Need Some Advice | Arthritis Information

I'm going to try and condense this as much as I can and hopefully you'll get a general idea of what has transpired in the last 90 days.

I've been on antibiotics for a gum abcess and a GI bacterial infection for 37 days out of the last 90 days.

February - Antibiotics for 7 days prior to root canal for infection and gum abcess, antibiotics for 10 days afterward.

March - developed GI bacterial infection - no treatment

April- Cipro prescribed for 10 days for severe GI bacterial infection and Dr. thought that it would clear up the gum abcess that cropped back up.

April - Gum surgery for abcess and 10 days of Ampicillin

Have been off dmards and biol. for 4 months due to multiple infections.

Had gyn exam and found a breast lump, had inconclusive mammo due to dense breasts and Dr. ordered a sonogram.

My last appt. 2 weeks ago with RD was a disaster and left me crazed. I'm confused, disappointed, and I feel like I did 4 years ago when the flare from hell hit me. I don't feel physically that way just mentally. My RD said I couldn't go back on meds for several for months and that he recommends that we don't live in Mexico for 6 months of the year. He's leaving it up to me if I want to restart the biologic.

I had mri of hands and wrists after the RDs appt. and the reading shows erossions in ALL fingers, small bones of the hand, wrist, ulna and radius. PsA, OA, and RA damage is present in both hands. Much of this is new damage that occured while I was in what we thought was clinical remission.

I also have a TENDON TEAR in my hand that could be directly related to Fluoroquinolone group of antibiotics that I've taken for the last 4 months. I have another appt. with my RD tomorrow. I have a ton of questions and I want to talk with him one more time before I have my records transferred. I want a referral to an orthopod that specializes in hand surgery. They usually cast it for 6-8 weeks. No golf for me. AAAARGH......

And the icing on the cake is my liver enzymes are elevated but my RF, CRP and Sed Rate are within normal limits.....I have ongoing damage and labs are all normal.....it's crazy. PsA doesn't cause this type of damage.

I had to call my RDs office 3 times to get the results of the mri and then the receptionist couldn't read or pronounce the findings, so I had to go into the office and pick up the report and I demanded my latest blood work. RD still hadn't called me regarding that. I wanted an appt. and they gave me one for next week and I told them that wasn't acceptable and that I wanted an appt. for either Thursday or Friday. They didn't have an appt. and said they'd have to talk to him. He came out to the front desk about that time, his office was filled with patients but by that time I didn't care. I got my appt. for Thurs. and I told him that I wanted at least a 1/2 hour time slot and he could charge my insurance for it because I have enough problems and complaints that they'll pay it without question.

I guess I need some insight into should I restart mxt and sulfasalazine in June? I feel that's my best option. I'm in no hurry to restart Humira. Too many infections in the last 18 months.

I think I need a second RD opinion?

I don't guess I'll do anything until after the sonogram of my breast and I see what the final diagnosis is.

Any ideas and help would be appreciated. I'm at my wit's end. Very frustrated and disappointed. This isn't my usual state and all of the oldies know that. HELP. Lindy

Hi Lindy -

Really sorry to hear about all of this. Don't give up on Mexico, OK, that has nothing to do with what's going on.

OK, with all those abx - did anybody give you some probiotics? Good ones, not the crap in sugared up yogurt?

The liver is probably processing all the meds - don't worry too much, keep getting it checked and the numbers should come down again soon.

Pip

OH! I am sooo sorry to hear of all that LinB! Even more sorry that you are still having disease progression and was considered in clinical remission. Kinda makes ya want to question everything else your RD has told ya, huh? I would. You want to believe in your doctors and what they say, but they are just as confused as you are most times. Now, lets just see how many of us on here are going to start questioning what their RDs tell them. I know I always question what my RD says is wrong with me, but she seems to be right after I connect it all together or another doctor will say it is the same thing, without me saying what my RD said it was.

I hope the sonogram shows nothing serious and hope you can start back on more disease repressing meds soon.

Much and many, many hugs to you.

joonie2009-05-06 21:00:00Oh, Lindy,Lindy,Lindy... what a hard place you are in now! I don't have a clue as to how to advise you. I just want to let you know you are in my prayers. I will say though that it sounds like you did a good job on being your own advocate at the office. You got a half hour appt and proved that "the squeaky wheel gets the oil".HI LinB, this is awful, did you have any erosions before this? Janie.Yikes! Perhaps a second RD opinion is warranted. Hope you get to the bottom of this .... and soon! Lindy, I am so sorry! I am thinking of you and hoping things will turn around for you. I know you are a strong woman and you won't give up until you are satisfied with the answers! One foot in front of the other, friend, and feel free to lean on those offering a leg up. Don't stop humming! Just curious - why did he tell you that you shouldn't live in Mexico for 6 months of the year? You still have access to medical care when down there, right? oh my girl...... I thought the mammo was clear? I will keep you in my thoughts about sono *hugs*

the RA..... I know you're considering seeing another RD..I think that is an excellent idea ... put both those heads together to help you make a decision.

Liver issues... when do you retest?

I know that these last months have been really rough... with infections.... but I dont' think you will get near the relief and prevention on just MTX and plaq...... JMHO..

talk w/ your RDs..... get advice from both and I have NO doubt that you will make a very intelligent decision.

and Yeah.... Mexico is a must!!

let me know about these other tests, Lin!! I'll be keeping you in my thoughts.

[QUOTE=LinB]I'm going to try and condense this as much as I can and hopefully you'll get a general idea of what has transpired in the last 90 days.

I've been on antibiotics for a gum abcess and a GI bacterial infection for 37 days out of the last 90 days.

February - Antibiotics for 7 days prior to root canal for infection and gum abcess, antibiotics for 10 days afterward.

March - developed GI bacterial infection - no treatment

April- Cipro prescribed for 10 days for severe GI bacterial infection and Dr. thought that it would clear up the gum abcess that cropped back up.

April - Gum surgery for abcess and 10 days of Ampicillin

Have been off dmards and biol. for 4 months due to multiple infections.

Had gyn exam and found a breast lump, had inconclusive mammo due to dense breasts and Dr. ordered a sonogram.

I guess I need some insight into should I restart mxt and sulfasalazine in June? I feel that's my best option. I'm in no hurry to restart Humira. Too many infections in the last 18 months.

I think I need a second RD opinion?

I don't guess I'll do anything until after the sonogram of my breast and I see what the final diagnosis is.

Any ideas and help would be appreciated. I'm at my wit's end. Very frustrated and disappointed. This isn't my usual state and all of the oldies know that. HELP. Lindy

[/QUOTE]

Sorry that things are so out of control for you right now

I don't know about restarting mxt and sulfasalazine in June. Perhaps that is a question that needs to be answered by more than one RD.....Another reason to get a second opinion. You keep pushing your RD for answers...that is what I would do, if I was in your position!

It's my hope that things will start improving for you very soon.

Lynn

LinB, let me say I'm sorry to hear all this is going on at the same time. It's hard enough to figure out what to do when all you've got going on is RA. The infections and lumps and all just pile on the anxiety, and make it so tough to concentrate on dealing with each thing, one at a time. It's overwhelming.

I saved the information below, which Lynn49 posted some time back. It was dismaying to me that damage could occur even when you're in remission. I don't know if it will help you or not.

When rheumatoid arthritis (RA) is in clinical remission yet structural deterioration continues, the cause appears to be subclinical joint inflammation (synovitis) that can be detected by ultrasound and by magnetic resonance imaging (MRI), according to a prospective longitudinal study by U.K. and U.S. researchers published in the October issue of Arthritis & Rheumatism.
The study is reportedly the first to show both this direct association and to demonstrate that subclinical inflammation can predict later results by X-ray examination of clinically asymptomatic joints.
This study used the same cohort of patients who had participated in an earlier phase of the study, published in 2006. In that phase, the authors had established that even though most of the patients fulfilled standard criteria for RA remission, and all were receiving disease-modifying antirheumatic drugs (DMARDs), sizable majorities of the patients showed synovial inflammation when imaged with ultrasound or MRI.
In the current analysis, 90 participants underwent X-rays of hands, wrists and feet, as well as MRI and ultrasound assessments of the dominant hand and wrist, at baseline and then 12 months later.
The patients had a mean age of 57 years, two-thirds were female and 91% were taking DMARDs. At baseline, median disease duration was 7 years and median remission was almost 2 years.
During the 12-month study period, there were no statistically significant changes in measures of RA activity; that is, all patients were still considered to be in remission, senior researcher Dr. Paul Emery at the University of Leeds, UK, and colleagues report.
Despite being in remission, 17 of the 90 patients experienced an overall increase (p = 0.001) in their radiographic joint damage scores. In addition, baseline scores as determined by the more sensitive imaging methods were significantly associated with the likelihood of subsequent structural deterioration in the metacarpophalangeal joints.
The results, write the researchers, "suggest that, in the majority of RA patients who are treated with conventional DMARDs, joint damage is closely related to subclinical inflammation, which in states of low disease activity, can only be accurately detected by imaging techniques such as musculoskeletal ultrasound and MRI."
The authors suggest that the threshold for additional intervention in such patients might need to be lowered, since they could benefit from additional therapy even when RA activity is low.
Dr. Emery told Reuters Health that barriers to wider use of ultrasound and MRI in assessing subclinical manifestations of RA include cost and training requirements, as well as access.
Arthritis Rheum 2008;58:2958-2967.

Aw Lindy, what a lot to have to deal with all at one time. I think I'd seek a second opinion if I were you. I'm just so sorry to hear all this, and you can trust that I'll be praying for both you and your medical team.Lindy; Bless your heart. You are such a brave lady. I admire you so much. You've been struggling with all of this and yet you haven't let on that you were shouldering any of this burden. I know it's hard....but keep your chin up. Keep that positive attitude that has brought you this far. You'll get through this too. Look how far you've already come.

The liver issues are strange to me since you've been off you meds for so long. Are any of the antibiotics known to cause elevation in the numbers? Mine were high for a while when I was taking MTX and it wasn't until I was completely off for at least a month before they returned to normal. What were the numbers? Do you have the labs at home with you?

The not living in Mexico advice seems odd to me too. I know you see your doctor on a regular basis so I don't under stand that...and living there and traveling brings you and your husband so much personal happiness. To me that's some of the best medicine you can have. Why that would be bad for you I don't understand. Maybe there's a reason we just don't understand. Hopefully at your 30 minute long appointment you can get him to explain it so that it makes more sense to you.

Maybe a second opinion is warrented. How hard would it be for you to see another RD at this point? Is this the first time you've had issue with this doctor?

Was any of your medication the cause of any of your infections that you've had recently.

Maybe he's telling you to stay out of Mexico now because of the whole swine flu thing. You can't be in your top form right now, so maybe he thinks you're more susceptable.I don't blame you for being frustrated. Whenver there is a doubt, a second opinion is always welcomed. I have full faith in my Rd, but I have gotten second opinions when I think it is needed. He supports it.

What is the deal with Mexico? Why doesn't he feel it is right for you? He should have a good reason-otherwise keep his mouth shut. I know you love going to Mexico each year-I think being places you enjoy helps overall healthwise.

Let us know how your appointment goes. Good for you for standing up for yourself.

Thanks for your help. Reading some of the posts has solidified some of the things that I need to do and other things are a clearer.

Yes, I've been on probiotics for the last 10 months. I take them while I'm in Mexico due to stomach issues and have just continued. His theory is that there are too many different infections to acquire while in Mexico and Central American. We travel quite a bit while there and medical care isn't always the best or in some cases not available. I see his point and I may have to change my lifestyle if we want to continue going. RD also is concerned about TB. TB is through out Mexico and it's not just a poverty level disease.

Antibiotics can affect your liver so they might be the culpright. I'll have them tested again in a couple of weeks.

The initial reading of the mammo was negative. When the gyn saw the results he wanted a sonogram because he definately felt a breast lump that didn't show on the mammo probably due to the dense tissue in that particular area. He talked to the radiologist and did a second reading and concurred that a sono should be done.

I'm sure that the infections were caused by having a suppressed immune system and so does the RD.

I have an RD appt. today and I'm going to tell him to consider me and treat me as a second opinion who walked in off the street. Tell me what you'll do and recommend, give me a treatment plan based on that. Review what we've done for the last 4 years.

I had a sono of my hands and wrists when I was in the clinical remission period and the most current one shows a quick progression of damage and synovial fluid in all areas. So my dilemma is if I'm going to occur damage while on meds. that are making me so ill and have the possibility of making me severely ill then why take them? I'm doing fine now, little pain or stiffness, just all of this underlying damage ocurring. I'll start MXT and Sulfasalazine and see if it helps enough that I'm back to where I was 5 months ago and not restart Humira. It's a dilemma. I think I'll probably head to Mayo Rheum. Clinic in Scottsdale for a second opinion if I don't like the answers today or if I don't walk out of his office with a clearer picture and a treatment plan. I'm giving him one last chance. Also, going to talk to him about how he treats his patients. Lindy

[QUOTE=LinB] It's a dilemma. I think I'll probably head to Mayo Rheum. Clinic in Scottsdale for a second opinion if I don't like the answers today or if I don't walk out of his office with a clearer picture and a treatment plan. I'm giving him one last chance. Also, going to talk to him about how he treats his patients. Lindy [/QUOTE]
Dilemma indeed. I am appreciative of your approach with asking your RD to treat this visit as if it was a second opinion and sometimes physicians need to be reminded patients are human and composed of more than just the pieces of paper in the chart.

Please know that you are in my thoughts.

All good things to you, Shug
LinB,

Yikes, my advice, get a second or third opinion. If your current doctor is not what he/she should be, get a new one on the sly. Can you not take either low dose prednisone and/or plaquinal? Boy, I feel ya about those antibiotics and gi issues. I'm still working on those. I was on antibiotics for 5 months, two months thru iv and three months (changing) 2 different ones at 5 times a day, and one was the tendon blowout antibiotic for a time, five days in the hospital when my body turned on the antibiotic Zosan. The only good thing about your story is that it makes my medical troubles so much more insignificant. Wishing you a miracle.

LEV

Wow. My stomach is in knots after reading what you are going through. This disease is so complicated and confusing. I think having another RD look everything over would be a good idea. Just to have another brain working on it. I'm thinking that the doctor may think living in Mexcio will subject you to a greater possibility of illness due to things like hygiene and parasites, etc.

I just feel so bad because you were feeling so good for so long and in clinical remission and hearing that you had damage occuring during this period is like a cruel joke.

I'm sure you are wanting to get back on some kind of DMARD as soon as possible to prevent anymore- but the question to the doctor is what the heck? How does this happen when I've done everything I could? That's the hard part- I don't think there is any answer. It's upsetting.

You and all of us are in my prayers that someone finds our answers.

I'll be looking for your post later today when you get back from the doctor. I think we'll all be anxious to hear how it goes. Good Luck!oh Lindy...

I'll be hoping for some good news after today's appointment.....

Sounds like a good plan to me...I'm with Babs, here's hoping you get some good news and the answers that you're looking for

ps...here's some info on antibiotics and liver damage

http://www.healthmad.com/Medicine/Antibiotics-and-Liver-Damage-Should-You-be-Concerned.538145

i'm all for a second opinion a fresh pair of eyes is always worth the effort. Besides the antibiotic connection have they investigated whether the GI and iver issues are relatedHappy hunting today, Lindy. I hope you get the answers you seek and the outcome is positive. You have good people here all pulling for you! Wishing you the best.

I'll restart MXT and Sulfasalazine in one month if the abcess is gone. I can't take Plaq. He'll see me in 3 months after the restart of the meds. To date I'm not showing any outward signs of a flare. Labs are normal, physical exam is normal - even my hands. He understands my reluctance to restart Humria but there have been some studies done that shows that the biologics are reducing erosions. If I decided to restart Humira in 3 months we'll start doing 3 month mris of my hands and fingers, measure the erosions and start charting and seeing if there is a reduction in the erosions. If there are reductions then I'll stay on Humira, if there are more erosions then we'll seriously consider Rituxin. If the rest of my body stays at this level it's so livable. I can still do everything, even golf and play water volleyball. The reason he's concerned about the absence of a biologic is when I flare, it's quick and severe. I can be golfing one day and flat on my back in bed and not able to move the next day. It's happened 3 times and I don't want to go through that ever again. The last time it took 4 years to get the flare under control. For right now it's one day at a time.

He told me that I was his most complex patient due to RA/PsA/OA, pulmonary fibrosis and cardiac RA nodule complications. Sometimes, he doesn't know what to do. I think one of those times was the appointment 2 weeks ago. Doctors don't like to admit they don't know what to do. He did and I admire that. Frustration was talking the other week. This week I got a treatment plan, explanations, everything that I needed. My hands aren't as bad as it all reads because I still function with them. I'm still jewelry making, doing small detail art. He told me that I needed to complain more often and not say that everything is wonderful.....but then that's me. My pain threshold is also high and that doesn't help. I think that's good advice for all of us. Hands don't need any follow-up but if they do in the future, then he agreed to Mayo or Scripps. I can golf. In fact my case has been under discussion at Scripps. I was very satisfied when I left his office and that's unusual.

Sono is scheduled for next week. Thank you all for your help. It helped me put things in proper perspective. I have more to add but will do it later. Lindy

LinB2009-05-07 15:34:43Well done, Lindy, well done! That is good news! So wonderful you have put together such a great team! What did he say about your liver function? Good news there too, I hope!

Way to keep your chin up, Lindy!

Sounds like you had a really good appointment! I'm so happy that your appointment went so well . Good luck Lindy - and it looks like you have a plan!

Hugs,

Pip

He thinks liver functions are slightly elevated due to fatty liver.....OMG, I hate that term!!!! He looked at sonogram from a year or so ago and it showed FL. Doesn't feel that it's med induced. I've been dieting the last couple of weeks and plan on continuing the diet. When we got back from Mexico I was eating everything in sight.

I'm more settled and not nearly as stressed. I can focus on Stan's health issue and help him heal. We're going to Vegas on Saturday and come back on Tues. Need a few days away. Lindy

[QUOTE=LinB]I'm more settled and not nearly as stressed.[/quote]
Lindy, I am glad to hear this. I can only begin to imagine the stress that has been sitting on your shoulders and populating your mind.
[quote] I can focus on Stan's health issue and help him heal. We're going to Vegas on Saturday and come back on Tues. Need a few days away. Lindy[/QUOTE]
Wow...did someone mention stress? I wasn't aware that your DH was having health issues as well. Las Vegas will be a nice change of pace, say eh? It sounds like a good appointment Lindy; I hope these changes will be helpful. What did he say about Mexico?that sounds positive........... I'm so glad!! Glad you have a plan and it looks like you can have a positive outcome. Best of luck that all runs smoothly. Have fun in Vegas- win big!!!!Lovie, we talked quite a bit about my living in Mexico. I volunteer and go into villages and work with mostly Mexican women on the Cancer De Mama project. We collect bras and breast prosthesis in the states and fit Mexican women because they're not offered a prosthesis after mastectomy. He doesn't want me doing that. TB is widespread among the villages and there are other diseases that could be bad news for me. We agreed that I wouldn't have any personal contact but would work behind the scenes. He questioned me in detail about where we live. When I told him we lived on the beach isolated and not in the middle of town where it's crowded he was more inclined to think it would be ok. He was also concerned about medical treatment. In the area where we are medical treatment is great, probably better than Yuma. Anyway, I have his ok and that's all I wanted. I'll deal with the details when we go back and be extra precautious. The one thing he didn't realize is that I had all of this figured out before I ever went to Mexico. We chose the area we're in because of the great healthcare. I knew there was TB and I take extreme caution when dealing with the mountain people. He didn't ask me enough questions or discuss it with me before. All he heard was "Mexico" and thought I was just blindly dancing around the country. Lindy

Lindy, that is good news on Mexico! I'd be dancing if I lived on the beach! Besides, you need to get back to your garden, right? I hope all goes just as well for Stan and news next week is positive for you.

Win a mil in Vegas! Waddie dear, our life is pretty simple and we do dance on the beach. In fact, I'm thinking of repeating our vows next winter on the beach. Stan doesn't know what I'm thinking. I'll let him know when we're sure we're going and I have all the details worked out. Anyway, we'll know more about Stan in Sept. Dr. wants him to lose 30-50 lbs. and he'll have more testing in Sept. We expect everything to be fine. I'm so looking forward to my little garden and to see what makes it through the rainy season. I can't wait to plant herbs, veggies and more tropical flowers. I'll go on the hunt in the jungle when we get there to collect more specimens. There are several of us that garden and we made plans last year to go foraging this coming winter. If you hear about 3 middle-aged gringas lost in the tropical junge, it's just me and my friends. Send Tarzan!!! LindyI forgot. I didn't wait the month to start MXT and Sulfasalzine. I started today. I got up this morning and now my left wrist is swollen and both hands are swollen. I had a hard time getting my rings off. I think the flare has started. We leave for Vegas tomorrow for 3 days and I guess I'll take my pain pills. What's new another hopped up druggie in Vegas. Hopefully, I can make it for several weeks until the meds kick in. It's been over 12 weeks since I quit them and I have a feeling it's going to be like starting them the first time, weeks before I have a positive response. Have to call RD and have them chart my start date. Lindy