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Old 08-13-2003, 06:37 PM   #1
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Post Need advice...PLEASE

My sister was just diagnosed with RA today. We knew something was wrong because she's been in so much pain. This has been going on for years, but she didn't want to see a doctor. She had 9 months of no pain when she was pregnant, but now that it's back it's stronger then ever. She swells so bad she can't even get out of bed. The doctor prescribed her celebrex and is sending her to see a Rheumotologist. How long does it usually take to get into the first appointment? What should she expect? Please don't worry about upsetting me. She's already going through a tough time and we need to know will it get worse? Those that have RA what meds work best for you? What generally happens at your first appointment? I'm sorry there's so many questions, but she's scared. She has four children, the youngest only a few weeks and she can't even get out of bed to tend to him.

Thank you to everyone who reads and responds. All advice is greatly needed and appreciated.

 
Old 08-13-2003, 07:24 PM   #2
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testing to see if this goes thru

 
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Old 08-14-2003, 03:43 PM   #3
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There's not much support on this board. Does anyone know where I can go to get support?

 
Old 08-15-2003, 02:06 AM   #4
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If the doctor can refer her to a rheumatologist she can probably get in a lot quicker. Otherwise it could take awhile. I don't have RA but something closely related called psoriatic arthritis. And there was a time in my life where I could barely get out of bed as well. I don't know what meds will work better with your sister because everybody is different. I had been on methotrexate for the last few years and this past April switched to Enbrel injections. They were working great, almost became pain-free. Then I had surgery 3 weeks ago and I think that traumitized my body somewhat and set the arthritis back in motion because I'm in quite a bit of pain. Even stiff in the morning again. I'm hoping it will eventually go away. But anyway, I understand what your sister is going through. And would be even more difficult with 4 kids to raise. Get her to a rheumatologist as soon as you can because some meds take awhile to start taking effect. And she needs to get the progress of this disease slowed down. Good luck!

[This message has been edited by Dawnrise (edited 08-15-2003).]

 
Old 08-15-2003, 08:18 AM   #5
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Thank you so much for taking the time to respond. She was suppose to book the appointment, but I don't think she's done it yet. She looks at it as if her life is over cause she's in too much pain to deal with anything. I'll continue to push her until she makes that appt. Thank you!!

 
Old 08-17-2003, 01:59 PM   #6
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Hi, I do have RA. I went through severe pain and testing for six years. My tests came back normal except for my bone scan, c-reactive protein and sedemendation rate were very high. The pain and swelling in my hands and feet were terrible. The fatigue was awful. I finally got a referral for a rheumatologist. He also did extensive testing including xrays of my hands and feet. It took about one month before my appointment. This was my second opinion. The first rheumy said I had RA but I was not comfortable with him. He explained to me that to treat RA you need to take a NSAID (non-steroid anti-inflammatory) and a DMARD (disease modifying anti-rheumatic drugs. He said my prognosis was good since I am young (36) and it has not destroyed my joints at this point. He suggested methotrexate (which is a DMARD) which works within a couple weeks and vioxx which is a NSAID. I was allergice to the mtx and vioxx so then he put me on plaquinil (DMARD) and celebrex (NSAid), again I was allergic to both. He then put me on prednisone (Steroid) and mobic (nsaid) and will be starting enbrel injections at the end of the month which is a DMARD. So to answer your question, it does take a while for an appointment and there are many different"cocktails" which work differently for each person. Not everything works for everyone. I hope this helps and I hope your sister is doing better. Feel free to email me.

 
Old 08-17-2003, 03:04 PM   #7
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I know what that feels like to have kids and be so sick you can't move. That is common with RA to be much better during a pregnancy and then very bad after the baby is born. I agree about the trying and mixing of different meds, I have experienced the same thing. I am currently on Vioxx, plaquenil, and Remicade for the RA, and a few other things (including a pain med).
MTX works well for some people, but for me, it caused a major breathing problem. It is sooo individual, how meds are tolerated. I have 2 kids and it is a struggle. Your sister is going to need a lot of help and support from family and friends. The best thing you can do for her is help with the kids, meal preparation and housework. It really seems that some people with RA are affected slightly and can continue, for the most part with their normal life, and others (like me) are very affected and they have to sdapt to a whole new way of life. I have "good days" and "bad days". My biggest problems are fatigue, joint pain, migraines, nausea. I have had RA for 2 &1/2 years and am in my late 30's. I have not been able to return to work, but some people do. I would say it is very important for your sister to feel a connection with her rheumatologist. It took me several tries to find the right rheumy. Try [url="http://www.creakyjoints.com"]www.creakyjoints.com[/url] for more info and a very supportive message board.

 
Old 08-18-2003, 04:23 AM   #8
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Please let your sister know that its not the end of the world - just the begining of a slightly different one. I am 27 and have had RA for 6 years - for me methotrexate really worked in conjection with anti inflamitories. Need to be careful with methotrexate if thinking of more children as it can cause birth defects (I have had to come off as I am trying to start a family).

Other advice - however difficult it is to move your sister must try to do a little bit - you don't move because it hurts and that makes you stiffer. Stay positive - I promise its not the end of the world - to begin with my husband used to lift me out of bed in the morning but now I work full time, swim and even go dancing.

I hope that helps.

 
Old 08-18-2003, 08:14 PM   #9
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You all are really helpful. Thank you for sharing your advice and support.

I try to be there for her, but she hates to ask for help. I live 45 minutes away and unless she gives in and asks me to come help her I assume she's doing ok. Her worst pain comes in the mornings. She's also had to be picked up out of bed and taken to the restroom or put in a hot tub to help ease the discomfort. She has large knots all on her hands and feet that just look painful. I can't imagine what she or any of you are going through. My uncle was paralyzed from Juvenile RA. She cried to me yesterday and said she didn't want to end up like that. She said she would rather die than deal with this pain day after day. I really didn't know what to say other than she has a long road ahead, but she can get through it. She's tried to excerise, but only gets so far cause it is painful.

I do have one other question for those that may be able to help. Her husband was just layed off due to lack of work. She know longer has insurance. Is there support groups or anything out there that help with costs of seeing a Rheumatologist? We're trying to get that sorted out prior to making the appointment. I told her not to put things off cause it will only get worse, but she doesn't know where to start. I appreciate all the help you all and anyone else is willing to offer.

Take care!!!

 
Old 08-19-2003, 03:29 PM   #10
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Hi,

I have another important thought about what might be a big part of her problem because of my experience.

4 years ago, I started with odd symptoms and the first (GP) doctor I saw thought I had plantar fasciitis (swelling of the soles of my feet). He put me on Celebrex. Though I didn't see the connection, all my symptoms got much worse - so swollen in ankles, knees and such hip pain I could hardly move. I saw a rheumatologist (4th doctor, 3rd had diagnosed me with lupus) and he noticed the connection between Celebrex and my worsening symptoms. He deduced I was allergic to Celebrex (also Sulfa as Celebrex has a sulfonamide in its chemical make-up). He took me off Celebrex and started me on Naprosyn and over the next 3 days, my swelling went away completely. I still take the Naprosyn.

Your sister may be allergic to Celebrex, too. I suggest she insist her doctor give her a different medicine. It's worth a try! I'll add that the first couple of days were really uncomfortable until I had the Celebrex out of my system and a blood level up of the Naprosyn. My doctor sent me some Darovcets for that pain - I needed them only for about 3 days.

You deserve a star in your crown for trying to help!!

Hope this helps! I wish her well. Barbara
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Old 08-19-2003, 05:29 PM   #11
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Thank you Barbara for the advice. Unfortunately, I don't thin that is the case with her because she just started the Celebrex about 2 wks ago. The swelling started long before that. She actually says the pain is somewhat better in most places, but the swelling isn't going down. I do appreciate you offering some help!! Take care!

 
Old 08-20-2003, 06:19 AM   #12
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Hi again

I don't really understand the insurance thing as I live in the UK and luckely get free treatment but maybe try Arthritus Foundation [url="http://www.arthritis.org/default.asp"]http://www.arthritis.org/default.asp[/url] and see if they know of anything.

The other thing that she could do herself is look at things like diet - I have heard of one nutrtionist in the UK who says she can significantly improve 99% of arthritus sufferers. I've read that dairy and wheat can cause problems as well as alcohol, caffine, sugar, chocolate and processed foods (I know - all the good stuff). I haven't tried myself but know somebody who swears by it. Maybe thats something she can resurch and try, at least she may feel like shes taking a bit more control back. The other thing that worked for me was yoga - I found a teacher with RA who gave me individual programmes to do at home that helped me relax and very gently move. Again - may be worth a go (but not the strenuous stuff that Madonna does).

If I think of anything else I'll let you know.

S

 
Old 08-21-2003, 08:48 AM   #13
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If I had to tell you one thing to do right now, it would be get her doctor to put her on prednisone NOW. It will give her some kind of relief withing 48 hours. I was just a sbad as you describe she is when my RA came on, and 36 hours after they started me on Prednisone, I lost 15 lbs in fluid and could stand without assistance. It is also a relatively cheap drug if you have no prescription coverage. I was on pred for over a year, and wanted off it because over time it can cause wieght gain, moon face, moodiness, and other side effects, and now I take it for bad flares only. But she needs it now to get her through this crisis period.
Re: insurance, I lost mine when my COBRA ran out after 18 mo.s off work. RA drugs are terribly expensive. I get Remicade only because it is IV and my major medical that I pay for will cover it.
SOrry, I disagree that RA can be cured with diet. I think it benefits all of us to eat in a healthy way, but diets, herbs, physical therapy, pain counseling, and RA meds-- none of it has got me back to my normal working self. This is a very individual disease, and while some are benefited by certain meds, certain exercises, etc, by no means are they the cure-all for everyone. Talk to 10 people with RA and you will hear 10 different stories on what helps, what hurts and what their level of function is. Unfortunately it is not "mind over matter".

 
Old 08-21-2003, 09:03 AM   #14
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Agree totally that everyone is different - just trying to think of things other than meds that I've heard work for some people. Lets face it if diet, or herbs of howling at the moon naked was a definate cure then wouldn't we all be cured (and maybe in court for indecent exposure!!).

 
Old 08-22-2003, 05:21 PM   #15
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I also have RA, several years ago I felt much worse than I do today. I take Naprosyn daily. It seems to help especially taking it over a period of time. Also, believe it or not, quite by accident I didn't eat poultry for a week and stopped aching as much! Now I watch how much chicken I eat!!! Don't know why but I seem to ache more when I eat it!!

 
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