July 22, 2009 - 1:36pm
Quincy here, my cancer therapy triggered RA as well as myriad other side effects. My oncologist (ONC) and my PCP were doing their best to treat it but it finally reached the point that we all decided that it was time to see a specialist, a Rheumy as my friend A mom calls them. A mom gave me loads of excellent advice, I made a hard copy of one of her pm's it was so good. It's just that there are so many knowledgable people on this board and I wanted to see your input as well.
My pain is symmetrical and at this time is most prevalent in my hands/wrists and feet/ankles. There is some deformation in my knuckles and a hard nodule between the base of the thumb and the wrist on both hands. This nodule is extremely painful and it swells up every time I do some normal task like dishwashing . . . no, really, I can't do the dishes anymore. lol I have lost almost all of the flex in both thumbs, I can bend them from 12:00 to 10:00 or, in other words, a 60 degree bend out of 360 degrees total. Flex in my fingers is restricted as well but not to this point. Flares occur whenever I stress out emotionally which thankfully isn't very often. They also occur when I overdo it physically which is often.
Any advice is welcome, what I am mostly concerned about is what medications you have tried (not pain meds, I'm covered there) and what, if any, physical therapy you might be familiar with. As I said, this is my first visit and I'm looking forward to it. I would like to be as prepared as possible so that if the Rheumy asks me a question or suggests a treatment I will have a clue to what she is talking about. Thanks to everyone and a pain free weekend to all!
Q
PS: My current pain Rx is the 72 hour Fentanyl 100 mcg p/h patch along with OxycodoneIR 15 mg up to 6 p/d for BTP. I am also Rxed Celebrex 200 mg prn as an NSAID for inflammation.
July 22, 2009 - 4:47pm
#2
I'm buying one Friday!
Thanks Woodstock, man that sounds divine. I read your reply right after I got done applying some roof patch cement (I said that I overdo it physically) and that paraffin bath sure would have been nice right then! I edited my Topic to include the NSAID Celebrex on my listed pain meds, it works way better than all of the OTCs for me. No stomach trouble and I can take as needed. Type at ya later, good buddy . . . Q
July 22, 2009 - 4:52pm
#3
Quincy:
I've had RA for about 4 years now with fibro. I also have the nodules in thumbs and fingers have gotten worse over last year even with meds. I am currently using low dose prednisone, 5mg, and methotrexate 20mg once a week. I usually take on Saturday night due to side effects of MTX, more extreme fatigue than normal and stomach pain that has also gotten worst over time. It seems to last till Tuesday now when it used to be only Sunday., I think this is usually first course of treatment and it has slowed progression if you can handle side effects.
socs1116
July 22, 2009 - 6:11pm
#4
Q
...I don't know if it's use is already contraindicated considering the other therapy you're undergoing, but I would try and avoid prednisone if at all possible.
You've got many happy years ahead of you, and being on that stuff long term is really nasty. Prednisone and other steroids are a Rheumatologists best friend. 
I'm sure you're aware of the side effects, just wanted to share...
Take care of yourself my man.
July 22, 2009 - 7:11pm
#5
Socs 1116
I'm honored to receive your first post, that's really cool! I tried the MTX and Prednisone about 18 months ago, all I can say is YUCK!!! You're not kidding about the fatigue and nausea, it's like giving up your weekend 'cause you'd rather have yourself a nice 2 day stomach flu, huh? That metrexate is just plain awful and I got Zero benefit out of it so I stopped taking it after just 2 weeks. The other side effects of the hormone therapy take too much out of me to handle the extra load that MTX was putting me under. It doesn't sound like you're enjoying it either and that it's not helping . . . maybe you should talk to your Dr. about a new therapy if you can.
The finger nodules are very strange, mine showed up within 6 months of diagnosis but their progression has been slow since then. How 'bout you? The worst is my thumbs, I'm a fine art picture framer and I really put a lot of stress on that joint in almost every phase of production. I don't work in my home shop very often these days but, occasionally a job comes my way that I can't refuse. I'm glad that SSDI allows me to spread the income over the year 'cause I pay myself well for the pain and effort. I hope your living doesn't depend upon your hands, Soc, and thanks for your reply . . . welcome aboard the good ship pharmer!
Hey FeliksD, how you bee? I hear you on the prednisone, that stuff is bad news. I've taken the "Inflammation Course" twice before for sciatica years ago and it worked well but the mental changes it put me through were really bizarre. I stopped taking it when I stopped the MTX and I see no call to ever take it again. Take care, good buddy . . . Q
July 22, 2009 - 9:02pm
#6
RA
Q, I've had RA for about 7 years. Most Rheumy's start you with the DMARD's - most common one being the Methotrexate. I tried both Metho and Arthrotec, neither successful. Remicade came next, in the office and infused. I had positive results in the beginning but when I moved and changed doctors, his fav was Orencia. I'm glad I moved, as there is no comparision between the two, Orencia is much, much better. I personally didn't have fatigue with the Remicade, but know of others that did. Couple of things that come to mind - fairly common for RA patients to also have Fibromyalgia. In which case, if you haven't tried it, Lyrica is a suggestion. Lyrica is a god-send, by far the best drug I take. Also Celebrex for me was over priced when there are so many other NSAIDs which do a better job, I take Mobic (comes in generic). You probably already know this, but it is imperative all your docs are on board and on the same page. I've been in the middle of my Rheumy and PM once or twice - each with their own regimen and contradicting the other. That said, a good PCP is a must - they can run interference for you and are often not as defensive if you have questions. For you this is critical, I don't know anything about hormone treatments but many RA meds have real complications - for example I have Hep B. Most of the time it stays in remission, but I have to be real careful in reminding everyone that my fatigue may be more than someone else's fatigue. Have to watch out for easy bruising. A good rheumy is going to do a ton of blood work - request a copy of the lab results and personally make copies for your other doctors - this is real important. Many of the RA drugs are extremely expensive - most manufacturers have discount coupons available to anyone - just go to the manufacturer's website. This can range anywhere from free copays to a free month, same for Lyrica....never underestmate the value of internet research - not just for coupons but for side effects. I had to ask my PM about Pristiq and HBP, hence precipitated a change to Celexa. Paraffin baths are great.....as is swmming...good luck Q
July 22, 2009 - 9:47pm
#7
Thanks 3red3red
Wow, that's a real haul, thank you! I love this site for just this reason . . . people like you that have so much personal experience with CP and are so willing to share it. I've already done the Methtrexate and Prednisone, no good for me. The hormone therapy has zeroed out my testosterone level so I fatigue very easily. Your comment on RA drugs being possibly contra-indicated with hormone therapy is very insightful as well as useful knowledge for me. My PCP once told me that he usually Rxes Testosterone for men in my condition, we had a good laugh over that. Lyrica and generic mobic intrigue me, I'll ask about them. I'm happy with the Celebrex but, as you said, it is pricey even though my HI pays 70%.
I've been running interference for this cancer for 28 months now . . . it's imperitive that I control my quality of life as suicide is all too common amongst the men who are put on this emasculating therapy. With that in mind, I've been able to ferret out treatments that will aid me in this fight. Your advice is beyond price, thank you one more time . . . Q
July 22, 2009 - 11:07pm
#8
cortisone
will mask the pain for like 2 weeks but the side effects of to bone marrow make on a as need basis
basically if you can t stand the pain, get a cortisone injection, RA is alot like gout, nothing can absolutely make you zero pain free for the imflammation. but there are chonic arthritic suffers that have to take either cortisone or predisone.
Woodstock
p.s. I love to make primitive furniture when I get time for my family, I don t varnish it just sand an put orange oil on, looks like furniture of the 1800 era., makes for a great country look, an family Son an Daughter already wanting some of the same pieces , so hopefully Dad can duplicate some pieces, the work keeps the joints limber, an get the mind set to work with the pain if possible.
July 22, 2009 - 11:12pm
#9
Hang in there Q
I continue to admire the strength with which you fight cancer - I can only imagine how difficult it must be. Quality of life is very important is certainly important. If it makes you laugh, I had an RX for testesterone cream once....supposedly was to increase poor libedo; didn't work...so I opted for a new boyfriend...wow, that worked
July 23, 2009 - 7:48am
#10
Quincy:
Quincy,
I've been reading here for a long time, but usually like to stay in the background. I have tried to discuss the stomach issues with the MTX with my Rhuemy but he doesn't seem to care or comprehend. I don't know which. I think his next move is the MTX injections. In addition he gives me the cortisone injections in hips and SI joints which are my main problem areas. I have also heard the Orencia is good, and have talked to one guy at aqua therapy that says it helped him tremendously. Let me know how it turns out.
Socs
July 23, 2009 - 10:27am
#11
Thanks All . . . Q
What a great way to start the day, reading y'alls replies. Woodstock, isn't a bit of woodworking a great tonic for the soul? That's what I love, and miss, about picture framing. I have a fully equiped frame shop at home . . . I'd better, I've worked out of my house for 17 years. I just finished a job last week, sure it hurt at the end of the day but never during the work hours, at least not too much. I'm gonna save the cortisone shots for emergency use only, the cumulative effects are nasty and I'm already on hormones.
Hi Soc, I guess I should have known that you've been reading this board for a while, your post was so well written and clear . . . a rarity sometimes among new posters, unfortunately. I'm gonna open my big mouth here and suggest something . . . after 4 years of RA I think your rheumy should be using more advanced therapy with you, especially since you report a worsening condition and advancing RA. I'd have to be hogtied to get an injection of MTX. Fast acting stomach flu symptoms, no thanks.
I got excellent advice from A mom, she is one of the really good ones in my opinion. She dispenses her advice with a wonderful giving and caring attitude and she really knows her stuff, like 3red3red. You should consider pm'ing these folks and get their ideas on your situation, I know they'd be glad to help. I'm glad that you signed up, now you can take full advantage of this great site. Interacting with my fellow CPs is one of the highlights of my day, it really helps improve my quality of life though at times I do get smile cramps.
Hi 3red3red, thanks for the laugh, it sounded like you should have given that cream to your old boyfriend as a going away gift 'cause I think he could have used it. lol I forgot to mention on my first reply to you that I've been taking Cymbalta, an SSNRI, for 6 months now. I think it's better than the Celexa 'cause of the norepinephrine aspect. It is also Rxed for Diabetic Neuropathy on label and various CP off label, it did alleviate a measurable amount of my pain and my wife says that I'm 100% back to normal, personality wise. I was always a cheerful guy so it's great to be that way again and I haven't noticed any adverse side effects. I got it to fight the depression that the therapy was causing both through it's bio-physical actions and the self-pitying mental state my vanished virility caused. I always enjoy kudos from others on the strength of my fight, I have no false modesty about what I have achieved and am going to achieve. Thanks for the good words!
Q
July 23, 2009 - 11:09am
#12
Quincy I really dont know
Quincy I really dont know much about your situation but I will pray for you and wish you a pain free recovery.
July 23, 2009 - 11:54am
#13
Thanks Spence
Hey you, I pm'ed you with some details as I don't want to clutter up the board with my story for the umpteenth time. I don't mind doing that but I'm sure a lot of posters are tired of it by now. LOL Thanks again for the thoughts and prayer, they all help!
July 23, 2009 - 8:34pm
#14
Q, I know some chemo can
Q, I know some chemo can cause neuropathy. Could some of your pain be coming from neuropathy? I can't remember if you are on chemo or not. I do not know much about RA other than it is painful. I hope you get some relief!!!! Thanks for saying nice things about me lately. Did you ever get some Tegaderm? You may not need it but if you do ebay is the place to get it cheap. I paid $7.99 for 25 with free shipping. That was not the cheapest, I opted for buy it now. Thanks to the poster who told to try ebay again!!! Take care, htmom
July 23, 2009 - 10:06pm
#15
Hi Htmom . . .
Nope, chemo doesn't work on this weirdo cancer. There's a blood test that's almost 100% accurate that tells you if you have RA, I think that's about the only good thing about RA, the absolute certainty. I'm really looking forward to tomorrow's appt. 'cause there's a lot of good buzz in the Med Community about this new Rheumy in town. That plus all the new knowledge that everyone has provided me with. After reading Soc1116 and 3red3red's replies I now know the diff between a conservative hidebound Rheumy and a knowledgable go-getter.
Thanks for the Tegaderm thought. I got lucky and found these off-brand dressings called DR. CARE by DURA-AID, they're made in China and,for me, they work like a dream . . . no skin problems, don't come loose before 3 days, and they're the right size. I got them at my favorite SuperMart on sale at a box of 4 for $1.29 which works out to .30 each. I bought all they had, 18 boxes. If they haven't got any in stock when I run out then it's ebay time fer shur 'cause the full retail can be as much as $3.00 each. What a rip, that's 10 times what you paid on ebay, huh?
You are more than welcome for the compliments, you deserve those and more for all the help and advice you've given me on Fentanyl. You made my transition from all that OxycodoneIR to the 72 hr patch a breeze. We all know that our Drs. generally only have a removed, book learned knowledge of the pain meds that they prescribe while we CPs have an empirical, experienced and intimate aquaintance with them . . . like using Tegaderm to hold the durn patches on tight for 3 days and where's the best place to put them. My wonderful oncologist just told me, "Yes Q, we can try the patch." I'm sorry Dr. S but it's true. Best wishes to you and your family . . . Q
July 23, 2009 - 10:56pm
#16
Hey Q...
Fancy seeing you here. I read all of the posts in this thread and wish I had something more to offer you, but I am not sure if I can. It seems that there are many people who post on this site that really help out so many people, even if they are not members. One thing did cross my mind though, I used to take Cymbalta for my Fibro but within the past two months have tapered off of Cymbalta and tapered up Savella. Savella is a SSNRI (selective serotonin and norepinephrine dual reuptake inhibitor) that was approved by the FDA for the treatment of Fibromyalgia. I know RA is not Fibromyalgia, but I believe that there may be some similar traits. I could be way off base here, so please correct me if I am wrong. Savella is relatively new and I like it so much better than Cymbalta. I have tried several other anti-depressants, two of wich make me vomit (celexa and lexapro) and have also tried Effexor. By far, Savella is the best one that I have ever taken. Cymbalta comes as a close second, although cymbalta did tend to make me tired whereas Savella does not have that effect. I will enclose a link to so that you can read about Savella, it may not do anything for RA but I just wanted to give you a little food for thought.
Hope you start feeling better soon.
KJB
http://arthritis.about.com/od/milnacipran/a/Savella.htm
http://www.drugs.com/savella.html
July 24, 2009 - 9:24am
#17
Thanks, KJB
I'm still trying to get Cymbalta approved by my HI so I'm gonna stick with it for now. I'll ask my excellent Psychiatrist/Psychophamacologist (ret.) about Savella, sounds interesting. I take it that it's an SSNRI like Cymbalta, huh? I really like the pain reduction due to the selective norepinephrine action. I gotta go see the rheumy, OH BOY!
Q
July 24, 2009 - 11:38am
#18
Good Luck at the Rheumy Q!
I hope all goes well with the new rheumy and you get some relief for your hands and wrists. With the kind of work that you do, you can't really work if your RA is acting up. Have a great day and let us know what happens with the rheumy.
KJB
July 24, 2009 - 5:46pm
#19
Q-
How'd it go? Send me a P.M. if you so desire...
July 24, 2009 - 6:06pm
#20
Hi All . . . Good Doc///Bad Office
The appt. went well except for the communication challenged office staff. That description says it all so I won't bore you with the details 'cause I know that all of you have dealt with 1.5 hour waits and all the rest of the unpleasantness found in a poorly run multi Dr. office. My new rheumy is a very bright and pleasant 33-37 year old Lithuanian woman. She was sooo apologetic about the wait and total lack of communication that I immediately forgave and forgot the inconveniance caused by the office staff. She gave me a thorough, down to my boxers and the robe, exam and spent 35-45 minutes interviewing me. As this is my very first visit to a Rheumatologist there were no Rxs or anything close to a diagnosis. I'm up for blood work and X-Rays Tuesday and a follow up appt. on 08/03/09 when they'll know more about me.
All of your advice came in very handy, I like being able to understand Dr. lingo and you folks prepared me well, thank you very much. The closest she came was a ball park diagnosis . . . I have a good chance of me not even having RA. This hopeful possibility was derived from the lack of significant swelling in my affected joints. The original diagnosis was really more of a supposition by my oncologist that was based on some rather ambiguous blood tests. She said that it might be simple cancer pain caused by the therapy rather than a degenerative syndrome like RA. Man, wouldn't that be a treat?
She asked me about the details of my cancer diagnosis which I happily provided . . . for those of you that haven't read one of my posts that goes into this bit of Hades I'll put it into a nutshell. My relevant test numbers upon diagnosis were a PSA of 511 and a Gleason score of 9 with a bone scan showing metastisis into my ribs. They remove your prostate gland if the PSA sticks at 17-22 for 2-4 months, a Gleason score of 10 means you'll soon be dead. As you know, I'm rightfully proud of my success in this fight and she gave me a hearty Atta Boy to cheer me on to further success. A very nice Lithuanian Dr. indeed.
I have some other good news that I'm gonna share with you kids here first and then I'm gonna post a Topic about it. My wife, Connie, tag name Aurelia5, got her SSDI full approval today! It took 2.5 years but my girl won . . . check out the "Happy Days are Here Again" Topic on this banner later tonight or tomorrow if you want more details. So many of you have given us your thoughts and prayers towards this well deserved end and I want to send our thanks right back atcha!
Q 
July 24, 2009 - 8:42pm
#21
That's great news, Q! I know
That's great news, Q! I know she's waited a long time and this must come as a joyous relief to the both of you.
July 25, 2009 - 11:44am
#22
Thanks Carolina
You got that right, we've been living from hand to mouth ever since I was diagnosed with cancer. My sweet wife, a5, has struggled with CP for at least 10 years and became completely unable to work 3 years ago. We would be out on the street if it hadn't been for one particular old and dear friend that has generously helped us financially. My own father disowned me in a sense when he told me that it was all my fault that I was broke because I should have been prepared for this cancer. By the way, I inherited the cancer from him and he's a pillar of his church, what a hypocrite! I placed a Topic, "Happy Days . . . " on this banner with more info, thanks for your kind words . . . Q
July 26, 2009 - 3:53am
#23
Wow, Q
Wow, Q, our sentiments about your father resonated loud and clear with me. I too, have been somewhat "disowned" by my father in a sense for my CP. A former cop, he believes that everyone should just "x*#& it up", and not "rely on narcotics to get through life". Like socs said above, I too have been staying in the background for a while, but have recently been feeling the real benefit of support through this site, especially with a family like mine (spouse NOT included), it's much needed. So a big thank you to everyone for all of the insight and knowledge. Also, congrats Q, on the SSDI. When I'm having a better pain day, I'll tag you on the other post for some more ?"s regarding the whole process.
Cindy
July 26, 2009 - 1:52pm
#24
Hi who (I love that tag-as you know!)
Thank you so much for sharing your Paternally Challenged Dad story with me. I'd like to hear more about it if you want to tell me on one of your "reduced pain" days. It's one of my favorite subjects to gritch about . . . no whining though, just gritching please. That's a combination of two different words and actions: gr from gripe and I'll bet you already know where the itch comes from. A5 and I made it up long ago, it's a fun word to say out loud and it's OK by the board's curse censor. I think it's healthy to vent your animosities with like minded people.
I'm so glad to read, twice now, that like me, you love your spouse . . . ain't it great? Did you see my reply to your post on the "Happy Days . . ." thread? That's too bad that other members of your family are dysfunctional too. My 3 sisters, their husbands and kids and my Mom are all like me . . . ridiculously nice. A5 loves them and they give it right back to her, she thinks we're all boy and girl scouts. LOL Well, I just had a bunch of good in me and it slipped out, hope I didn't gross anybody out . . .
Q
Ibuprohen is about the best OTC for both pain an imflammation, Daypro is a very good medication too
a little therapy you may want try special in the morning is a paraffin bath, you keep it plugged in all the time, you dip your hands an let paraffin built up a glove then you wrap the paraffin some comes with gloves or mittens to hold the heat in, let the paraffin stay on for at least 10 minutes, it increases cirulation an the paraffin releases lanolin to soften the skin, they cost around $30 at wally world.
Woodstock