Hi all,
I have now found a Sjogrens specialist(after much time and effort) and have been for my first appointment. Unlike my first Rheumy he seemed to be well informed and willing to answer questions at the same time asking a lot of questions. He gathered all my details/test results from the previous 3 hospitals Ive been to, the day before my appointment. He also mentioned that the blood tests and lip tests were not enough to diagnose Sjogrens at this point of time and is 50/50 between Sjogrens and an igG4 disease(not too sure what this is, have read up but didn't understand a lot of it, if anyone has a simple explanation please let me know), although he said there is a still a chance it could be something else.
I have a whole lot more tests (one of them being where Im injected with dye to see how it comes out my glands?) to be done on the 14th and then maybe I`ll have more of an idea of what im dealing with. He also referred me to an eye doctor who can do the tests for plaquenil although hes not too keen on it and doesn't want me to start it at this point of time or at all if possible.
In the mean time he has cut my Prednisone down to 5mg(he didn't understand why the other Dr put me on only 10mg. He said it should have been around 40mg with taper if anything at all) with the intention of getting me off it if need be(once the test results are in). He also advised I stop all supplements and other medicine apart from Salagen until we have the results.
I did briefly speak to him about leaky gut and diet. He said diet wont cure me and I should eat what makes me happy also he was aware of leaky gut but im not too sure he was a believer.
All in all still a better doctor than my last (although im guessing not perfect). I`ll update again after the 14th.
GgcJap
Hello, Welcome though sorry to hear of your situation.
I have tried lots of diet related changes and did find that gluten is an issue as is milk in particular (I can eat butter, mayo, etc.) My first rheumatologist also told me that diet would not impact my disease because it's a disease of the connective tissue (literally where your skin meets your bones) and systemic.
Hope your tests prove conclusive in some regard and lead to appropriate and helpful treatment.
Hi SjoGirl,
I am on the AIP diet at the moment and have been for about the last 3.5weeks. Im excited that finally I will start adding food back in soon with hopefully no adverse reactions. From what Ive read I tend to believe that diet effects most people in one way or the other. Like I said a better Dr but not perfect. :)
Im also hoping my tests are conclusive one way or the other so at least I know what Im dealing with. This Dr seems pretty determined to help me get to the bottom of this and I like him for that.
Thanks for the kind words
GgcJap
The diet question is a complicated one. There are many people here who feel better on a specific diet, but what that diet is varies. My attitude is that it doesn't hurt to try a diet change, as if it works, that's great. And if it doesn't, you haven't done anything risky.
My rheumy suggested going gluten free to see if helped. I did two 6 months stints of gluten free, and was quite scrupulous about it. Really didn't see much change. And yet I know it's been helpful for others here.
It's good your rheumy is chasing down the problem. Even if he's not "into" dietary experimentation, luckily that is something you can manage yourself if you want to.
I had a hubby with Celiac sprue, son and grandson also. I have cooked a lot of gluten free meals since 1978. Just to let you know that a lot of people are flocking to the gluten free diet thinking it is the end to their problems.
Sometimes a person has Celiac sprue which is an autoimmune disease that results in malabsorption when wheat, rye, barley and sometimes oats are eaten. Then there are others who have a gluten sensitivity which is different from celiac disease. Celiac disease can be life threatening if the diet is not followed.
Actually, the gluten free diet is not the healthiest diet as it can put on weight because the recipes have a lot of fat in them. This helps to increase the flavor. My hubby always had to eat a lot of potatoes and pasta to get enough calories. There is a fine line between enough to maintain bodily functions and exercise and the amount to eat to avoid gaining weight.
I also wanted to add that many people with celiac disease or celiac sprue are prone to lactose intolerance. This is very tricky and needs the help of a doctor. Celiacs generally do not absorb the vitamins and minerals. Calcium is very important and celiacs have problems keeping this level up and avoiding osteoporosis. I have been doing more research lately because of my grandson and his calcium intake and things have changed over the years. It confuses me and I can see where dieticians with a celiac specialty would be in order.
I just wanted to add this info for any of you who are new to the gluten lifestyle. Good luck. Irish
Hi warmwaters,
The diet question is a very difficult one where I guess it does really relate back to the individual person and that persons problems and how that diet effects them whether they be known or not. I've come 3 and a half weeks in and am about to start adding food back in. Because I started a diet, a lot of supplements and medicine at the same time I'm not sure whether the diet has had any effect at all. I guess I will know once I e started adding back in(I hope I can add everything back in :) )
Yes medically and interest wise my Dr is good I would like to think. He's far from being a functional Dr but I have about 0 chance of finding one in Japan. He listens, has good medical knowledge and is open to suggestions so I think we may be able to work together on this which was my main goal.
Hi Irish,
I'm pretty sure I'm not allergic to gluten but I plan on getting food allergy tests in the near future.TBH if possible I would like to be able to eat everything again. :) I am basically eating meat and veges only and am worried about my fat intake. Finding coconut products and soy, gluten, dairy free products over here is almost impossible. Maybe more stress than it's worth but I've grown into it and it'll be over soon, all going well.
GgcJap
Incredible how rheumys differ in their opinions and treatments.
I was also originally put on 10mg Prednisone which did nothing for me.
My current rheumy wants me to begin another trial this time at 20mg for a month,
though the idea of 40mg taper your doctor suggested might be a better idea.
I've also heard igG4 suggested by my salivary gland specialist, but the blood tests for it didn't show anything unusal in my case.
The injected dye test is a sialography- I had it done 3 times and the results were unusual but not specific enough to diagnosis SJS.
Hope you have much better luck with this doctor.
He at least seems to be taking your situation seriously.
Hi Sharon,
It really is surprising how bigger difference there is and how much difference that makes to me mentally. I think for me the 10mg did have a slight effect but nothing over the top. 20mg will probably be good for you. 40mg sounds a bit high for me but apparently igG4 reacts well to prednisone.
What does a sialography actually consist of. The doctor said they'll inject a dye in my arm and wait for it to come out my glands, is this correct?
I hope I have much better luck with this Dr too, it's a big piece of mind having a capable Dr.
GgcJap
Perhaps your Dr. was not talking of a sialography then,
because I was injected with dye into my salivary glands and they then took X-rays
of how it filled my glands.
I don't see how it would come out of your salivary glands if you were injected in your arm.
If they suspect Igg4 they have blood tests that may confirm that diagnosis.
Hi Sharon,
I couldve been mistaken but Im pretty sure he said into my arm(I really have to start taking a memo pad into these appts as I forget more than I remember), maybe they will inject it into my glands? Maybe, if Ive searched correctly it could be a scintigraphy. I think he also said something about an MRI but that could be two different things? Either way I guess I`ll find out tomorrow. Like I said many more tests to go and hopefully none of them painful and all of them tell me something useful.
They did take a LOT of blood before I left my last appt, so Im guessing IgG4 will be included in them. Although Im not too sure about the blood tests as I've read, and been told that males rarely show anything? Im guessing thats not ALL males though and maybe I`ll be lucky/unlucky and have something show up.
I`ll post again when Ive got some more details.
GgcJap
Are you speaking of the IgG levels. There are the 4 subsets that they check usually which are 1-4 theyyou will are related to the immune system and can affect mucus membrane and sinuses, etc.
If you go to primaryimmune.org you will find info on these conditions and some of this info will help you do more searches. Irish
Thx Irish,
I`ll have a look in the very near future.
Thx again,
GgcJap
I have immunodeficiency, for Igg1 and igg4. it was diagnosed by a blood test.
Hi all,
So I spent all day at the hospital and underwent blood tests for allergies(results on the 22nd), a salivary gland scintigraphy(results on the 22nd), eye tests, I'm ok for plaquenil, but do have scratches from dry eyes on the bottom of my eyes(apparently they start from there).
I did get my blood test results(the first ones) back and was negative for SSA and SSB. My leukocyte(white blood cell) count was 100(I think that's x10 what ch would make it 10000 and a little on the high side? The only thing the Dr did mention to me is my igG4 is high at 154(can someone tell me how high this is?)
Due to this he is now leaning more towards an igG4 related disease than Sj?gren's. I still don't know what to make of it all. He told me not to take plaquenil or any other supplements and come back in a week. In fact he said if I take plaquenil he won't be my doctor anymore. I really don't know what to make of all this. Plaquenil is not used here for Sj?gren's and I don't know if it's used for igG4 related diseases? Not sure whether I should already be looking for another Dr or not?
GgcJap
What units are the IGG4 results in?
If this doctor sent you to all these tests I would give him a serious chance to attempt to treat you.
I had to beg doctors for some of those tests and only now after 2 years of suffering have they approved an MRI for me.
Wait and see what the doctor suggests. Try to get a definitive diagnosis as possible before beginning any treatment.
Take into account that you have been on steroids and that might tamper with your blood test results.
One week of Prednisone changed my positive ANA to borderline.
Hi Sharon,
My igG4 has a range of 4.8~105 and mine is 153. It's measured in mg/dl. My white blood count is range 37~94H and mine is 100. It's measured x10 2/ don't know what that means?
I'm going back on the 22nd to see what he has to say. I don't doubt he's a very good Dr medically, but he really seems to want this to be igG4 and one of the reasons he said it's not Sj?gren's is because I'm male, He also said that if a woman has Sj?gren's it shows 100% in her bloods(I don't believe that) and males don't always show in their bloods but it's uncommon. It makes me think he's lying so he can treat me for igG4. This is good if it is but if he's wrong, one, I don't need that much steroids and two he's wasting time.
I will try and get a definitive diagnosis but the scary thing is I'm thinking it can only be the one he wants. We did take into account I was on steroids and he said if I wasn't it probably would've been around 300 or so.(again don't know if that's true) He didn't say anything about my white blood count, although it's at the top end and I still don't know why.
GgcJap
Just to let you know that autoimmune disease can affect the white and red blood cell production and that is why an immunologist would be great for second opinon. Also, if you cant find an immunologist you might get lucky and find a hematologist who could do some blood work and get some general idea about your blood work issues and he might be able to refer you to another doctor.
The reason we have to keep changing our doctor is cause it puts us in touch with another one, and another one, etc. The more doctors we see the bigger the chance of getting diagnosed. A sad truth. I did this dance for 10 years before I got to an immunologist who diagnosed me with most of my autoimmune and immune stuff. My hubby went with my much of the time and it was expensive and took up our life. Being ill can be overwhelming much of the time. It helps to keep as accepting as possible of the lot in life one has been dealt. Getting upset just takes energy and we can't afford to waste energy.
There are times when we get so tired of doctors and overwhelmed that it helps to take some time off from going to the doctor and keeping life simple and just resting up. Denial is also a wonderful thing to use at times cause it helps to keep the pressure off. The big thing is one can't do denial all the time. We have to learn to live simply and enjoy the little things in life.Good luck. Irish
Thx Irish,
Sjodry actually found me a site for the Japanese society of immunity. I will be mailing them on my next day off. My red cells were fine(this time) but white a little high.
One thing I did forget to mention was my igA was also low. It's only my first real blood test so nothing to compare it with but I did read about an immune deficiency selective deficiency of IgA, which funnily enough has a lot to do with secretions of the mucosal surfaces, including tears, saliva, colostrum, genital, respiratory and gastrointestinal secretions. A lot of my problems actually.
I will keep searching, whether it be for good Drs, diagnoses or peace of mind. I will. It stop until I find them. I will remember to rest when I need it though.
I'm tired of Drs and hospitals already. Unfortunately I can't do denial although it seems needed for a complete rest. Very well said, I definitely have to learn to live simply and enjoy the little things.
Thx again Irish
GgcJap
I agree your doc is saying some strange things and it sounds like he has an agenda.
That said, according to all the reference levels I checked looks like your IGG4 is indeed quite high,
so you may want to look into that diagnosis more seriously.
I also think an immunologist might provide a good second opinion.
Hi Sharon,
Yes strange things indeed, Im not too sure what his agenda is(which concerns me) but after doing some research on various things its very likely that this could be igG4 related. Ive also had my left submandibular gland taken out because it had a 2cm stone in it 2.5years ago. My Dr is now trying to get a sample of that(from the other hospital I just sacked) to see if it was igG4 related, but it seems they dont want to hand it over. Something I failed to mention before my igA was also a little low. Im not saying my Dr doesn't know what hes talking about because a lot of what he says makes a lot of sense, and then some of what he says makes no sense at all? Very confusing but I`ll give him a chance and make a decision in the near future as to whether I need a new Dr or not.
It sounded high to me too and that was whilst I was on Prednisone 10mg, he said It wasn't very high though and even off prednisone it probably would only be double(how he knows that I dont know) and that hes seen much higher(in the thousands). But, Im now off all medicines and supplements(apart from salagen) and will ask for another blood test when I go back on the 22nd.
I will definitely be looking into the immunologist thing as well as maybe a new Dr, I've recently been told to go to a big hospital as they have the best staff and equipment, although they're quite far from where I live. I will def be doing this if I do change because I want it to be my last as this is starting to get expensive and thats with insurance.
GgcJap
Yes, this entire process of diagnosis and *correct* treatment can get exhausting and very expensive!
It's good though that you're doing all this right now when your symptoms are just becoming obvious
as for many the process drags out over years of agony until we have no strength to continue to deal with it and the disease progresses.
I really admire your determination! I too have been very determined but got caught up in bureucracy and ran up againt strict treatment restrictions that exist in my country.
Keep in mind that you can also have IgG4 disease without it showing up high in blood tests at all.
Sounds like you doc simply understands more about it than he does about SJS.
Keep us updated as to your progress on all this!
Hi Sharon,
Your right there, it is very exhausting and expensive but worth it if I can get a correct diagnosis and the right treatment. My symptoms have just become obvious but I think I've had it for a while(as in a year or so) and just haven't noticed or put the pieces together. It was only when the mouth went it became noticeable enough for me t9 take action.
I've read many diagnoses take years. What country are you in? No bureaucracy is never a good thing to be caught up on n is it.
It seems a lot of autoimmune don't show up on bloods doesn't it and yeah I think my doctor is going with what he knows which, if that brings me the correct diagnosis and treatment I'll be happy if not he's wasted my time, time I don't have. I really pray he knows what he's doing. Either way the tests and results will be benificial wherever I go.
I go back on the 22nd and I'll post shortly after.
Thx Sharon
GgcJap