In need of new rheumatologist in Atlanta, GA

Hi there,
My rheumatologist here in Atlanta, GA fired me because I went to the Cleveland Clinic to consult with Dr. Villa Forte twice. She told me I couldn't have two rheumatologists and told me to continue care with Dr. Villa Forte. I sent Villa Forte a portal message about the possibility of using her as my regular rheumatologist but her assistant told me Dr. Villa Forte could not order the Rituximab infusions from Cleveland, that I needed to find a local rheumatologist or be willing to fly to Cleveland for every infusion. Currently in the middle of my second Rituximab infusion of the year (1st one was in February). But it's not only the infusions, which will only be twice a year, but it's also the labs that need to be done very regularly to check my ANCA markers. I think I would feel better to have someone local in case I am not feeling good and need to see a Dr. right away.

Dr. Villa Forte had referred me to Dr. Atul Khasnis who was her fellow several years ago, but unfortunately he is not currently taking any new patients bc he is leaving his practice and, when I asked, they couldn't tell me where he was going. I think it's that non-compete agreement. He is not leaving until middle of December and I need to see a Dr. sooner than that.
Another doctor I tried was the Emory Vasculitis Center Doctor, Dr. Tiliakos, but his first new patient appmt is not until January of next year. I need to see someone no later than beginning of December, 2017.
If anyone out there has good results with any Atlanta Rheumatologist, please let me know.:unsure:
Thanks!
Jeannette

Hi Jeannette,

I also see Dr Villa Forte, but live in Columbus - a 2+ hour drive from Cleveland. Up until this year, I had been getting my rtx under the supervision of a nephrologist at Ohio State who was on the team that diagnosed my wegs. Dr Villa Forte would send him a letter explaining the treatment, and he would write the orders. I would need to see him for an examination before he would authorize the treatment. He would also handle the insurance pre-authorization.

This worked well for me until this year. When I called his office in June for an August-September treatment, he had no availability until mid-December!! However, I was able to schedule my semi-annual checkup with Dr Villa Forte and my rtx infusion for the same day. Thus, I got my rtx in Cleveland instead of Columbus. I’ll probably do this going forward to minimize the bureaucratic issues. I only get one dose of rtx each year.

Of course, there’s big difference in cost and time between getting from Columbus to Cleveland vs from Atlanta to Cleveland. Because my infusion was scheduled at 8:30 AM, my wife and I went up the day before and also caught an Indians game and spent the night in a hotel near the Clinic.

I hope this is useful...

Pete,

What about your lab work, who monitors your ANCA markers through the year? and how often do you get blood work done?
Do you have the infusion regardless of what the blood results are?
How come you only get one per year? I typically hear of 2x per ear or 4x per year.
Jeannette

Hi Jeannette,

When I first began seeing Dr Villa Forte, I was also fortunate to have a PCP who was more interested in my care than his ego. Both Cleveland Clinic and Ohio State use MyChart for online medical records. I signed releases so both doctors could see my records at the other’s hospital. Dr Villa Forte would send an e-mail suggesting certain tests, and he wrote the orders to have the labs done at Ohio State. This has worked well.

My ANCA markers go unmonitored. I haven’t had them done since 2012. I get labs every other month. I get a CBC, comprehensive metabolic panel, C-reactive protein, sedimentation rate, and a urinalysis. I get a MyChart message when my PCP releases the results, usually within 24 hours. If something appears seriously abnormal (and I don’t feel right), I call Dr Villa Forte. I keep my lab results on a spreadsheet so we can look for trends.

I’ve gotten one course of rtx each year since 2013. I started out with four weekly doses of 500 mg (I think). The past two years, it’s just been a single 1,000 mg dose. I’ve tolerated this drug well, and it works well for me. I’ve never asked Dr Villa Forte for her rationale regarding my rtx treatments.

I lead an essentially normal life. I exercise on weekdays (lap swimming or power walking), be a little careful about what I eat, and just enjoy life (I retired in 2010).

I take the following meds on a frequent basis because of wegs: 4 mg of prednisone daily (tapering at 0.5 mg/month) and bactrim DS on MWF.

Hope this is useful.

Generally in my opinion and experience any doctor that does not welcome and support a consultation for a second opinion is one that that you are much better off without. All of the doctors that I have now and consider to be good care givers often encourage me to get a second opinion or consultation and will help me do so.

i bet she will help you find a local one too if you tell her about your experience since many are over loaded and over booked.

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Originally Posted by jmq

Hi there,
My rheumatologist here in Atlanta, GA fired me because I went to the Cleveland Clinic to consult with Dr. Villa Forte twice. She told me I couldn't have two rheumatologists and told me to continue care with Dr. Villa Forte. I sent Villa Forte a portal message about the possibility of using her as my regular rheumatologist but her assistant told me Dr. Villa Forte could not order the Rituximab infusions from Cleveland, that I needed to find a local rheumatologist or be willing to fly to Cleveland for every infusion. Currently in the middle of my second Rituximab infusion of the year (1st one was in February). But it's not only the infusions, which will only be twice a year, but it's also the labs that need to be done very regularly to check my ANCA markers. I think I would feel better to have someone local in case I am not feeling good and need to see a Dr. right away.

Dr. Villa Forte had referred me to Dr. Atul Khasnis who was her fellow several years ago, but unfortunately he is not currently taking any new patients bc he is leaving his practice and, when I asked, they couldn't tell me where he was going. I think it's that non-compete agreement. He is not leaving until middle of December and I need to see a Dr. sooner than that.
Another doctor I tried was the Emory Vasculitis Center Doctor, Dr. Tiliakos, but his first new patient appmt is not until January of next year. I need to see someone no later than beginning of December, 2017.
If anyone out there has good results with any Atlanta Rheumatologist, please let me know.:unsure:
Thanks!
Jeannette

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Pete,

They do all those blood test panels you mention on me as well as the urinalysis. Which are the specific test/numbers you monitor the trend of that are more the true indicator that you are starting to have a flare? Is it the SED rate or the C-reactive protein or the white blood cell count? Which ones specifically you do the graph on? Why don't you look at the P-ANCA or the C-ANCA or the other ANCAs?
I would like to put them in a spreadsheet as well and monitor their trend.

Jeannette

I follow sed rate, CRP, and creatinine pretty closely. I’m also concerned if blood is in urine as that may indicate possible bladder cancer (side effect of cyclophosphamide) or disease activity affecting the kidneys. My creatinine is a bit above normal, but stable. As long as I feel well and have no unusual symptoms, Dr Villa Forte regards everything is ok.

Thanks Pete. That's very helpful. I plan on charting those as well. Although Villa Forte has always told me that just the numbers are not a good indicators of a flare so not to act too quickly on the blood results alone, unless they are accompanied by symptoms. That symptoms are the most important thing. I know the symptoms are aleviated with prednisone but I am doing everything possible to minimize prednisone use.
Villa Forte told me to take 5mg last time I saw her (October) bc the SED and CRP were slightly elevated and I was having more intense joint pain. She also suggested another double infusion bc it looked like the beginning of a flare. I am undergoing the infusion (this week is my second of the set). I know that infusion will take at least two to four months to take effect.

In the meantime, I am supposed to keep things under control with prednisone. I took 5mg for a couple of weeks but then started tapering it off. Now only taking 3mg. The prednisone helps aleviate my joint pain and neuropathy issues but I prefer to cope with as much pain as I can in order to be in the minimum prednisone possible. After seeing the effects of being on 80mg daily for a while, I am terrified of it. It did so much damage to by body that I swore I would never go back on prednisone unless I was dying.
Does 4mg /day (what you are taking) eventually give you the "moon face" and weight gain side effects? Not sure how many milligrams of prednisone cause that to happen?

Jeannette

Hi Jeannette,

I started out at 60 mg/day of pred when first diagnosed. At that dosage, I regained the 25 pounds I lost at disease onset plus about 20 more. I never got the moon face, Buffalo hump, or roid rage, but I have about 10 pounds of belly fat that I can’t get rid of.

I was able to get off pred for a couple of months, but then started with roaming joint pain. Blood work was also getting abnormal, so I went back to 40 and got rtx. I was able to get down to 3 again before symptoms started again. I went back to 5 mg. I probably would have been ok at 4, but was too lazy to count out 4 pills a day. I stayed at 5 mg/day until the end of September. Dr Villa Forte suggested I could try 0.5 mg/month taper. I’m down to 4 mg/day now and all seems well.

I have been at 5 as part of maintenance meds for several years. I had discuss with my treating doctor trying to get down to 4 to see if that might help me control my Blood Glucose levels a bit better since that would equal a 20% reduction. My consultant at Mayo had always advised not to make any changes since I had done very well in staying in a drug induced remission from a very serous case of Wegs. I recently got an OmniPod which is a new tubleless insulin pump and it seems to be working much better than my old Tandem TFlex so now I am wondering if I still want to risk trying another pred reduction when things seem to be going OK right now.

Do you notice much change or difference between 5 and 4? Generally, my doctors have told me it would probably be insignificant since anything under 10 is considered rather low. And many people take such a dosage for years with little or no problems.

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Originally Posted by Pete

Hi Jeannette,

I started out at 60 mg/day of pred when first diagnosed. At that dosage, I regained the 25 pounds I lost at disease onset plus about 20 more. I never got the moon face, Buffalo hump, or roid rage, but I have about 10 pounds of belly fat that I can’t get rid of.

I was able to get off pred for a couple of months, but then started with roaming joint pain. Blood work was also getting abnormal, so I went back to 40 and got rtx. I was able to get down to 3 again before symptoms started again. I went back to 5 mg. I probably would have been ok at 4, but was too lazy to count out 4 pills a day. I stayed at 5 mg/day until the end of September. Dr Villa Forte suggested I could try 0.5 mg/month taper. I’m down to 4 mg/day now and all seems well.

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@drz — I haven’t noticed any changes so far. I started out alternating 5 mg one day and 4 mg the next. Now, I’m alternating 5 and 3 for an average of 4 mg/day. I’m essentially getting only a partial dose some days while getting a full dose on the other days. Perhaps this approach is easier on my body.

My normal routine of exercise is unchanged, and I feel fine.

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Originally Posted by jmq

Hi there,
My rheumatologist here in Atlanta, GA fired me because I went to the Cleveland Clinic to consult with Dr. Villa Forte twice. She told me I couldn't have two rheumatologists and told me to continue care with Dr. Villa Forte. I sent Villa Forte a portal message about the possibility of using her as my regular rheumatologist but her assistant told me Dr. Villa Forte could not order the Rituximab infusions from Cleveland, that I needed to find a local rheumatologist or be willing to fly to Cleveland for every infusion. Currently in the middle of my second Rituximab infusion of the year (1st one was in February). But it's not only the infusions, which will only be twice a year, but it's also the labs that need to be done very regularly to check my ANCA markers. I think I would feel better to have someone local in case I am not feeling good and need to see a Dr. right away.

Dr. Villa Forte had referred me to Dr. Atul Khasnis who was her fellow several years ago, but unfortunately he is not currently taking any new patients bc he is leaving his practice and, when I asked, they couldn't tell me where he was going. I think it's that non-compete agreement. He is not leaving until middle of December and I need to see a Dr. sooner than that.
Another doctor I tried was the Emory Vasculitis Center Doctor, Dr. Tiliakos, but his first new patient appmt is not until January of next year. I need to see someone no later than beginning of December, 2017.
If anyone out there has good results with any Atlanta Rheumatologist, please let me know.:unsure:
Thanks!
Jeannette

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Hi Jeannette,

I private messaged you also, but in case there are others in our Georgia area, I would highly recommend Jonathan Waltuck, a rheumatologist at Emory. I have been seeing him about 7-8 years.

Apparently I am his first patient with SLE lupus and Wegeners and the Wegeners seems to cause the most problems and pops up/attack’s different areas, including sinuses- the eyes, the ears, vocal chords, trachea, lungs, purpura, some kidney and something called strider with laryngeal edema.

Today I had my 2nd round of my second treatment of Rituxan at Emory that he ordered. He goes on vacation I think the end of every year and the times I have gone to my family’s Christmas gathering I start the slow build of my flare 24 hours later. Three Christmases ago I ended up at the Emory Emergency Room and since my oxygen was low they admitted me but you could tell they didn’t know what to do and Dr. Waltuck was off. I was discharged after a few days with them telling me not to take so much prednisone and reminding me of all the terrible side effects and one young guy said I might look into that hoarseness which is always one of latter stages.

A couple weeks later I saw Dr. Waltuck and didn’t progress much, but the energy it took to push in an effort to see him made me relapse and I lost my voice completely and cough worsened which caused spasms and I had laryngeal edema and my throat closes off up to my tongue like you would imagine anaphylactic shock. My throat and my face swells and this is when I am popping the prednisone like candy. I lost an kind of vocal. So I say Michael Johns who headed the Emory vocal Center Midtown (He’s now in Beverly Hills and I highly recommend).

I had vocal chord paralysis caused from the infection in my chest especially trachea and the persistent cough would cause the laryngeal spasms. I later learned this can be part of stridor, a condition that can come with Wegeners and caused other weird symptoms in the “danger phase” (my term). Dr. Johns didn’t know if my voice would come back. I learned the only cough syrup that works is the hydrocodone syrup. Botox shots did not work. The syrup any time I coughed Bactrim 60 mg prednisone and I started seeing Dr. Waltuck every month and he was shocked at the difference in a couple weeks and I had an iPad video of the swelling and laryngeal spasm to show him. And he agreed my cough sounded like a seal.

I realized I need an Emergency Room and he agreed to work with Dr. Langford at the Cleveland Clinic. She’s the one I settled on after reading a lot of reviews. But my havenese became ill and we thought he didn’t have much longer so I put off. He hung on for over two year. I am just now ready to go there even though the Rituxan is helping. My problem is where to go in an emergency. Dr. Waltuck think it would be beneficial and he said he would work with Dr. Langford and already consults on a couple patients.

I am 57 and apparently the Wegeners was the cause of my “lingering effects”-the sinus infections and ears draining ( I remember one ENT Dr telling my to blow the hair dryer in my ear-I was getting water in from the shower). The arthritis pain visible on X-rays when I was a freshman in college. The bronchitis that took
Months rather than weeks to abate. I am saying this to let you know I have been a professional patient on a long medical merry go round. Lots of doctors in Georgia, Tennessee, Los Angeles and a trip to the Mayo Clinic.

There are many doctors who still talk down to women. That was my experience at the Mayo Clinic in the 90’s and it took me a long time not to doubt myself and what I was feeling. So to me, the best thing I can say about Dr. Jonathan Waltuck is that not once have I ever felt he talks down to me and he really does care about his patients.

My advice to you Jeanette is to see if Dr. Villa Forte will call Emory and Dr. Waltuck for you. I bet she would and get you in quicker.

Terese



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