Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi everyone - I just found this site a few days ago and I feel such relief to know that there are people that will understand me!
I have not been officially diagnosed with RA even though I have been going to a rheumatologist for about 5 years (I'm sure that sounds familiar!!). I presented with RA nodules on my fingers, finger, hand, and wrist pain, and some pretty serious fatigue. BUT, my bloodwork has yet to show RA, so my dr will not give me the diagnosis (or treatment beyond a naproxen script).
In April of this year, I was diagnosed with ovarian cancer after surgery to remove a mass from my left ovary. It was caught sooo early - stage 1a - so my prognosis is better than many that are diagnosed with ovarian cancer. Funny thing, as I went through chemo this summer, my RA symptoms were completely gone (except nodules, of course). Go figure! But, about 4 weeks after my last chemo treatment, RA reared its ugly head and now I have pain in my fingers, hands, wrists, elbows, shoulders, knees, and ankles. And, the fatigue is so much worse that any I felt with chemo!
Well, I have a new PCP and he is pretty upset my dr has not diagnosed RA and he is recommending (insisting on) a second opinion. I agree. But (finally!) here is my question to all of you: how difficult is it going to be to treat RA as a cancer survivor? Ovarian cancer is pretty relentless and the chances of recurrence are fairly high. I am quite concerned about anything that will supress my immune system. Any ideas, advice, suggestions?
Thanks so much for reading!
Kim
I have not been officially diagnosed with RA even though I have been going to a rheumatologist for about 5 years (I'm sure that sounds familiar!!). I presented with RA nodules on my fingers, finger, hand, and wrist pain, and some pretty serious fatigue. BUT, my bloodwork has yet to show RA, so my dr will not give me the diagnosis (or treatment beyond a naproxen script).
In April of this year, I was diagnosed with ovarian cancer after surgery to remove a mass from my left ovary. It was caught sooo early - stage 1a - so my prognosis is better than many that are diagnosed with ovarian cancer. Funny thing, as I went through chemo this summer, my RA symptoms were completely gone (except nodules, of course). Go figure! But, about 4 weeks after my last chemo treatment, RA reared its ugly head and now I have pain in my fingers, hands, wrists, elbows, shoulders, knees, and ankles. And, the fatigue is so much worse that any I felt with chemo!
Well, I have a new PCP and he is pretty upset my dr has not diagnosed RA and he is recommending (insisting on) a second opinion. I agree. But (finally!) here is my question to all of you: how difficult is it going to be to treat RA as a cancer survivor? Ovarian cancer is pretty relentless and the chances of recurrence are fairly high. I am quite concerned about anything that will supress my immune system. Any ideas, advice, suggestions?
Thanks so much for reading!
Kim
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
My Rheumy is super intelligent and she stays on top of many of the cancer treatments because so many of the good RA drugs are one and the same. She is a proactive voice in getting certain drugs pushed through the approval process for RA.
She explained them both to me in this way....cancer is an overactive growth of certain cells and RA is the exact same. That is why we can use the same med to treat both problems.
It is true that RA meds do lower an overactive autoimmune system, often too much which is why we get sick and stay sick. Same thing when you went thru treatment for cancer, gotta stay away from bugs....
I'd really suggest that you keep a working relationship between your oncologist and rheumatologist. Good luck!!
First i can't belief your rheumy won't treat you. You need a second opinion for sure. The longer you go not treated the worse the damage to your joints.
I had stage 2b grade 1 uterine cancer and had total hysterectomy in June this yr. I just finished radiation treatments last wk. I did not need chemo. I was then diagnosed with RA on Sept 22 According to my rheumy there is no problem treating cancer survivor who have RA . I know ovarian cancer is relentless and you are right to be concerned but please don't let the RA go. There are people who treat RA with diet and vitamins and herbs. There is something out there to help you. I am currently taking methotrexate and prednisone. Don't know yet if Methotrexate is working yet only been on it for a month. My advice is get another rheumy who will treat you and give you the info you need. Just know I understand what you are going thru.
Hugs
Jan
Welcome and so sorry to hear about all that you've been through!
Pittielover, the reason why RA meds can cause cancer and treat cancer is because:
DMARDs work by keeping the body from reacting. (some are a little more complicated but in general) The medication can't tell the difference between reacting in a normal way, vs reacting in an abnormal way. So instead, it just stops the reaction all together. This in turn keeps the body's natural defenses down, and thus you are unable to fight things you normally might be able to fight off, such as abnormal cell mutation which leads to cancer. It is thought that we experience cancer all the time, but our body is able to fight it off.
luvolddogs,
many people would be against what I am about to suggest to you. I am one of the few people on this site that started with traditional medications and then went to alternative treatments. I am a fairly driven person, and I have tried so many supplements and alternative treatments now. I generally don't talk about what hasn't worked for me, because everyone's body is different and what doesn't work for me, might work for you. But what I will say, is some supplements/alternative treatments seem to have more documented successes/case studies, etc.
So what I would recommend is that you could go the alternative route. I keep track of what works for me and I list only what works the best on my blog. I think of supplements as food. You don't eat one food a day, or one type of food a day, so why would you take one supplement a day? Supplements are simply not strong enough to treat a person like medication would, so in my opinion, the best way to take supplements is to take a variety of them, making sure that they all work differently. (try to buy them from good sources and look at labels--find ones made of vegetarian caps, no gluten, no corn, no additives, no colorings, etc.!)
Things to look up on your own so you can understand inflammation, and take supplements that fight these things are:
fibrin: too much leads to blood clots, plaque in arteries, varicose veins, fibrocystic breasts, fibroid tumors, nodules, cysts, and inflammatory diseases.
tnf protein: Not just tnf protein can cause inflammation, but as you might know from learning about Biologics, too much tnf protein is a bad thing. Supplements such as reseveratol and n-acytlecystine reduce tnf protein. N-acytlecystine also chelates metals, so if you have too much mercury for instance, it will reduce it in the body. Unfortunately, it chelates all metals, so those that you need, such as selenium, copper, and iron must be supplemented to avoid too little. Luckily both copper and selenium reduce inflammation, so supplementation of these is a good thing. Copper needs to be balanced with zinc. Too confusing?....if it's too difficult, it's easy to find supplements that combine things for you so you don't have to think! Prohealth is a good website that contains lots of information. You can find supplements that have n-acytlecystine, copper, zinc and selenium all in one!
ph balance: too much acidity is thought to lead to cancer, inflammatory diseases, and a host of other issues. What you eat and drink absolutely has direct effect on your ph balance. That's why eating an alkaline diet (lots of green veggies) and avoiding foods that are highly acidic, (alcohol, sugar and processed foods) can make a world of difference in your body.
cell life and death: believe it or not, your cancer and RA are directly similar in that our cells are not dying when they are suppose to. A supplement called Apigenin fights cancer and promotes cell death at the right time. If you're afraid to try something like Apigenin, try celery seeds (which are highly anti-inflammatory) and which contain apigenin, or eat a decent amount of celery on a daily basis.
circulation: sometimes cells and blood seem to stay put in areas of your body with diseases like RA, diabetes and cancer. Circulation simply isn't quite so good, and it must be improved!. There is a European scientist who found that improving the circulation of a cancerous tumor actually got rid of the tumor, meaning the body had a chance to fight it off once the circulation began. This is still an experiment however because creating circulation in a tumor is no easy task...it wants to do its own thing! So how do you improve circulation? Exercise, gingko biloba, proper thyroid treatment if the thyroid isn't working correctly, and even pricking your fingers, believe it or not could help with circulation. (Diabetic needles work best)-but remember, I'm not a doctor, so I don't know if this could later cause nerve damage or something.. I'm guessing that constant inflammation would more likely cause nerve damage than a little needle prick. :)
chemicals and injuries: if you can reduce these things, or get rid of them all together, your chance of success of reducing inflammation is much greater!
EICOSANOIDS: you might recognize prostaglandins, leukotrienes, etc. Here's a good link to understand why these things cause inflammation: http://books.google.com/books?id=eu0Zepp8IJ8C&pg=PA173&lpg=PA173&dq=the+science+behind+inflammation&source=bl&ots=fbbGAce2dv&sig=jidNeG5uMZ2PApuHXlKFR6rKH1U&hl=en&ei=HXnPTOSENYr2swPQ6OH_Aw&sa=X&oi=book_result&ct=result&resnum=4&ved=0CCIQ6AEwAw#v=onepage&q=the%20science%20behind%20inflammation&f=false
histamines: your body reacts in a variety of ways, but one of those ways is with histamines. One good supplement that reduces skin rashes, etc., much like benadril would is quercetin. quercetin is found in grape skins and apple skins. Buy organic!
Also-if you want to go the drug route: Kineret seems really good. Side effects, except for infections from injections, seem next to nil! Minocycline is a decent route. the alternative route to antibiotic therapy is to try something like monolaurin (found from coconut) and turmeric which are both anti-bacterial. Turmeric promotes natural cortisone levels which means it's a good alternative to use to try and get off of prednisone. And last but not least, Low Dose Naltrexone. Look it up, it fights inflammation and cancer and many people, even in this support group are taking it, including myself!
There are lots of things that could help but I thought I'd get you started. You might be interested in my blog...I'm not promoting anything, so please don't take my mentioning it as anything but there being more information on my blog if you're interested. On my favorites tab, it has what I list as my personal favorites to take.
hope that helps!
hugs,
Sarah
@pittielover - Sounds like you have a good dr! How did you find her? I'm really not sure what to look for in a good rheumatologist.
@jan - Glad to hear about another cancer survivor with RA. Congrats on finishing your radiation treatments! I'm sure that is quite a relief! I'm just so afraid that by supressing my immune system with RA drugs, my cancer will come back. I suppose I should really be patient and wait until I see another dr. before I panic!
@sarah - Thanks so much for all of the information! I am definitely inclined to go the supplement/diet/natural route before getting into the drugs. I guess I need to be sure my new dr is on the same page with me in that regard. This will be no surprise to you, but many of the things you discussed in regard to RA are also being discussed on my ovarian cancer support forum. There seems to be many parallels in the two diseases. I honestly do not know enough about RA at this point as I've been up to my eyeballs with ovca research. :)
Anyway, thanks, again, for all your support and comments! I really appreciate it!
Kim
I love my dr and my RA team and I don't share. :-) J/K. When I was FINALLY in the process of getting diagnosed at 18, my mom worked with my 2nd grade teacher who had arthritis. They didn't have a RA dr in my town so we decided to go to her and we had to drive 2 hours away. I fell in love with her. I'm pretty medically knowledable and I KNOW myself. She didnt treat me like I'm a friggen idiot. I was in very bad shape and she is very aggressive with treatment which is exactly what I need. When I didn't live in in the area anymore I experienced 2 other Rheumys and they dont even compare!!! Now I'm back with her again. It's been a 14 year relationship.
She trusts me and I trust her with my life. Plus, she use to practice as an Internist and surgeon so she's my PCP in my book. She even stays on top of other dr's that I have to deal with when she makes me. I fear the day she retires. I told her she's not allowed to! Smartest little lady I've ever met! So meeting her was pure luck! Who ever thought such a terrible disease could bring such wonderful people into your life?