Co-occurring disorders

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Dianna89

Posted Thursday, February 15, 2007 9:13 PM

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I have been on Humira and mtx for the last year and a half. On 02/13 I was diagnosed with malignant melanoma and advised to stop the Humira. I have yet been advised what I can use for the RA, and have appointments with surgeons, rheumy,and GP. Has anyone else been diagnosed with another problem that "interferes" with their RA treatment or vice versa?

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starshine

Posted Saturday, February 17, 2007 3:45 AM

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I was taking MTX and went into the hospital with a bleeding ulcer. When they did the scope, they found a more alarming disorder. I have esophageal varicies which they thought was due to cirrhosis of the liver from the MTX. I was told to stop the MTX. A liver biopsy showed no liver damage so I was able to resume the MTX. Well, some time later, I had another GI bleed which turned out to be from the varicies which had gotten much larger and more numerous and were bleeding. Again, I stopped the MTX and started Arava which helped my RA better than the MTX. Then, I developed a rare form of psoriasis, palmo-plantar pustulosis. Back on the MTX. I am also on Enbrel. Everything seems to be doing ok on the current treatment. BTW, my mother-in-law survived malignant melanoma, stage 4. Good luck. BJ

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Dianna89

Posted Friday, February 23, 2007 3:08 PM

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Thanks, BJ. I really appreciate your info. I found out from my rheumy that the biologicals are relatively new so not much is known about them and what they may or may not cause as far as other disorders or interactions that may occur. He put me on Plaquenil while I am undergoing treatment for the melanoma, and says that I might, eventually, be able to go back to the Humira. I have also started taking acai active juice twice a day in the hopes that something natural will do what the synthetic stuff can't-I hate all the pills! In the meantime, I just keep on keeping on!

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Tammy13

Posted Monday, June 04, 2007 3:52 PM

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Best of Luck to you, I am currently on Orencia and have been for the past 7 months. This is the last Rx, so hopefully results will start soon. My problem is I am also on Coumadin for a DVT that I had in my leg and through diagnosing the DVT it was found that I have a genetic clotting disorder, so Coumadin forever. The only Rx for RA that didn't seem to affect the Coumadin was Enbrel, however I continue to have severe RA that is not responding to treatment and the treatment that is given can't interfere with the anti-coagulants. A never ending circle.

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DeafEskie

Posted Monday, June 18, 2007 5:24 AM

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Dianna,

Ouch Ouch OUCH to the dxes...

I need to share my story of me with the biologics....These are AWESOME meds you know...but, there is one thing I wish the pharmacetical companies would do, and do it fast--improve them to NOT cause the one thing that it caused me....

You see, I was born deaf-blind due to congenital rubella syndrome, aka, CRS. Yes I am one of the "rubies" from that big epidemic of the '60's. Today, I am 41. Currently, I have the following health issues--get ready, this is mind boggling to those that are probably only used to dealing with RA, OA, or other more "common" health issues: Psoriasis, Psoriatic Arthritis, Major Depression, Glaucoma, Endometrosis (most removed via hysterecomy 2003), Irritable Bowel Syndrome (IBS), GERD (Acid Reflux), Fibromyalgia (FMS)/Chronic Myofasicial Pain Syndrome (CMP), Osteoarthritis of the spine, Schuermann's Disease/Kyphosis, Premature Ventricular Contractions (PVC's), Narcolepsy, Hypothyroidism and Congestive Heart Failure.

Yes, you read that right. Conogestive Heart Failure. I was born with a heart defect, Patin Ductus Arteriosus(sp). Doctors believe that a combination of things probably led to the CHF: the heart defect, which was corrected when I was only 7 weeks old (one thing weakening my heart right there), plus the fact that I smoked for 18 years--quit almost 5 yrs ago--yay--and....the last "weakening" factor? The BIOLOGICS.

The Biologics have SODIUM in them. Several different types too. This is why, I think, that those of us who are on the biologics....we need to get a petition going...and get awareness out to the AF, the NPF (National Psoriasis Foundation) and more. Let them know we need help to get the pharmacecial companies to revise these medications to not have so much sodium in them. To develop them in a better way so that those of us with CHF can continue to take them.

I was origionally on Enbrel for a year and half. It did not help my Psoriasis much. About six months into the treatment I began to notice my ankles were swelling. Thought nothing of it because I had just had a hysterectomy too--and we all thoguht it was my hormones. What a laugh. I ended up with a cardiologist because doctors found an arrythmia (the PVC) in Feb 2006 while undergoing video eeg testing to rule out seizures. EEG showed Narcolepsy, and they started telling me I have this heart issue...so I refer myself to my best friends cardiologist. Few months later another friend noticed how BAD my edema was....she happened to be with me, and made the doctors really take a GOOD look. Thats when the dx changed to CHF....

So... my advice? Only stay on the biologics if they really, really, truly benefit you. I am now on Humira--and have been for a year. The humira put my Psoriasis in 98% remission. YES REAL remission!

For now I remain on Humira, unless my heart weakens further, then I will have no choice. At this time I am working on losing weight, am in process of moving to Houston in about six weeks. Once there, I plan to join Curves and get the rest of the excess weight OFF, as I am sure that will help everything else, including strengthening my heart. Last but not least, my husband of almost two and half years will ***FINALLY***be joining me, to make us a one household marriage by September. That will be the ultimate de-stressor of all, methinks.

Good luck....hope my experiences have helped some of you to have a better insight on all this.

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Dianna89

Posted Thursday, July 12, 2007 11:47 PM

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WOW! Alot has happened. My rheumy took me off of the mtx because my liver enzymes were weird. Being that I do not have insurance, I cannot afford to go get more blood work done. I am on Arava, but until I can get my meds filled through PPA Rx, I'm going without. Social Security is taking their sweet time, and the attorney on the case says we just have to wait. In the meantime, I do appreciate all of the info that has been posted. At least I know where I can get some useful info on all of this. I hate this, and am really getting to a low point, I think. I've started swelling pretty bad, but without insurance, I can't afford to get into either my primary doctor OR my rheumy. I apparently don't qualify for Medicaid since I have not been approved for SSI. So I am now asking for everyone's prayers to get me & my family through. Thanks, everyone for listening and understanding. It really does mean alot.

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LazyDazy

Posted Wednesday, September 19, 2007 3:37 PM

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I had my share of quirky stuff going on before I was finally diagnosed with RA: tachycardia, IBS, migraines, high triglycerides, history of bleeding ulcers, GERD, adult-onset asthma, and carpal tunnel syndrome in both hands. About 12 years ago, the pain of the carpal tunnel precluded sleep, so I had surgery on both hands, one month apart. I had enormous relief from the surgeries. Doc said I must have had a high pain threshhold, because it was one of the worst cases he had encountered. So, all's well. No. I began having "trigger finger" in both fingers and thumbs which he treated with steroid injections. When it didn't stop, he ordered new x-rays and blood tests. His nurse called me at work to say that my blood work showed some type of autoimmune condition, and referred me to a rheumatologist. Diagnosis was delayed while they sorted out symptoms, as I had several "marker" symptoms of lupus, but not enough to confirm diagnosis. Finally, RA became certain. I had years of functional relief from Vioxx, but when that wasn't enough to allow me to work and live well, I was put on Plaquenil and Vioxx. Magic combo! I had five good years, then Vioxx was removed from the market. I was changed to Mobic, which I have never been able to notice any relief from, but Dr. continues it. Then, the symptoms went into full flare. Every movement was agony. Started on methotrexate. Things coasted along okay for a while, but then I had a series of flares. Went on Remicade IV monthly. Stuck with it for four years, even though the pain and fatigue were harder and harder to deal with. I needed steroid injections several times and increased my pain medication strength. Finally, dr. and I agreed that it was no longer effective for me. I changed to Enbrel weekly injections. Better pain relief than Remicade, fatigue levels continued. Then, my liver began to show some damage, and my methotrexate was reduced by half. A few months later, my opthamologist discovered significant eye problems that had developed in only three months. Plaquenil was stopped immediately, and I am no longer a candidate for it. Pain levels went up, but eyes improved. That was a relief, because I have severely impaired vision anyway. Then the next thing I knew, RA doc calls and says I must stop methotrexate completely due to more liver damage. Won't be a candidate for it again. Since I have almost no immune system (recent blood work shows declining white counts), I have a lot of upper respiratory infections, UTIs, and any virus going around. I even developed a wart on my face, which the dermatologist said I probably contracted by touching something with the virus on it and touching my face. It took two freezes to completely get rid of it. Every time I develop an infection, I must go off of my Enbrel until meds beat it. Now, I carry antibacterial wipes in my car and gel in my purse. I had to stop working, and I became very depressed at the significant decrease in income, the loss of a career I had invested six years of college, certification testing by the state, and two years of supervision to qualify for. I now have a therapist and a significant dosage of an antidepressant. Because of my years of employment, I qualified for a private disability coverage (haha) and ERISA enabled me to continue to purchase individual insurance coverage, which cost as much as my house payment. The copays for meds and dr.s is in the stratosphere. Often, I go without until the cash is on hand. I just recently was approved for SSDI and Medicare A&B, because it took over four years to get which allowed immediate access to all. Now I am looking for a medicare supplement plan and prescription drug coverage that won't penalize me in premiums due to disability under age 62.

Sorry to ramble on. This is my first time to write about this, and thought I was condensing. Guess I needed to vent.
I pray that you get financial help from some source ASAP. Don't give up on SS. They are counting on a lot of us doing that.

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Dianna89

Posted Friday, October 26, 2007 6:58 PM

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Thanks, LazyDazy. Good news to report--the SS Disability was FINALLY approved. "They" decided that since I also have to deal with melanoma, I am finally disabled enough. Go figure. Although I am no longer able to take the mtx because of what it was doing to my liver. I am on the Arava, Plaquenil, and now Lyrica. Only problem is the weight gain! I weigh more now than either time I was pregnant! And the pain is STILL almost unbearable! There are days I just can't get out of bed! Thank God my husband helps with the kids! The depression has been lifting a little thanks to Prozac, but I feel like a dadgum pill factory with all I HAVE to take every day! There are days I feel like just stopping ALL meds just to see what would happen, but then I just move and the pain tells me that that would NOT be a good idea! This is DEFINITELY NOT the way I imagined my middle to later years! I still attempt to do as much as possible, but the limits are beginning to add up! The idea of ANY surgery worries me to no end. As a mom I envision that my family cannot function without me, so I refuse ANYTHING that will put me out of commission longer than a day. I know that that is probably not a good thing, but I just can't bring myself to limit myself any more than I already am.
All of the comments and advice I have received are GREATLY appreciated, much more than any of you could know. Thank you SO MUCH! God Bless and take care!

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kemani

Posted Saturday, February 02, 2008 7:41 PM

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Last week i was diagnosed with Large Granular Leukemia. I have had rhuematoid arthritis for 34 years and as a result of all the anti inflamatory medicines that I have taken over the years I contacted first cellulitis, then neutropenia and finally leukemia. They put me back on methotrexate which I hate but because of hardly any white bllod cells in my system, I have begun this treatment again. Has anyone else had this experiance. It is difficult to find any patient readable information about this kind of leukemia as it relates to rheumatoid arthritis.

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lisa sellers

Posted Thursday, March 26, 2009 9:11 PM

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I was receiving Orencia infusions every 4 weeks which really helped my RA better than anything else. About 4 months into the infusions I developed a chronic cough with chronic sinus problems. After 9 months and several doctor visits I was put on singulair. It really seemed to stop the coughing. However my sinuses were so stuffed I could no longer taste or smell. I went to an ENT specialist who recommended surgery for a deviated septum and to clean out the damage from so many infections. I had the surgery in December of 2007. After the surgery I developed full-blown asthma. It got really really bad I had to see a pumonologist and was put on 60mg of pred along with Advair and albuterol inhalers. I had horrible sinus infections about every other month. My rheumy recommended that I stop the Orencia since it has been known to worsen chronic lung disease. 6 months later, I have no asthma at all. I take no inhalers or anything. However, I continue to have sinus infections from hell. I have lost the ability to recover from any sort of upper respiratory infection without antibiotics even if the infection is viral I always seem to develop a secondary bacterial infection. These are horrible infections. My ears fill with fluid and I can't hear, taste or smell. I take humira and a small methotrexate dose for my arthritis, but I have to stop taking them for months at a time due to the sinus infections. I often worry about the side effects from the humira if it lowers my immunity this much what other disorder will I be susceptible to.

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