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Sjogren's Syndrome Support

Looking for a Sjogrens doctor near East Bay California

Hi,

Would love positive reviews on doctors near the Hayward area. Can also inbox me with names.

Greatly appreciate it,

Hello,

This is the hardest thing to do. I am still looking for a Rheumatologist that is not just medicating. I refuse to go on Plaquenil. The more I read about the side effects the more concerned I get. I must admit that I am overall very disappointed in the health industry. It is all about making money. Doctors (most although there are some shining exceptions) are more concerned with their lifestyles and the money they can earn.

I do not see any real advances in research...and then they give poor customer service.

I hope that you find a doctor.

Sorry for the vent but this is now a very sensitive subject with me.

I never realized how difficult this process would be. I've been seeing a Rheumatologist who is rated as a "Top Doc" in the SW Florida area, where I live. Had an appointment with him yesterday. Instead I had to see his PA who informed me the doctor is now going to a Consieger (sorry for misspelling) Practice. If I want to be his patient it will cost me $6000 per year. What the HECK! There are not many Rheumy's in this area.

Also I've been on Plaquenil now for several months. Some improvement in energy......but what side effects do you refer to? Also, the price for Plaquenil has doubled in the past two months. Has anyone else noticed this. I've been told by pharmacist, fewer Drug Company's are manufacturing plaquenil, therefore they can charge what ever they want. Not sure it's worth even taking anymore.

I understand the frustration. Feeling the same way.

I am also in SW Florida. There are not Rhematologists to speak of...and the ones that practice do not seem to focus/know much about Sjogrens.

Interesting about the fact that the DR is going into a Concierge practice. That seems to be a trend around here...enough wealth around and they do not want to deal with insurance.

With respect to the side effects, new studies suggest that the concerns with vision are greater than published or discussed with patients. So I would suggest that you have your eyes checked very regularly. There are other side effects...and truly, they sound worse than the disease. I refuse to take it because the cost/benefit analysis tells me that I do better without it.

Pricing is probably related to big pharma increasing prices because they can, there is nothing to regulate the price and also pharma is focusing on big expensive drugs and this is not one of them.

Until my cancer diagnosis and treatment, I was in really good shape and although tired...some of it was my superwoman Type A syndrome. Once I scaled back I felt better. Now I am dealing with chemo side effects. It seems that they "think" that this makes the Sjogrens worse...but truthfully, many of the side effects sound like Sjogrens...but could also be the drugs. Time will tell once I am done with chemo.

I am frustrated by the greed factor in the doctors and the owners of the practices (now seem to be a lot of really large companies) that want more profit [where is the calling to be a healer...read an article that in Cuba doctors are trained to emphasize the call of healer not money making machine; insurance that is taking advantage to increase prices; pharma that keeps getting bigger and making obscene amounts of money and NOT paying any taxes because they are all offshore and not paying taxes anywhere...

Medical Schools need to start looking at people with calling vs. looking for a lucrative profession.

Insurance/Pharma - has to be reigned in by regulation....the market complaints they place are BS...not true at all.

OK enough vent...back to work

I certainly wish you the very best. You are dealing with a lot.

I did see my Ophthalmologist once, before I started the drug. I'm rethinking this whole thing. I'm not feeling that much improved to continue taking it.

Take care................

I finally found a rheumatologist that understood Sjogrens in Walnut Creek, Midori Jane Nishio.

A Johns Hopkins Neurologist told me that Plaquenil causes vision loss within 5 years in 20% of patients. This was confirmed by my Ob/Gyn whose mother has taken Plaquenil for 30 years and who was currently diagnosed with (get this!) Plaquenil Retinitis, a disease directly related to a drug. No thanks!

Holy Cow! That confirms it for me.

Another confirmation for me, as to why this group is so great!

Cleveland Clinic Specialist in Functional Medicine/A.I. Disease told me to take Fish Oil at least 1 000 I.U. per day but freeze the Fish Oil because it is not defrosted until it hits the small intestine which is where it is absorbed. I've been taking 3000 I.U. per day and noticed a dramatic effect. Because it is frozen when it hits the stomach, you do not get the fish oil burping.

Hope this helps!

Maureen,

Do you mean Fish Oil has helped with Sjogren's symptoms? My eye doctor recommended this for my dry eyes.

Certainly worth a try.

Thanks

Connie,

Absolutely! Fish Oil has helped dramatically with all of my Sjogren's symptoms. Last winter I was putting in eye drops hourly and now I put in the gel before I go to bed.

I also went on the Institute of Functional Medicine's Elimination Diet, with brown rice being the only allowed grain, and was astonished to find food sensitivity after food sensitivity. Soy was most irritating to my eyes. Google the diet to get it. The diet eliminates the top 10 allergens in food in the U.S..

This was all recommended by the physician at Cleveland Clinic who believes I have "leaky gut" syndrome and most likely Celiac Disease due to family history and my Irish heritage. After more than a dozen abdominal surgeries I am not going to do the biopsy to confirm for Celiac.

I hope this helps you.

That simply is not true or even CLOSE to true. Any level of toxicity is less than 1% in 5 - 7 years and no record of toxicity under 1,000 gm of cumulative dosage (or about 16 gm/kg ideal weight). The average dose is about 400 mg/day but should be less.

http://www.the-rheumatologist.org/details/article/1066217/Hydroxychloroquine_Retinopathy_Still_Alive_and_Well.html


Maureen said:

A Johns Hopkins Neurologist told me that Plaquenil causes vision loss within 5 years in 20% of patients. This was confirmed by my Ob/Gyn whose mother has taken Plaquenil for 30 years and who was currently diagnosed with (get this!) Plaquenil Retinitis, a disease directly related to a drug. No thanks!

Everyone is entitled to an opinion. One simply chooses what is best for him/her.

Based on the advice of the neurologist at Johns Hopkins Neurologist and my Ob/Gyn, I would not even consider putting this drug in my mouth. I think I'll go with the National Institute of Health's opinion and John's Hopkins' opinion with use from an extensive period of time cause drug effects..

There's only over 13,000 articles on http://www.google.com on this. Don't you think it odd that the disease is named after the drug???

Ocular safety of hydroxychloroquine sulfate (Plaquenil).

www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
Loading...
by HN Bernstein - ‎1992 - ‎Cited by 33 - ‎Related articles
Ocular safety of hydroxychloroquine sulfate (Plaquenil). ... Body Weight; Humans; Hydroxychloroquine/adverse effects*; Retinitis Pigmentosa/chemically induced ...

Ocular safety of hydroxychloroquine sulfate (Plaquenil).

Author information

  • 1Washington National Eye Center, DC.

Abstract

Analysis of all published cases and Food and Drug Administration (FDA) reports of retinopathy attributed to hydroxychloroquine sulfate (Plaquenil) does not reveal any evidence of permanent visual field scotoma occurring when the daily dose is related to body weight and does not exceed 6.5 mg/kg for maintenance therapy. Risk factors of unknown degree may appear at this dosage level only when the duration of treatment exceeds 10 years or when chronic renal insufficiency is present. In the absence of risk factors, annual ophthalmologic examinations and central field testing are recommended because non-drug-related macular diseases commonly occur in the older age group. When risk factors are present, more frequent examinations are indicated. A modified Amsler grid screening test for the central 10 degrees of visual field is described and the participation of the treating physician in the testing program is encouraged to provide maximal medicolegal protection.

Retinal Disorders - Cooper Eye Care

Patients who are taking Plaquenil can develop a condition called Plaquenil ... Patients with retinitis pigmentosa have a defect in the retina which causes reduced ...

Thank you so much! I will check her out.



diannapitch said:

I finally found a rheumatologist that understood Sjogrens in Walnut Creek, Midori Jane Nishio.

of course everybody has and should have an opinion, but the facts behind it should be correct and experiences personal not anecdotal. Plaquenil is used differently in different parts of the world but used for much the same reason. It has the best ratio of risk benefit of any of the meds available to us. Even better than Tylenol..... It doesn't mean it it works, but if it does great. If cold you put on a coat. if you are still cold you don't throw away the coat and freeze to death. You either put on a warmer coat or you build a fire. Treating autoimmune is exactly the same. In the US we move quickly to building a fire. Sadly in much of the rest of the world they don't. But nobody should be paralyzed by this disease because their coat wasn't warm enough or they don't have any matches.

So you understand the numbers you are quoting in addition to being 30 years (and significantly changed in that time) old and for doses roughly twice that used for SS treatment (the study also included malaria treatment) is also as you so nicley bolded are also in the presence of kidney insufficiency which is monitored monthly and would be noted long before any visual damage. FWIW that same kidney problem is over 100 times more likley to occur using OTC NSAIDs.

You are certainly entitled to use anything (or not) you want. You are not entitled to discourage someone else based on wrong statistics from a physician speaking well out of his field and a gynecologists mothers possible experience after 30 years. As your article pointed out there are age relsted forms. Of course the disease is named after plaquenil are they going to name it after hersheys bars?


The other thing you are missing us what is going on with the people you are advising. Plaquenil is prescribed to prevent many seious and fatal effects of SS and is documented to significantly increase life expecrencey when lupus or risk of lupus is present. It reduces both the effect and occurence of several types of inflamation and myeleffects including vasculitis. While these effects of SS are not common they are extremly serious an possibly life threatening. The are without exception more serious and likely than a rare eye condition that will be caught by routine screening long before it is a problem (even according to your own sources) In this case you need to fear the disease far more than the medication. As I said otc nsaids carry higher risks of serious events than does this med. BTW the recommendation for plaquenil use comes from Johns Hopkin. Your neuro friend may not have gotten the memo.



Maureen said:

Everyone is entitled to an opinion. One simply chooses what is best for him/her.

Based on the advice of the neurologist at Johns Hopkins Neurologist and my Ob/Gyn, I would not even consider putting this drug in my mouth. I think I'll go with the National Institute of Health's opinion and John's Hopkins' opinion with use from an extensive period of time cause drug effects..

There's only over 13,000 articles on http://www.google.com on this. Don't you think it odd that the disease is named after the drug???

Ocular safety of hydroxychloroquine sulfate (Plaquenil).

www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
Loading...
by HN Bernstein - ‎1992 - ‎Cited by 33 - ‎Related articles
Ocular safety of hydroxychloroquine sulfate (Plaquenil). ... Body Weight; Humans; Hydroxychloroquine/adverse effects*; Retinitis Pigmentosa/chemically induced ...

Ocular safety of hydroxychloroquine sulfate (Plaquenil).

Author information

  • 1Washington National Eye Center, DC.

Abstract

Analysis of all published cases and Food and Drug Administration (FDA) reports of retinopathy attributed to hydroxychloroquine sulfate (Plaquenil) does not reveal any evidence of permanent visual field scotoma occurring when the daily dose is related to body weight and does not exceed 6.5 mg/kg for maintenance therapy. Risk factors of unknown degree may appear at this dosage level only when the duration of treatment exceeds 10 years or when chronic renal insufficiency is present. In the absence of risk factors, annual ophthalmologic examinations and central field testing are recommended because non-drug-related macular diseases commonly occur in the older age group. When risk factors are present, more frequent examinations are indicated. A modified Amsler grid screening test for the central 10 degrees of visual field is described and the participation of the treating physician in the testing program is encouraged to provide maximal medicolegal protection.

Retinal Disorders - Cooper Eye Care

Patients who are taking Plaquenil can develop a condition called Plaquenil ... Patients with retinitis pigmentosa have a defect in the retina which causes reduced ...

Ladies and gents, there is something that troubles me here. Misslynne asked for a doctor recommendation. She did not ask to hear warnings about placquenil or about celiac disease. Please consider whether you are going off-topic in your responses to discussions. And please think twice before posting warnings about medications that many of our members may be taking. It is doubtful that you have the full picture. If you wish to open your own discussions on medications or other conditions, you are welcome to. But I see here that misslynne could easily be confused or needlessly scared off of following her doctor's advice from these posts.

Misslynne, let us know if you see this new doctor. I hope all goes well for you.

Anyway I sort of get lost in the Bay area (got really lost in the barbary coast area for a couple of days once back in early 70's while on leave. was told a I had agreat time)

So not sure how far you are from UCSF in San Fran it looks about 30 mile, but anyway there is a SS specialty clinic there:

http://www.ucsfhealth.org/clinics/sjogrens_syndrome/index.html

In any event one of the clinic coordinators (its a team practice) is a doctor Ava WU. She is likely one of the Top Salivary specialist in the freaking WORLD. her publishing is brilliant. She is pretty likable, but she is tough, pretty straight forward, and demanding. She sets a a great tone but doesn't hold hands near as I can tell. If you can get into the clinic they will take very good care of you. They do the palliative stuff as much as able and closely monitor the future problems. They will be quick to point out SS is as much a process of learning HOW to live with the disease as anything BE SURE and take a notebook.

I went to the Sjogrens clinic at UCSF and they did the testing and diagnosed me with Sjogrens, but had to be referred out to a rheumatologist. I got the meanest rhuematologist who did not believe I was ill and sent me back to Dr. Wu, who was upset and helped me find the nurse practictioner there, but because of budgest cuts, could no longer see patients regularly. I love Dr. Wu she helped me fight to get seen with my medical insurance, but the Sjogren's clinic is in the dental department.

well that stinks, I'll make some phone calls on Monday.......

Thanks T and Dancer..both of those points really needed to be made.