Newly Diagnosed with RA

PamelaO Living With It 38 yeay old artist, wife, mother of 1 recently diagnosed with RA Hello All and thank you for taking the time to read my post. After a... Send Message Subscribe: PamelaO

Sunday, March 08, 2009
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Hello All! and thank you for taking the time to read my post. After a 3 1/2 year struggle and a second opinion, I have recently been diagnosed with RA. I am a 38 year old mother, wife, & artist. I am trying to cope every day with my diagnosis and what my future holds. Som...

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Welcome!
Ellen
Monday, March 09, 2009 at 10:50 AM

hi Pam,

I'm fairly new to RACentral too! But I was diagnosed about 5 years ago... still had damage to my right wrist.

     I hadn't heard of Kennelog so I looked it up - it appears to be for allergic reactions (topical), so maybe that was for your reaction to Plaquenil?   That would mean you are just on Prednisone for now, I guess! I'm just wondering if you are seeing a rheumatologist - most will try to get you on another drug, if the first one doesn't work out. Prednisone will reduce inflammation but can have some side effects (weight gain, osteoporosis) if it's used for a very long time... you will probably want to find another disease-modifying drug (DMARD) or a biologic at some point in the future, to avoid joint damage. A lot of people start with Methotrexate - I couldn't because my liver enzymes were high - so I ended up on Enbrel (shots I do myself) after giving Remicade a try (made me itch a lot).   Enbrel doesn't interfere with my schedule (don't have to go to the doctor for an IV as in Remicade) and it wears off in a couple of days if you start to come down with an infection (i.e., Humira lasts for about 2 weeks). So that relieved some of my fears. It did seem to irritate my throat or sinuses a little bit at first, but not much now. I've been on it for 4 years this month.

     It is scary to come down with something like this, definitely life-changing! I've adapted in stages. I didn't want the disease to take over my life .... but I had to start paying a lot of attention to taking care of myself , more than I really wanted to - but what's the choice? That's where it's at!

     I recently got a tape on Tai Chi from the Arthritis Foundation which I'm finding is very helpful for gentle exercise and concentration/relaxation. It's making a difference in my state of mind even in the short time I've had it (will have to write a Share-Post on that!)

     You seem to have a positive attitude and I wish you all the best!

Ellen

Northern NY, 57 years old, still working, married with one grown child. Enbrel, Celebrex, sometimes Tylenol, cyclobenzaprine (muscle spasms & insomnia), omeprazole (generic Prilosec), OsteoBiflex (I have some OA too), Guaifenesin (helps with congestion and fibromylagia too, to some extent), lots of B vitamins, brewer's yeast, fiber supplement, Ca/Mg/Zn mineral supplement.

PS - not a medical advisor!
Ellen
Monday, March 09, 2009 at 10:54 AM

Hi - I just want to say, I don't mean to be giving medical advise, just was passing on what I've heard and learned, but maybe said too much!   My doctor warned me at first, when I was unsure about taking anything, out of fear, that the disease can cause damage fast, particularly because I tested positive for anti-CCP antibodies (which means a more aggresive form of RA) and so I did go ahead with his suggestion.   The first drug didn't sit well with me, so I did my own research, talked to people, and went back to the dr. with my decision for Enbrel, which he accepted. We didn't get along so well at first, but now we understand each other!

Ellen

re: Welcome!
PamelaO
Monday, March 09, 2009 at 05:21 PM

Thanks for your response and sharing your story. My Kennolog was a steroid injection of 80mg at the time of my office visit for a quick boost. My Plaquinel rash is gone and as I am tapering down on my prednisone, I feel my joints starting to act up again. But I am going to begin Methotrexate soon with great anticipation of getting this monster under control. I refuse to read any side effects for the fear of subcontiously ultering my treatment, but I am aware of long term use of steroids. Its a shame because they work like magic! Thanks for the link, it has already come in handy! Take care , PamelaO

re: re: Welcome!
Ellen
Tuesday, March 10, 2009 at 09:10 AM

I have 2 sisters with Polymyalgia Rheumatica and they are both being helped by prednisone - i don't think there's any other treatment. One was able to taper down partway, the other not yet. It's not RA...

You sound like you are on top of things and making decisions right for you - that is great!

Ellen

re: re: re: Welcome!
PamelaO
Tuesday, March 10, 2009 at 07:52 PM

I am trying to keep ahead as much as I can. Don't get me wrong, I am still struggling with pain, swelling & stiffness but I know I have been through this before and eventually things will calm down again. This past summer & fall & was walking 2 miles a day. It is hard to believe at times.  I also know a bit about medicine being raised the daughter of a physician. It has definately come in handy. I hope both of your sisters get well soon. I have 3 younger sisters, and so far I am the lucky one.

Untitled Comment
Lene Andersen
Monday, March 09, 2009 at 03:02 PM

Getting the diagnosis can throw you for a loop - on one hand, it's a relief to finally have an answer, on the other hand your upper chronic disease. It gets easier, though - I've had this blasted thing for over 40 years and you learn to live around it. These days, with new treatments like the Biologics, the prognosis is very different from what it was 10 years ago. Doctors tend to treat early and aggressively, which, once your medication kicks in, should enable you to live a fairly normal life. You might want to check out our section for the newly diagnosed for more information about the various aspects of living with this thing.

But yes, no matter how supportive your family and friends are, on a very basic level, you're alone in this. It can get to feeling pretty lonely at times and that's where it helps to find other people who know exactly how you're feeling. It's a terrific idea to post SharePosts of your own - it's a great way to get in touch with our very supportive community of users.

Hang in there.

re: Untitled Comment
PamelaO
Monday, March 09, 2009 at 05:27 PM

Lene, It is nice to hear from someone who understands exactly what I am going through. Although, I wish it were on a happier note. I will continue to stay positive even on those not so positive days. I am looking foreward to having my treatment become an everyday part of me like getting up & going to work, not a grim reminder of what may or may not happen. Just take it one day at a time. Thanks Again & Good Luck to You with everything!!

Untitled Comment
Lene Andersen
Monday, March 09, 2009 at 03:03 PM

Oops... forgot the link to the area for newly diagnosed.

Keep strong!!
kiteclimbers
Thursday, March 12, 2009 at 01:36 PM

Never give in to RA always know that this is something that your body triggered to do, and the off switch I feel is in everyone of us to turn it off, we just need to find the right switch to set back the bad RA monster. RA should fear every strong mind that says some day I will find the switch and turn you off forever. Our bodys are designed to scab and heal over injury, heal broken bones, and with a little right timing and a lot of possitive thinking and yes some meds for a start, RA might be a thing in our past that will keep us running scard and doing things that we would have never done before. Just know the pain you are going through may be training your body to take pain to the outer limits of your human threshold and run a marathon as it has done for me now, when in 2003 I was using handicap restrooms and could not even kick a ball to my son at the park because my RA was soo bad.

re: Keep strong!!
PamelaO
Friday, March 13, 2009 at 07:15 AM

I heard this quote before, " What makes you strong is not your successes but your failures". Maybe this is true when it comes to RA. We unlike many others know pain and deal with it. Maybe just maybe this is making us stronger for other things in our life. Sounds good to me. Do you suffer from migraines by chance? I know before I get a migraine I either get a very mild headache, very tired or very grouchy, or all of the above. Those are my indicators to take something to prevent the migraine from forming and it works 100% of the time. Just wondering, is their something similar that you have notices with your RA that can prevent you from erupting into a flare-up? ANy warning indicator that can help you prevent things from getting out of control?

Good Luck with your RA and Remicade. Be Positive & Thanks, PamelaO

re: re: Keep strong!!
PamelaO
Friday, March 13, 2009 at 07:19 AM

Sorry, you are not on Remicade. Still, good luck & be positive no matter what drug of choice works for you.

in response to Pamela's note of RA
Marie Waziak
Thursday, March 12, 2009 at 06:36 PM

hi

You may not know who i am. But i know how much pain u go through. I have RA. I take Remicade infusions every 6 weeks and i have been on it for 6 yrs. I was dignosed when i was 30 and I am 42 now. some days are good and some days u cant get through. It mostly effects my hands and feet and sometimes i cant walk and other days i cant move. the only bad thing about this medicine is that it has bad side effects. i get headaches and sinus infections. and now there is a new side effect. its increase shingles. I also get so very tired all the time and cant get my energy level up. Im trying to go exercise but i cant get my energy level up. I just get sick alot. especially in the wintertime. so some days are better than others and its nice to know, other then the doctors that there is somebody else that is experiencing what u are going through. what i dont understand is that this disease is growing increasely in women and why they wont or dont want to find a cure for this. so if u would be interested in talking further and want to ask me anything about this, let me know. take care.

Sincerely,

Marie Waziak

re: in response to Pamela's note of RA
PamelaO
Friday, March 13, 2009 at 07:35 AM

Marie, thank you for your response and concern. I am sorry to hear of your struggles. The only thing that I keep in mind daily is that treatment for RA has become more advanced than it has ever been. Years ago, pts used to get liquid gold injections. Kinda creepy huh. But now, with the new biologics, they are putting a pretty good holt to it. I am not sure why women are genetically more predisposed than men to getting RA, but we surely know all of the differences between men and women. I try not to focus on the potential side effects unless they are given to straight from the dr.'s mouth. Absolutely any drug can have harmful side effects, so I am tring to focus maily on the treatment. I have seen more people with shingles and not one of them has RA or was on and medication that may enduce it. However, keeping ahead of the game is very smart patient medicine. I just won't allow myself to worry about what has't happened yet. Too much stress = Flare-up. Ya know? Thanks for your advise. Keep me posted!, PamelaO

re: re: in response to Pamela's note of RA
Marie Waziak
Friday, March 20, 2009 at 11:22 PM

Pamela,

thanks for your response back. its nice to talk to someone that goes through the same thing that u do. Lately i have been in alot of pain. cant sleep at night because of it. tired of taking pills all the time. im not even sure they help anymore. Im suppose have gotten my infusion this week. but my doctor wanted me off the medicine for two weeks because i have been getting headaches and i thought it was from the medicine. i am going to see a neuologist tomorrow to see what they say. so u can see i really need my medicine. sometime i wonder why my dr. wont do anything for some of my deformities. like in my hands and feet. i just dont want to be like my mother. she had her hands badly deformed. she also passed away 6 yrs. ago. not from arthritis but other things. well hopefully we can talk soon. take care.

Marie

re: re: re: in response to Pamela's note of RA
PamelaO
Tuesday, March 24, 2009 at 08:16 AM

Marie, I am sorry to hear about your mothers struggle with RA and her passing. I can see how you would have concerns. Maybe you can see a hand surgeon regarding any deformaties in your hands. I have one in my back pocket due to bilateral carpal tunnel surgery a few years ago, before my dx with RA. I also have a migraine disorder, saw a neurologist who started me on Topomax 25mg daily. I have been on that for about 2 1/2 months and am migrain free. YEA! They can be an absolute aweful thing to cope with let alone dealing with the RA.

I just started Methotrexate and Pred. last Wed. So far, so good. No drug reaction yet. I am crossing my fingers. I have had a pretty good past few days, I mean my knees are still swollen and stiff, and my eyes burning a bit, but I actually feel human. I have been taking Tylenol & Ultram together for the pain which is working pretty well for me daily. Maybe you need to refigure your approach with your Dr. so he better understands your concerns. For us sufferers, this is sooo important and life altering, and sometimes I think our Doc.'s see so much of it that they need a reassassment as well. By the way, do you have any bowel problems? I am trying to avoid my Gastroneuologist due to some ongoing problems. I guess I am affraid of Colitis or Chrones. Like I need anything else to worry about. Just wondering.

Hope to hear from you soon Marie & thanks, Pamela

re: re: re: re: in response to Pamela's note of RA
Marie Waziak
Wednesday, March 25, 2009 at 12:40 PM

Hi Pamela,

Thanks for getting back to me. U are right i think i need a specialist for my hands. My mother's hands were badly deformed and I don't want to get like her. Im too young for that. do u what they call a hand specialist? so how are u feeling? It seems we have alot in common with our condition and pain medication. Also we both get migranes. that is so funny how we have both the same systoms and everything. By the way, where do u live? I live in Lockport, NY. well thanks for information and stuff. Oh by the way, i talked to my doctor and he is changing my medication to Orencia. I just got approved and waiting for the doctor office to set something up with me. I maybe doing it every month instead of every 6 weeks. Because my feet and really bad and swollen and hands too. i usually see a foot dr. and get a shot but since im getting this medicine i might wait see how it reacts to my body. well thanks and take care. hopefully we can talk again.

Marie

I know what you are going through
jujumom
Thursday, March 12, 2009 at 10:40 PM

I too was young (22) when I started to have pain. After 9 years it was confirmed as RA. There have been many flareups over these 30 years, but I have been blessed with a great doc that keeps plugging away to make me comfortable. I was on plaqenil for about 20 years, it worked great for me overall (no joint damage) however, if you've had an allergic reaction to it be very careful. I never had any problem with it, I had my eyes checked twice a year, but suddenly I started to see wavy lines and they are never going to go away. I was immediately taken off the plaqenil and put on Methotrexate.

re: I know what you are going through
PamelaO
Friday, March 13, 2009 at 06:59 AM
Jujumon, how are things on methotrexate going? I am sorry to hear about your retinal damage. After 20 years. Well hopefully it is not too bad. Can they repair it at all? I am glad all I made out with is a rash, I should be thankful then. I am still plugging away and waiting to get into the doc on tuesday for a reassessment. Unfortunately, the Plaquenil was helping me besides the allergy rash. The day after I started treatment my joint pain started again. Back on prednisone & weaning for the drug rash, my pain again is flaring with a vengance. I am trying not to become discouraged though. How long can this go on for? How long will Methotrexate take to begin working? Just thought you might know. I am very limited to what I can do. It seems the minute I feel human, I take 2 steps back. I have been in bed a lot resting my joints. AAAHHHH. I am wining. That I will not allow myself to do, but any info that you can give me would be great. Your experience and advice means a lot. Thanks, PamelaO

re: re: I know what you are going through
PamelaO
Friday, March 13, 2009 at 07:40 AM

Re- writing of this sentence, sorry, typo.

The day after I stopped Plaqenil treatment my joint pain started again.

re: re: I know what you are going through
jujumom
Saturday, March 14, 2009 at 02:53 PM

When I had to go off the plaquenil my doc had me only using Relafin to see if I would even get a flair a couple weeks later..did I get a flair! We then strategized. I was immediately put on prednisone, and of the choices he was offering I chose methotrexate injections. The prednisone only took a couple days to help, so I'm not exactly sure how long it took the methotrexate to work. Now after 2 years of shooting myself I seem to be getting an avertion to it and have been prescribed the pills.

I know, it is so very easy to get depressed. If it isn't the horrible pain it's the fatigue, or the other complications that are due to the drugs or the long term effects of the disease itself.

It has taken him a few years, but my husband is finally more supportive of it. Maybe it's because he is aging and now understands the trials that come with that for himself. Just try to remember that you are not alone in this struggle.

re: re: re: I know what you are going through
PamelaO
Saturday, March 14, 2009 at 05:27 PM

Thanks for giving me hope, PamelaO

RA and artist
Tania
Saturday, March 14, 2009 at 06:11 AM

Hello, I Live in France and I get the newsletter of this site regularly because I suffer from RA since my 19th birthday. I am 46 now, and I went through all sorts of treatment and surgery after so many years of RA, but I remain very positive : so far life with this problem is OK for me. I'm an artist too. See my painters blog if you wish : www.1otreregar.over-blog.com.
Although my english is not very good, I'm happy to share experiences with you if you wish.

re: RA and artist
PamelaO
Saturday, March 14, 2009 at 07:46 AM

Tania, if you are not aware, Renoir also had RA so keep plugging away. You were too young to suffer from this and apparently are still fighting every day. I admire that. My studio is waiting for me but I think my mind is not open enough to be creative. Yet I know it would be great therapy for me. Thanks for the link. I can't wait to see. I also have a website. A decorating and painting website offering multi-services to my clients. I guess the days of getting on tall ladders are on hold for a while, but not forever. Please let me know what you think also:

itsonlynaturaldecorating.com

Your English is fine,

Sincerely, PamelaO

re: re: RA and artist
PamelaO
Saturday, March 14, 2009 at 07:54 AM

www.itsonlynaturaldecorating.com

Untitled Comment
diane
Sunday, March 15, 2009 at 03:43 AM

hi pamela, iknow how you feel,im 38 year old mother of two , workpart time or when i can, i have been taking methotrexate for 3 months now, and think its just starting to work , had a flare up this week just gone,in my foot, was vry painfull, but normally i get it in all my joints both sides, but one joint or all joints it stillhard to cope with, i have a 2 yr old and a 5yr old, when i do get an attack and its a bad ne i cant even dress my little boy or pick him up,its hard , tank god for my sister who only lives up the road, but i am the same on a good day i try to conquer the world just in casei get an attack the next day , we just try to soldier on dont we, all i can say is keep fighting and dont let it win us good look x

re: Untitled Comment
PamelaO
Sunday, March 15, 2009 at 08:33 AM

Diane, My son is 16 now so my level of raising him is not as physically demanding. Just emotionally. Thanks for the input on methotrexate. I am eager to start something soon. I am still weaning off my prednisone & am now on 2 mobic a day & each day I wean a little more, more joints are bothering me. It is like the reverse order or my flare-up treatment. The last to feel better, the first now, all the way up... Crazy.

But, just getting the opportunity to talk with others increases my will to live better. Today I will paint. I will go down into my studio and create something! Good Luck Diane and thanks for everything, PamelaO