Codeine and Nada

By danny777

1 min read

I have been using Tramadol for years.

Rheumatologist difficulties

My RA doc asked me to see a pain doc. I actually don’t understand this.

You are an RA doc and pain is the major symptom of RA and y’all don’t fully address it ... ok.

Did Tylenol address my RA pain?

I saw a pain doc. He prescribed Tylenol 3 - one every six or eight hours, as needed.

I tried it - nada. Had a crushing flare. Took two T3s … ZIPPO … lost most of Saturday and Sunday due to major flares.

Sunday night went back to 100mg of Tramadol…Monday morning, 100mg Tramadol and 10mg prednisone- wow, feeling great!

But prednisone … went into a friend’s office.

“Are you ok?”

My face was so red, he was concerned. The skin on finger joints is best red.

Eating like a horse.

But I feel good.

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Julie.Byers Community Admin
<inline-mention username="danny777" user-id="3157557"/> , how frustrating! It does seem counterintuitive that your RA doctor would send you to a pain specialist since pain is a primary symptom of RA. With that being said, I know many in our community have a pain management doctor as part of their treatment team. I’m sorry that the doctor you saw didn’t seem to be very helpful. Were you able to reach back out to them and let them know the T3 wasn’t managing your pain? Hopefully they will work with you to find a better alternative. You deserve relief and doctors that will work with you. Thinking of you, Julie (team member)
1. danny777 Member
 <inline-mention username="Julie.Byers" user-id="3185594"/> this morning, I received a direct call from the physician. We discussed the situation. He was golden. Not even a hint of “you’re a drug shopper.” Given the Tramadol program works best, he just told me to call him when I had was down to three days Tramadol inventory. “Why do you take so many pills ?” I take Tramadol in 50 mg tablets. “When you’re down to three days, I’ll call in 100 mg. Tabs - easier.” Good guy. I’m looking forward to working w him. Thank you!
2. Lori Foster Community Admin
 <inline-mention username="danny777" user-id="3157557"/> How wonderful that the doctor was so responsive. I am glad you didn't give up on him. Best wishes. - Lori (Team Member)
danny777 Member
I appreciate y’all reading my notes and considering them. Things aren’t going well. Today started w two hours of feeling good. While someone was in my office, it started. By lunch time, I had to go home. Cost me two hours of work when I was doing contract pricing… This is not working.
1. Richard Faust Community Admin
 Hi <inline-mention username="danny777" user-id="3157557"/>. Most of the information I have seen says that RA patients start to notice improvement with Rituxan after 8 to 16 weeks. You are at the far end of this, so hopefully you are starting to get positive effects. That said, if your RA continues to seem uncontrolled don't hesitate to speak to your doctor about treatment options. Have you used any biologics or JAK inhibitors prior to Rituxan? Wishing you some relief soon. Best, Richard (RheumatoidArthritis.net Team)
2. danny777 Member
 <inline-mention username="Richard Faust" user-id="3227544"/> BTW - yes, I was told up to 4 months.
danny777 Member
I appreciate all of the input - good thoughts/ideas. I did the RITUXAN in Oct, so still time on the clock. The week was…well Friday night I was searching on disability options. Yeehaw. 😀
1. Erin Rush Community Admin
 <inline-mention username="danny777" user-id="3157557"/>, I'm glad you're racking up some good days and I hope that continues! And I totally get you when it comes to compromise and losing ground. I think it's often true. I know it definitely is for me. Sometimes, you do have to just hold the line. Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member. 
2. Richard Faust Community Admin
 Hi <inline-mention username="danny777" user-id="3157557"/>. I know what you mean about resisting losing ground. My wife, Kelly Mack (a contributor here), was diagnosed at age two, 45 years ago - before modern treatments, with the damage to show for it. Maintaining her abilities is hard work. She wrote here about working harder than anyone else in our pool to build and maintain the strength she has: <a href='https://rheumatoidarthritis.net/living/exercise-results' target='_blank'>https://rheumatoidarthritis.net/living/exercise-results</a>. But as hard as maintaining may be, it is easier than regaining strength and abilities when there is a period of inactivity. Wishing you more good days and no losing ground. Best, Richard (RheumatoidArthritis.net Team)
turtlelady1950 Member
How are you able to get Tramadol? My rheumatologist had prescribed it for me and now he retired. My new one won't prescribe any pain meds and said I need to go to pain management.
1. Richard Faust Community Admin
 Hi <inline-mention username="danny777" user-id="3157557"/>. At first I thought that was a different euphemism for when it hits the fan 😀. Glad you have found a pain management person and have been able to get back on your regimen. Best, Richard (RheumatoidArthritis.net Team)
2. danny777 Member
 <inline-mention username="turtlelady1950" user-id="9745844"/> Yes - same thing. So now I have to see a Pain MGMT dude, once a month. Two months by phone and third month an office visit. Unfortunately, office visits are supposed to include drug testing. So, remember to thank our government for protecting us. 😡 I have had the same prescription for - - 5 years? And no, I do not appreciate my RA doc not doing what is necessary to treatment the leading symptom of the disease. The meetings w the Pain person are typically five minutes. They know far less than I do. At least the first guy and I chatted about other stuff to justify what it cost me to talk to him. 😂 Already wrote some of this but wasn’t sure I had answered your question. 👍🏽
CommunityMember3140 Member
Over 25 years ago, when I used to have RA flares, I used to take Tylenol once in a while and it always worked but due to the warnings against long term use, I took it only when I had to when flares were so severe, my job would be jeopardized. I noticed, whenever I ate wheat products, I used to get flares the following days so avoiding wheat, I reduced the occurrences of flares but not completely. I saw a couple of physicians who blood tests but could tell nothing. I had a suspicion that conventional medical practice cannot deal with RA. I began to research publications and found a book written by Rheumatologists who claimed he treated hundreds of patients to eliminate RA flares completely without exception by diet elimination technique. He asked the patients to keep a daily diary of everything he or she ate and after several elimination experiments the patients were totally free of pain but only as long as the blacklisted foods were avoided. The important thing was quantity did not matter. one bite of the wrong item can cause flares which may last 2 to 3 days. Also what bothered one patient may be completely okay for others. Soon after reading the book, I became bedridden due to severe flares in all joints. I thought of an easy way to find what foods cause my flares. I started with one item, fresh mixed green salad and found all my pain was gone the next day but to be sure I kept on the salad for a few days. I felt energy level that I never experienced before. I was willing to live on the salad for the rest of my life but curiosity led me to try another food item. I was still doing just as well. So went on trying one item at a time and found several items that made me sick like a dog, wheat, peanuts, breakfast cereals and many packaged foods. These became off limits for me for over 25 years and no flares unless I tested one of those on purpose. More research that in the distant past, there were many naturopathic clinics in Europe treated thousands perhaps millions of patients successfully. The reason why that worked was not clearly understood, but recent research on gut bacteria (microbiome) strongly suggests, RA is a gut microbiome issue and the microbiome is affected by the foods we eat. I suspected, diet elimination alone does not fix the root problem of intolerant foods. So based on some suggestions I tinkered with probiotics and prebiotics and the result is puzzling. No more intolerant foods. I can enjoy any food I like today. My conviction is that the conventional rheumatology treatments do more harm than good. Instead of improving immunity, the drugs suppress immunity and the general public has no idea what it means. 
1. christine.laaksonen Community Admin
 <inline-mention username="CommunityMember3140" user-id="5528970"/> that is wonderful that you have been able to manage your RA in this way. I certainly hope there will be further studies on gut health and how it links to various health conditions. I know that you're not specifically talking about the AIP diet, but I wanted to share this article for those who see your comment who are wondering a bit more about gut health and diet as it might relate to RA, <a href='https://rheumatoidarthritis.net/clinical/aip-diet' target='_blank'>https://rheumatoidarthritis.net/clinical/aip-diet</a>. Of course, what helps one person won't necessarily be the same for another, but it's always encouraging to hear people's stories of getting relief! We appreciate you joining the conversation here and sharing with the community! -- Warmly, Christine (Team Member)