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Good day everyone,
Every 8 weeks since diagnosis I have had blood work done and checked in with my rheumatologist. She has tolerated my AP treatment, although not truly supported it. My treatment, diet changes, dosing regime, etc have all been the result of my own research and all the great advise shared on this board. The doctor has said on several occasions that as soon as there was any sign of trouble she would insist on me changing my treatment.My numbers (SED rate, Rf etc) are not perfect, but pretty low. My last appointment on Tuesday of this week included x-rays of my hands and wrists.
The rheumatologist seemed happy when she finally found a reason to try and force me to abandon AP. The x-rays showed some joint space narrowing in my wrists and a few erosions in the finger and knuckle joints.
She immediately told me that she would no longer prescribe the mino, and that I have two weeks choose between Enbrel or Humera.
My head was spinning ! I could not believe my eyes. In the 10 months that I have been on the mino I feel better. I feel like I am making progress. How can I be getting damage, when my level of inflammation is less, my pain is less, my blood work numbers are lower ?????
I cannot….. I will not, drink the kool-aid and shut off my immune system with the tnf blockers. As such I have made an appointment to go up to Riverside and see Dr. F. Time for expert advise.
Any body out there have experience with Dr. F. in Riverside CA?
HAPPY HOLIDAYS TO ONE AND ALL !
😎Starla
You do have a good question though.. If you are feeling better, your blood is showing better, but you are getting joint damage? This was damage you didn't have before I presume..
So, is this normal? I know RA is a progressive disease that causes joint damage and AP is just a treatment but AP goes after the source whereas the conventional meds go after the symptoms.. Being that you are treating the source, I wonder why there is now damage showing?
My only x-rays prior to these were taken when I was diagnosed August 2007, so that would have been about 6 months before I started on the mino.
I have no way of knowing if this damage took place during those months prior to mino, or during the last 10 month while taking mino. Too bad I did not do any films in February when I started the mino, then I would know. Totally an uncontrolled experiment !
I know! It's sucks not knowing what is doing what!! Hopefully some of the wiser folk here will chime in with some advice.. Good luck to you.
First, I apologize for the following rant.
That doctor knows darn well that those erosions are just as likely (more likely IMHO) to have occurred in the months between diagnosis and beginning AP treatment, the doc grabbed the first opportunity to force you to do it their way. This is infuriating. It is true, you will never know, but the doc doesn't know either. What both you and the doc do KNOW is that joint erosions are more likely to develop during periods of inflammation, so it is more likely they developed when you were experiencing inflammationwhether that was pre or post AP.
Dr. F will know how to guide you. If you want details about what to expect from Dr. F I would be happy to answer your questions via PM. Both myself and my daughter are patients at his clinic, as well I have spoken to many other patients of his.
Cheryl F.
Don't apologize for the rant ! That is how I feel, infuriated.
During the first few months of my disease my hands were so swollen with inflammation, they barely looked like hands. My fingers looked like sausages, and my knuckles were totally invisible. I also suspect that is when I got the damage.
I am anxiously looking forward to seeing Dr F. It will be great to see a doctor and not feel like I need to defend my opinions on the infectious theory.
How unbelievably arrogant of your rheumy. She will no longer presecribe the mino and you have two weeks to decide on Enbrel or Humera……who does she think she is? For that reason alone, I would be changing my doc. Good for you that you have decided to go see Dr F. I hear very good things. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Elaine,
I'll send the phone number by PM.
From what I have heard and experienced myself is that the wait to get a new patient from out of town appointment (people who live in Southern California have a different process) the wait seems to be about two months. I calle
in late September and the first available appointment was mid-November, I am sure the time frame varies from about 6-9 weeks would be my best guess.For out of town patients, the first appointment is two days. You have some labs drawn at “home” and overnighted to Dr. F so they are available for your first appointment. On the first day of the two day appointment, you see Dr. L, Dr. F's associate, he does a thorough exam and goes over your history, then they take blood for labs that will be run in the on-site lab overnight (most of them) and they do xrays. Then, you coome back the next day and see Dr. F. He too does a thorough exam, goes over your history and then makes his initial recommendations.
From all I know, he does not require a washout period for people currently on AP.
I would be happy to answer any questions you might have. I'll send my telephone number in the PM with Dr. F's number.
Cheryl
I also have just had an x-ray and have lost most all my cartilege in my knees and my wrists and hands are not great either, sobering news as I've been on the mino for RA since 04 but did not get an x-ray till now, and the RA said there was significant joint loss in the past 4 yrs. I was diagnosed with Lyme in Feb. 08 and that's when the ole' knees really flared up. So truthfully, I don't know if the old RA Doc was right when he was pushing the humira last December (when I was feeling the lyme/joint problems but didn't know it was lyme). I didn't take the bait but went to Dr. F. instead.
I did see Dr. F. for the RA but in Feb. 08, I asked him to include another lab test for lyme which he did . He used Igenex labs and it was found and reconfirmed in april 08. I found it difficult to get info by phone as I was a longdistance patient and so kept asking him if what I was on was treating the lyme because in april, he said HE would treat the lyme but back home I realized he didn't change any of the meds. Finally, I got a fax saying I should see a lyme specialist, so I lost several precious months there. I also made an appointment for Dec. but cancelled it as my knees were acting up. He sent me a letter saying since I had missed this appointment and he hadn't seen me since april, I was no longer a patient. This was a real rude awakeneing as I had no idea that his policy was to dump you if you miss one appointment as I'd like to have known this up front! I also don't understand the need to dump me, as I've never had that before. My old RA doc for example, I would go for a year or so if I was fine, and he didn't care. I would come back when I had flare ups, so I would be cautious about expectations as I was so so hopeful back in Feb. At least I got my lyme test I wanted but it all shows me that it is WE who have to drive the treatment, not the other way around! I too am facing a more traditional doc who will advise me to take humira and he will have proof this time as well, as he looked at my 04 xrays which were okay. I was on mino the whole time and did not agree to go with humira. I have several emails out asking friends on this list for help or advice. I too am startled and confused asl I really really want to keep myself walking and moving. I hope to learn more and will pass any info along.
Staria,
I also see dr. F for my SD. I am an out of town patient, I live in the SF Bay Area. I'm never kept waiting, they always ask me when me return flight time is so I'm always assured to get back to the airport in time for my afternoon flight. I've had no problems with contacting him over the phone, he usually calls the same night or next day. Just recently, after getting some lab results in his office, he called me before he left for vacation and advised me to get some additional labs done at home, he didn't want it to wait until he returned. He has helped me tremendously since I started seeing him in May of 2008. I see him every 2 months or so. I do schedule two appointments at a time, he is extremely busy. My first appointment with the office was exactly as Cheryl noted. Good Luck to you.
Terre
[user=163]sandy[/user] wrote:
I also have just had an x-ray and have lost most all my cartilege in my knees and my wrists and hands are not great either, sobering news as I've been on the mino for RA since 04 but did not get an x-ray till now, and the RA said there was significant joint loss in the past 4 yrs. I was diagnosed with Lyme in Feb. 08 and that's when the ole' knees really flared up. So truthfully, I don't know if the old RA Doc was right when he was pushing the humira last December (when I was feeling the lyme/joint problems but didn't know it was lyme). I didn't take the bait but went to Dr. F. instead.
I did see Dr. F. for the RA but in Feb. 08, I asked him to include another lab test for lyme which he did . He used Igenex labs and it was found and reconfirmed in april 08. I found it difficult to get info by phone as I was a longdistance patient and so kept asking him if what I was on was treating the lyme because in april, he said HE would treat the lyme but back home I realized he didn't change any of the meds. Finally, I got a fax saying I should see a lyme specialist, so I lost several precious months there. I also made an appointment for Dec. but cancelled it as my knees were acting up. He sent me a letter saying since I had missed this appointment and he hadn't seen me since april, I was no longer a patient. This was a real rude awakeneing as I had no idea that his policy was to dump you if you miss one appointment as I'd like to have known this up front! I also don't understand the need to dump me, as I've never had that before. My old RA doc for example, I would go for a year or so if I was fine, and he didn't care. I would come back when I had flare ups, so I would be cautious about expectations as I was so so hopeful back in Feb. At least I got my lyme test I wanted but it all shows me that it is WE who have to drive the treatment, not the other way around! I too am facing a more traditional doc who will advise me to take humira and he will have proof this time as well, as he looked at my 04 xrays which were okay. I was on mino the whole time and did not agree to go with humira. I have several emails out asking friends on this list for help or advice. I too am startled and confused asl I really really want to keep myself walking and moving. I hope to learn more and will pass any info along.
Sandy, if I were you I'd focus on finding a Lyme specialist (LLMD). Lyme can destroy your joints.
Hi Starla,
I have just been through the same with my Rheumy last week, he just dismissed me, just like that after pulling and proding my wrists, telling me come back when I needed a referal to the hand surgeon for surgery. It took me a while to get over that visit. They certainly can confuse you, but I am back on track now, like your thoughts, how can you feel less pain with damage still occuring?
As far as the Humira goes, thats what I was on when I suffered a huge infection, which put me into hospital :sick:, but I guess I should be thankful, after coming out, I was more determined than ever, which led me to this Roadback :blush:.
Good luck with Dr F. and Merry Christmas and have fun :blush:…………Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.
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