My husband & I have finally concluded that we will be sending all of my health records to John Hopkins Teaching Hospital. After 2 weeks with no return phone calls from 2 separate Rheumy's here in town, we have decided to move forward. I did a lot of research and we have chosen this particular teaching hospital because they are ranked #1 for their Rheumatology program back here in the states. They have over 30 Docs in the program and I have singled out the one Doc I am hoping to see. Yes, it is a pain in the ass, and yes, I am upset that I have to pay for airfare and a hotel simply because the level of care sucks here in Naples, Florida but it's time! It's going to be a paperwork shuffling exercise and one I do not look forward to but I have no choice. I will keep everyone posted! Have a beautiful day! By the way, I posted a picture of my little guy, Chivas, who is the light of my life!
It's time to take a leap....: My husband & I have... - PMRGCAuk
It's time to take a leap....
Ha! Chivas rocks!! And good luck. I have heard Florida care is definitely not the best. It is good you are able to do what you need to do and have hopefully found someone who you will trust!
Thanks yogabonnie! I'll keep you posted!
It seems strange that care not good for condition seen as older persons problem in Florida. Or is that a Hollywood construct that Florida filled with retired people? I am in uk so info limited to tv and film.
I am sorry you are having such a bad time getting effective treatment. Fingers crossed your current strategy bears fruit..
Dog very cute. Only slightly bigger than soft toy😉
I guess warm weather attracts unqualified docs? There appears to be a complete shortage of Rheumys and Endocrinologists.
I agree with that statement 100%. My Rheumatologist is in NJ. We communicate very often. He put m on Actemra in August. I could not get my ESR and CRP the down and couldn't get a rheumatologist here to put me on this drug or to treat me properly. I have been on prednisone for 6 1/2 years. The rheumatologist down here wanted to wait until I was down to 10 to start Actemra. I went back-and-forth between 40 mg and 20 mg and the lowest I ever got to was 12. By the time I got to New Jersey I was back up to 20 with very high blood numbers. This doctor immediately started on Actemra . Within two weeks my ESR was down to four and my CRP was .49. I really cannot tell what the side effects are because I have been on prednisone so long and have so many side effects from that. I do know my cholesterol shot up really high and there are a few other blood issues. We watch that carefully. Good luck to you.
Wow, what a story! I’m thankful you have a qualified Rheumy in Jersey! Thanks for the enlightening feedback.
Interesting to hear about your experience with Actemra. What dose of pred are you on now?
Just reduced to 6.5. Looking to experiment with shot every 2 weeks. Haven’t discussed this with my New Jersey rheumatologist yet. Just took Cortisol test will get results on 1/23. Platelet count is below normal. I don’t like that. Don’t like 325 cholesterol either. Will keep in touch. I am so sorry you did not get approved. I think your national Institute of health is being penny wise and pound foolish.
It may be that the incidence of PMR/ GCA is even lower in Florida than the rest of the States..there aren't many descendents of Vikings in Florida. ..so maybe the rheumatologists there aren't interested ..
You are probably right regarding the incidences of PMR/GCA being at a low level in the sunshine state. However several of the other autoimmune diseases like RA affect the aging population. A qualified Rheumy should be well trained in all autoimmune disease. Hence, the reason to travel to a teaching hospital where docs actually collaborate with other specialists! Thanks for the feedback!
All the MINNESOTA vikings head to Florida for the winter!
I'm in a retirement community in Florida. There is one pmr person up the street, and one around the corner. (We are transplants, not natives.). We all are under the care of our gps...the rheumie I saw was stiff and unyielding; my gp is wonderful.
You’ve got one in your corner and that’s something to celebrate!
I too have two people in my community in South Florida with PMR/GCA. I think part of the problem is the rheumatologist are loaded with our RA patients and osteoarthritis and Cortizone shots. This they know. They do not know our disease and do not have The time or inclination to investigate it. This is unfortunate.
I completely agree! I might add that due to our messed up healthcare system, it’s all about the quantity of patients they take in instead of focusing in on quality of care! It’s disgusting!
During the winter Florida is full of "snowbirds" - Canadian retirees fleeing winter. However if you have a serious health issue when in the States your insurance will no longer cover you for another. Happened to my sister in law who had to go to hospital for heart issue when in Florida the year they decided they'd become snowbirds. That put paid to that idea as she can no longer get insurance to cover her for a prolonged stay. Reason I suppose is because of the astronomical charges for health care. So Florida may be full of retirees but I guess they can't afford to be treated for what ails them.
I haven't quite figured out the healthcare dilemma here in Naples. It's time to seek advice somewhere else. Thanks for the feedback!
Good Luck!
That's true of some insurance but not true of all.
But Medicare does vary wildly among the states. What's paid for in some states isn't covered in others, and that determination is independent of one's residency.
Nevertheless, good_grief, the costs can be astronomical. I am speaking from the perspective of a Canadian, not a US resident. We were on a cruise on a ship registered in the Marshall Islands but quite obviously an American company. My husband got sick. I can't remember now if it was sinus or a chest infection. However he visited the on board clinic and got a prescription for antibiotics, which helped. The bill for this was, wait for it, eight hundred dollars. Upon our return home he first of all had to recoup from the provincial medicare eighteen dollars, the cost at that time (always paid for by medicare) of an office visit, before the insurance company would reimburse him the rest. My s-i-l's experience in Florida was similar, although exponentially greater (tens of thousands of dollars) because of her brief hospital stay, after which they came home. No wonder insurance companies are gun shy about continuing coverage for people with pre-existing health conditions.
I hear ya. During the recession I went without insurance coverage for several months because the monthly premium was more than my mortgage payment, and there were no employment prospects in sight. I was strong and healthy and not concerned.
Then a case of poison ivy (never having had it I had no idea what it was) cost me $1200. Still less than a premium payment, but really?
😱😲
Good_Grief: So different from the experience we had in Vienna in 2005. My husband suddenly developed severe abdominal cramps and we wound up in the big regional hospital in the middle of the night. He had xrays, blood taken and he was seen by a doctor. We got a bill for $189. That was all. And even that was reimbursed by Kaiser, our HMO.
I have a Canadian friend who takes out a special insurance policy whenever she comes to the states.
The differences in price between holiday insurance for Europe, the Rest of the World excluding the USA and the Rest of the World including the USA are immense!
Hindags:
I wasn't on vacation. I was weeding in my back yard. And I went to a local GP.
I spent $700 on 2 office visits and $500 on medications.
The cost of living in NYC...
Wow. I went to Stanford for a second opinion outside of my HMO insurance and paid out of Pocket to see a highly recommended rheumy. It cost $285 for 1.5 hours, including several indepth secure e-mail conversations. I went for a 40 min follow up 10 months later. Also reasonable, $119.
Also went for a consult re taking fosamax with the dr. who did the initial studies. Over two hours out of pocket. I was chatged $400.
All charges seem quite reasonable for the San Francisco Bay area. I find that at Stanford they give a 50% discount for immediate pay via credit card or check.I guess it saves them a lot to avoid billing or attempt to charge my HMO , get denied, and then bill me.
Take control! I will keep you in my thoughts and hope that this journey brings you the peace, information and relief that you seek! Best if luck.
Thanks again for your support!
You are lucky to have access to Johns Hopkins.. I would do the same.
Good luck to you. I have thought about visiting John Hopkins for my retinal vasculitis. I think they are considered #1 for vasculitis. Keep us posted!
You can count on it!
You can't go wrong with Johns Hopkins. However, after you get some answers and help there, if you want a good place in Florida to continue your treatment, I recommend Mayo Clinic in Jacksonville, FL. You can drive there (4-1/2 hrs), and they have reasonable hotels on the grounds and in the area. I'm satisfied with the care I get there.
Your feedback is highly valuable. I have a feeling Mayo will be our next stop after John Hopkins. Can you recommend a Doc? Many thanks!
There are only 5 doctors in the Rheumatology Dept. in Mayo-FL. I see Dr. R. Butendieck, but it's not so much a question of which doctor you see as how well Mayo co-ordinates with all their departments and even with outside specialists that you see. Every doctor can easily pull up your records and discuss things with you while you are in the office with them. They take their time and they follow up. I have traditional Medicare insurance and a Medicare supplement insurance to cover the shortage. It covers well. You can also see what other insurance they accept on their website.
Thank you again! This forum is so wonderful!
As a new person, this is an awesome form! ✔✔✔
I agree!
I really hope you do not regret your decision to get your treatment from a doctor so far away. I had an experience that was a little bit like you're situation. In my case I went to another state for laser back surgery. (Which by the way is a scam.) In any event when I was not getting the relief I was promised they wanted to see me but I was home and knew that I could not make the drive to their location. So I never was seen again. There are no doctors in my state that does laser back surgery so I could not even go to a local doctor. I'm just explaining my experience so you will take that into consideration when using a doctor so far away.
My husband is in healthcare and has been pushing me to go to a teaching hospital. Collectively, each case and diagnosis is reviewed by an entire team of highly qualified specialists. They won’t stop until they have exhausted every resource. One other important reason I’m going there is because they stay abreast of research findings! They communicate with specialists all over the world!
I live 3-4 hours drive to the Kansas School of Medicine. If I ever get into a bad situation I will definitely give them a call.
Please be certain they have Docs who are versed in diagnosing Autoimmune Diseases.
My husband has been disgusted with the level of care I have received for the past 2 years. No one really stepped up to offer help and it's just been me being proactive but I'm not a doctor!! Kind of a scary
My next stop, if I think I need it, will be University of Michigan or Mayo's..no more screwing around...but so far I'm hopeful that my Dr and I can figure this out...he's receptive to anything I bring up....so far..
Amkoffee,
I just wanted to say I could relate to your post. I checked into a non-invasive surgery that was also only done by a company many states away from where I live. It was not something that came to pass but I could see the logistics nightmare with follow-up appointment time and money. I hope things are going better for you now with your back. I am new here diagnosed with PMR October 2017 age 55. Take care.
Well my back is no better and now I have PMR on top of that. I'm just one big ball of pain. Lol Seriously the prednisone is doing a pretty good job of controlling my pain. Of course I'm at 12.5 mg and I've been here many times. I just can't seem to get below 11 mg. I'm hoping this time I'll make it. I know my rheumatologist would like to see me get Bowl 11 mg
Let me know how you like the article. I plan on sharing it with my primary care doctor and my rheumatologist and psychiatrist so we will all be on the same page.
Amkoffee: Has your doctor ever thought about checking how much of your pred dose you are actually absorbing? As I said to someone the other day: your 11mg pred may be my 6mg pred if you are a 50% bioavailability person and I am a 90% person
Unfortunately not!
Laser back surgery is being done all over now successfully for lots of people. What state are you in.
Well I couldn't agree with you less nap1. Based on my experience with it I got absolutely no relief and spent over $14,000 of my own money for nothing. Have you had it done? And did it get rid of your pain?
I am sure that it helped some people or they wouldn't still be around. And in fact before I had it done I talk to someone who had it done in their neck area and did get results. And that was a reason why I decided to do it.
I never had laser surgery done but a friend of mine did who had suffered with back pain for I want to say 10 years and was walking bent over. when she was finished with them which was really one day she was walking straight and the pain was gone. Could be a fluke. This was done at the university of Pennsylvania. I guess it really depends on where the pain Originates.
If she was that bad off then I'm really glad that it worked for her. Do you still see her, is she still doing okay? I am surprised that a college such as Pennsylvania University is actually doing laser back surgery. in my opinion it's nothing more than quackery. And it's certainly not covered by insurance. So if you plan on having laser back surgery then you'll need to take out a loan or find somebody who is independently wealthy. Maybe you are I don't know. I took out $15,000 out of my retirement account. The surgery itself was $13,500. the rest of the money was used to pay for a hotel room and a rental car and meals.
Good idea. I did that and went from Delray Beach to Mayo in Minnesota. See what they have to say.
Hi Michell, I’m on the other coast here in Florida. I live in Boynton but my doc is in Ft Lauderdale. I believe she is very good and well qualified. You can call me and I will tell you about her, if you want to. If you do I would private message my tel no to you. I was diagnosed in May and ended up on 60 mgs for a while to get the symptoms of the GCA to leave and with the help of a weekly ACTEMRA shot I am now down to 6 mgs of prednisone. Still dealing with PMR .
That sounds great! Thank you!
Chivas is adorable! It sounds like you have a plan, good luck.
Bring your warmies! It's been mighty cold on the East Coast!
good for you! when I saw your post I could not help but kick myself that I have not done that. Thought of it many times I admit. It has been six years of frustration and my only consolation and advice has come from this forum. Now, after another adrenal crisis and hospital visit I am on another crusade. Interesting I have found the young emergency doctors at the hospital more aware and more willing to at least give my condition some thought, good luck.
I left my contact no in the other section.
What other section? Please do not leave private information on the open forum - use private messages to share that. This is just social media - would you put your phone no on Facebook?
It is private. Are you telling me you see it? When I first became a member another member left me her no and it could only be see by me. We had many private conversations.
That is OK then. That's why I asked "What other section?" This is a problem we have just had on another forum - people not realising that putting something on this part of the forum is public.
So were you able see what I asked you on your private page? It is working differently then last year.
Thank you for your kind and concerted efforts. I have decided to move forward with John Hopkins as my next level of care. I will keep you posted!
Best of luck and please feel free to call if you want information.
Michelle,
We will all be rooting for you. 🎉 Best of luck on this new new medical avenue. Please keep us posted. Janet ~ new diagnosed October 2017 age 55
Thanks Janet!
Awesome, please keep us posted of your progress. Wishing you the very best!
micheleinnaples So glad you have determined to get the treatment you need and deserve.
I have always heard that many Florida doctors live there for the lifestyle and for the fact that there are so many elderly people on medicare and medicare supplements. That means a large population of patients needing medical care and having insurance. Good Weather and Good Business. Maybe not such Good Medicine.
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