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Diana Nelson
Posted Tuesday, November 03, 2009 9:32 AM


 

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Last Login: Tuesday, November 03, 2009 9:35 AM
Posts: 1, Visits: 2
Hello,

I am a 30 year-old female that has been dealing with Rheumatoid Arthritis for 28 years now. Twenty-eight years is a long time to fight something and I am having one of those days where the battle seems impossible. I don't have many of these days as I am usually a very optimistic person, but I have been having them more recently in the past few months. I go in for my Rituxan infusion today, and I suppose I always do get a little nervous and intimidated when I have an infusion. This is the first of the 2 infusion cycle I go through every 6 months or so. I find that I am not making it as long between cycles as I did when I started them a little over 1 year ago.

I guess in a round about way, I am looking for someone that uses the Rituxan treatments, and has time to talk with me to let me know how they are handling the treatment. I have a lot of side effects from the medications, and they are hard to deal with at times. I do have a support network at home, but it is from people that do not have RA, so they don't particularly understand what I am going through. I also find it very difficult to explain to my loved ones what it is exactly that I am going through so they can try to understand.

I am the only one in my entire family tree that have ever had RA, and it started as Juvenile Rheumatoid Arthritis. My family health history has only included osteoarthritis.

I have also recently been diagnosed with Fibromyalgia. My doctor has not prescribed anything to me that will help with the pain and weakness I have in my muscles due to the FM, but he has also told me that with my other health issues there isn't much that can be done right now. When I am not in pain, I tend to shake a lot because of the strain that is put on my muscles. This is something new to my family, so it makes them nervous to see me shake. It doesn't hurt me though, so I really don't have a problem with it, other than the embarrassment factor.

If there is someone out there that would be willing to share their experiences with me just to help "pep" me up on my low days, that would be greatly appreciated.
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WarmSocks
Posted Tuesday, November 03, 2009 10:00 AM


 

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Last Login: Today @ 1:57 PM
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Diana, I'm not on a biologic, but there are lots of people here who are and a few of them will likely jump in soon.
I just wanted to welcome you to the forum and let you know you are not alone.

 

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

Post #4254582
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Aprilfreelance
Posted Tuesday, November 03, 2009 10:47 AM


 

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Last Login: Wednesday, November 18, 2009 10:22 PM
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I am in between RA meds right now, so I can't help any on that front. I am taking Lyrica for nerve pain from peripheral neuropathy, and it is a med that used quite often to treat Fibro. I'm curious why your doc does not think that would help?? If it hasn't been discussed, maybe you could bring it up with your rheumy and find out why.

Age 36, Dx May 2009, waiting to start new meds after bad experience with Plaquenil.

The Bible in a nutshell: First half - be nice to God; second half - be nice to people.
Post #4254635
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Grandpavan
Posted Tuesday, November 03, 2009 12:38 PM


 

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Welcome to the board. You certainly have a lot more experience with RA than I do but you seem to be much less well controlled than I am. I've only had RA for 8 years and I am pretty well controlled with Methotrexate and Remicade. I don't know what treatments you have tried in the past but there are many that are available and I hope one will work well for you. I have heard some good things about Rituxan and I hope it starts to work well for you.

Many of us on this board find the "Spoon Theory" to be helpful to explain how RA affects us. There is also a Letter to those Without Chronic Pain pinned at the top of this forum that is helpful. Also most people have no idea what RA is but they think all arthritis is an old person's disease that everyone gets after a certain age. I hope you find these helpful in explaining RA to others. For those closest to you perhaps you could have them go to a rheumatologist's appointment with you to hear from the doctor about RA.

I don't have fibromyalgia but many people here have it along with RA and they do get something for it. My foggy memory says Lyrica or Flexeril but I'm not at all sure of this. I hope some others will help you. I have no idea about the shaking and have not heard of that symptom except for some types of palsy. However, I'm not medically trained. I do hope you get effective treatment. God bless.

Spoon Theory – explaining RA to others
http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php



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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Pam3
Posted Tuesday, November 03, 2009 12:50 PM


 

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Diana,

I'm not on Rituxan but can certainly understand your exhaustion, especially after you've lived with this disease for so long. I hope you find some lasting relief soon. We do have several members here with Rituxan experience, and I hope they'll post their insights this afternoon or this evening. Perhaps you might want to edit your original post to add a subtitle that mentions Rituxan. That might more quickly attrach those with experiences to share.

Take Care,
Pam
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Jay in Sarasota
Posted Tuesday, November 03, 2009 2:00 PM


 

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Last Login: Today @ 8:07 PM
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Hi Diana,
I think I can toss something in to cheer you up a bit maybe. I started Rituxan in March 2008 and have had 6 sets of infusions. I tried Enbrel and Humira before Rituxan. I pasted (or tried to) a spreadsheet below that shows my infusion dates and the interval in both days and weeks between dates of the 1st of each pair of infusions. You can see that I kept needing it sooner and sooner but poof something has happened. I was expecting to be on the phone around the end of September (11 weeks) saying I really need it again but I'm hanging in there okay at the longest interval I've gone ever. I'll just keeping taking it one day at a time. I've only had RA for 3.5 years and have never had any hope of getting better but now I at least have some hope.

I see that you're very new to the forum and I know that I'm not alone in hoping you'll post a nice profile, however brief, to describe your life with RA. I think most of us will be fascinated to hear about living with RA since the age of two! I hope my Rituxan comments give you some hope (and I hope the spreadsheet I pasted below isn't a scrambled mess grrrr).
Jay
p.s. Grrrr again. Neither spaces nor tabs work in the table so I used the underline symbol. I hope this is readable. The point I've tried to make is that today I'm at 116 days since my last infusions and that's the longest interval I've made.

___________________________Interval_____Interval
_____1st Infusion____Followup___Days______Weeks

1____28-Mar-08____11-Apr-08
2____18-Jul-08_____01-Aug-08___112______16
3____31-Oct-08____14-Nov-08___105______15
4____30-Jan-09_____13-Feb-09____91______13
5____24-Apr-09____08-May-09____84______12
6____10-Jul-09_____24-Jul-09_____77______11
Today_11/3/2009_______________116_____16.6___<--Since July 10th
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Great Granny
Posted Tuesday, November 03, 2009 11:41 PM


 

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Last Login: 2 days ago @ 8:56 PM
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Hello Diana.

I haven't started a biologic, but probably will in a few weeks. I can't offer any help or info on that.

I'm sorry you're feeling so bad right now. Try to hold on. I'm sure you know that it won't always be this way; that better days are ahead. I'm just praying that they arrive quickly.

I understand what you mean about family and close friends. Some of them really try to understand, but they just don't. They are very sincere with their empathy and sympathy. And while that means a lot, it would help if they really understood. That's why this board is so important. There is someone who understand what you're experiencing. We all may not have experience with every disease and/or questions you have, but someone will have knowledge about each one.

I'm sure you know that you came to the right place to vent. You are certainly entitled to be frustrated, even angry. We get it. Come as often as you need or want. We'll be here for you.

Hugs and prayers.
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Staylor875
Posted Wednesday, November 04, 2009 7:52 AM


 

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Last Login: Monday, November 09, 2009 7:36 PM
Posts: 14, Visits: 48
I am sorry to hear you are suffering so bad. I am not on Rituxin but I am on Enbrel. I was orignally on Remicade (about 5 years), Humira (not long at all) and now Enbrel. I keep telling myself the Enbrel is working but I have been in nothing but pain for about a month so I don't know. As for the Fibromyalgia, I am on Cymbalta and it has been a miracle drug. It didn't take long before my pain from the fibro had disappeared and it is also an antidepressant which I needed as well. I would go back to your doctor and get him to give you something for the fibro. My Rheumatologist told me he doesn't treat Fibromyalgia so my general doctor took care of it. I hope you get some relief soon. Sandy
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Gramma
Posted Wednesday, November 04, 2009 2:27 PM


 

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Last Login: Today @ 1:43 PM
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Hi Diana,

Welcome to the forum! Glad you found us, but sorry you are in such pain and exhaustion.

Did you ever look up the side effects of Rituxan? Two of them are weakness and shaking. There is also a thing called benign essential tremor that causes shakes, but it usually runs in families.

I am having a problem with weakness on one side, and my family doctor thinks it might be from spinal stenosis. At my age, it's almost a given. Have you had an MRI recently? It might show something besides Fibromyalgia.

Whatever the cause, please keep posting and let us know how you are coming along. We are all here to listen, comfort, and share advice and experiences.

Hugs & Prayers,

Gramma Ellie
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Aimee (Aims)
Posted Wednesday, November 04, 2009 5:46 PM


 

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Last Login: Yesterday @ 9:57 AM
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Jay, I sent you a message about your spread sheet in your message box here.

.8cc mtx, Humira, folic acid, prednisone, trazadone, ultrum 300, lortab 10, cymbalta, lasix, hctz and cal w/ vit-d
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Kayleen Elliott
Posted Wednesday, November 04, 2009 6:25 PM


 

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Last Login: Today @ 8:41 PM
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Hi Diana,

I've had RA since age 14 and am 41 now, so though you have me beat by a few years I understand so completely what you are saying. I'm tired too. It does get to you after awhile, because we're "pre-biologics", and so have a lot more deformity and disability issues to deal with. I recently had a finger fused, and had to come off my pain pill too quickly, and ended up with the shakes. Wow. Those really make a difference in the quality of life. For me, it made everything so much harder to do, because I had no energy. I felt it was a kind of indication of just how sick I was. Having had this disease for so long, I feel like I can now hear a little of what my body is trying to say to me, so having the shakes is the equivelent of "there are major things wrong here that can possibly be helped only with the passage of time." That's what ended up happening -- I had the shakes for about 3 months (I seem to go in 3-month cycles in a lot of RA-related issues) and they've finally left.

Rituxin will be my next drug to try if the Orencia I just started three days ago does not work. I've self-diagnosed myself as being "drug-resistant" -- not too difficult because so far no drugs have worked for me. I've been on nearly everything, beginning with gold shots and ending with a very bad reaction to Kineret. I took a break from biologics, during which time I weaned myself onto Minocycline, which, so far, is the only drug that has helped a little. It was difficult for me to get on because of the side effects (Sjogren's flare, mostly) but I just went very slowly and am now on 100mg of the pellitized version twice a day.

So far the Orencia is just making me very tired -- I can feel my immune system took a real whallop -- and we'll see what the next two infusions bring. Though I'm not on the same drug as you -- I believe Rituxin is a little harder on the system -- I feel I can relate at least to the being sick and tired of having this chronic illness. What's worse, I am NOT a peppy person. I am a glass-half-empty person and I suppose I always will be. I went through a peppy phase awhile back, where I started a successful RA support group in conjunction with a local hospital, and volunteered at the local senior center, which was a hoot. I had to stop because I began to flare so badly.

Regarding your issues with pain, I've found the likelihood of doctors to give pain meds depends on what part of the US you live in. If you live in a laid-back state, like California, they'll really work hard with you to try to control your pain. If you live in the Mid-west (I'm in Ohio) you may have a much harder time getting a doctor to try to help you. I lived in Palm Springs for two years, and recently returned to Ohio to be with my husband. Culture shock! It's much harder to not only get pain meds here but to find a doctor who will prescribe them. I'm finding this very frustrating, because it's an area that needs to be addressed, not ignored. What, we're just supposed to live with it, day in and day out? I don't understand the hesitation but suspect it has something to do with drug control being different in each state. My rheumy is offering only Tramadol and Trazadone, both of which I've been on and neither of which have worked. She has continued my prescription for Neurontin from a preveious rheumy, but I can't say for sure that it's doing anything. I'd have to go off of it, go back on, back off, ect, to be sure, and I don't have the energy to do that right now. (I should add I've been on a good number of anti-depressants, Cymbalta and Lyrica being the two most recent, and could not tolerate them.)

I've met a lot of people with RA, young and old, and am amazed at the peppy ones. They're like energizer bunnies. I suppose it helps to have something you do in life that you are passionate about (which I don't) and I would think it would help to have children (which I don't).

I feel like this is turning into a downer reply, but I also feel like a battery running dry. I'm only 41. ......41. So I have at least 20 more years of this? Hmmmm. I, too, have an excellent support system, but it's not helping like it used to. I guess it would only be natural to get tired of being sick every day of your life after awhile. So, while I'm not exactly lifting you up here, I'm understanding. I hope that helps. Since I have yet to figure out the mysteries of myProfile, feel free to email me at kayleen163@gmail.com. You can cry on my shoulder any time, OK?
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