Introduction

[justsaynoemore]

Hi, my name is Cathy and I am an undifferentiated mixed connective tissue disease victim, and my health has become unmanageable. I have four different rheumatology opinions ranging from 1) crazy and making up my symptoms to cage for narcotics and so as your rheumatolgist refuse to even test you and send you to a psychiatrist instead; 2) MCTD for RA, lupus, scleroderma and polymysitis; 3) MCTD for lupus with RA, scleroderma and polymysitis overlap; and 4) UMCTD for lupus, with RA overlap and no scleroderma or polymysitis at all. My husband and I refer to it as differentiated doctor's disease, depending on their mood for the day.

I have been on MTX, folic acid and klonipin for one year since diagnosis on 6/26/06, Plaquenil prescribed in April under duress by my rheumatologist who was forced into it after quinine sulphate is no longer sold by US pharmacies; and my new primary (after discovering I was on no pain medication whatsover) started me on Flexeril and Ultram a few weeks ago, of which I am only using at night to sleep. I have also been on Synthroid for 16 years for Hashimotos, but as we all know, endocronologists only treat "localized" autoimmune diseases, and rheumatologists treat "systemic" autoimmune diseases, but the two professions will never meet.

I look forward to reading everyone's posts. :bow:

[Pamela202]

Hi Cathy,
I am new to this site too and it sounds as if you are a bit disenchanted with medical diagnosis and people thinking your not quite right in the head. I am dumbfounded by the lack of info doctors have to my questions, and what really ticks me off is just because I "look" good when I go to the doctor they assume I must also "feel" good--when in reality I am hurting like heck or feeling like the last rose of summer. You are not alone. I too have Hashimotos and was diagnosed with small connective tissue disorder, Raynauds, IBS, GERD, Fibromyalgia, and currently am being tested for schleraderma. I have a number of other symptoms too, but when you tell people they just look at me like how can they be? I am very frustrated.

[justsaynoemore]

Pamela - it took six years to even get an MD to take me seriously. I look great from the outside too. But, positive severe pancreatitis attack blood work, confirmed sinus tach heart problems, skyrocketing thyroid blood tests bouncing back and forth from hypo to hyper, out of control cholesteral (it was my inflammed, diseased gall bladder, not stones), the classic RA nodules on my forearms, obvious inflammation, lesions in my nose, mouth ulcers, fungal infections, bleeding upper palate blisters, and that just wasn't quite enough - it was all caused by "depression". Why even blood test me if you won't pay attention to the abnormal results? But I have a great small group of MDs I have found throughout these past 7 years, but they still haven't agreed on a diagnosis. And I suspect they never will. Good luck to you too, and I totally understand your frustration. Cathy

[raggedyann1]

Hello Cathy,

Welcome to The Lupus Site!! You have come to the right place. I would guess at least 50% of our members had a very long road to diagnosis. Even though you don't have an official diagnosis are you being treated as if you are a "lupus" patient?

I know in the early 1990's when I was forced by insurance to change my rheumatologist I saw some doctors who refused to believe my diagnosis. Fortunately they were not willing to change my treatment regimen. After a long remission when my lupus/scleroderma became active again I was able on my 2nd try to get a lupus specialist to treat me.

Take care,
Karen

[justsaynoemore]

Karen - I see my rheumy next week for a three month check after being started on Plaquenil (which I thought was slightly irresponsible to go so long after being put on a new drug), and he fought me all the way. I do my labs this Friday and will know more in a few weeks. My research is showing that when you go UMCTD for one year (and I am right at one year) and you dont fall into one certain disease completely, i.e., lupus (my guess), RA (his guess), etc., then you are very lucky and you can hopefully stay just in the miserable every day stage of autoimmune and not the stage that I know our sisters and brothers in autoimmune/arthritis full blown conditions find themselves in- i.e., transplants, wheelchairs, disabled, etc. Thanks for the welcome. I was starting to feel a little left out. LOL Take care ~~ Cathy

[Clare.T]

Welcome to the forum Cathy

What a run around you are having ! :(

You last post confirms that you are still seeing the rheumy that you had to persuade to put you on the Plaquenil . That is very odd considering that Plaquenil is the first drug of choice for treating lupus, UCTD MCTD and people stay on it even when they need much stronger meds in addition. It is used in treating RA too but I don't know what place it has in RA treatment

I am extremely puzzled by the following


April under duress by my rheumatologist who was forced into it after quinine sulphate is no longer sold by US pharmacies;



I have never heard of quinine sulfate being used to treat lupus. It is still available although the FDA stopped unauthorised manufacture. It's used as anti malarial and off label for leg cramps but has so many potentially dangerous side effects one of which is causing a lupus like syndrome that the FDA wanted very tight control over it.
http://www.fda.gov/cder/drug/unapproved_drugs/quinineQA.pdf


I wonder if there is some confusion with an anti malarial called Quinacrine ( UK Mepacrine ) fka Atabrine. Plaquenil replaced this drug on the market for anti malarial use so Quinacrine was withdrawn. It is available from compounding pharmacies in the USA who will purify and make up into pills and from Boots pharmacy or hospital pharmacies in the UK

Quinacrine's full name appears to be Quinacrine dihydrochloride. It is a very useful alternative to Plaquenil and can be a very potent combination along with Plaquenil or Aralen

After it was withdrawn it sort of got forgotten about. I might not be surprised if a rheumy didn't know it was still available, but all the top lupus docs know about it and use it as necessary. The combination can mean that people need less steroids or immuo suppressants

If I am right about possible confusion of Quinacrine with quinine sulfate, I would regard that as staggeringly ill informed.

UCTD and MCTD are distinct labels. UCTD is defined as connective tissue disease without any specific signs of a particular CTD. In the case of lupus, no anti ds DNA. Doctors have their diagnosing habits.Otherwise it is as close to SLE as matters in practice and I am sure that many people with this set of symptoms get diagnosed with lupus.

MCTD is a distinct diagnosis. It has some clinical features of lupus, polymyositis and scleroderma with some special symptoms like swollen hands and sausage fingers, and by "definition as well as being ANA positive, MCTD patients must have high levels of anti RNP antibodies."
( Dr Wallace p169)

He also says that a survey of SLE patients shows that 5% also met the definition for MCTD

So you see, 'undifferentiated mixed connective tissue disease " is not a possibility.

For further info check out the two diseases on emedicine.com

Dr Wallace says ' it is important to remember that these classifcations are used by doctors and insurance companies for categorization purposes, estimation of disease prevalences and as a criteria for enrollment in resarch studies.

"Your doctor needs to treat you as a unique individual with a specific set of symptoms,signs and laboratory findings whose management is tailored to best improve the way you feel and decrease potential risks "

(p167)

I think 3 months between appointments is quite common. It's most unlikely that the Plaquenil has had any bad hidden effects like affecting bloods in such a short time.

It's a good idea to get eyes examined and have them examined every six months, just in case they are being affected although the risk is very very small. If the rheumy didn't mention this, it wouldn't inspire confidence in me.

Generally speaking if the symptoms stay much the same for a few years it's unlikely develop further but these diseases are unpredictable and sneaky. Make sure urine gets tested

All the best

Clare

[justsaynoemore]

Clare - thanks for your informative reply. I was originally put on quinine sulphate by my former primary, who is my current rheumy's partner, for severe leg cramps, not lupus. I am assuming that he thought that was sufficient for lupus after consulting with her as they work together. I then went for a second opinion at USF Tampa, and that rheumatologist suggested I be switched to Plaquenil, which my current rheumy refused. Then when quinine sulphate was pulled by pharmacies three months ago, he reluctantly started me on Plaquenil. I have since gone for a fourth opinion, who thinks I have UMCTD towards lupus - so its 2:1 against my current rheumy, who changed his mind on my diagnosis after seeing the USF Tampa guy from RA to "rhupus".

And the fourth rheumy says that he does not agree with my current rheumy of having scleroderma or polymysitis, because of the weakness of the titers on scleroderma.

I took myself to my opthamologist for a field vision test before starting the Plaquenil after reading up on it, which my current rheumy did not suggest when he started me on this drug, as he just said to come back in three months and call if I had any side effects. I did fine on the right eye, but suddenly went black blind in my left eye as they were fitting the scope to begin the test. I was also dizzy and staggering down the hall after the test was finished, which is part of my intermittent symptomology. My opthamologist thinks its a circulation problem because the blindness came and went. My new fantastic primary called for a brain MRI, which came back negative. The concensus is that I am having TIAs (lupus), as I have slurred speech, dizziness, and staggering, which also comes and goes.

I already have my six-month followup with my opthamologist scheduled.

And about the urine, that's what bothers me the most, at these three-month checks, he doesn't check the urine, so I go to the primary to have it done. But I have found through my research that you can be given a kit to test yourself, which I am looking into.

You do have to be your own physician in America. I like Dr. Wallace's quote - he is dead on.

[raggedyann1]

Cathy,

It sounds like you continue to be frustrated with rheumatologists that are not giving you the same diagnosis. I was interested that one of the doctors said your scleroderma titers were too low. Only 50% of Scleroderma patients ever have positive SCL-70 or centromere staining pattern on the ana test. There is some good news for scleroderma patients without positive blood work in that they are less likely to get the more severe complications.

I would suggest that you pick the rheumatologist you were most comfortable with and stick with that doctor. It sounds like you have HMO style insurance but I would hope that a case could be made that you are a complex patient and need to be under the care of Dr. xyz .

Take care,
Karen

[justsaynoemore]

I think my wild card is that I am an in-utero DES baby, which was billed to make bigger, stronger babies, even though my Mother was given it for miscarriage. I also strongly suspect it is what finally killed her with pancreatic cancer, as she never recovered from taking the DES. Warnings were posted about two years ago that as this first generation of humans whose DNA was changed by drugs for the first time in man's history reach menopause (or womenopause for men I guess), we develop autoimmune diseases. I don't think I will ever get a true answer as every day is a new chocolate in my box of autoimmune symptoms. My husband and I refer to it as differential doctor's diagnosis.

[Clare.T]

Hello again

I suggest you get hold of copies of blood tests to make quite sure all the correct tests have been done. In particular look for tests called anticardiolipins and the lupus anti coagulant which is clotting tests.
These tests are for a blood clotting condition that can cause clots and a wide variety of other problems. They would usually be done as part of a thorough lupus work up. It could explain some of your other symptoms like the TIA's

By seeing what tests were done you can get a better idea of the correctness of the diagnosis and the degree of knowledge of the doctor, for example what was the RNP, although that is arguably not the most important thing.

We do like to have name for our particular disease but the main thing is getting appropriate treatment. People don't always fit neatly into a box : there are cross overs and overlaps and atypical cases. It can take even an expert a long time to figure everything out.

If I had any options at all I would not stay with your current rheumy, the one who didn't want to put you on Plaquenil, thinks quinine sulfate is for treating lupus, doesn't do urine tests and didn't mention the need for checking eyes when on Plaquenil. It's all very peculiar on the face of it.

Urine dip stick tests are available and used by quite a few people.

I hope you start feeling much better very soon.

All the best
Clare