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mrskrank
Posted Monday, November 02, 2009 12:54 AM


 

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Well, where to start...

I've been feeling pretty crappy (fluish with painful joints) for about 6 months and my husband insisted I go in. My GP did a few tests and said my RA factor came back at 86.9. My first visit with the rheumy and minus 14 vials of blood showed an RA factor of 78 and sed rate of 22 with all other labs being normal. He diagnosed me with RA and fibromyalgia, put me on prednisone and told me to follow-up in a month. I really haven't noticed any difference with the prednisone. I have a nodule on my left elbow and random very painful joints, mostly in my wrists and fingers. The "pain" varies from burning to aching, throbbing, and sometimes like someone is jabbing a needle through the joint. I don't really notice the stiffness so much in the AM and I find that kind of odd (my husband thinks it's because I tickle myself all night long, yeah I know wierd) considering that's one of the diagnosing criteria. I do have stiffness after any period of inactivity and i'm noticing more and more warmth and redness. Not to much swelling. Does this sound normal for RA? Maybe I'm just in denial as life is to overwhelming to have one more thing on my plate right now (hubby was diagnosed with RSD/CRPS a year ago). Are the side effects from the meds really as bad as I'm reading? How do you keep your spirits up? I'm only 37 and the prospect of living with this for the rest of my life is daunting to say the least.


I've started exploring some of the threads on here and am already learning a lot...like I'm not alone. Thank You!!
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Grandpavan
Posted Monday, November 02, 2009 1:40 AM


 

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Welcome to the board and I'm sorry you have a reason to be here. However, with your symptoms this is the best place for you to be. I am surprised that your rheumatologist gave a diagnosis so quickly with blood work near normal and on a first visit. There are both the old and newer diagnostic criteria for RA as posted below. If you feel you have any four of the older criteria or score 6 or more points by the new criteria then RA is indeed likely. I'm surprised by no noticeable improvement with Prednisone. If the dose is at least 20 mg a day this would indicate to me that something else might be operating on you.

I don't think anything is "typical" of RA and the looseness of the diagnostic criteria shows how variable the disease can be. At my first appointment with a rheumatologist he said my "symptoms are consistent with RA" and I've never asked for a more definite diagnosis. The treatment I have received is commonly used for RA and it has helped me tremendously so I accept that I do have RA of a very closely related disease. I have been on 40 mg Prednisone to start with and after about a year and a half was able to get off it except for flares. I am now on Methotrexate and Remicade for my RA and Folic Acid to help with the side effects of Methotrexate.

The side effects of the medications are usually given for the highest common dose and for Methotrexate that would be the massive doses used as chemotherapy. For RA the doses are much lower and the side effects are correspondingly lower. If things like nausea or mouth sores are a problem with Methotrexate these are usually helped immensely by using injections instead of pills. The side effects are possible but most are unlikely, and most are reversed when we stop the medication and go to a different treatment. On the other hand, if it is RA the joint damage if untreated is likely and never reversible. Certainly getting RA is not a good thing but most people lead quite normal lives. I hope you do also, and recommend you call your rheumatologist's office to let them know the Prednisone is not helping and ask if you should come in sooner. You should be getting aggressive treatment and I don't think you are getting that yet. God bless.

Old RA Criteria adapted from American College of Rheumatology (Any 4 qualify for positive diagnosis)
1. Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks
2. Arthritis of 3 or more joints, lasting for at least 6 weeks
3. Arthritis of the hand joints, lasting for at least 6 weeks
4. Symmetric arthritis, lasting for at least 6 weeks
5. Rheumatoid nodules
6. Positive rheumatoid factor (blood test)
7. Joint changes on x-ray
Newer criteria using checklist
Joint Involvement
1 med-large joint (0 points)
2-10 med-lg joints (1 point)
1-3 small joints (2 points)
4-10 small joints (3 points)
>10 joints (at least one small joint) (5 points)
Serology
Neither RF or ACPA positive (0 points)
At least one test low positive titer (2 points)
At least one test high positive titer (3 points)
Duration of Synovitis
<6 weeks (0 points)
>6 weeks (1 point)
Acute Phase Reactants
Neither ESR nor CRP abnormal (0 points)
Abnormal CRP or abnormal ESR (1 point)
Total score of six or more means a definite RA diagnosis, even without x-ray evidence.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
Post #4253347
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Captex
Posted Monday, November 02, 2009 3:03 AM


 

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Welcome to the forum! I pray that the people here can help to bring to you a peaceful state of mind. RA is a challenge that we all face on a daily basis. We all have good days and bad days. 14 vials of blood samples should yield quite a thorough set of results for you. A complete set of results should at least let you know what your dealing with.

I agree with Grandpavan and his comments about the RF and Sed Rate test. You probably already know that those test are not as accurate as the ccp and crp test. But you should also know that people can be negative for RF and really have RA.

Your description of your symptoms makes me believe that you might have an active case of RA. As to the meds, Prednisone is a steriod. The drug is a miracle drug that can stop RA in it's tracks. The problem comes with weaning off. You have to wean off slowly. What dosage did he start you at?

Take a level of comfort in that all of the people here actually LIVE with RA. I can't answer for all, but I came here looking for answers of my own, I was seeking out information to use in my own case with my doctors. I definitely found what I was looking for, but the real value that helps me each and every day is my ability to be heard. But that pales in comparison to the outpouring of support and prayers that I have received from the membership of this forum

It is a powerful and comforting gift.


God Bless,


captex

I'm off Prednisone! and off Bactrim, currently taking Atenenol, Albuterol, Glipizide, Lozol, NOMORE NSAIDS and trying to lose the 30+lbs that I gained recently from Prednisone. Just added Arava. Diagnosed with RA in 1982. Fighting ILD. I'm dealing with my Diabetes and I've only begun to truely understand RA.
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Bodak
Posted Monday, November 02, 2009 4:00 AM


 

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Welcome aboard the good ship RA.
This is not the end of the road but the beginning of a new road where with adjustments, you will see and experience many things.
Life does go on after the initial shock of being told that you have RA.

With regard to the side affects of the drugs. The side affects of not having your RA controlled would be worse than the small chance of the drugs having an adverse reaction with your body.
For me, I would rather have as comfortable a life as possible rather than the pain and suffering that I experienced in the beginning.

Be well and try not to worry so much, you are going to be alright.

----------------------------------------
Peace be with you always.
Stephen

Severe RA since October 06
Web Site - Photography
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SusanOnWhidbey
Posted Monday, November 02, 2009 8:21 AM


 

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Welcome to the board! We look forward to hearing lots from you - at first we know it will be how awful you feel, and then slowly that you're making peace with the raMonster and finally that you're helping others face a truly frightening situation.

First off, you need to know that each person's Monster is different. But chances are, you'll find someone here who shares a particular symptom and can give you good advice.

Secondly, you should know that each of us has been through the Hell in which you now find yourself. There's a lot of work to be done. You need to let yourself grieve fully for the person you once were. As you do that, you'll finally come to accept the person you now are and only then will you be able to set a course for your future.

Read all you can. Laugh and cry with us. Vent freely to us because we really do understand what you're going through.

Meanwhile, know that you make this board stronger, just by joining us. We really are glad you're here.[font=Times New Roman][/font][/size]

SusanOnWhidbey
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Pam 14
Posted Monday, November 02, 2009 9:01 AM


 

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I, too, want to welcome you to this site. We're always sorry to hear someone needs to find this place - but want you to know we are here to support you and help you through it. I agree with the others - your symptoms sound a lot like RA. It is very important for you to build a strong relationship with your rheumatologist. If you're not pleased with this one, find another. Your relationship with this doctor will be important and long lasting. I agree the meds sound really frightening and there are some who have bad side effects. But most are able to tolerate them well and it can tremendously improve your quality of life. That's what it's all about. Make sure you keep notes - you may want to journal - with how you are feeling, what symptoms you are experiencing, and what you did or didn't do to get those symptoms. Take that to your doctor's appointment with you. You need to keep the rheumatologist aware of everything you're experiencing.

Just know that we will be here for you to help you through this. RA can feel like a very isolating disease, but here you will find people who have been through where you are and will always be here to listen and lend advice when needed. We truly care about you and will pray for your improvement. Please take good care and post again to let us know how you are. Pam
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Gramma
Posted Monday, November 02, 2009 9:46 AM


 

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Hi MrsKrank,

Welcome to the forum! It sounds like RA but you could be in the early stages. Prednisone is usually helpful in reducing pain by reducing swelling and stiffness. Since you are not bothered by swelling and don't have much stiffness, pred probably doesn't seem like it's doing very much.

My RA started in a similar fashion, with painful joints and not much else. For several years it would come and go over long periods of time. When it was gone, I thought I had "cured" my arthritis. Eventually the swelling started and became so severe that I had to see the doctor, who diagnosed RA. Prednisone worked miracles for me taking the swelling down and easing my pain.

Did your doctor prescribe any pain meds? Or Lyrica or Cymbalta for the Fibromyalgia? I would call and ask for something for your painful joints. And it sounds like you are under a lot of stress, which probably makes your pain worse. I'm sure you are worried sick about your husband.

As you get into your treatment protocol, you will find out which medications work best for you. And I'm sure you'll be feeling better soon. It's scary at your age, but we have members here who were diagnosed in their early 20s, and they're getting along fine. When you see your rheumy, make sure you tell him that you have no redness or swelling and that prednisone didn't do much for you. Also tell him about your stress levels.

Let us know how things progress.

Hugs,
Gramma Ellie
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WarmSocks
Posted Monday, November 02, 2009 9:59 AM


 

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Welcome to the forum. Wish you didn't need to be here, but we're glad you found us.
You are not alone. I've found this to be a great group of people with answers to all sorts of questions that come up when someone has been diagnosed with an autoimmune disease.

... i'm noticing more and more warmth and redness. Not too much swelling. Does this sound normal for RA? Maybe I'm just in denial...


There's a lot of variation in what's "normal" for RA. Little to no swelling is a possibility. My doctors could never detect any swelling in my hands. I agreed that they weren't as bad as some people's but said that since my hands had gotten so big that I couldn't wear my rings, there was obviously some swelling. After only two weeks on methotrexate, I was able to wear my rings again. Shocked my rheumy!

Denial definitely sounds normal Don't let denial keep you from trying the DMARDs, though.

Grandpavan posted both the old and new diagnostic criteria; with the new criteria:
-Joint Involvement - you don't say how many/which of your joints have been painful, but you definitely earn points here
-Serology - positive Rheumatoid Factor gets you 2-3 points
-Duration - six months is greater than six weeks so you get 1 point here
-Acute Phase Reactants - elevated sed rate earns you 1 point

You're looking at 4-5 points before adding 1-5 points for the specific joints involved, so I'd guess you have the necessary six points for a diagnosis. If the prednisone isn't helping, either you need a stronger dose, or inflammation isn't an issue. With a sed rate of 22, you obviously have inflammation. The next step is probably starting a couple Disease Modifying Anti-Rheumatic Drugs.


Are the side effects from the meds really as bad as I'm reading?


No. Lists of side effects give a worst-case scenario. Most side effects are highly unlikely, and sometimes there's a way to minimize those side effects. For instance, with the most widely-prescribed DMARD, methoxtrexate, elevated liver enzymes are the most likely side effect, affecting 15% of people. That means 85% of people do not have elevated liver enzymes. Avoiding alcohol can make things easier on your liver. Taking your dose all at once (some people split their dose) is easier on your liver. The next most common side effect of mtx is nausea/vomitting. Definitely not fun, but experienced by only 10% of people. 90% of people on low-dose mtx (low-dose is used to treat RA) do not experience this side effect. You can lessen the chances of a problem here by taking mtx at bedtime so that you sleep through the worst of it. My personal experience was that the first week was pretty bad, the second week was better, the third week was even better, and by the fourth week on mtx I had no nausea at all. For people who continue to experience excessive nausea, mtx can be given as an injection instead of tablets; the injection by-passes the stomach. Other potential side effects of mtx are less than 10%. There are usually ways to mitigate the side effects. The benefits of the drugs far outweigh the small chance that there will be adverse effects. Don't be afraid to try the meds.

How do you keep your spirits up?

Every person is different. I learned all I could about RA. One very good book is the Arthritis Foundation's Guide to Good Living With Rheumatoid Arthritis. Another is Rheumatoid Arthritis: The First Year, by M.E.A. McNeil. Another is What To Do When the Doctor Says It's Rheumatoid Arthritis, by Harry D Fis­cher, MD and Win­nie Yu. I found all these at the public library, then later bought the AF book. There are some good websites with basic information, too.

Exercise helps, too. Exercise helps my mood. It helps lessen my pain level. It helps me feel like I'm healthier (I couldn't really be sick if I can exercise). It strengthens the muscles that in turn makes the joints work better.

I blog. It gives me an outlet so that I'm not dumping on my family. There's a good community of RA bloggers who share tips with one another.

Sorry this got so long. I hope it helps.

 

+WarmSocks
______________________________________________________
Aiming for NED
  Plaquenil, Sulfasalazine, Methotrexate, Folic Acid, Feldene, Prilosec, Verapamil, Maxalt, Diclofenac Gel, vitamins

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Jeans
Posted Monday, November 02, 2009 10:38 AM


 

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Good Morning! I just wanted to add my welcome. You will find a lot of wonderful useful information here. I have nothing to add as everyone seems to have answered your questions, but know that you will always be welcome here. Jeanie

'What I do today is important because I am exchanging a day of my life for it.'

Author: Unknown
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Barbara Schwefel
Posted Monday, November 02, 2009 12:05 PM


 

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Hello and welcome,



Your symtoms sound alot like mine.No swelling or redness,elevated sed rate and a strongly positive RA factor.When I was first diagnosed the first blood test of many was positve, the next 2 negative,now I've been positive ever since and sed rate always up.I've just had new lab work done but am excited to see where I am now.I as well started out on prednisone but it really didn't do anything for me either.Being diabetic it almost tripled the amount of insulin so we went off of that.The methotrexate is not as bad as it sounds,in fact,it does such a good job that I now look forward to taking it because for three to four days basically i am pain free.The methorexate has a spike the first couple of days you take it and then drops down for the rest of the time until it's time to take it again.during this time you might experience what I've learned here is break through pain.Sometimes then the rheumy will up your dose of methotrexate.The drop period with this drug is what makes it safe.This is how my rheumy explained it to me and it didn't seem so scary then.I also take an anti-inflammatory called Nebumetone which works great as well.I also have a pain med I can take as well.Enough of that....



You will find here the greatest bunch of people God has put on this earth.Most of them are very knowledgable about their illness and always share what works and doesn't work.To me, they have been a God send of helpful knowledge that I use daily on this journey I, you and everyone here has had to take.You've definately come to the right place and I pray that you will always find comfort here as I have!

A SMILE IS THE LIGHT IN THE WINDOW OF YOUR FACE...IT LETS PEOPLE KNOW YOU'RE HOME.

Author unknown



Diagnosed 08/09 Am currently on Methotrexate,Folic Acid,Nebumetone,And Hydrocodone for pain.
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mrskrank
Posted Saturday, November 14, 2009 12:35 AM


 

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Hello all this is Mrkrank typing for my most beautiful wife who is having some difficulties with typing today. We are so greatful to find this place with so many people who are willing to give of their time and wisdom about this very terrible disease. Mrskrank says thank you all for responding to the thread and encouraging her that there are people who genuinely care and want to see the best for others. Frankly we have been devastated by the news of her having RA. At such an early age and how fast it has progressed so far. With all this happening and myself being diagnosed with CRPS we are in a state of shock right now. But we are holding on to each other tight and our Lord and Savior even tighter. We are praying for miracles. Thank you all

Mr & Mrs. Krank

p.s. Mrskrank goes to the rheumy on monday. We will update hopefully soon. Thank you
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Grandpavan
Posted Saturday, November 14, 2009 12:56 AM


 

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On the bottom of the group of pinned threads at the top of this board is one on welcome and general information. One of the sections of the first post on this thread is information for the first visit to a rheumatologist. This might be useful to plan for the visit,

While having a chronic illness at any age is scary please take comfort that most people get well controlled with some of the many possible treatment regimens. It is most likely that your wife will be able to lead a relatively normal life once the proper treatments are started. Unfortunately this varies considerably with different people so it may take a year or two to become really well controlled but it usually does happen. God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
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Liz M
Posted Saturday, November 14, 2009 1:09 PM


 

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Welcome, Krank family ! I am 35 and I know what you are going through! My symptoms were similiar. I didn't have a lot of swelling in the beginning - now I get some on and off, but not enough to warrant prednisone. I currently take Methotrexate, Plaquenil and some form of NSAID (I keep going back and forth between Naproxen and Celebrex, not liking either). I haven't had any major side effects (some minor ones and we either adjusted or switched the med - no biggie). Don't be afraid of the meds - we don't have much of a choice.

I understand the feelings of loss and denial. I haven't felt like "me" for a very long time. We used to be so active (repelling, indoor rock climbing, tubing, hiking, skiing). Now, I can't imagine doing any of those things. BUT I have hope that some day I will again. I just haven't found my miracle drug yet. I can't move on to the biologics b/c of possible Lupus and there are only 2 other drugs that I could take right now (and we don't want to use them up too soon). They are coming out with new meds all the time though, so I'm hopeful (with meds, the RA outcomes are not as bad as they used to be, so don't let "googling" make you fearful)! I hope you are able to find the right med combo for you that will get you back to feeling as close to the old you as possible!

Well, you couldn't have found a better group of folks than this bunch! They are so sweet and encouraging and I am so thankful for them every day! They understand like no one else can, they support, they inform, they love and they are here every day! You can't beat that !

Looking forward to getting to know you and helping to support each other on this crazy journey!!

Liz


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Chris Braile
Posted Sunday, November 15, 2009 12:35 AM


 

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Welcome, although I'm sorry you had to join us.

I agree with all the other posts. While you are waiting for an effective treatment, consider some alternative therapies for your pain and swelling. Acupuncture has been shown to reduce the pain and swelling associated with RA (as described by the Hospital for Joint Diseases in NYC), and there are other things that can help as well: swimming, avoiding excess heat & humidity, gentle yoga (there's an Arthritis Foundation yoga DVD you can get), etc. A good pain reliever for times when it's bad is a good idea, don't be shy about asking. RA is a very painful disease and you should not feel badly for asking for relief.

While I have chosen a non-traditional treatment route for my RA, most of this board has not and many are functioning well most of the time. Keep in mind that one of the downfalls of internet boards is that usually the harder-to-treat people post as they are the ones who are looking for more info and answers. Your average person who is well-controlled, happy with their treatment and doing fine is probably not posting here - or at least not often. I learned this when I had knee problems 10 years ago and was researching treatment options. Funny thing is my knees are fine now LOL.

SAHM/homeschooler Diagnosed 2009 with RA
Diet (no nightshades/gluten), supplements (fish oil, cal/mag, Vit D, Vit C), Chinese herbal medicine (3rd Coast Herb Company), acupuncture, yoga
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meow meow
Posted Sunday, November 15, 2009 3:38 AM


 

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Welcome to you both. It is good you have each other so someone's there that understands you both! I wanted you to know it is totally normal to be scared to death with this. When I was being diagnosed, even though I had expected it for a while and already knew a lot about the disease, it didn't really hit me till one day. I started looking up pictures of hands on the internet and just started crying. But it does get better, I promise. Although you have to be patient, there are so many things nowadays to treat these problems so that even though they aren't curable, they can be dealable. The meds do have side effects, but even so, I love them because of how much better I feel overall.
Try not to go crazy online because science has progressed a great deal in the last 10 years. Those of us diagnosed recently are actually much luckier than those diagnosed 10+ years ago. (Not that having these problems doesn't still suck, because it DOES!!)
Anyhow, keep us updated.
meow x2
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MaryFran
Posted Sunday, November 15, 2009 1:44 PM


 

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HI to you both. I'm so sorry you are having to deal with these two difficult diseases and hope you find some help and understanding here. I was diagnosed in summer of '08 with RA. I really was not shocked with the diagnosis because I had done some research before getting to the rheumy and figured that was what he would say. So far we have been able to keep things pretty well controlled, with an occasional flare which I absolutely hate! I just started on Remicade, a biologic, and had my third infusion Friday. My doc added that because things were not getting any better just with Plaquenil. I think I have a high pain tolerance and so did not complain a lot of pain until recent months. I agree that the warnings about all the meds are scary but in my mind this disease being out of control is much scarier! I'll take my chances on the meds. I hope you both find some relief soon. Keep in touch, even if only to scream, cry and vent.

Mary H.



Plaquenil, Medrol, soon to be Orencia, Folic Acid, Vit. D, B12, Calcium, + others unrelated to RA
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mrskrank
Posted Monday, November 16, 2009 7:27 PM


 

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Thank you everyone for your posts. You have all been so encouraging and have truly blessed me. I look forward to learning more about your stories as it is such a great comfort to know I am not alone in this battle nor are you.

I had a second visit with the rheumy today. Since my first visit a month ago more symptoms are rearing their ugly heads. I now have joint swelling, redness and warmth along with increased weakness. Because the prednisone was not terribly successful, He decided to start me on Methotrexate and Folic Acid and continue with the Ultram. We're really praying that we see some results with as few side effects as possible.
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Liz M
Posted Monday, November 16, 2009 9:31 PM


 

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Hey, lady! I'm so glad the doc put you on MTX! I definitely think you will see improvement, just give it some time! I haven't had a flare since I started on that and the Plaquenil.

Keep us posted!

Liz
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Diane B
Posted Monday, November 16, 2009 10:30 PM


 

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Hi!

I just want to hello and I can't add to what others have said. I, too, not that long ago felt life was over and I felt so depressed. I just remember feeling like I was in a black hole. But, reading the Holland story helped me a lot. Life is just different, but somehow I feel o.k. about it. I never thought I would say that!
Take care and you really are not alone!
Diane
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Barbara Schwefel
Posted Monday, November 16, 2009 10:30 PM


 

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Hey Mrskrank,I am soo glad you are giving the methotrexate a chance.Remember that it will take a while to work.I thought I noticed something right away.Like i said before,i was so against the methotrexate in the beginning and now look forward to itl lol.I've been on it approx. a month and have definately noticed some relief.Again maybe with the right medication we can get back to a somewhat normal life.I know I'm looking forward to that day.Hold your head up and smile and know we are all in this together.

A SMILE IS THE LIGHT IN THE WINDOW OF YOUR FACE...IT LETS PEOPLE KNOW YOU'RE HOME.

Author unknown



Diagnosed 08/09 Am currently on Methotrexate,Folic Acid,Nebumetone,And Hydrocodone for pain.
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