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Rheumatoid Arthritis
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Posted 2/15/2013 12:11 PM (GMT 0)
Good Morning!  My name is Skippy. I was recently diagnosed with RA after years of pain and the doctors suspect I have another underlying condition, but haven't pinpointed it yet. Fingers crossed.

I just joined Healing Well a few days and I have learned so much so far. I want to thank you all for being in this forum and for being so generous in sharing your experiences.  It has certainly gone a long way to easing my fears.

Hope y'all have a great weekend. :)

Posted 2/15/2013 7:54 PM (GMT 0)
Welcome, Skippy. I know that actually having a diagnosis helps. It doesn't lessen the pain, but at least it kind of validates it. When you know you're sick, and no one knows what is wrong, you begin to feel that you are going crazy. You also feel that everyone thinks you are a cry-baby or hypochondriac.

This is a really good forum...the best I've found.
Posted 2/16/2013 6:57 AM (GMT 0)
Hi and Welcome to HealingWell. People on here are very helpful.
Also they are very caring.
Posted 2/16/2013 11:57 AM (GMT 0)
Hi Skippy

yes the relief feeling when you get even a part diagnosis is great

i know the Doctor thought i was crazy when i thru tears i was Thanking him

Welcolme to the site look forward to talking with you as time goes on

 

Posted 2/16/2013 10:29 PM (GMT 0)
Thank y'all so much for the warm welcome. It is so nice to find people that understand and know so, so much. I have been reading up and trying to learn more.

And Badday I did the same thing. Cried, oh goodness, did I cry, but my doctor understood and thank God my husband was there to give me a strong hug. He is as happy as I am.

I hope y'all have a peaceful, relaxing, pain free weekend. Everyone deserves a break. tongue

Take care.

Posted 2/17/2013 9:30 PM (GMT 0)
well i'm glad to hear i'm not the only crybaby! i also have stage 4 non hogkins lymphoma. i've been on ALL the ra meds that my dr thought safe for me, because of the lymphoma i wasn't able to take the correct meds. i've been on orencia weekly injections for quite some time now, but the dr says it has done all it's going to do and again has recommended rituxan infusions. i cancelled on it once as i'm afraid to take it. the metho and sulfa and all the others made me so sick. now i don't know what to do. this forum is very interesting.
Posted 2/18/2013 2:00 AM (GMT 0)
Flutterby,
I had lymphoma in 2006 and lost my spleen. I was able to stay on plaquenil and steroids until now. I had the Rituxan infusions last month. The only problem I had was some itching which they gave be benadryl for. I have not no ill effects. I think I can say i feel better.

Rituxan is easy on the liver and i had liver problems in the past.
Posted 2/18/2013 3:10 PM (GMT 0)
thanks for your reply bluejeans. i've also been on plaquenil for a long time. one of the side effects i got from that was cataracts and had lazer surgery. my eyes are still not good, but i'm still on the plaquenil. dr took me off steroids when i started orencia. i got  a little better on those injections, but it has done all it's going to do, and that's not enough. were you pre treated before your rituxan infusion? did it really take 6 hours? i might give in and try it.  i have another big scan to check the lymphoma soon.
Posted 2/19/2013 4:15 PM (GMT 0)
I am amazed at the heinous side effects to the plaquenil. I know how debilitating the pain is and the destruction the RA does, but I am wondering, is it worth it to risk blindness or death? Isn't there anything else. It can get pretty depressing and I am incredibly upbeat. This makes me pause tho'. How do you guys do it?
Posted 2/19/2013 4:35 PM (GMT 0)
the rheumy insists that i stay on the plaquenil. since the orencia injections seem to have done all they're going to do, he's suggestd once again that rituxan is my only next step. i'm scared of that, but might end up giving in.  what about your lymphoma? and your experience with rituxan?
Posted 2/20/2013 4:32 AM (GMT 0)
My eye Dr. says its rare for eye problems to be seen with plaquenil.  I have been onit for aat leat 8 years with no problems. 

I had more problems with my stomach adjusting to it than anything eles.

The rituxan has done well.  They gave me the solumedrol, tylenol and benadryl before the infusion.  I think it is helping. 

Posted 2/20/2013 1:09 PM (GMT 0)
actually, my eye dr would not tell me that plaquenil caused my eye problem, even when i asked. it was his partner that told me. i already knew from the research i did.
Posted 2/20/2013 4:27 PM (GMT 0)
Bluejeans you say no problems with the plaquenil for 8 years, do you mean no eye problems? Or no problems except your stomach problems? The reason I ask is you are post Lymphoma, and doesn't plaquenil cause that in some cases and isn't that, like, a huge complication if it does? I am asking honestly, because from what I have researched and in talking with my Doctor she says yes to both eye problems and possible lymphoma. So confused sometimes. Thanks for any insight you can give me. :) Hope you are having a great day.
Posted 2/20/2013 5:05 PM (GMT 0)
i have stage 4 nh lymphoma. my dr is being very careful what meds he puts me on. i've been on plaquenil from the start, and he's increased it.  i've had it for about 2 years. the lymphoma and ra were found about the same time, 2 years ago. i've been through the ringer with all of it.
Posted 2/20/2013 7:52 PM (GMT 0)
Thank you for your answer too flutterby. If you don't mind me asking do they know what caused the lymphoma? If it is too personal, I understand - I don't want to overstep. I am sure you have been through the ringer with it all. It sounds like so much. I know you have probably heard it said before but I try to just be me, which is pretty positive 99% of the time. A sense of humor helps. If I couldn't laugh and my family wasn't there laughing at the absurdity of all that is wrong with me, with [it seems] something new every week, month, year thrown in, I would fall to pieces. But, I love life and am having too darn good of a time to give up just yet. I figure God must have some pretty massive plans for me if I lived through my last two hospitalizations. Right?
Take care and I'll be thinking of you in my prayers today. Smile LOUD! Life is a gift. [Although it doesn't feel like it sometimes, I know.]
Posted 2/20/2013 9:11 PM (GMT 0)
i don't know what caused the lymphoma or the ra. i hear they go hand in hand though. don't worry about getting too personal, i'm here to share. i like you always have something wrong. i just got over a three month bout with pneumonia, for the second time. before they figured out it was ra, i had two surgeries on my knee and was sent to an infectious disease dr. i ended up with a pic line, for iv antibiotics...three of them, for a long time. luckily my husband was able to do that for me at home. i'm just screwed up from head to toe, lol. you're right about trying to keep a sense of humor. sometimes it's hard, but my family helps. thanks for the prayers. i'll send some your way too.
Posted 2/21/2013 1:34 AM (GMT 0)
I do not know what caused the lymphome or the sjorgrens or lupus. It all started with a c1 esterase defieiency and acute swelling which is why they removed 5 ft of my small intestines. I went to a large teaching hosp after that and the first thing my immunoligest told me was that I would have either lymphoma or lupus or both.

My blood work was the pits my white count was like 2, I was extremely anemic and had to have iron infusions. I could hardly put one foot in front of the other. My spleen began to grow and my rheumy thought it was lupus. She and my oncology dr wanted to remove it. My oncology Dr wanted a cancer surgeon to do the surgery. When they removed the spleen all my blood work righted itself and the test came back lymphoma. I am blessed. They have watched me for 7 years now and no return of the lymphoma and I still see the oncologist once a year. They think I am clear now. He approved me for the rituxan.

I have been written up in the medical journals for having lymphoma and lupus at the same time.

Plaquenil is a malaria drug. It works on lupus and ra, I am not sure they know why. If it causes lymphoma, I am not aware of it.

After this came sjorgrens and not apparently ra. I have scolosis of the spine as well as bulging disks and arthritis, djd and ddd.

I just try to exercise, use heat and ice, take my meds and keep a posiitive attitude. One day at a time.........

Good luck, and hope you feel better.
Posted 2/21/2013 2:58 AM (GMT 0)
Wow, flutterby that IS a lot and quite amazing. So much to go through, but a great attitude. I would be afraid to write out everything with me, just because it compartmentalizes it and seems to define me [to myself] but if I treat each condition or disease with the correct attention and individual care I don't feel or act as sick as I really am. [Did that make any sense? ::laughing::]

The fact that they wrote that case up on you. . . well, makes you famous! :) But good for you, because your case will help so, so many people. That was very generous of you I must say.

I am on 40 mg of prednisone [in addition to everything else] tonight because I have developed bronchitis and so the doc just upped what I was already taking. 20 mg wires me, and at 40 mg I may never sleep again. So if you need anything, you know where to find me. I really appreciate all your responses. I am learning so much and it helps. Thank you.

Posted 2/21/2013 8:21 AM (GMT 0)
Hi skippy, welcome to this board. I know I am a bit late to welcome you. I hope the diagnosis goes better with you. Everyone over here are very much friendly, comforting and would never deny for any help you seek for. Have a wonderful journey in this world. :-)
Posted 2/21/2013 11:02 PM (GMT 0)
Hi Skippy, to answer one of you earlier questions of how we cope taking toxic meds. I'd say we cope because the disease and its symptoms get so bad its worth taking a risk to be able to have a better quality of life.
I also find that your body slowly adjusts to the meds so that they don't seem so badf aftera while.
When I first started on methotrexate I felt so ill. I looked grey. I had to come off it and go back on in small increments until I could manage it. Now I am on 20mg per week and feel fine!
But they re toxic so drink lots of water and watch your alcohol intake.
Goodluck with it all, best wishes, golitho
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