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Posts posted by Teatime

  1. Thank you, Jo and Judy! Today has been better, thankfully. I'll admit to maxing on the meds, using the reserves in my bag of tricks. I have found a supplement to sooth my GI tract when things are bad and I take it with my doctor's full knowledge and blessing. He also gave me promethegan (promethazine rectal) suppositories to use at times like these and I have made use of them.


    This morning, I was even having problems with liquids. I was having the esophageal spasms and saliva and the liquids coming up a bit. I kept drinking, though, slowly and worked through it. I had to -- even with air conditioning, you have to keep hydrated in 105-degree heat. The meds obviously helped a lot, too.


    I did manage some yogurt and ice cream. I love milk shakes, Judy, and I have turned to shakes and smoothies on many occasions!


    I'm afraid my gastroenterologist is going to want to do some more tests. I've had a regular endoscopy, a capsule endoscopy, and an esophageal dilation in the past 18 months. In the past two years, I've had five surgeries. I need a break from all of this. I'm booked to fly to London next month to visit my good friends in Surrey and I don't want anything to spoil it!



  2. I'm afraid elements of this post may be a bit gross so my apologies ahead of time!


    I had an alarming episode today and was wondering if anyone else has had something similar happen and, if so, what one can do! At this point, I'm afraid to eat anything that isn't really soft!


    It's been horrifically hot in my part of Texas -- we've been at 106 degrees for several days now. I've been keeping my food intake light so I was eating a small salad and a piece of cold chicken for supper. All of a sudden, the food I had swallowed wouldn't go down. I've had many attacks like this before and know to just keep calm, relax, breathe deeply and slowly and, eventually, the food will go down, even if it does hurt.


    This time, however, the esophageal spasms were weak and seemed to be sending the food up, not down. Saliva started coming up and then a little bit of food. About 3 minutes of this went by and then all of the food I had eaten suddenly came up. It wasn't like vomiting, though. There weren't terrible stomach contractions or stomach acid or any digested food. It was just the food I had recently chewed and swallowed, as if it was trapped in my esophagus and maybe the very top of my stomach. And while this was going on, I lost bladder control, too. :(


    Needless to say, this was a rather scary experience. I didn't know what to do during or after. My gastroenterologist gave me a medication called Hyomax (hyoscyamine) to take when I'm having an attack but by the time I located the container, the food was coming up and I really couldn't take a pill. This attack happened 5 hours ago and my esophagus still hurts and I feel sore. I want to eat but I don't know what my system will handle.


    Luckily, I already had a scheduled visit with my gastroenterologist set for Monday so I just have to get through the weekend. Any suggestions, though?




  3. Hi Proudtabby!

    I'm fairly new to all of this and don't have much of anything substantive to add to the good responses you've already received. I don't know if I missed this but are you in the US or UK (or another country)?


    I'm in the US and I know exactly what you mean about feeling dismissed. I was lucky to have a good rheumatologist where I used to live but since I've moved to a different city, it's been ridiculously difficult to get good care. In the beginning, my rheumatologist diagnosed me with Lupus and left open the possibility of mixed connective tissue disease because the sclero. test SCL-70 was repeatedly positive. I had no real sclero symptoms except Raynaud's.


    Since I moved away, though, I've developed worsening GERD and esophageal problems plus swollen hands and tightening skin. I'm blessed with a good internist who says she thinks I have MCTD over Lupus and my gastroenterologist has told me my GI problems are autoimmune and point to sclero.


    I'm waiting to see a new rheumatologist who just moved into town but I have that new doctor dread and fear being dismissed. It's happened time and time again. The last joker said he just wasn't seeing anything and decided I needed to go off all of the meds my first rheumatologist. put me on so he could "see what happens." Needless to say, I got extremely ill and wound up in the ER. I absolutely hate having to start over with new doctors and I wish the majority of them were competent and compassionate. Unfortunately, I've come to believe that isn't the case.


    I hope you get answers and good care!



  4. Hi,

    I was tested 6 years ago for SCL-70 and tested positive. The test was repeated and it was positive again, same exact result. I haven't had the test done since then. I don't think my doctors felt it was worth repeating the test over and over.


    I've been taking Plaquenil for about six years. It takes awhile for it to start working -- up to 3 months, if I'm remembering correctly. It's funny, because I don't think about it doing much but when I've had to go off it for surgery, my skin and nails turned awful. My skin swelled and was very fragile and my nails split and broke. I was glad to resume it.


    Congrats on your baby! If you take Plaquenil, I hope it helps you.



  5. Thank you, Jo and Shelley!


    I've got some doctor appointments coming up. I'm planning a trip to England to visit dear friends in September. I'll be there for a month so my doctors all want to see me and run tests before I go. We want to get things stabilized as much as possible before my trip.


    I just picked up some tea tree and shea butter lotion at an organic products store where I shop. I hope it helps my hands and skin!


    All best,


  6. It sounds to me like it could possibly be sciatica, and a vertebra-nerve problem. I know it sounds odd but I know a couple of people who have had slipped/herniated disks in the low back because of a bad cough. I would go to an internist and discuss having a neurologist take a look. Sometimes physical therapy does the trick and sometimes you need surgery. The sooner you address it, the more likely it will heal well.


    I have degenerative disk issues so I've had a lot of experience with the type of symptoms you're describing. I've had 3 back surgeries, all successful. I just had my third six weeks ago and am recuperating nicely. Here's the thing -- since we have some serious autoimmune diseases, the tendency is to look immediately in that direction when pain starts. I'm happy that I have a really good, caring internist who says, yep, you have serious, incurable diseases but we need to look beyond those at other possibilities, too. There can be common problems that can actually be FIXED!


    Sure, you might have some of the other diseases and problems you mentioned but I'd perhaps consider sciatica first. If you catch it early, conservative, non-surgical measures might put it right! Good luck!

  7. I just found y'all and then I disappeared! So sorry! I had spine surgery 6 weeks ago and while I was in hospital, my son was using my laptop and lost a bunch of my links, sigh. Computer and spine are mostly better now with just some smallish after-effects!


    The good news is that the spine surgery took care of my problematic groin pain that my other doctors thought was coming from the hip. I have a benign tumor and labral tear in one of my hips we thought would have to be operated on in Dallas. Now that I know it's not the cause of that pain, I don't see any need to do yet another surgery. So yay for that improvement!


    But the spine surgery stirred up my autoimmune baddies and we're trying to sort out what is post op. stuff and what is autoimmune. My hands are just a mess. The skin on my fingers is splitting and cracking, I have red spots and dry, thickened patches spreading, and my nails are always lined and broken. Are there any creams I can easily buy that help or do I need to see a dermatologist? The rheumatologist hasn't arrived here yet.


    Also, do any of y'all have bad nerve pain in your feet/toes and hands/fingers? My feet/toes are the worst. My surgeon today said that some of the nerve pain in my feet could be from the surgery and it will resolve on its own as the healing progresses. However, since I also have the pain in my hands, he thinks at least part of the pain in my feet is autoimmune.


    The tops of my feet right before the first toe joints are so, so painful -- it hurts to the touch and shoots into my toes, and vice-versa. Wearing shoes is very uncomfortable -- I'm wearing just the softest slippers or going barefoot around the house. I have a call into my internist but any suggestions in the meantime?


    Thanks so much!




  8. Definitely get to a doctor. I had something similar several months ago (I have Crohn's Disease and sclero GI involvement) and went to the ER. They ended up giving me a laxative BUT they also discovered that a lot of other things were going on. I had blood and protein in my urine, my liver enzymes were elevated, and my inflammatory markers were high. They put me on other meds, including prednisone. The safest and best answer is to seek medical advice ASAP, and I'm one of those who gets so tired of going to medical appointments that I try to fix things myself first, :lol: Not in this case. Good luck!

  9. Yes, indeed, it bears a thorough investigation and careful watching!


    In my opinion, a really super diagnostic tool is the capsule endoscopy, if it is available to you. The traditional endoscopy, colonoscopy, and sigmoidoscopy don't see every bit of the GI tract but the capsule takes pictures of everything! It's a tiny camera/transmitter inside of a capsule that you swallow. You wear a fanny pack with a recorder inside to which the capsule transmits images as it goes through your GI tract. The clarity is phenomenal!


    I was amazed when I saw the pictures that the capsule took, showing both vasculitis and Crohn's lesions in my small intestine! It was in an area at the end of the stomach and the beginning of the small intestine that is unreachable by the traditional scopes. Immediately, we had some answers! The only downside is that the capsule can't remove polyps or take biopsies, obviously. But it can pinpoint where the problems are, which reduces or eliminates the number of other tests done. It is SO much easier to tolerate, too, of course. No nasty prep the night before and no visit to a hospital or out-patient center. The capsule transmitter is disposable, you just flush it away.


    So much can go wrong in the gut that pain and symptoms really need to be addressed!

  10. Amanda,

    I don't know what your process is like in the UK but here it is notoriously difficult to get disability upon application. Nearly 70 percent of the applications are denied and it can literally take years to go through the appeals process. At that point, people need to hire disability lawyers and it becomes Dickensian, a la Bleak House (Jarndyce and Jarndyce).


    I was unable to do the application on my own so I called Social Security and set up an appointment for them to fill it out. (It even took that seasoned professional almost 4 hours with all of the names, addresses, medical codes, etc. programmed into her computer, and I had about 25 percent completed!) I was in agony by the time I left and, while there, I had to take my meds and pain pills just to be able to sit. It was difficult but that was the BEST thing that could have happened. The Social Security employee saw first hand what I experience and I was approved in less than 3 months.


    So just maybe a face-to-face requirement isn't such a bad thing? Seeing and talking with someone reveals a whole lot that a bunch of paperwork may not. AND it turned out that I was misreading some of the questions and wouldn't have included some really pertinent information. I was so grateful for the interview and assistance. I hope that the changes actually work to the benefit of the disabled in the UK!



  11. Congratulations! That's such a relief, isn't it? Back in February I got the short form that I filled out and returned, and a few weeks ago, I got a letter from SSA saying they don't need to do a review. Having to deal with the government is nerve-racking!


    I find it all to be bittersweet. I'm classified as having very little hope of improvement and I'm so very grateful for the program and benefits but I'm also sad that I am so ill and unable to work.

  12. We don't currently have a rheumatologist in my city/area. We did have one but he was awful and he moved away last summer, mostly because I think people stopped going to him. I'm not able to see rheumatologists in Dallas-Ft. Worth because of insurance constraints. We're supposed to get a rheumatologist here in July. I just hope she's a good one! The hospital has been recruiting and interviewing for several months.

  13. judy,

    I understand the bowel issues, as well, because I also have Crohn's Disease on top of this. It's a huge pain, isn't it? I'm sorry you're dealing with it all, too. I would love to consult with a dietitian and put together a beneficial diet. I have so many food restrictions right now, though, with the Crohn's and because I'm taking warfarin that it's implausible. Everything that is healthy and lovely apparently thickens my blood! lol


    I am hope, hope, hoping that when I see my cardiologist in a few weeks, he'll tell me that the heart monitor and test results looked great and I can go off the warfarin for a while! I had a cardio ablation done in February due to really bad and nearly constant atrial fibrillation. My heart seems lots better so I'm keeping my fingers crossed, even though my cardiologist said I'll likely need to have the ablation done again in a couple of years. Pessimist! :P


    Gastro-doc says I must wait 4 hours after eating to sleep. That means I either don't have a snack at night or I stay up past midnight. Unfortunately, the latter seems to be the most prevalent response, hahahahaha.



    I'm so sorry you're going in this direction, too! I hope you can get it controlled very soon! I can deal with just about anything with my chin up -- except vomiting. Especially this kind of vomiting because it strikes unpredictably and there's no rhyme or reason to it and no way of stopping it. I will feel bloated and horrible, my abdomen will enlarge, it will be difficult to breathe, and I will likely begin vomiting violently in the wee hours of the morning. It's so violent that my throat/esophagus and nose will bleed.


    It doesn't matter what I ate and sometimes it happens when I've eaten nothing at all and I'll vomit horrible bitter stuff or food that was just apparently sitting there. I've never experienced anything like this until the past two years or so and I've never met anyone else who has dealt with it. My gastro-doc says it's because of the sclero. I wouldn't wish this on my worst enemy, if I had any, lol!


    I don't know how other doctors proceed, obviously, but my gastro-doc did a capsule endoscopy when he wanted to see what was going on everywhere as gently as possible. That thing is magic! There's no prep involved except stopping eating the night before and you just swallow a capsule that has a camera in side of it. The cheeky little thing takes pics of your insides all of the way down until it is naturally eliminated and flushed down the toilet. SO easy and it films areas that conventional scopes can't reach. That's how he saw the vasculitis and other blood vessel problems and damage in my small intestine and elsewhere! It can't biopsy or treat, though.


    The baclofen has improved my esophageal spasms a whole lot! It was to the point where eating was such a painful exercise that I didn't want to do it, and the fear/stress made matters worse, of course. Now, I'm doing rather well with it unless I'm in a systemic flare, as I am now.


    All best,




  14. I had an appointment with my gastroenterologist Thursday. It was the first time I've seen him since my endoscopy and esophageal dilation several months ago. When I've had bad attacks, his office got me in ASAP but I had to see the physician's assistant. She is very good and competent but it was time for my doctor to review everything.


    Anyhoo, for the past 8 months or so, I've been having a lot of difficulty swallowing and more problems with GERD, plus random stomach inflammation and vomiting. The dilation helped a tiny bit but the problems have continued.


    I asked him how much of this was autoimmune and he said all of it, that my immune system is focusing on my GI tract and he can see problems associated with blood vessel inflammation and damage, in particular. I told him that my internist has been wondering if the Crohn's Disease or possibly scleroderma is causing a lot of my systemic problems and he said that, yes, the manifestations in my esophagus and stomach look to be a result of scleroderma.


    The physician's assistant had put me on an anti-spasmodic for my esophagus called baclofen that's been helping and he increased the dosage. I have hyomax that dissolves under my tongue and works instantly when bad spasms hit suddenly. He also increased the dosage of my prilosec (omeprazole) and gave me promethazine HCL suppositories for when the vomiting attacks hit.


    We still don't have a rheumatologist in town but I'm glad to be getting some help with this aspect, anyway. My doctor is from India and goes back to visit family for several weeks every summer. He wanted to see me now, right before he left, and I have an appointment to see him again in a few months when he returns. He said to be sure to call the office if I have attacks while he's gone.


    Is there anything y'all or your doctors do to control your GI symptoms that I can ask about?

  15. Thanks, all! Unfortunately, the rheumatologists around here are all about the labs. If something doesn't fit a specific lab profile, it doesn't exist. Perhaps even worse is that they won't even do extensive labs -- they base everything on the ANA and double-strand DNA. My nails and fingers are in terrible shape but no one has done the nail capillary test; they don't even do a physical examination. It's just ask questions and run basic labs.


    The reason I asked about my positive SCL-70 results and whether that changes is that I doubt a rheumatologist here will run it again. At that time, my ANA was positive and now it's negative. Since I've shown a negative ANA, they won't delve any deeper. My internist told me Thursday that she finds it utterly ridiculous that they won't do anything and will even deny disease when I've been on powerful immuno-suppressants for more than 6 years and my history and previous labs show, in her opinion, mixed connective tissue disease at the very least.


    On Monday, I'm having a radiology guided injection into my hip. I'm not sure this is going to help much because I've got terrible pain in both hips from, IMO, the sacroiliitis I was diagnosed with several years ago. But an MRI showed a labral tear and subsequent cyst formation in my right hip so that's what they're acting on. In the past two years, I have had 3 orthopedic surgeries and 2 procedures. I've also had one lengthy heart procedure to try to stop my serious and nearly constant arrhythmia and two GI procedures, as well.


    :lol: Sorry for sounding cynical and upset. This past week, I've once again had two doctors keen to operate on my back and joints. I also found out this week that my insurance won't pay for me to see a really experienced rheumatologist in Dallas. We're getting a new rheumatologist here in July and I have to wait to see her -- and hope she's thorough and competent!

  16. I was wondering about how indicative this test is? Several years ago, my first rheumatologist ran this test and it came back positive. He decided to repeat it to see if it was a fluke and it came back positive again. I was concerned but he told me not to worry unless/until I had more definitive manifestations of sclero. Well, now I do, but I moved far away and have been without a good rheumatologist!


    BUT, I found out today that we're getting a new rheumatologist in my city! She will be starting July 16 and will be in the same physicians' group as my excellent internist! My internist has been gathering data for a rheumatologist to see and, hopefully, it will aid in my care. Does SCL-70 positivity change over time? Should I talk to my internist about running it again?

  17. Hi- My rheumatologist is recommending IV Rituxan if my 3 gram Cellcept is not working - I relapsed after 12 years. I wonder if anyone has been successful in getting their insurance to pay for this - and what data you have given them, as I just got notified my insurance will not pay. Somebody at the office does the authorizations, but I wonder if my sending in recent academic research articles on successful Rituxan trials might be of benefit.


    I think it really depends on how the insurance company classifies it. They seem to have leeway in the classification (or tiers) of drugs and treatments. Before Cellcept became available as a generic, I had my copays change based on the tier of drugs my insurer used to classify it. All of them have required prior authorization for Cellcept.


    But if your insurer classifies it as "experimental," then you'll have a really difficult time. Is Rituxan an approved treatment for sclero? I know people who have taken it for RA and the insurance co. has paid for it.

  18. I'm not sure I understand what you mean by splitting. Is the skin splitting from your nails? I'm having a problem with my nails cracking, changing colors and the skin around them becoming irritated and painful. I get a lot of sores on my fingers, too, and don't recall injuring them. Is that the sort of thing you mean?


    Regardless, I hope you find some solutions and the problem eases up!

  19. Great video, Amanda! Well done!


    Interesting info. The atrial fib. started up out of the blue. I'd been dealing with premature ventricular contractions (a LOT of them) and episodes of bradycardia so I was being watched by a cardiologist already. But the atrial fib. came on all of a sudden and with a vengeance.


    At Baylor heart and vascular hospital, they "mapped" my heart using probes to induce atrial fib. so they could discover which parts of my heart were causing the misfiring. And then they destroyed those parts with freezing cold. They hope the bits won't heal as they were or form new connections that will cause the arrhythmia again. But my doctors told me to expect that I may need to have the procedure done again, possibly several times. I hope not!

  20. Thank you, Jo! It will be interesting to get the results next month from my cardiologist.


    When my internist initially put me on the heart monitor late last year when I had a bad episode, I didn't think it would show anything because I didn't feel any bad attacks. However, when she got the results, they were horrible and she called my cardiologist immediately. I was in atrial fibrillation all night long. No wonder I was waking up tired in the morning!


    There have been studies showing that folks with Lupus and RA are much more likely to have atrial fibrillation. I wonder if that's the case with sclero, too?

  21. I'm about 9 weeks post operation from my cardiac cryoablation and tomorrow I'm having my first EKG and a 24-hour heart monitor attached to see how my heart rhythm is doing! At my first followup appointment, my cardiologist said my heartbeat sounded much smoother and more regular. I hope the monitor shows very few, if any, episodes of atrial fibrillation.


    Prior to the procedure, the monitor showed that I had 17 bad episodes in a 24-hour period! I was at a huge risk of stroke so they put me on blood thinners and sent me to Baylor's heart hospital in Dallas. (WONDERFUL place! My doctor there was awesome!) I'm hoping it's much improved and I can cease the blood thinners soon! My cardiologist here warned me that I may need to have the procedure done again but I'm just glad to be feeling better now. All of that arrhythmia was SCARY!

  22. I was taking methotrexate for a while when I first got sick. It did help the joint pain some but it really aggravated my GI tract. I was throwing up a lot and a gastroenterologist did an endoscopy. He said my stomach was extremely red and irritated and recommennded that I stop taking mtx. My rheumatologist at that time agreed so I stopped it. It did help. LOL, I have enough GI problems and don't need a medication making them worse!


    I guess you and your doctor have to weight the benefits and problems. One thing I do remember is that it took the MTX a while to kick in and start helping. So maybe it will help you more after you take it longer?