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Sjogrens...anyone else have CFS/ME and Sjogrens?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Misfit Toy, Apr 18, 2014.

  1. Mya Symons

    Mya Symons Mya Symons

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    Wow, you have a lot going on!

    Did your doctor offer the plaquenil or did you have to go through "hoops" to get it? I am having a hard time convincing mine. He just sort of talks around it and says he wants to keep an eye on it first. I think it is the Fibromyalgia CFS effect. Or, maybe it is because I live in the sticks and I need to find a doctor in the city. I have been using restasis for years and it seems to be loosing effect which scares me a bit because it is hard to see. My hair is also extremely dry and, unfortunately, starting to fall out and stay gone. It didn't start until the SSB antibodies increased so I am assuming it is the Sjogren's. I have that water bottle with me wherever I go and lots of gum.

    And, I also have a very large nodule on my thyroid. Weirdly, it is only on one side and the other side looks pretty healthy. I have sky high Hashimoto's antibodies, however. It is just strange that they seem to stick to one side.
     
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  2. Misfit Toy

    Misfit Toy Senior Member

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    @Mya Symons !! You need to find a new doc if you can. That was the first thing that was offered to me right away, Plaquenil. No hoop jumping. He new I had Fibro, too. Also, CFS and CVID. So, he thought Plaquenil could help the whole immune system. There is also that other drug that helps with the dryness that starts with an E. I am on FB Sjogrens website. It's on FB...I've learned a lot.

    Man, you live in WY. I was there in September and it is the sticks. There was no doctor for about an hour. I was in Saratoga. Beautiful country.

    I feel like I get so much of what Iw ant because of where I live. I go to doctor's that are eager to give me medicine. I read people's stories and I am like...WOW, I don't go through that at all.
     
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  3. melamine

    melamine Senior Member

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    I tested negative for diabetes insipidus but not for the lesser condition called polyuria. I have never been biopsied for Sjogren's because of low antibody titers, but Dxed with sicca syndrome. In a sense, it confirms a relation between the two (types of) conditions.
     
  4. Misfit Toy

    Misfit Toy Senior Member

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    Regarding Sjogrens or Sicca...I have been on Plaquenil for 2 months and have a migraine that has lasted for 3 weeks. The Plaquenil has helped pain, but I am on a super low dose. I had to go to the ER this AM for a migraine that will not let up. I am on an FB Board for Sjogrens and one of the most common side effects of Plaquenil is chronic headache and it forces people to have to stop it. Since I rarely have migraines or only have them during my period, or before...this is new and I can't help but think it's the medicine.

    The more medicine they have given me for the migraine the sicker I am.

    I hate this. Why can't I take a medicine and just have it work?
     
  5. Kati

    Kati Patient in training

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    :-( So sorry @Misfit Toy. I was on Plaquenil for about 12 years and it worked well for me. I remember that the generic caused an upset stomach, but the brand name Plaquenil did not. Perhaps you could try a different brand?
     
  6. melamine

    melamine Senior Member

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    @Misfit Toy - Headache is a sign of overdose. If you think it might be that and want to continue with it, maybe your doctor can adjust the dose or dose schedule?:

    "Symptoms of overdose can occur within a half-hour of taking the medication. Overdose symptoms include convulsions, drowsiness, headache, heart problems or heart failure, difficulty breathing and vision problems."

    I didn't see chronic headache on this list of side effects that I found:
    "For prolonged treatment of lupus or arthritis, adverse effects include the acute symptoms, plus altered eye pigmentation, acne, anemia, bleaching of hair, blisters in mouth and eyes, blood disorders, convulsions, vision difficulties, diminished reflexes, emotional changes, excessive coloring of the skin, hearing loss, hives, itching, liver problems or failure, loss of hair, muscle paralysis, weakness or atrophy, nightmares, psoriasis, reading difficulties, tinnitus, skin inflammation and scaling, skin rash, vertigo and weight loss. Hydroxychloroquine can worsen existing cases of both psoriasis and porphyria."
     
  7. Misfit Toy

    Misfit Toy Senior Member

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    Hi @Kati - many people talk about going from generic to brand. But, many say that headaches are the same whether it's brand or generic. It really has helped my pain...as in overall pain. But I can say, I have no energy on it. Kati, maybe you told me, but why were you on it and why are you off of it?

    @melamine - I am on the lowest dose there is. I am only taking 200 mg 3 times a week. The normal dose is 400 mg everyday! So, adjusting it...would mean taking "none."
     
  8. Kati

    Kati Patient in training

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    I was on it because I started having small joint pain, fingers and toes. i had trouble opening doors (knobs). plaquenil did great for that. i didn't have any RA or rheum. Markers other than a very high ANA.
    I stopped it when I needed to stop it when I was scheduled for a visit at Dr klimas, she needed me to be off it for the cytokine testing.

    My fingers and toes pain is on and off, and these days I have bigger joint pain. But with the ME diagnosis, docs don't even want to see me. It's pretty pathetic. i am also on a 2years ankle surgery waitlist.
     
  9. Misfit Toy

    Misfit Toy Senior Member

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    @Kati-I can't believe you are on a 2 year wait list. That makes me sad. If you have high ANA, it's not just ME. ME is a horrible diagnosis and docs don't take it seriously, I know. Even with diagnoses with other conditions, docs and people don't take you seriously. With all of the diagnoses I have had, I am told..."There isn't much we can do, or you are are so sensitive to meds." And....then I am dismissed or doc's don't want to deal with me.
    I have idiopathic lymphopenia which means I have no lymphocytes. I can't find any kind of pathogen. There is no treatment, nothing they can do and it's like having AIDS without having AIDS. I mean...that sucks. I have this thing that is actually legit, real, they take it very seriously....but nothing can be done for it.

    Great.

    Are you able to get to a rheumatologist or is the whole Canadian system making it impossible for you?
     
  10. melamine

    melamine Senior Member

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    @Misfit Toy - It's regrettable you are not tolerating it if you think it would help. I stopped Plaquenil within a week of starting it because of a rash that I assumed to be allergic. Doctors never questioned my stopping it or suggested I try it at a lower dose. What I read about potential side effects left me with a mixed impression of its safety even though many people seem to have no problem with it. Then I read that it lowers immunoglobulin and my IgG1 is already below normal, so I think I would pass on it now. I have a tendency to mild lymphopenia also, and anemia as well.
     
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  11. Misfit Toy

    Misfit Toy Senior Member

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    @Kati -I'm also not saying ME isn't legit....I didn't mean it that way. I still have it and had it for 24 years without this diagnosis. I just meant, to docs, my diagnoses now are REAL to them...which is not right.

    @melamine -wow, I didn't know that. Why were you on it? My lymphopenia is really bad. So much so that my doc is like....wtf? My immunologist. I notice that when I get a cold, it seems like an allergy. Why? Because my body doesn't detect it or send igg to fight it due to the low lymphocytes. It really bothers me that there is nothing they can do for this.

    I have 3 diseases that I have a 40% chance of developing cancer. Nutso!
     
  12. Kati

    Kati Patient in training

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    i was not assuming anything, @Misfit Toy We all have stories of not being believed. i was just saying things the way they wore for me.

    And yes, it is appalling that "there is nothing the can do for this"-
     
  13. melamine

    melamine Senior Member

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    @Misfit Toy - I'm not sure! because the rheumatologist that prescribed it was misinterpreting my symptoms and history and Dx-ing me with lupus at one point. Maybe the combination of sicca and thinking I have lupus was the reason for prescribing Plaquenil.

    I just started seeing another University-based rheum. and I believe he and my endocrinologist think I have a mixed connective tissue disease, which I more or less agree with but only as an aspect of late stage CFIDS/ME. I haven't had a chance to discuss this with the new doctor so I don't know how aware he is of serious research in the field of CFS, and the extent to which it overlaps with newer theories in his field. My goal with him is to see if he is able and willing to prescribe meds to treat the autoimmune condition as secondary to immune deficiency, since immune-suppressing drugs are out of the question. He may not be able or willing to, insurance-wise, and I cannot afford to self-pay for expensive medicines myself. I'm still looking into what the possibilities are and will be seeing a couple other specialists as well. He seemed open to my trying LDN, but in my current trial I am so sensitive to it that I don't know if it is going to do me any good in the long run, and have to be very careful not do harm in trying to find out.

    I have sicca syndrome now, or Sjogren's, a distinction that was never clinically ruled out. My ANA is now positive and I have low levels of at least 8 autoantibodies that have been tested, and minute AB of a couple more, but inflammatory markers are consistently normal or low normal, and I have enough signs and symptoms of immune deficiency that I see that as the primary condition, and autoimmunity as a consequence.

    One of my symptoms is that my glands fail to swell "enough" and my temperature fails to rise "enough" when I have serious infections, which are then misdiagnosed as a result and left untreated or not treated sufficiently or appropriately. Another problem is that there is little to no documentation indicating the seriousness of them and in one case, that I had a game-changing infection at all. So when I was evaluated for CVID, there were insufficient records to support the historical facts that I was relating to the doctor. Between neutral and immensely harmful, most doctors' notes had failed to substantiate the infections in my history or notate the symptoms I was reporting at the time. My inability to get a diagnosis of CVID may have had as much to do with that as with not having labs that conformed to a strict conventional diagnosis.

    While my total IgG is in the low normal range (and falling), my IgG1 has remained below normal, C3 remains below normal, lymphocytes have been consistently below normal in the borderline region (although recently in normal range, possibly because I am showing signs of increased infection), and my RBC have been in the borderline to anemic range. I have chronic-elevated titers of EBV, coxsacki Bs, and adenovirus, and a chronic post-acute upper respiratory infection. I am at much greater risk for cancers associated with EBV and have a bone marrow condition that is considered pre-cancerous, although it doesn't always progress to that.


    If your adrenal function is normal, it sounds like you might benefit from IVIG or antibiotic therapy if you could access either of them. Some people with rheumatic conditions are self-treating with doxycycline and/or minocycline according to a protocol. A list of doctors who prescribe and treat according to it is available, I believe.
     
  14. Sidereal

    Sidereal Senior Member

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    We have remarkably similar symptom presentations and diagnoses. It really bothers me when rheumatologists try to shoehorn this symptom complex into something they consider to be a REAL disease like lupus or MCTD. I only developed connective tissue disease many years into ME but of course ME is a fake disease so now that I have these antibodies I am really sick whereas before I wasn't, I was making it all up. What's ironic is that ME is way more disabling and life-destroying than these officially recognised symptoms/diseases.
     
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  15. Misfit Toy

    Misfit Toy Senior Member

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    @melamine -wow...you ARE me. Developed CVID after so many years of CFS. I still call it CFS...that's what I know it as. Anyway, I didn't have joint pain, all of this pain until years into this disease. I am known to have primary sjogrens but to me....it's secondary to CFS. I'd say this started for me in 2008 and without hesitation, because of perimenopause. The rapid hormone change brought it on. The pain, the fatigue, you name it. No one takes it seriously and even with a great doc who deals with CFS, I am not getting anywhere because I am allergic to everything.

    I did IVIG for 5 months with the worst side effects, liver and kidney enzyems elevated, an all over body rash, my heart beat and blood pressure were sky high and I am so low with BP. I couldn't even get out of bed, ever. I became so sick from IVIG and the best part was my blood work was showing it because, as usual, most can tolerate it just fine. Not me.

    I also took LDN. Couldn't sleep to save my life. I hate my body for this. HATE. Why can't I take anything and why do I turn everything into a freaking circus? I can take magnesium, Vitamin C, Vitamin B and a few other things....I can take benzos just fine, but give me anything like an antidepressant, stimulant, Topomax, or any narcotic...forget it.

    So, my body is so screwed up that in spite of all of these diagnoses, it really doesn't matter, because the meds make me too sick and so do some of the supplements.

    I have low inflammation SED currently, but that isn't right since I am in so much pain. I just had a cold that seemed like an allergy. It started as a watery nose but lead to a cough and sweats. I then coughed up yellow mucus and though...oh, I have an infection, but my body doesn't react normally to an infection...it can fester for a bit before it gets going, unlike a few years ago. Ever since I had this infection, I now have costochronditis and can barely function...along with the migraine I had. So, I went from functioning to not. I don't feel the cold so much now, but know it's there.


    I always have low level infections.

    I am sort of tired of having hope. I always have hope only to have it dashed. I try things thinking.."ah, this will help me." Nope.

    Tired of it. Not sure where to go from here, or what to do.
     
  16. melamine

    melamine Senior Member

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    @Misfit Toy - Don't give up hope! I understand feeling that way from time to time though. I'm really sorry to hear how badly you did on IVIG. Did your doctors have any idea what might have caused it and did they understand how sick you were feeling while you were on it? Five months seems way too long to be suffering with those symptoms. I thought if a patient didn't start feeling even a little better after a month or two that doctors would either suspect it's not going to help or consider a different dose, but I am not familiar with IVIG. I'm curious about what caused your bad experience.

    Since they typically give anti-histimines and NSAIDs to reduce reactions to IVIG, is there any chance you were reacting to those also?
    I began crashing after dental surgeries in August and September with increasing neuropathic and other symptoms, and increased fatigue that have only gotten worse. I've needed a lot of dental surgeries and this has been a pattern for several years, but I've been unable to identify what in particular is causing it. It could be the anesthetic or NSAIDs or amoxicillin or probiotic/high glutamic/high histamine foods I took afterward, or a combination. I know that glutamic acid is highly toxic to my nervous system. I was considering seeing a mast cell specialist but then decided on seeing a new neurologist instead. They are in the same city out of state, but I didn't think I would be able to get authorization to see both, so made a choice. Maybe that is something you would want to consider? There are not many who sub-specialize in this area so that can present a challenge.

    What reactions do you get to narcotics? I've experienced cardiotoxic hypotension following the use of several medications at one time, but as usual, was unable to identify exactly which or what combination was causing it because the second time it happened didn't involve dental anesthetic, unlike the first and third times. Codeine pain killers have made me vomit, but I'm not sure if I reacted to them in that way every time because I was prescribed them so infrequently. I believe at least one of the hypotensive episodes involved a codeine pain killer.

    I react badly to some Bs, especially high dose. I've been feeling more tired and depressed since trying higher doses of active forms of B12 and methylfolate/folinic, so I may have to abandon that experiment. I also tried a lipophilic B formula recently and felt much worse after half a dose. I continued experimenting with it in smaller doses and also a lipophilic C and I think I react badly to both, but especially the Bs. It looks like the "lipo" portion of it, which is choline, might be the problem, but I've taken pure choline and not reacted badly.:bang-head:

    I have been trying LDN in divided doses throughout the day instead of one dose at night, and have not had any increase problems with sleep - I still wake at least once. In fact I didn't have typical problems with sleep even when I started it at night, but increased nervous system symptoms. I don't know if I'm undermining its potential good effects by taking it the way I am but I need to do everything possible to preserve sleep and avoid nervous system stimulation, and I've read that some other people take it during the day also. I have been trying it for nearly 2 months, with a small break, and never experienced any good rebound effects that are supposed to occur following the initial opioid-inhibiting effect.

    The reason I started trying LDN is that a friend of mine who developed ME with migraines has had great success using it - turned his life around, but his symptoms had not been as long-standing as mine and he had a classic response to the LDN, which seems to bode well for it working as it should.

    Do you have any EMF sensitivities? Computer use? I have to limit mine because my nervous system gets buzzier and I feel sicker the longer I use it.

    I have had a chronic upper respiratory infection for 10 years that has thinned out the mucus and left the inside of my nose and pharynx raw and now bleeding again, and damaged my voice. I'm constantly getting swelling, redness and pain in my nail folds where they're chipping and cracking, and I've had symptoms of a chronic heart or pericardial infection for 10 years. (Problem: conventional medicine tends to recognize "post-infection" at most) That and the sinus were both acute together when they first began. Cardiologists have been between unhelpful and abominable and I stopped going to them, but when symptoms worsened again recently my doctor gave me a very specific referral that makes it clear what he is to evaluate me for, and it has to do with the history of infection. So that is another thing I have to look forward to - with mixed expectations.
     
  17. melamine

    melamine Senior Member

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    @Sidereal - maybe you can tell me a little more when you have time. I have been very tired lately and not always replying as soon as I'd like.
     
  18. Sidereal

    Sidereal Senior Member

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    Sure. Send me a PM with any questions you might have.
     
  19. DorothyParsons

    DorothyParsons

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    It is always good to have a healthy oral condition to avoid any problems. Regular checkup is always favorable. You can have a regular checkup at weekend hour Silver Spring, MD
     
    Last edited: Dec 26, 2014
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