Previous member returns - really long post, sorry!

[Jaygeee]

I have been lurking for a month or two and see a lot of new members and some memorable names 

Previously my screen name was jaygee, but I haven't logged on in ages so have had to rejoin. I now have an extra "e" .  I will give a little background of symptoms from the past and where I am now. 

I disappeared from here in 2012.  This was because my doctor told me they had tested for everything and it was all in my head. I had gone to ask about numb patches and nerve pain.  I was shocked and embarrassed at what she said - basically an hypochondriac.  So, I stopped taking plaquenil and meloxicam - thinking if this is all "in my head" then I don't need any unnecessary meds.

This was said to me, on reflection, even though I was diagnosed with sicca syndrome by a rheumy around 2009, (not given sjogrens label due to negative tests) and had had dry eyes and joint pain, reynauds, plus livedo reticularis, Gerd, etc.  But the doctor didn't agree, seemingly.  Maybe it was menopause?  In the late 1990's I'd had schirmers test and punctual plugs.  That didn't count.

Around this time we moved home, many 100's of miles away.  All was well, and we are very happy in our new home

Then 6 months after the move I started with really bad fatigue and joint pain again.  Went to see new local doctor who is also a joint specialist.  He immediately wanted to refer me to a rheumatologist, but I explained I'd been on that merry go round before ...  Could I please just have pain killers?

Anyway, this doctor is a keeper.  I am still sero negative for everything but he listens, and every test he sent me for, something has been discovered.  I have bad tendinitis, always did.  My shoulder had an MRI and turns out I have calcification.  I also have chronic hip bursitis - turns out due to mis-shaped joints.  I get steroid injections every 3 months for these now and it helps.  I recently found out I have osteo arthritis in lower spine and hip joints.

My reynauds was worsening, so I thought, this summer - nerve conduction and electromyography determined I have chronic axonal degenerative motor and sensory neuropathy.  Neurologist said I have lost reflexes.  Meanwhile,  i noticed a deep groove on my forehead, dermatologist says it's "en coup de sabre" morphea.

I have had a dry mouth, cracked tongue and two serious bouts or oral thrush in summer, too.  I still have aquagenic pruritis.

Still, no-one joins the dots and I daren't suggest sjogrens.  So I recently saw a new rheumy.  He found low vitamin d, nothing else.  Dermatologist said to inform rheumatologist of morphea.  Rheumatologist didn't agree it was morphea.

The neurologist report says I have a sero negative auto immune condition.  The dermatologist says I have morphea en coup de sabre.  The rheumatologist is now suddenly interested, due to nerve conduction test results.  I took my hubby with me to last rheumy appointment as was utterly dismissed by them 6 months ago.  Now that rheumy has seen nerve conduction result he asked were my eyes still dry? And did I know that PN can be autoimmune? 

So the new rheumatologist is still fixated on blood tests always being negative but PN results seems to have had an impact.

I start a months prednisone in 2 days, ordered by neurologist.  He is convinced it's  auto immune.  He says if the prednisone makes me feel better it will prove this is auto immune.

I just had a biopsy on my scalp to see if it truly is morphea (4 stitches - ouch!). Results in a week or so.

If this is not sjogrens, then anyone have any idea what on earth is going on?  No way is this all in my head!

[irish]

Well come back. I will jump in and say that I would not be surprised if you have seronegative Sjogrens. Tendonitis is extremely common in people with Sjogrens. I have had carpal tunnel surgery on both wrists. I have tendonitis in tendons in my feet that is very painful and drives me crazy. I also have tendonitis off and on in my Achilles tendon and that can be painful.

People with Sjogrens have a lot of issues that are hard to keep up with. The doctors need to always make sure to keep abreast of the systems that are involved with Sjogrens. Have you seen a neurologist?? Single fiber neuropathy can also be a diagnosis that hangs around with Sjogrens. I am betting that there are other neurological issues that can accompany the Sjogrens. The morphea could be another condition that is separate.

I now have 5 autoimmune diseases and I wonder how many more will be added to the list. When the doctors get so darn stuck on getting a positive blood they seem to forget the patient--or so it seems. It is very common to have  seronegative Sjogrens and the symptoms need to be treated in order to keep the patient comfortable, It sometimes takes years to convert to positive blood work. The arthritis that goes with Sjogrens can be very severe and often is hard t distingisuish from Rheumatoid arthritis.

I know a gal who was diagnosed with Rheumatoid Arthritis and suffered and was treated with big gun meds for twenty years. She went to the doctor one day and had more blood work and they called her and said she didn't have Rheumatoid---she had Sjogrens. Wow!!!! She even took gold for the Rheumatoid she didn't have. Don't let the docs try and get too carried away and overthink the whole thing. You may be right about the Sjogrens so stick to your guns.

This is just my opinion gleaned from all the info we have had from people who come to this site with illness that doctors refuse to believe is Sjogrens but is later proven to be that condition. Good luck. Irish

[Joe S.]

Welcome back.

[SjoGirl]

Had it not been for my PCP, who was certain that my issues were systemic, and a neurologist who asked if I had rashes along with my massive migraines and joint pain, I would not have been diagnosed with SJs. That said, I can't take Plaquenil so take Evoxac for dry mouth, Nexium for GERD (recently asked my PCP if I could stop, she said nope, not with Sjs) and Restasis for eyes (plus have punctal plugs).

I have neuropathy in my feet and numbness in my left arm along with oetoarthritis in most of my spine. Also DDD in my neck. I have an EMG tomorrow to follow up on some of the issues with my arm.

What I'm attempting to say is some of my issues are SjS, some are not. It has been a very long journey and it continues. Finding a great PCP who kept referring me to docs, and finally to an academic medical center about two hours away is all that has stood between my situation and yours.

Keep being your own advocate. Take people with you to appointments, docs will listen to my spouse sometimes because he seems less emotional (and is a man). Be persistent, this is about your life!

[Carolina]

Dearest Jaygeee and all:

For what it's worth I will note my case.  I do NOT have any autoimmune conditions.  Instead my defective immune system uses other biochemicals to attack and damage the organs/systems of my body.

I have all of the usual symptoms of Sjogren's, as a child I had severe eczema, I have Meniere's, lung damage, bladder damage, profound peripheral neuropathy, and small fiber neuropathy.  I have severe osteoarthritis, as well.  And severe coronary artery disease.  All of these are the effect of the inflammation caused by the attacks of my Immune system.  Inflammation also causes profound fatigue, pain, and depression.

And I ALSO have Primary Immune Deficiency.  My immune system, while mounting attacks on my body's organs/systems, is deficient in IgG and does not adequately defend me from infections.  All of my immune factors are at the low end of normal, and two are deficient. This was not discovered until 5 years ago, and treatment began 3 years ago.

Therefore:  I have IVIG every  four weeks, and infections are no longer an issue.  I take the medications listed below my signature line, to deal with symptoms.   Aside from the IVIG  there are no direct treatments for my conditions.

Please consult an immunologist or a rheumatologist at a major teaching hospital.  Stop looking for what is not there and deal closely with your symptoms, and get the emotional and other support you need from us.

Doctors simply do not have enough knowledge to deal with us who beyond the frontier of medical knowledge.  But a bright, sympathetic and curious doctor should be able to at least acknowledge this and work with you.

Welcome back,

Regards, Elaine

[SjoDry]

Welcome Back Jayeee,

Symptoms are symptoms regardless of what the bloodwork says. I am on my fifth Rheumy (have also heard the Hypochondriac references in the past). I , like Carolina, have CVID. One of the interesting things I found out, is that people with immune deficiency may be unable to produce the antibodies that docs look for to diagnose. Don't give up! You need treatment and NO you are not a hypochondriac.

Take Care.
SjoDry

[Deb 27]

Jaygee, sorry you haven't been feeling well and are back, but welcome back just the same. I had a rather crooked path to the SJS diagnosis until I had a lip biopsy. They knew it was auto immune but at first thought it was seronegative RA. I had a positive ANA and sed rate.

Anyway, at the beginning of this whole auto immune thing, I also got morphea, which they say is quite rare. Mine was not "en coupe de sabre" it was regular morphea. Then the joint pain started my quest to find out what was up. My morphea was a pinkish rash that turned to a brown color when it burned out. I don't seem to have it much anymore.

I hope the prednisone helps.  Get your Vit. D levels checked too. Almost all of us are low on that.

Please don't feel you are a hypochondriac or let anyone else treat you that way.

[Jaygeee]

Thankyou everyone.  I will keep you posted on the next round of tests

Hope you are all having a good day xx

[Jaygeee]

Hi everyone, thought I would update.

Started 40 mg prednisone and felt like I was cured of every single health problem, almost immediately!  However, I had terrible insomnia, only sleeping 2 - 4 hours per night.  No fatigue, full of energy and motivation, very little pain, etc.  This was great for 2 wonderful weeks, until the dose reduced to 30 mg.

I absolutely crashed   I spent 3 days totally wiped out exhausted and in tears.

Back to neurologist today.  He says " did you feel like you won the lottery, then someone took it away"?  Exactly!!

He says this proves to him that what I have is autoimmune and that a rheumatologist needs to treat this, which will help the neuropathy.  He has put me back to 40mg prednisone and added 10 mg amitriptylene to help me sleep for now.

I don't much care what diagnosis I get labelled as, as long as the medication helps xx

[irish]

I am glad that you are getting support for the autoimmune diagnosis. I do hope that you get into the rheumy asap so that you can get off the prednisone. When the docs do a "burst and taper" they usually do the 40 mgm for 3-5 days and then taper to the 30 mgm and then down to 20, then 10 and slowly some way off of the med. It can be a jolt to the body. If you are going to stay on the prednisone it is best to get down to the lowest dose possible cause it is easier on ones body.

I am steroid dependent and have been on prednisone for 10 years. I am always tapering down and have such a time getting down to 10 mgm every other day which is the physiological dose that our body does fairly well with. I had no symptoms when on the dose. No swelling, etc. Hope you get this all figured out. Irish

[Jaygeee]

Hi Irish - yes, I need to get off this high steroid dose. Neurologist mentioned several other things to try and has referred me to the rheumatologist.  I have private medical cover through my job (UK), so I am hoping this will be quick 

[Jaygeee]

Hello everyone, hope you are all ok 

Saw the rheumatologist today.  He reckons I have UCTD with morphea en coup de sabre, symptoms of rheumatoid arthritis, sjogrens and lupus plus the peripheral neuropathy.  All bloods negative.  He is going to taper me off steroids and move on to azathioprine, plus increase hydroxychloroquine to 2 x 200 mg plus continue vitamin d.  So, no " differentiated" diagnosis at this time, but if my comfort and well being are maintained as well as they are on 40 mg prednisolone, I will be happy.

But still not sure I should be on this forum!  xx

[MAT51]

Well come back. I will jump in and say that I would not be surprised if you have seronegative Sjogrens. Tendonitis is extremely common in people with Sjogrens. I have had carpal tunnel surgery on both wrists. I have tendonitis in tendons in my feet that is very painful and drives me crazy. I also have tendonitis off and on in my Achilles tendon and that can be painful.

People with Sjogrens have a lot of issues that are hard to keep up with. The doctors need to always make sure to keep abreast of the systems that are involved with Sjogrens. Have you seen a neurologist?? Single fiber neuropathy can also be a diagnosis that hangs around with Sjogrens. I am betting that there are other neurological issues that can accompany the Sjogrens. The morphea could be another condition that is separate.

I now have 5 autoimmune diseases and I wonder how many more will be added to the list. When the doctors get so darn stuck on getting a positive blood they seem to forget the patient--or so it seems. It is very common to have  seronegative Sjogrens and the symptoms need to be treated in order to keep the patient comfortable, It sometimes takes years to convert to positive blood work. The arthritis that goes with Sjogrens can be very severe and often is hard t distingisuish from Rheumatoid arthritis.

I know a gal who was diagnosed with Rheumatoid Arthritis and suffered and was treated with big gun meds for twenty years. She went to the doctor one day and had more blood work and they called her and said she didn't have Rheumatoid---she had Sjogrens. Wow!!!! She even took gold for the Rheumatoid she didn't have. Don't let the docs try and get too carried away and overthink the whole thing. You may be right about the Sjogrens so stick to your guns.

This is just my opinion gleaned from all the info we have had from people who come to this site with illness that doctors refuse to believe is Sjogrens but is later proven to be that condition. Good luck. Irish

There is such a lot in this post and thread that interests me. I was just about to post a question about tendonitis so your comment about how common this is with Sjogrens is really useful Irish.

Jaygeee don't give up fighting. You obviously do have seronegative autoimmunity -maybe Sjogrens or CREST perhaps (Morphea) or UCTD, RA or PsA or other. I was diagnosed and treated for seronegative RA which turned out to be primary Sjogrens. I tried four disease modifying drugs and suffered anaphylaxis from an RA drug as well as three that are also sometimes used for Sjogren's. This time last year I was undiagnosed by a second rheumatologist altogether when I relocated. He said my autoantibodies were negative. I pointed out that I was taking steroids after five years on antirheumatic drugs and asked if this might have skewed my bloods? Oh no this wouldn't happen he told me very assertively -"you do NOT have a connective tissue disease!"

Five months later in a new hospital and off all meds my ANA was found to be clear positive and my sed rate was still soaring as it had been every time I was unmedicated. My immunoglobulins were raised. So the new rheum (just retired) ordered a lip biopsy and bingo - 100% positive for Sjogren's.

Two days ago a rheumatologist told me that the tenderness in my elbows was tennis elbow/ tendonitis/ repetitive strain. I asked if this was part of my Sjogrens but he said no it wasn't and just rest it up and use anti-inflammatory gels. Hang on I've had this pain in legs and arms and even the RA diagnosis was made more in relation to synovial swelling, pain and swelling in my tendons. What planet are these people on -not mine (or yours) evidently?!

So hang in there and keep pushing for a diagnosis. Mat

[irish]

With all that you have going on it seems like this forum is just the place for you. There are few people who have just one autoimmune disease and your list certainly makes you a member. Hopefully you will feel better soon.

The plaquenil is rather slow to act but some people notice it sooner than others. Usually around 4 months or so. The azithrioprin is takes awhile also but don't know how fast it takes. Much of the time the docs will do the slow taper so that the plaquenil has time to kick in. If after a certain amount of time the prednisone is done and there is no improvement the docs will add a lower dose of prednisone to taper and thus give the plaquenil more time to kick in. We are all different. Thank goodness your rheumy took you seriously and sounds like one who knows more about autoimmune issues. Irish