more elert, more strength, more freedom in movement and not so tired allthe time!!!

what i say is :

THE BENEFITS OUT WAY THE SIDE EFFECTS LIST

AND THE LIST DOESN'T MEAN THAT YOU WILL SUFFER THEM

YOU MAY NOT GET ANY SIDE EFFECTS!!!

So go for it with gusto- because being positive helps as well

Josephine

9/ 6/08 1:15pm

Hi Pat, I had not checked this thread for awhile and was pleased to find so many comments. I am happy to report (no, make that estatic ) that I am doing better! I think that it is due to better control of the inflammation with Enbrel and changing to a vegen diet. I still have "off" days, and while I wouldn't say that I have had a "normal" day (whatever that is) I do have good mid-days and afternoons.

Mornings take a little while to get moving and by evening I am worn out, but inbetween feels pretty good. I have to pace myself and never do any activity for too long without changing positions or getting up to move around. I also don't stay on my feet for too long with out taking time to sit or lie down and do some yoga stretches. I am working some, but not as much as I'd like. I hope that that will come in time. I am very out-of-shape after months of inflammation and inactivity, so I'm hopeful that as I become fitter I will contiue to feel better.

I realize that Enbrel is not an option for you but I hope that the B cell mediators can help you. Yes, they are scarey drugs but to me rampant inflammation is scarier! Like you, even as a nurse I had no idea what a hugh impact RA has on one's life. I do still fear for the future, but I try not to dwell on that. When I find myself thinking gloomy thoughts I remind myself that no one knows what the future holds, and that it is more helpful to me in the present moment to think optimistically and to keep doing what I can to make today as good a day as it can possbily be, and that that may help make tomorrow better as well. And there is always hope for better meds and for even a cure! Wouldn't that be something!

Thank you so much for asking about me and how I've been fairing. Best wishes to you too, I will watch your your posts.

Josephine

bon410

8/14/08 10:18am

Josephine, Are you taking any pain medication along with the other meds? It seems we have to know to ask for anything. I took Vicodin for 15 years and also worked in a hospital. It took the edge off the pain so I could be more comfortable. After the 15 years I started feeling funny on the Vicodin and asked the doctor for something different. She prescribed Panlor. I like it a lot for the pain and it doesn't seem to have any side effects. Also found that taking pain meds with coffee helps them work faster.

Good luck and feel better soon.

Bon

Josephine

9/ 6/08 1:22pm

Thanks Bon for your inquiry. So far I have avoided anything stronger that Tylenol, not because I am stoic or anything like that, but because I have often felt pretty out of it and sick-to-my-stomach on anything stronger. If the pain gets to the point where I need something stronger, I'll begin searching for the right med that takes care of the pain without too many SE. You are so right, managing pain is essential to feeling better. Now only if there was an anti-fatigue pill...

Joesphine

JohnsonK

3/27/09 2:40pm

I have been suffering from fatigue and pain for about 2 years, I was mis-diagnoised about a year ago and was given Lyrica. This medication didn't help but I gained arounds 20lbs. Just 3 months ago I was diagnosed with RA, now on Hydroxychlor 2xday. I am scared of the risks, I also have other medical problems and am taking other medications. Last week it really hit me that I need to take care of myself if I want to retain somewhat or a normal lifestyle.

I used to be quite active and like most of everyone's comments I have read, I have had to adjust my life style. About 6 months ago (before I was diagnoised with RA) I was introduced to Young Living Essential Pure Oils , I do use them and receive the benefits from using them. They work wonders in using them to soak in the bath tub and by rubbing them on my joints that are hurting.

My husband tries to understand but it's hard, it hurts me when he asks me to do something and I say that am too tired or I hurt. My normal daily activiites, which is 40 min. drive to work at 6:45 a.m., work 8 - 9 hours and go back home. I love my job. By evening I am really wiped, he doesn't understand that, making supper is a major chore. My kids do not know that I have RA, I don't think they will understand. I get the feeling that people think I am lasy or just using excuses when I can't do or finish something. I have 2 wonderful grandchildren (3 1/2 & 1 month) when I have been with them I am so exhausted it takes me 3 -5 days not to feel like a truck ran over me. My husband gets so mad at me for getting so worn out but I am only doing just normal things with them.

I have decided to get someone to clean my house , I get so exhausted I have to rest often. I find that when I stick to a schedule I feel better, that rarely happens that I can stick to one. I have given up going to sporting events, it hurts to much to sit in one positon for that long.

I enjoyed reading all of your comments, it helps and I hope we can come together and keep giving eachother helpful points that will make our lives more comfortable. Take Care. Karen

Josephine

4/11/09 1:18pm

Hi Karen,

Thanks for your post. Are you being managed by a rheumatologist? I hope the hydroxychlor will give you more energy and better pain relief. If it doesn't do the trick there are other RA meds that can be added or changed to. I hear your concerns about being on other meds as well for additional health issues. Lots of meds can be used together safely, while others should not be used together at all. Make sure all your docs are aware of all your meds (including OTCs), and check with your pharmacist as well.

Its great that you are still working at a job you love. I would not have energy to do anything on top of an 8-9 hour job plus commute! Great idea to get help with your house. Keep communicating (and educating) your husband and kids. Its hard to understand how one feels with RA if they have not experienced it themselves. And then when they don't understand its hard on you! When one member of the family gets a chronic illness, it affects everyone in the family and there is always some bumpiness in the transition as everyone learns to adjust.

I hope you will once again feel well enough to go to those games. I get stiff with sitting and my hips really start to hurt so I hear where you are coming from. Perhaps you could take a memory foam cushion and sit on the end of the bleachers so that you can stand up and move around a little from time to time. And if you haven't already, talk to your doc about pain management so that you can do the things you enjoy.

Take care!

Josephine

First Year with RA and Unsure of the Future

Ask a Question