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    Old 06-20-2014, 01:47 PM   #1
    charlie276
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    Advice

    Hi, Im new here and I was just after some advice.

    Im under the care of a rheumatologist as well as the pain clinic at the moment due to ongoing issues. My rheumy thinks I have a connective tissue disorder hes just not sure which one and I didnt get to see him for the follow up as he was busy.

    He originally put me on Plaquenil which I tried for a very short time (weeks) until i called the hospital and my bloods came back fine so i took myself off.

    On the follow up he told the woman i did see that he thinks i should go back on plaquenil as he still believes i have a connective tissue disease despite negative blood tests, i have had mildly positive ana's a few times in the past but clear this time.

    Im just wondering if any diagnosed people have any of the following symptoms. I get very sore joints and what feels like ligaments as well as gland pain, my joints feel stiff and my fingers feel like they get to fat but there is NO visible swelling or redness. I also get what seems like all of a sudden an extremely dry mouth, eyes, throat and sometimes other areas if you know what i mean. Im aware of Sjorgens syndrome however as i understand that slowly destroys your mucous type tissue over time which would indicate things would only get drier, (i dont know of course) and mine is more like attacks. So i can be feeling
    well and then the pains can come on or i can have pain without the dryness and suddenly the dryness can come on. I have many symptoms which I won't list as it would be too.

    I'm really interested to know if anyone that has a diagnosis has attack type things. Like someon flicks a switch. Don't get me wrong I hurt almost everyday but the intensity and certain symptoms are like someon hits an button and sometimes a terrible day can suddenly stop being so bad.

    I'd also like to know if anyone with arthritis, lupus etc that causes bad joint pain, muscle pain, stiffness manages to do lots of excercise, I really want to start, I've been holding on for 5 years thinking these symptoms were just a unknown infection or something that could be fixed, I guess now I've come to terms that it's not going away. Excercise kills me and makes me hurt so if u can do it how do u manage it and is it safe eg no damage to joints.

    Also any meds/foods/supplements help anyone?

    Thanks in advance

     
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    Old 06-23-2014, 06:05 PM   #2
    VeeJ
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    Re: Advice

    Hi, Charlie, and welcome. I can understand why you're dismayed at not having a more succinct diagnosis, but also why your rheum was dismayed that you stopped Plaquenil. It's a slow-acting med and actually takes upwards of 4-6 months to reach full effect. Taking it for only a matter of weeks wouldn't prove anything. Actually, some doctors instead prescribe a short course of steroids as a "challenge", and thus can start drawing some conclusions a lot faster.

    Of the things you listed, I had sore joints, stiffness, and dry mouth (incl. swallowing problems). I also had (and still get) pain that comes on suddenly. Typical areas for that: feet (like nails have been driven into them) and long bones (shins & forearms). I also had other issues, including migraine-like headaches, years of GI and urinary problems, weight loss, hair loss, photosensitive skin rashes, etc.

    I gave up high-impact exercise over time, much as I hated doing so, like jogging, tennis, step aerobics. Also anything that bothered tendons & ligaments too much (skating). The added misery just wasn't worth it. I now do gentler things like Pilates, yoga, and simple walking. I don't actually enjoy them as much, but it had to be done. I also have to avoid sun---and I REALLY hate that---because I'm in a subset of lupus that's notoriously photosensitive.

    I just try to keep to a normal balanced diet. I do aim for low-fat, veggies & fruits, lean protein. I avoid red meat b/c it's never agreed with me---so it's chicken & fish instead. No fried foods. Lots of water.

    In your shoes, I'd want to see my lab reports. Although you think your labs have been negative except for occasionally elevated ANA, maybe there are AI "hints" you're not aware of, like elevated ESR, depressed WBC, etc.

    I'd also want thyroid labs run, because symptoms of hypothyroidism overlap with symptoms of milder cases of lupus, etc.---and it can co-exist with other AI's---so it makes sense to rule thyroid in or out.

    Are you going to see the rheum for a follow-up? I hope this is what you were after. Drop another line when you can, OK? Sending warm wishes, Vee

     
    Old 06-24-2014, 09:41 AM   #3
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    Re: Advice

    Hi Charlie, I have had lupus for 30 years, and have many of the symptoms you have. The "attacks" you describe are frequently called flares, like a flare-up of symptoms, pain and fatigue. Most people with autoimmune disease/connective tissue disease have them. They can be triggered by sun exposure, stress, exhaustion, illness, etc. and sometimes just occur out of the blue. Some people have them rather cyclically, others have more unpredictable flares as far as timing. Exercise is good, but I would avoid high impact on the joints and overdoing it. A gentle, regular routine is best. Swimming, bicycling, and walking are good choices if you can do them in shade or indoors. Stretching is good too to maintain joint mobility and relieve stiffness, like in AM when stiffness is usually worse. Strengthening exercises are fine as well, as long as they don't cause pain in joints or muscles. Some people with connective tissue disease get back problems, so I would avoid extreme weight lifting. Moderation is key. I too try to limit my animal fats, as well as lower my salt intake, as these diseases can accelerate heart disease, cause high BP. Keeping weight down is important, as obesity will accentuate tendency to high BP and cause more stress on the joints, heart, lungs, etc. Many people have ANA turn negative once on treatment. That doesn't mean the problem is gone, only that the treatment is working, so I would go back on the Placquenil and see how you feel in 3-6 months. Hopefully your flares will be either gone or less severe. If not, another medication may need to be added. It is common at first for connective tissue diseases to defy specific identification, but in time, usually declare themselves with additional symptoms or lab evidence.

    Last edited by ladybud; 06-24-2014 at 09:44 AM. Reason: clarification

     
    Old 07-01-2014, 04:48 AM   #4
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    Re: Advice

    Thanks to both of you so much for replying to my post, I had a cervical facet injection last week so have been a bit absent.

    I was avoiding going back on the plaquenil until i had the injection as i was concerned about anything lowering my immune system. I think im hesitant to take it as im concerned about the eye problems, have either of you had an issues? I read lots of reviews that said it changed thier lives but also alot that said they got eye issues and they are now permanently partially blind. My mum also took plaquenil and had to stop due to it upsetting her stomach so much that she had to were incontinent pads to avoid accidents.

    I am going to go back on it to see if it helps.

    I think Lupus has been ruled out as I dont have any skin issues that im aware of, the sun itself doesnt seem to make me worse although i do feel better in winter but i think thats because the air during the summer months is to thick if that makes any sense. I do have stomach issues but im reluctant to see the GP about them as i think hes sick of the sight of me, ill mention them to the rheumy next time i go.

    I will ask to get a copy of my labs but my thyroid has been tested numerous times and i went to a private clinic at 1 point to get the antibody test and things, the pain in my throat certainly feels like intermittent swelling of the thyroid or adams apple, i also feel what i can only describe as a blade in my throat at times also. Its not a feeling either, something is sharp and pushes into my throat/neck, my hyoid i suspect. Perhaps my throat swells.

    I feel like i can handle it when my lower joints hurt, its just my neck, shoulders, face pain along with pins and needles type sensations in my face, throat etc that get to me the most.

    Im going to get some decent fish oil and see if that makes a difference and i might ask the rheumy next time for a few days course of steroids as you suggested to see if that makes a difference. I had 1 muscular steroid shot which i didnt notice a great improvement with, that said i did have a period of feeling somewhat better and it lasted longer than the usual day, 1-2 days.

    Thanks again

     
    Old 07-01-2014, 07:56 AM   #5
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    Re: Advice

    Since you have intermittent swelling in what seems to be your thyroid area, I would discuss with your Dr. getting antithyroid antibodies checked. Most Drs only check hormone levels, and anti-thyroid antibodies suggest an autoimmune thyroiditis (Hashimoto's) when positive. That can cause many symptoms, including becoming hypothyroid over time. You could check your previous labs to see if you ever had them done (anti-TPO and anti-TG).

     
    Old 07-01-2014, 08:00 AM   #6
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    Re: Advice

    Charlie, hi. One US rheumatologist who's also a well-known author weighs in VERY forcefully on the Plaquenil eye toxicity concern. He says that FAR too many patients are scared off this drug unnecessarily, by doctors who don't understand that its risk of melanin buildup leading to permanent damage--in patients without kidney disease---is actually EXTREMELY low when (1) taken in correct dosage (correct for your weight) and (2) coupled with twice-yearly visits to your eye doctor. Why? Because your eye doctor will catch (the rare) melanin deposits BEFORE they ever affect your vision---and further, the deposits "almost always" recede in weeks once you discontinue the drug.

    The overall odds of permanent damage for the group, with the caveats stated? Less than 1 in 100,000---which I personally consider great odds, enough to prevent my worrying.

    BTW, the eye exam is a "field vision test". You stare at a screen using one eye, and you depress a little handheld clicker when you see a flashing light. The results are shown graphically, so your eye dr. will quickly spot any "blank areas". Painless. Takes about 10 minutes to test both eyes.

    This author clarifies that many patients DO legitimately report blurring, blindness, etc. but for reasons totally unrelated to Plaquenil. These, he says, are typically patients who take steroids in addition to Plaquenil (steroids are notorious for eye problems), also patients who take chloroquine (far riskier than Plaquenil & the melanin buildup it causes does not reverse itself).

    I was fortunate to have read this author's explanation BEFORE being diagnosed & starting Plaquenil, which allowed me not to dwell on Plaquenil and eye issues... and to worry about other things instead.

    I hope this helps some & that you're feeling better after your procedure of last week. Sending best wishes, V.

    Last edited by VeeJ; 07-01-2014 at 08:02 AM. Reason: omitted a word

     
    Old 07-01-2014, 10:18 AM   #7
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    Re: Advice

    Please be aware though, that many rheumatologists will not give you a few days course of steroids to see if it helps because in scleroderma patients, it can cause or exacerbate renal crisis.

     
    Old 07-11-2014, 07:11 AM   #8
    charlie276
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    Thanks again for everyone coming back to me. My thyroid doesnt swell as in i can visibly see it swell out of my neck like google pics, my throat lumps just feel and to me seem larger, so painful and tender and everytime i swallow i get pain, clicking, crunching etc. Sometimes I also get the typical sore throat pain when ur sick and are trying to swallow a golf ball and it really hurts, it will clear up overnight and reoccur a week or so later, i definitely prefer that to the usual throat pain i get.

    I did have thyroid antibody test done 2 years ago and it was negative. I looked at the letter the rheumy sent me again and he believes its "undifferentiated connective tissue disease". I will ask about the short steroid course and see if its something we could try although i still think id have trouble determining between a good few days and the meds making me better. I had 1 muscular steroid injection first time and the next day, 2nd day i felt no better but day 3 for a period i felt somewhat better. I thought steroids gave a pretty miraculous recovery in a short space of time so i never knew if it helped or not.

    Im really thankful for the eye/plaquenil comments. That eases my mind alot. I try to stay neutral when reading reviews about anything and take them all with the understanding things affect us differently but when you do read some things it is scary especially when i dont know exactly what im taking them for.

    I should mention that initially when i went to dr saying i didnt feel well and was tired constantly they did usual blood tests and i was low in folate, iron (anaemic) and vitamin D, i have corrected these levels now but ive read alot that low vit d can spark things or is an outcome of certain diseases. Just wondering if anyone else had low levels of these.

    Last edited by charlie276; 07-11-2014 at 07:15 AM.

     
    Old 07-11-2014, 09:58 AM   #9
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    Re: Advice

    Charlie, the thyroid antibodies could be repeated again, as they may have changed after 2 years. Undifferentiated connective tissue disease is actually a diagnosis that sometimes evolves in time to something more specific but not always. So the Placquenil treatment is for controlling the inflammation and symptoms from that, and is a very appropriate treatment. I hope it helps you. Steroids usually do cause a quick (1-3 days) response, but is dose dependent, so too low a dose may not produce dramatic results.

     
    Old 07-15-2014, 10:33 AM   #10
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    Re: Advice

    Thank you, I will request another test. it's just frustrating not having a named diagnosis. I'm trying to obtain life insurance and I have no idea what to tell them. I saw polymyalgia rheumatica on arthritis research website and that mentions a quick onset of symptoms especially neck and shoulders so I will ask about that. It does say that fingers aren't usually involved and my fingers do feel stiff and sore often although I see no visible swelling.

    I've read alot about people with autoimmune disease getting all the colds going but I never get sick, never, even with a 5 yr old who picks up all sorts from school. I feel like I could eat a Petri dish full of influenza and just sleep it off overnight. Although I feel ill most days I don't catch anything that anyone around me gets. Strangely last time I got ill was 2 days after my steroid injection and 2 days after starting plaquenil. I used to catch things but last few years I seem immune to everything, I actually don't mind catching a cold as my other symptoms seem to back off a bit.

     
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