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Deni1

Posted Friday, October 26, 2007 11:32 AM

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Last Login: Monday, June 15, 2009 10:58 AM
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Hey all, it has been a while since I have written. I hope you all are doing well and for those of you not, you are in my thoughts and prayers. I am sure this weather has taken a toll on some of you; I know I've felt it too. Last time I wrote, my husband and I were deciding if we wanted to start a family. Things have changed since then. My RA has gotten worse. I ended up in the hospital for a few days because I could not move. That was the scariest thing in my life I have ever encountered. Every joint kept getting more stiff, and by 11:00 at night, there was nothing I could do. My husband, god love him, carried me to the car and we went to the hospital. For three days, I lived on Steroids: a 200 ml. shot of Sulumedrol every 6 hours. Thankfully, I have not had a another flare-up like that. I am currently taking prednisone and Indocin. I was doing the MTX and indocin but I went off of the MTX because I was going to try to get pregnant. My questions are as followed:

What Drug combinations do you recommend? I know everyone is different, but I need to do something. I can't keep living my life in pain every day. My doctor is very much the type where I decide what drugs I go on. I really would like to try the biolical agents, but I am afraid of the side effects.

2) Does anyone have problems with their jaws? I have had difficulty chewing for the past three months. It hurts to chew. I asked my Rheumy about it and he did not recommend anything. He said it is possible to get RA in your jaw but did not suggest a solution.

3)Lastly, this is probably more of a statement then a question, but my neck, throat, and shoulder muscles have been really tight and paining for the past few weeks. Again, I asked the doc, and he didn't really say much. If anyone has/is experiencing this, what do you do to get it to stop. I tried going to a massage therapist, and did not have a lot of luck. The problem is that my muscles are so tight that it is restricting my shoulder/arm movement.

I thank you all in advance for taking the time to answer these questions. I sincerely appreciate it.
Much love,
Deni

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Annaart

Posted Friday, October 26, 2007 11:45 AM

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Deni, You are barely being treated. Some people wait until their RA is under control before tapering off meds and trying to get pregnant. That is because some people do not go into remission while pregnant.

If you have a lot of damage, how will you take care of the child. You need to get yourself better. You just need to be off MTX for 3 to 6 months before getting pregnant.

What side effects of the biologicals are you scared of? Most of the possible cancers are from having untreated RA, not the TNF's. The only side effect I have had was/is a headache after Humira. But it is totally sinus so if I keep my sinus's clear I don't even get that.

You might have RA in your jaw but not at the permament damaging stage yet...so please start treatment.

Anna

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Pam3

Posted Friday, October 26, 2007 11:46 AM

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Deni--

Wow! I'm so sorry to hear about your ordeal. That must have been terrifying.

I'm still newly diagnosed, so I don't have a lot of experience. I also wouldn't feel comfortable recommending specific meds, because that's a decision best made between you and your physicians. I'm sure many people here will be able to share their experiences and ideas for what's worked for them in the past and what hasn't. That sharing of experiences is one of the best features of this site.

My only thought is this. If it were me, I would want to focus on getting this monster of a disease under better control before starting a family. I understand the desire for kids. I wanted them, too, but never could have them because of a previous illness. Still, you have serious health problems right now, and you need and deserve to take care of yourself. Once that happens, however you choose to do it, you'll be better able to focus on having kids and giving them the care I know you'll want to provide.

Take care, and keep us posted.

Pam

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Annaart

Posted Friday, October 26, 2007 11:47 AM

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Wanted to add, we have a lot of babies here and pregnant gals and questions get asked all the time. You can do a search at the bottom of this main thread page.. pregnant is a good word.

Also if you don't get much response post a new one about getting pregnant or about meds.

Anna

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chris 2

Posted Friday, October 26, 2007 11:49 AM

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Hi Deni,

I'm so very sorry to hear about all the problems you're having and wish I could help but, as you say, everyone is different and what works for one may not work for another.

Personally, I take MTX, Folic Acid, Pred and Enbrel injections and that combo has helped me a lot. Please don't be intimidated by the side effects of any med that may help you. All of them can have some pretty strong side effects but that doesn't mean they always show up. What's better - possible side effects or the pain you've been through? Just remember that they ARE POSSIBLE - not carved in stone.

I have had the pain and stiffness in my neck and shoulders but it isn't so much of a problem now. First time I got so I couldn't move, my doctor was out of town and another physician who was taking her patients put me on a really strong med pack and Robaxin 4x day in addition to my other meds. Turns out it was OA rather than RA. That may be why your rheumy didn't treat it.

If this helps in any way I'll be so pleased. Please keep us posted as to how you're doing. We do care.

God bless,
Chris

Friends are just angels who have forgotten how to fly

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Pam3

Posted Friday, October 26, 2007 11:53 AM

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Anna, Chris and I were apparently all writing at virtually the same time and offered similar advice. Please find a way to take care of yourself.

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Joy125

Posted Friday, October 26, 2007 12:00 PM

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re: tightness in neck, shoulders.

I have RA in those areas but also tend to tense those areas cuz of general pain. Try doing gentle range of motion exercises or stretches. It may be easier doing this after a warm shower, or even in the shower. Or if possible joining a arthritis pool class -- one w/a warm pool.

re: drug treatment. There are some very effective treatments these days, more so than when I was diagnosed 30 yrs ago. Research them, ask questions here or w/your doctor. Only you can weigh the risks and benefits. Good luck and take care.

________________________________________________________________________

I have learned that the greater part of our misery or unhappiness is determined not by our circumstance but by our disposition. MARTHA WASHINGTON

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Cindyss

Posted Friday, October 26, 2007 12:43 PM

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Deni- I have severe RA and just had my jaw flare up. My dr told me to put heat packs on it and it helped. Also if you haven't done it become friends with your dentist. I also have gum iflamation bad enough to effect the bone which is being agressively treated by my dentist. It is in the molars so it is not easy to tell the difference sometimes. I made an appt with him for next week just to check it out. Also check into getting therapy to help your stiffness. You really aren't being treated agressively drug wise. Have you considered a second opinion? Hope you feel better soon. Cindy

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Shu-Shu

Posted Friday, October 26, 2007 1:16 PM

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Hi Deni,
I'm sorry that you're having such a rough time.

1a. meds -- talk to your doctor about your specific concerns regarding biologics. In my opinion the benefit outweighs the risk, but you and your rheumy need to decide what's safest for you.

1b. taking care of a baby -- I was diagnosed 2 months after my 4th baby was born. I didn't have a choice about dealing w/ RA and a newborn. Yes, there were days when I couldn't get out of bed by myself, that I couldn't do even the simplest tasks, but we did OK. This is part of the reason that God gave babies two parents. There were many times when I could not have taken care of the baby by myself, but there are always people willing to help.

2. I have problems w/ my jaw occassionally too. It's just another joint affected by RA. When my RA is in control, the jaw is better.

3. I have had tightness and pain also. What has worked for me is soaking in a hot tub and taking Tai Chi classes. Tai Chi is great for range of motion.

Take care,
Shu-Shu

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twister597

Posted Friday, October 26, 2007 2:55 PM

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Deni,
Sorry you have had such a rough time. I am on the combo of MTX 25mg inj,Humira,folic acid and predisone as needed. This seems to be working for me right now. I know it's scary to read all the "possible " side effects of the drugs we take. But you have to consider,do I take the chance of side effects to help me feel better and slow down the progression of this monster or just suffer and let joint damage keep happening?? I decided to take the chance and try to slow down the progression and at least have some quality of life.

I haven't really had any problems with my jaws,but I do suffer the tightness in my neck/shoulder area. Much of the time it's due to stress at work or my falling asleep in my chair with my head and neck all contorted!! But for me that's when the predisone comes in handy or a good dose of ibupropen.

Please take care of yourself and keep us updated.....
Carolyn

You do not learn anything the second time a mule kicks you!!!

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Shannon15

Posted Friday, October 26, 2007 4:51 PM

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I've found that for the jaws and shoulders that using moist heat works the best. My jaws get so inflamed I can barely chew and it even hurts to talk. Going to the dentist is real fun also. (Just got over a jaw flare and lost 15 lbs. Not a diet plan that I would reccomend).
Take care,
Shannon

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Deni1

Posted Friday, October 26, 2007 5:22 PM

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Last Login: Monday, June 15, 2009 10:58 AM
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Thank you all very much for your comments. I made an apt. this afternoon with Rheumy. I go Monday at 1:30 to discuss my drug options. I sincerely appreciate all of your comments and honesty. I will keep you posted on my progress. Thanks again!!!

Most Sincerely,

Deni

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Stonewoman

Posted Monday, October 29, 2007 9:43 PM

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Last Login: Thursday, July 31, 2008 1:03 PM
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Deni
hope your doctor visit went well. I'd consult an OB doc before trying to conceive. I hope you and yours are able to have a child with all the joy.

I wanted to ask Anna who responded to you:
" What side effects of the biologicals are you scared of? Most of the possible cancers are from having untreated RA, not the TNF's."

Anna
do you recall where you read or were told that untreated RA causes cancer?
I'd like to read up on that as I don't recall seeing that before.
Dee
Dee

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NikkiLynn

Posted Tuesday, October 30, 2007 6:09 AM

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While I don't presume to speak for Anna, I think this is what she might have been talking about:

Rheumatoid arthritis (RA) is a systemic autoimmune disorder that primarily attacks the synovial lining of the joints. This progressive disease leads to considerable pain and disability. Morbidity is high if left untreated. Mortality is also increased with an average of 10 years life lost due to inflammation-related increased rates of infection, lymphoma, and cardiovascular death.

http://www.medscape.com/viewarticle/553515

Also patients with moderate to severe RA have a increased risk of Lymphoma:

A new study sheds more light on the connection between RA and lymphoma, and it highlights those patients who are at greatest risk.

"Chronic inflammatory conditions such as rheumatoid arthritis have been associated with malignant lymphomas," explained Dr. Eva Baecklund and colleagues in the study published in Arthritis and Rheumatism

With the goal of determining which patients with RA are at greatest risk for developing lymphoma, Baecklund looked at a registry of almost 75,000 patients with RA. Within this population, 52 percent were classified as having a moderate level of RA, meaning that between six and 20 joints were affected by their disease, and 23 percent were classified as having severe RA, affecting more than 20 joints and seriously limiting their physical abilities. Additionally, 378 had been diagnosed with a malignant form of lymphoma between 1964 and 1995.

Comparing those RA patients who were diagnosed with malignant lymphoma to those that did not, Baecklund noted that those with a low degree RA had the lowest risk of developing lymphoma, while those with a moderate level of RA had seven times the risk. Those patients with the highest level of RA had 71 times the risk of developing this cancer.

"The risk of lymphoma is substantially increased in a subset of patients with RA: those with very severe disease," wrote Baecklund.

http://sciencedaily.healthology.com/arthritis/article3960.htm

http://www.personalmd.com/news/a1998071703.shtml

They added, "Conventional medical treatment to suppress and alleviate disease activity is not by itself a risk factor for lymphoma. Rather, it is possible that aggressive treatment may reduce lymphoma risk by reducing cumulative inflammation."

Complications of Untreated Rheumatoid Arthritis

Cancer

The risk of lymphoma in patients with rheumatoid arthritis is independent of immunosuppressive therapy and is two to three times that of the general population.

From the American Family Physician

Lynn

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Annaart

Posted Tuesday, October 30, 2007 8:26 PM

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Thanks Lynn, for repyling it was a long day at work.

http://www.hss.edu/conditions_14612.asp

The important paragraph relevant to you>>>
"In order to place this study into perspective, it is important to understand rheumatoid arthritis. It is a severe, systemic, autoimmune disorder that, without optimal treatment, will lead to joint damage that can not be reversed, profound loss of function, and shortened lifespan. The RA inflammation also has a negative, spill-over effect on the rest of the body, and poorly controlled inflammation can lead to the development of premature atherosclerosis, coronary artery disease, osteoporosis, and lymphomas. "

Deni, I think you posted another thread about your doctor visit today. Its a good idea to see an OB, maybe they can help you get pregnant quick.

Anna

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lifechanges9112

Posted Wednesday, October 31, 2007 5:59 AM

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Dear Deni,
I am so sorry that this is happening to you at such a young age and when trying to start a family.

Don't have to much advice, I am new to this. But, wanted to encourage you that one day you will have those littl ones you want so bad. You have a wonderful husband that a lot of people wish they had. Keep reminding yourself of the good things in life.

sincerely lc

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