Author Topic: Moving to a new country and being young and frustrated with an autoimmune disease  (Read 369 times)

ghostkiwi

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Hello all,

I recently moved to Japan and because I plan on living here a few years I did not bring any of my medications over here as several of them I wasn't legally allowed to bring and I wanted a regime in which I wouldn't need to get a doctor from America to send a prescription every month. I got a blood test and my sed-rate increased by a lot so I finally saw a rheumatologist today and I am so annoyed.
This is mostly for younger people but it may happen with those not in their early twenties but do other people have to be continuously re-diagnosed/ have to get confirmation of diagnosis with each new doctor they see??!?!? I have been diagnosed with Sjogrens syndrome by 6 separate doctors because each one never believes me when I tell them I have Sjogrens. I hear: you are too young, or thats very unlikely, or I'd be very surprised, or I've never seen it in someone your age, or you don't seem to be unwell who diagnosed you they must have gotten it wrong. Then every time they run up a bill just proving what I told them several hundreds of dollars and tens of vials of blood later.

I'm just very frustrated at the moment because like most people on here I have read the literature and been through the whole run down several times now and I've gotten to the point that when a doctor says something is a certain way I know not to always believe them. This doctor tried to tell me that he was positive I did not have a rheumatic disease based on what for some reason is the basic "do you have joint problems" test of squeezing my hands(which every doctor does and I don't understand why that is a basis of diagnosis as my joint issues can be from basically nonexistent one moment to unable to move a limb for a month the next). He also tried to tell me that apparently here in Japan they do not use plaquenil or methotrexate to treat sjogrens syndrome as it is not a rheumatic disease like lupus or rheumatoid arthritis and that they only use corticosteroids. Which if that statement in itself wasn't enough to tip me off that I was dealing with a questionable doctor, I then proceeded to tell him that my one experience with prednisone made me highly emotional to which he said and I quote "oh, ehh emotional is ok" to which I made myself more clear no, I am incapable of controlling my emotions when I take prednisone and that is not ok. He essentially only gave me prednisone as an option for treatment so I currently don't know what to do medication wise. He is the only rheumatologist in at least a 4 hour radius so I can't just see someone else who is willing to find a treatment plan that works well for me, but I also don't want to burst into tears just because someone didn't say good morning to me. Does anyone have any advice?
22 years old, Sjogren's, Syncope, Anemia, Pinched nerves in Neck, arthritis, Plaquenil, Methotrexate, Evoxac, Triamterene-HCTZ (for potential Meniere's Disease), Vitamin B, Iron Supplements, Restasis, Lotemax, artificial tears, traumeel

GgcJap

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Hi ghost kiwi,

Welcome to the site.

I too am in Japan. So I might be able to help with Japan questions. My problems only started September last year so I'm fairly new to all of this so my disease, autoimmune knowledge is not the best but the people on here are VERY knowledgeable and always willing to help where they can.

Are you diagnosed sjogrens in America. Are you seropositive or negative? what medicines were you taking in usa that your not taking now?

The doctor's are some way behind here in Japan and I too am still looking for the right one.
I have spent thousands of dollars and I know no more today than I did when it first started. 99% of the doctor's over here won't tell you you have sjogrens unless you're positive SSA or SSB.

How bad is your sjogrens? What does it effect for you?
You won't get plaquenil from any doctor for sjogrens. it only became available in late 2015 for the use of SLE and RA. Even if you do have one of the two the doctor's are very careful almost afraid to give it out.

You're more than welcome to pm me if you'd prefer.

Try to stay calm and be patient, easier said than done but getting worked up about it won't help, especially over here.

GgcJap
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

Joe S.

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Welcome ghostkiwi. For me, a male, I get re-diagnosed every time I change a Rheumy. (But males do not get AI diseases) The process takes 5 to 7 years and I am sero negative.

There may be some options available there that you do not have at home. I saw some interesting work with Chi Gung machines and other frequency options. Alternatives may provide herbal remedies that are not available in other places. 
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ghostkiwi

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GgcJap-

I was diagnosed at 19 in America 3 years ago. I was diagnosed on accident actually. I pass out sometimes and in trying to find the cause for that my doctor noticed i had a very high ESR so she ran autoimmune blood work and it came back that i have sjogrens.

ESR: 70 (normal 0-20)
Ana screen Ifa: positive
anti nuclear ab titer:  1:1280
ana pattern: speckled
rheumatoid factor: 115 (normal 0-15)
SSA >8.0 (high)
SSB >8.0 (high)
IGg 2480 (normal 700-1800)
I also have high protein levels and anemia

and if that isn't enough to indicate which it definitely is, I also had a schirmers test that says i do in fact have dry eyes and every doctor to this point has been ok without a lip biopsy until yesterday so we will see how that comes back.

I originally tried plaquenil but it made me violently sick as though I had been poisoned and I told my rheumy at the time after the first dosage that I couldn't get out of bed and couldn't stop vomiting and she told me to just take a smaller dosage but that didn't change the side effects at all and i just was a zombie for a few weeks until I decided that maybe this doctor wasn't trying to do best by me but instead what was easiest for her so I switched rheumys and had been taking methotrexate which helped but as a female of childbearing age it worried me a lot.

My symptoms come and go. At its worst I'm too exhausted to get out of bed and my joints and muscles will get stuck in place (i once was unable to move my elbow for nearly a month and i went to my doctor because it hurt so much and was visibly swollen but all the X-rays and tests said my elbow was perfectly healthy even though it clearly was not so I tend not to judge my condition based off of medical tests alone but rather how I know I feel) and I'll get salivary stones and infected parotid glands and I've needed the Heimlich from being unable to swallow things and there will be times in which i can only eat 4-5 foods without causing my mouth excruciating pain(everything has to be bland now) and my eyes will be so dry I have to just keep them closed. At its best I can't overexert myself and my mouth, throat, lips, eyes, and skin are all dry but manageable and my asthma has gotten worse and I'm prone to bronchitis. I've accepted the fact that I can't do certain things anymore and so I just avoid them instead of dealing with adverse effects.
22 years old, Sjogren's, Syncope, Anemia, Pinched nerves in Neck, arthritis, Plaquenil, Methotrexate, Evoxac, Triamterene-HCTZ (for potential Meniere's Disease), Vitamin B, Iron Supplements, Restasis, Lotemax, artificial tears, traumeel

deniselb

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When my rheumatologist retired, her replacement saw me briefly, seemed completely uninterested, and replaced the Sjogren's diagnosis with fibromyalgia without even telling me. I don't even have any symptoms of fibromyalgia. If I hadn't logged into the patient portal I never would have known.

Never went back to her. Fortunately the next rheumy did not need to be persuaded that I had Sjogren's.

GgcJap

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At least you're diagnosed that's one thing that should help although I'm not sure what medicine they actually give people over here that are seropositive as I am negative myself. I have been given Prednisone before but the effects of that do worry mw so I stopped after 3 weeks. it did help though.
If you don't mind me asking What is your doctor hoping to achieve by taking a lip biopsy? Did you have to have one?

it seems plaquenil is the goto for this doesn't it. I've never heard of methotrexate over here. Don't get me wrong I'm very new to all this and you probably know more than I do.
Sounds like most people on here ups and downs, waxing and waning.

mine has got a little better in the last 9 months but nothing spectacular, I finished with another rheumy today and am now looking for a new one. I'm no expert but they seem very unknowledgeable o er here.

GgcJap
38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

ghostkiwi

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-GgcJap

Its useful being diagnosed only if doctors believe you when you tell them you've been diagnosed. This doctor(and just about everyone I've ever seen which is quite a few at this point) refuses to treat me until he has made the diagnosis himself which just means me paying money to know things i already know. He requires a lip biopsy to prove that I do in fact have inflammation in my salivary glands(which had i known was necessary I would have seen him when i had a salivary stone and infected parotid gland a month ago!) because dry mouth is a common symptom of most drugs and diseases so he needs to make sure that it is being caused my sjogrens as opposed to something else.

Plaquenil is an antimalarial and is the go to because in many people it helps with many of their primary issues and it is generally well tolerated while also being on the milder side as far as drugs go(aside from the "rare" incidence of going blind(i put rare in quotes because you have to see an ophthalmologist every few months because the drug will slowly build up in your eyes over the years which again as a young person is problematic and seems like there needs to be more long term studies)). In some people, like myself, it can make one very very sick though. Because I had such a bad reaction to plaquenil my doctor decided it was best to stay away from that group of drugs and the next line of defense(at least in my case) was methotrexate which is a chemotherapy drug. I had basically no problems with methotrexate but it increases your risk of several serious disorders and it made me worry about my reproductive health. ....Unfortunately there is no drug that doesn't seem to come with some serious adverse effects. So its a rock and a hard place.

There are good days and bad days, and even some good months and horrendous months. Finding a good rheumatologist for me at least in America was like finding a needle in a hay stack.
22 years old, Sjogren's, Syncope, Anemia, Pinched nerves in Neck, arthritis, Plaquenil, Methotrexate, Evoxac, Triamterene-HCTZ (for potential Meniere's Disease), Vitamin B, Iron Supplements, Restasis, Lotemax, artificial tears, traumeel

SunshineDaydream

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Welcome to the forum, ghostkiwi. Sorry to hear you are having a hard time with new doctor in new location.

I have been diagnosed with Sjogrens syndrome by 6 separate doctors because each one never believes me when I tell them I have Sjogrens.

Its useful being diagnosed only if doctors believe you when you tell them you've been diagnosed.

Are you bringing the current doctor records from prior doctors or just walking in and telling the current doctor you have previously been diagnosed? I have had three rheumatologists in three states due to two interstate moves. Prior to moving, I got copies of my medical records (lab results and doctor's notes) to bring to new rheumatologist and have not had to be re-diagnosed or "prove" prior diagnoses. In my experience, albeit not international, it helps to bring prior records as rheumatic ailments can be hard to diagnose due to fleeting and often unrelated symptoms, and doctors may want to consider other possibilities first. That being said, perhaps the doctor you saw always requires lip biopsy for Sjogren's diagnoses?

An example of doctor not believing diagnoses when I told him vs. when he reviewed records is one time prior to moving I was diagnosed with rare eye condition that required follow-up monitoring. I dropped prior records off a week before appointment with new doctor. When I went back for appointment, he asked why I was there and I told him follow-up for prior diagnoses of X. He expressed doubt, said that was very rare condition, the likelihood of me having it was blah blah blah and why did I think I had it. As a geezer ophthalmologist with Johns Hopkins education, he had never seen the circumstances. I told him perhaps he needed time to find and read the prior doctor's records I had dropped off. After having me return to the waiting room for a while, he called me back after reviewing records, agreed with diagnosis and apologized for the mix up.

I suggest you search to see if there are local support groups for Sjogren's and even lupus (as it can be very similar and people with one autoimmune disorder often get at least one more) from which you can get recommendations for doctors who are familiar with Sjogren's and thus more inclined to make diagnosis and provide treatment. Also, there is a closed Facebook group called "Under 40 with Sjogren's". I don't know how active it is but it may be a good resource not just for relatable as to age but possible international membership.

Good luck and let us know how things are going.
Sjogren's, lupus and osteopenia
Rx: Evoxac and Restasis 
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

SunshineDaydream

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Maybe this is a good resource:

Japanese Sjögren’s Association for Patients (JSAP)
Division of Hematology and Rheumatology Department of Internal Medicine
Nihon University School of Medicine
30-1 Oyaguchikamimachi
Itabashiku Tokyo 173-8610, Japan
Phone: +81 (0)3 3972 8111 Ext 2402 (Dr Masami Takei)
Fax: +81 (0)3 3972 2893
Website: www.maeda-shoten.com/sjogren 


from https://www.sjogrens.org/home/get-connected/isn
Sjogren's, lupus and osteopenia
Rx: Evoxac and Restasis 
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

GgcJap

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ghostkiwi,

what medicine are you hoping to get from the doctors over here? will they not give you evoxac without a diagnosis? Even though you have a dry mouth? Seems like a big step to have a biopsy if you're already diagnosed and like you said a waste of money. Couldn't you get something from your Dr in the US? Do they not accept that over here? I know dry mouth can be caused by many things but aren't you seropositive? isn't that enough.
Quote
Unfortunately there is no drug that doesn't seem to come with some serious adverse effects. So its a rock and a hard place.
I agree with you totally. It is a rock and a hard place but I hope you find someone that can help you without taking too much of your money and time.

GgcJap


38yo Australian M (living in Japan)
Blood work negative, biopsy negative,
Dry eyes, mouth, nose, random muscle pains at random times
Evoxac, Plaquenil

ghostkiwi

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5 of my past diagnoses were all given the proper paperwork several of which were from the same medical group(i.e. rheumatologist, cardiologist, ophthalmologist,etc). Several just thought it must have been a lab error or that I had just made it up I guess cause I look perfectly healthy on the outside, but like for what purpose would someone pay to meet someone for help just to falsely claim to have a serious medical condition??

I get my results on monday from this most resent testing. The doctor doesn't believe that I'm seropositive until he sees it on a test that he has ordered himself. It does seem that he always requires a lip biopsy for diagnosis which I've never had prior to now so retesting was inevitable apparently.

I can't take evoxac because it makes me sick and didn't really help at all. I was just hoping to get a med to deal with the inflammation because its very high and steadily rising and my body keeps freaking out at nothing. I've had sporadic anaphylaxis 3 times in the past 2 weeks (once hiking(thought maybe I touched a shrub or my detergent or something), once in the shower(thought well maybe its something I'm cleaning myself with), and once just laying on the couch doing nothing(I hadn't eaten anything or touched anything aside from my couch and I was like well unless I'm allergic to water and air its gotta just be my immune system being dumb) and my asthma is becoming a constant problem even with my inhalers and I had a chest x-ray that said my lungs look fine so I don't know.

I don't have contact with my old rheumy in the US and being a good doctor she never gave me more than a 3 months prescription at a time which doesn't really do me any good if I keep having to go through the hassle of contacting her and it taking basically a month to get anything shipped to me. Nor do I think she would take my Japanese health insurance.
22 years old, Sjogren's, Syncope, Anemia, Pinched nerves in Neck, arthritis, Plaquenil, Methotrexate, Evoxac, Triamterene-HCTZ (for potential Meniere's Disease), Vitamin B, Iron Supplements, Restasis, Lotemax, artificial tears, traumeel

Nymph

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GhostKiwi,

I am so sorry that you are going through this. There is no substitute for a doctor who will search until they have an effective treatment.

That said, there are complementary medicine tactics that can help, and may give you some relief while you are waiting on doctors. Of recent discussion on here, and things that I have found helpful, are turmeric, ubiquinol, n-acetyl cysteine. You can look them up in the search bar.

I personally have also found DHEA to be helpful.  There are a wealth of helpful things... They do not take the place of traditional meds IMO but can provide some relief. Since I have been taking the turmeric I have not had one flare significantly affecting my joints, which is pretty amazing for me. Good luck as you try to find your way. It is always a challenge living in another country and much more so with a chronic illness. I lived in Israel for 8 months but luckily my rheumy just gave me enough Plaquenil to cover me. I dread the thought of starting over with someone new, even here in the US.
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot

cccourt1942

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You don't say why you are overseas.  Are you in school, work, service?  Our other expat in Japan has already written to you.  I lived overseas decades ago.  We took letters from our doctors, stuck them into the WHO certificates, and that's how we took a year's worth of meds in.  We did this for 5 years.  I don't know if they still do that.  I would check. 

The one thing you have that we didn't is the internet.  I would email (even if you have to call to alert those drs who have tested you) and ask for your records to be sent electronically.  That is ridiculous they don't accept.  But that's universal: doctors who don't believe women.  Yes.  I agree you don't fit the profile.  But there are lots of men who suffer erectile dysfunction who aren't old too!!

As to evoxac, there are 4 meds.  Two are the same as evoxac and two are like pilocarpine: one brand name, one generic. They are pilocarpine and salagen, then cevemiline (sp?) and evoxac.  The drugs are tricky.  I started on pilocarpine and I thought I was going to die.  After 3 or 4 days, I looked it up for side effects.  I was taking too much.  I started taking it in tiny doses...and it took me a year to work up to original dose.  The reaction I had was stomach.  My mouth felt wonderful for several days, but I couldn't stay away from the bathroom!  The tiny doses didn't make my mouth feel as well, but I was determined.  It was worth it.  Most people say they prefer evoxac to pilocarpine.  I have stuck with the pilo..and take 25 mg per day..which is a lot.

Is there anyway you can get back to the west coast, with your medical records, to obtain meds?  I don't see how you function. 

I agree with you wholeheartedly about the squeezing of the fingers, etc.  So silly. The magical 8 points for fibromyalgia dx reminds me of the same silliness.  Every doctor has their own level of pressure to determine if those points are sensitive enough for a dx or not. Definitely not 21st century medicine.

Hang tough.  Explore options...even visits to other countries.  (which is a silly suggestion since you won't even be LIVING in the other country!  I am grasping at straws here.)  I know you have Amazon there:  you can order Biotene oral gel, and Xylimelts.  These can make your oral cavity more comfortable...but not help like Rx. 

Keep us informed.  If you have friends, relatives coming to visit you during your time there, perhaps they can bring meds in for you via letter verifying for you.  I don't know...again grasping at straws. 

Best to you,
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

ghostkiwi

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I am living and working over here and plan to do so for several years(which is part of the reason why I'd prefer to figure out how to get things to work here). I used to live as far east coast as you can get in America which is essentially as far away from where I currently live as I could get and it takes 3-4 days to get from where I am now back to my home in America so just stopping home isn't an option. I tried evoxac and salagen and they both worked equally as poorly for me. They would make me salivate but only all at once when I first fell asleep and then was bone dry the rest of the night and day.

I got my results from the rheumatologist I saw here. Guess what? Its still sjogrens! My lip biopsy came back positive for chronic sialoadenitis consistent with sjogrens as did all the blood work. The rheumatologist was like so yeah you do in fact have sjogrens and I was like I KNOW! I TOLD YOU THAT ALREADY! He was like yup...and I was like...so are you gonna prescribe me something. He was like what for? and I just gave him a look of complete astonishment and was like we just established that I do in fact have an autoimmune disease and that my inflammation levels are high and destroying my body and I was like look at this number it is nearly quadruple what a person should have can't you give me something to lower it. He was like no that number doesn't change no med will make that go down(which is a expletive LIE! and a complete contradiction to what he said the last time I saw him in which he said he could lower that and cure it right up(also a lie)). I was like so you aren't going to prescribe me anything? He was like mmmm if you have more symptoms(WHICH WE JUST ESTABLISHED THAT I HAVE BASICALLY ALL OF!!!) then I can maybe put you on a corticosteroid. I looked at him outraged and was like is that all and he was like yeah, and I just walked out of his office and he called me back because he forgot to mention oh hey we did an allergy test and you are essentially allergic to your apartment and all old buildings and I was like ok well thats good to know and he was like you should be on a medication to help with your asthma and allergy symptoms because if you have anaphylaxis again it could be very life threatening. So I was like ok are you going to prescribe me something? and AGAIN THIS MAN TELLS ME NO! HE'S NOT GOING TO HELP ME AND JUST CHOOSE TO BE COMPLETELY USELESS!

So frustrated it is UNREAL!!!!!
22 years old, Sjogren's, Syncope, Anemia, Pinched nerves in Neck, arthritis, Plaquenil, Methotrexate, Evoxac, Triamterene-HCTZ (for potential Meniere's Disease), Vitamin B, Iron Supplements, Restasis, Lotemax, artificial tears, traumeel

cccourt1942

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One quick question:  a rheumatologist tested you for allergies??  ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene