Tuesday, May 10, 2011 Kathy asks

Q: Just diagnosed yesterday and I am really scared.

Hi - I am 38 years old and mother to two small children, ages 3 and 6. Last summer I had suddenly started have many symptoms associated with RA, mostly painful joints. After lots of bloodwork, my factor score came back at 20, but everything else looked fine. I was sent home and told I likely had parvo virus. The symptoms ultimately went away within a month and I forgot about it. Three weeks ago they started again, but this time much stronger. Lots of migratory pain and joint swelling. Even have a nodule on the back of my ankle and small one on my elbow (isn't this a sign of more serious RA and how can this be already!?). So when I finally got in with a rhuematologist yesterday I was hoping for the best, but expecting the worst. My results were RA Factor - 58 and CCP - 250, and positive for ANA and RNP. My sed rate was actually normal. But the doctor said the CCP was as high as it can go. So he dx'ed me with RA. He has me taking a prescription for basically a high dose of Alleve, Folic Acid and Methotrexate (three, 2.5mg tablets one time a week). I have so many worries now and concerns and I'm hoping someone can help. Everything I read on the internet is so scary sometimes. Because I have little kids I am worried I won't live to see them grow to adulthood. I actually read a study that average life expectancy is 57!!! Can that really be true? I am worried I will end up in a wheelchair in a few short years or perhaps I'll just live in chronic pain for the rest of my life. Sorry to sound so negative - this news is simply devastating and I just don't know what to expect for the future. I have tried to be strong around my family, but when I am alone I am just in tears over this. When my children are with me I just want to hug them and pretend like none of this is happening. I had this idea of what my life would be like from here going forward and now that has just disappeared - I don't really know what to expect now. Any words of hope, advice, or good information would be so appreciated now.

Kathy

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Answers (8)

V, Health Guide

5/11/11 3:26am

Hello, Kathy. Happy you are posting here. Sorry for the reason, though. I was just diagnosed today with seronegative RA. My doctor is starting me on MTX. I am 57 years old and I have been battling this illness for over ten years. I just didn't know what it was until today. During that period of time I saw two different rheumys w/diffrent ideas. One said RA and the other said Erosive Inflammatory Osteoarthritis. Big word for "I'm not sure what you have," in my estimation. I also have Fibro, so it is an intersting mix. Most days are a roller coaster for me right now, but I am looking forward to the day when things might settle down a bit. I know it is scary. I'm scared, too, but I am so tired of the pain and fatigue, that I am ready to do whatever I need to do to get better. I know a diagnosis of a chronic illness is overwhelming at first. Give your self some time to accept it. The treatments availalbe for RA have much improved over the last ten years. There are more options than ever for patients, so if one treatment doesn't work, there is generally another treatment that will work. I hope you have a good rheumatologist. The good ones are hard to find where I live, but it is worth the search.

Blessings,

Kathy

5/11/11 8:36am

Sorry to hear about your diagnosis. However I suppose it helps to have a name for the pain. It is my greatest hope for you and I that the MTX brings pain relief. I have to say after taking my three pills for the week, I am feeling tired. It is helpful taking it at night because it really helped me sleep, but still dealing with fatigue during the day. I am hoping that will pass now that the dose is complete. Also hoping it will stop this awful disease from hurting my body any further. Thank you so much for your words of encouragement. Wishing you a good day!!!

V, Health Guide

5/11/11 9:34pm

Hi, Kathy. My doc prescribed five pills a week. I am going to take your advice and take it at night. I think I will take it on Friday, too, in case it makes me really tired the next day. Did the MTX bother your stomach?

Best Wishes,

Kathy

5/13/11 10:20am

Hi V -well I am about four days out from taking the MTX. Energy and appetite have come back up. Seemed like the first two days after the MTX were hardest. Wish you all the best in trying it out. Hope this helps.

Barb

5/11/11 5:19pm

V, Well, sorry to hear that your diagnosis is RA. You have been very supportive to me, and had written that you really did not have a definitive diagnosis. My prayer is that you will find some solice with at least having a diagnosis to work with. The combination of Fibro and RA, sounds quite frustrating. Hope this finds you having a good day today. Live, laugh and love, Barb. .

Barb

5/10/11 6:24pm

Kathy, Welcome to this site. You are in the right place for answers and support. This site is wonderful with experts and community members who are caring and willing to share and support each other. I have been diagnosed since Oct 2010, which in the RA world is a very short period of time. Here on this site is some wonderful research that can help decrease your fear of the unknown. I realize that you are scared. Having young children as well, it is a very natural feeling. Hang in there and I'm sure as you learn more and work with your medical team to get this undercontrol you will begin to relax some. Are you seeing a Rheumatologist? If you are being cared for by a Rheumatologist then work closely with the office to get your disease undercontrol. If you have not seen one yet, hopefully your primary care physician can point you in the right direction toward a good one. Read, read and read as much information as you can. Come here often and ask questions, the experts here are wonderful and will help point you in the right direction as well. Hope that helps, keep us informed how you are doing as well. Live, Love and laugh, Barb.

Kathy

5/10/11 10:31pm

Hi thank you for responding. I am seeing a rheumatologist. He has a good bedside manner so I am comfortable with him. I took my first dose of methotrexate and feel okay. I haven't been very hungry today, but maybe that is just from the stress of the diagnosis. Also feel like I am getting a sore throat this evening. I'm not sure if that is normal and due to the medication already. Mostly thinking I might need to see what else I can do for the pain. The Aleve was working well the first few weeks, but today I have been very uncomfortable. Lots of pain in my back and neck. I really worry about taking steroids, but thinking I might need to call back to the doctor again already to see if he can prescribe something stronger. How have you been doing since you were diagnosed? Are you comfortable or does the pain continue uninterrupted?

suzzy

5/10/11 11:07pm

here is some side effects with mtx just to let you know

Methotrexate

Rheumatrex, Trexall

7.5 to 20 mg in a single weekly dose

Take with plenty of fluids.
Avoid alcohol, aspirin and other salicylates and prolonged sun exposure.
Your doctor may prescribe folic acid to mitigate side effects.
Minimize exposure to sunlight and wear sunscreen.

abdominal discomfort, chills, dizziness, fever, general feeling of illness, hair loss, headache, increased sun sensitivity, itching, liver problems, low blood counts, mouth sores, nausea, rash, shortness of breath, yeast infections

Barb

5/11/11 5:12pm

Well, it is good to hear you are seeing a Rheumatologist and that you have a good repore with him. This is a plus with the treatment and the amount of time we spend in our Doctors offices or on the phone with them. If you feel that you are getting a sore throat, its probably is not the medication yet, but if it gets worse you should direct this to your physician to address and to ensure it doesn't get worse. The fatigue you feel may just be your RA as it is a big part as well, but you should track your symptoms, so if your physician has a question about it you will have an answer. I have a steno book just for my symptoms. I write down how I feel at least three point of the day. Am early afternoon and each evening aproximately the same time so I can judge whether something is getter worse or better. It is normal for my symptoms to fluctuate daily but when they become extreme that is when it is time for a call to my Rheumy.

I understand the concern about use of Steroids, but a short term titrating dose might help you get the pain under control faster. Steroids have a lot of side effects, so work with your practioner and let him know your fears, i'm sure you will come up with the thing that works for you. If there is one thing I've learned about this disease since diagnosis is that it is not the same for each of us. Our bodies are unique and so is the way RA works in our individual bodies. That is why I'm glad there are plenty of choices for available treatments. That Rheumatologists have figured that out and don't seem to treat each of us the same. If you look at some of the combinations that some of us take, our docs are willing to change to the needs of each individual. Hope this finds you are having a better day. I am struggling today, but will get through it. Take care, Barb

worried in Tennessee

5/12/11 6:57pm

I was diagnosed 6 years ago. I started falling and my husband took me to the hospital when he saw what was happening. I also have fibromyalgia which doesn't help any. I think the worst thing you can do is get on the internet and look RA up. You will get so scared. I was working and had to take disability. The thing I had to learn to do was to do for somebody else and get my mind off of myself and believe you me it was hard because I could not go out because of falling for about 3 months. Another thing you can watch for, and some may not agree with me but my RA DR told me this, watch for the weather. Like today, I live in MS, and it is supposed to rain tonight. I can tell you it will rain tonight because I can hardly move today.

The best thing I have found that helps my RA is to get water therapy. It has helped me and some friends I know who have tried it. You can move easily in the water and the temp of the water is high so that helps. I hope I have helped you. I have pain most of the time but I try to get out and do something.

Don't be scared, just trust in God and he will carry you thru.

Kathy

5/13/11 10:17am

Thank you so much for your help. Sorry to here you are in pain. I often wonder if this pain is something I'll have to live with the rest of my life or if it will get better. It is easier to cope when the pain subsides a little.

suzzy

5/10/11 7:43pm

Hi Kathy sorry to hear you have RA as lene would say you picked a good time to have RA i know you didnt choose this an none of us do but at least your headed on the right track an you know what you have an able to put the brakes of this RA yes the meds are very scarey im just new to starting meds on mine i have RA i was taking mtx an found out i caint take it no more so waitting to see what else i might be able to take its ok to cry lord knows i have cried rivers full an yes anytime you need to vent you can vent right here we are here for you this is the best site i have found alot of help from people with the same problems i know they caint give us all the answers to all questions but they share what they went through so it might help some one else there is alot of info here on this site that well help you through your journey with this i got you on my prayer list god bless an take care

Kathy

5/10/11 10:39pm

Thank you. I am happy there are people to offer support out there. I do have so many questions because it is all so new. Mostly dealing with the fear of the unknown. It troubles me too that so many of you are still shifting meds and having pain. Like there may never be any relief from all of this. The doctor said I have to do the methotrexate for a while. But it sounds like the newer drugs on the market work better. However, the doctor told me insurance will not cover those drugs without starting on the methotrexate first - as it is so much cheaper. I just hope this drug will prevent joint damage. So far, my hand x-rays look good. Hoping to keep it that way and just find some relief from this pain.

suzzy

5/10/11 11:24pm

hi glad to hear your xrays turned out good an yes me too i hope it stays that way i was wondering did he do xrays of your chest to see how your lungs are an blood work you never said anything about those two as i have read it is trail an error with the meds everyone is different i too dont want to play around very long to find the right one have a good night

Kathy

5/11/11 7:14am

No he did not do any X-rays on my lungs. I am going to ask about that at my follow-up appt., as I do have a slightly wet to dry cough, which came on with my symptoms. My blood work was fine except for the main markers of RA being high (i.e., RA factor, CCP and ANA). I did have some weird elevation on a mono test they ran, but I have no symptoms of mono and so he sort of blew that off. Wishing you a happy day!

V, Health Guide

5/11/11 9:31pm

Thank you, Barb. I have been so tired and in pain for so long, that I just wanted a doctor to help me. Now that I know what it is, I can work with my rheumatologist to try and get better. I hope the MTX works for me and doesn't cause any bad side effects. I really like my new doc. She is a character. I like characters!

Blessings,

Momorris

5/12/11 12:15pm

Kathy..welcome to this site. I found it last year when I was going through the diagnostic process. I know how you feel as many on this site do, but as many others have also said, it is a good time to have this diagnosis because the treatment options are many. I have probably had it for over 7 yrs, but worse over the past 3. To my delight though, I didn't know how much pain I was living with until it went away! So, yes, this is a chronic illness diagnosis and all, but there are many upsides to it as well. It is going to be a trial and error to find the combo of meds to help your pain, so be patient and stay on this site. The experts here are wonderful and very helpful as are many of the other contributors. Hang on there and it will be a long and bumpy ride, but we are all in it together. In the end, things should look up. Best of luck to you and hope to see you here again soon with an update! Mo ;)

Kathy

5/13/11 10:26am

Mo - thanks so much for the words of encouragement. Sounds like the medications you are taking have been helpful. That is promising. I think what concerns me is many people start taking the meds and yet they still have pain every day. I am still trying to understand what I should expect from the medication with regards to how much it manages the overall pain and slows the joint damage.

Kathy

Barb

5/12/11 1:53pm

Hi Kathy,

Welcome to the site. I have had RA for over 20 yrs. now. I too,had small children when I was told. I too, cried and had all the same feelings. I am now 51 yrs. young. I am in the severe stage of RA. I am not in a wheelchair, my motive is that I will not let this beat me. keep your chin up and do as your doctor says, plus ask questions, a lot of them (I did). Do not let it get to you, where you think you will not enjoy your children, because they are an inspiration, and helpful in ways that you will find out with them everyday. Mine helped me emotionally to get through the first shock. Keep in mind that you are in control of your RA, it is not in control of you. You see, what they have discovered about RA, I wished they had discovered years ago. I am sorry to hear you have RA, and I wish that it was never in a vocabulary. You have come to the right site. Everyone on here is very helpful and supportive. Keep in contact. If your RA Doctor has not done a chest exray, then maybe you are not in that stage yet, but do ask him about it. I am in that stage. Never give up, Laugh often, love more, and live life as if you do not have a care in the world. Take care and believe in yourself.

Kathy

5/13/11 10:57am

Hi Barb - Thank you. It is too bad that it takes something like this to really make you appreciate things, especially your kids. If nothing else positive comes from having this disease, it will be that I will try to enjoy each moment with them more and apprciate the small things and small gifts that I have each day. Last week, I could not brush my teeth my hands were so bad. This week the pain has moved on to my back and neck, but I can brush my teeth and I take such joy in being able to do that each day now. Crazy!!

Deana

5/13/11 1:02am

Kathy,

The calvary is on the way now that you know what you have. There are many new wonderful meds to treat RA. I am 62 in July so much for 57 and I have had RA since 1998. I am still walking - maybe not as well as I would like - and I can still drive. Each person is different and their disease progresses differently so I think it is hard to generalize. Also a lot depends on how quickly and aggressively you treat your RA so there isn't as much joint damage, etc. Your doctor will start out slowly to see how you react to the meds and he will do labs. If the labs do not improve stay on him/her to adjust your meds until they do improve. There are also many things you can do to deal with the pain in joints such as cortisone shots, Lidocaine patches, and they even have shots called Synvisc that replace the fluid in your knees so the bones don't wear out. My suggestion is to try to get on biologics (Enbrel or Humira) because they make a world of difference painwise. Some people can be fine on meds for many years so stop with the doomsday. But most importantly stop stressing yourself out as it will make everything worse and it will not change or fix a thing. Take a deep breath, try to remove as much stress from your life as you can, and take it one day at a time.

Good Luck,

Deana

Kathy

5/13/11 10:48am

Hey Deana - Okay so you made me laugh with your "stop the doomsday" comment. You sound like my husband, who is unbelievably optimistic. A swift kick in the butt with an honest and frank statement is a great thing to get one's mind off all the negative. I will keep up with my doctor on the biologics and make sure we get those in place if necessary. Thank you!

Deana

5/13/11 5:22pm

Hey Kathy,

Sorry if I was a bit abrupt . . . Opps!

You might want to check with your doctor first on this, but I find they don't really tell you how to manage the OTC drugs. You might want to try less to start and see if it works. I don't know if this will help you, but I will tell you what I have found works for me for the pain. This is in addition to Prednisone, Enbrel, and Methotrexate. I take two Arthritis Strength Time Release Tylenol (1300mg) in the AM before I get up and I go back to sleep until they kick in and in the PM before bed. They are good for 8 hrs. I also take an Aleve/Naproxen at noon time and at bedtime/midnite - they are good for 12 hrs. You can mix Tylenol and Aleve because they are made of different substances. Be careful with the Tylenol not to take more than the maximum dose (4000mg). On really bad days I will take two 500mg regular Tylenol late afternoon. Also be careful of Vicodine as it contains Tylenol.

I hope this is helpful,

Deana

nan

5/30/11 12:57am

Its okay to be scared because being sick with a chronic diease is scary. But take your meds and take care of yourself. I was diagnosed at 24 and now am 58 and still going strong. (most of the time). Fight the illness, do not give into it. I have raised a family and now helping to raise my grandkids. Listen to your body and you will learn what you can and can't do. I have a friend who gave up when she was diagnosed and today she is in a wheelchair. She didn't do what the doctors said and didn't take her meds correctly, and now she is in bad shape.

Q: Just diagnosed yesterday and I am really scared.

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