View Full Version : Help! I'm scared and have questions!
09-02-2006, 11:27 AM
Hi all! I'm scared to go to my Immunologist and talk to him about some things that have happened here in the last few weeks. I have had a few flat purplish-red lesions pop up on my abdomen. One of them hurts when I touch it. Also my flare just keeps getting worse and I'm at my wits end on what to do next. I don't know why I'm scared my doc is wonderful but I think its just fear of the unknown. Does anyone have patches where the skin is extremely tight? It is on both of my feet and now I have patches on my hands coming up. I'm just really scared that i'm slipping back to where i was a few months ago when i could barely move. My labs are all heading the same way they were with my D-dimer now reaching 10,000 again and normal is 100. If anyone has anything to offer to get me through the long weekend I would definately appreciate it.
09-02-2006, 11:42 AM
:? I don't know if I had what you have, but, I had reddish-dark purplish rashes that developed all over my body. It first appeared on my stomach, arms, back, and when it spread to my legs--it was BAD. I wore sweatpants and stayed home during that time because it was horrible to look at. Even my rheumatologist was shocked to see it. I found out that the horrible rash was due to a very bad allergic reaction to one of my meds (plaquenil). As soon as I stopped it, and upped my dose of prednisone, the rash went away. :) Thank goodness. It was SO ITCHY (like chickenpox), it kept me up at night. I covered myself with lots of calamine lotion and took benadryl.
09-02-2006, 01:59 PM
You mentioned your d-dimer is high, but have you had blood clots, or is yout d-dimer level high because you have RA or liver disease? if you are taking blood thinners, you can have bleeding under the skin that causes blotches that are really painful to the touch. They aren't generally itchy, just really sore. So if your blotches are itchy, it might be an allergic reaction or something else. If these patches start to spread or hurt worse, you need to see your doctor - this could be the start of something like vasculitis that needs to be treated pronto.
If you have RA, it can cause patches or skin tightening near your joints. Alomg with lupus, I have a form of scleroderma that causes small areas of my skin to tighten - these areas of skin are stretched and shiny and look kind of like healed burn scars.
I know it's scary when something new goes wrong, and you dread going to the doctor about it because you're afraid it's some new horrible thing happening to your body. But it's important for you as a patient to take charge of your own life. When you let that fear control you, the fear wins. The best cure for that fear is information - so talk to your doctor, please. unfortunately with lupus, waiting to see if something goes away on its own usually isn't a good idea.
09-02-2006, 03:22 PM
I have never actually had blood clots or been diagnosed with RA or liver disease. They have checked my heart, my nitric oxide levels and anything that could normally cause it to be elevated. No one knows they said their best guess is that maybe I'm constantly forming and breaking down millions of tiny clots. But when I was feeling better before the flare the d-dimer had gotten down to almost 5000. As far as the lesions go they don't itch most of them are painless but one kind of burns like an ulcer when i rub it. I do have lupus vasculitis as well it has caused me to have splinter hemorrhages, and peticiae (spl?) all over my legs and arms. My doctor said that they aren't sure if the D-dimer will suddenly cause a blood clot to appear somewhere in my body. Which is kind of scary walking around day to day not knowing if one will form. I do plan on calling my doc on Tuesday and trying to get in as soon as possible. Does anyone think i should see a dermatologist about the skin tightening patches or will my doc know what to do?
09-02-2006, 03:48 PM
I WOULD CHECK WITH HIM FIRST. Then he could refer you to a dermatologist if he thinks it is something unrelated to your lupus.
Since vasculitis can cause ulcers as well as purpura, you should definitely let your doc know about the lesions you have.
My d-dimer stays pretty high because I have antiphospholipid antibodies and I've had several clots. Some very superficial but some very serious, including a PE and a couple of small strokes. I've also had a couple of bouts with vasculitis. My rheumie didn't feel comfortable managing the blood-clotting issues, so he referred me to a hematologist (doctors who specialize in blood disorders). If you haven't already seen one, it might be a good next step for you in finding some answers.
I know it's a long way till Tuesday, but hang in there, and if things get worse, go to the ER - dob't sit home and suffer!
09-02-2006, 07:30 PM
I guess you can tell I'm still new to figuring all this lupus stuff out. It never even crossed my mine that the D-dimer could be coming from my Antiphospholipid being positive. My docs get so caught up dealing with my genetic disorder a lot of times they attribute things like the D-dimer to it rather than the lupus. Do you mind if I ask you what treatment you have been on for yours and how high has it gone? When I nearly died back in February mine was past the computer limits that it could read which they said was greater than 10,000. I'm definately going to call my immunologist on Tuesday and try to get in to see him quickly.
09-03-2006, 08:12 AM
A couple of times mine has gone of the charts like that; the docs weren't sure how high it actually was because the machine stopped counting. The hematologist tested me for all the blood-clotting disorders, protein factor deficiencies, etc.
my C3 and C4 complements levels were practically non-existent, and I had a couple of minor factor deficiences, but he concluded the main problem was that that I had a "hypercoaguability syndrome" due to antiphospholipid antibodies and lupus anticoagulant. Or as the doctor so poetically put it, you don't have blood, you have sludge.
Becuase I have had clots, I do have to take blood thinners and a drug called Plavix that keeps your platelets from sticking together. I take a medicine called trental which is supposed to dilate your blood vessels so blood gets through more easily. I also take prednisone and IV cytoxan for the lupus. A couple of times when my d-dimer has been extremely high, they have done a procedure called plasmaphoresis, where they actually take your blood out, wash it through a machine, and put it back in. Not all at once obviously - it takes about six hours and removes all the fibrogen residue, antibodies, etc.from your blood. They also administer a drug called IVIG during the procedure. This procedure is very expensive, so I had to get pre-approval from my insurance company, but it was very effective for me. Unfortunately the effect only lasts a few months so it isn't permanent.
After the procedure I noticed a big improvement in my energy levels and my ability to concentrate - the doctor said it was because my blood was finally able to circulate freely, so I was getting more oxygen. It also improved my blood gas tests - my oxygen saturation levels went up.
Everyone'a condition is different, so something that worked for me might not be right for you. But if you haven't seen a hematologist, I would definitely recommend it - also a rheumatologist for your lupus.
If your doctor hasn't already told you, you need to be careful about anything that increases your risk of a blood clot. Sitting in one place for a long time with your feet down - like a long plane or car trip - is a big risk factor for DVT, so you need move around often. Same thing at home or the office, try to put your feet up when you can, and get up and walk around at least once an hour. And avoid being around smokers if you can - even second-hand smoke contains chemicals that can constrict your blood vessels, which is the last thing you want to have happen. You also want to be careful about medicines for headache like Imitrex - they can be dangerous for people with blood-clotting or blood-vessel disorders, so you want to make sure all your doctors are aware of your medical condition.
It's also a good idea to get all your prescription and non-prescription medicines at the same place, and let your pharmacist know about your medical condition. Pharmacists actually get far more training in drug pharmacology and interactions than doctors do, so a good pharmacist can help you check out possible drug interactions with OTC meds and even foods, and red-flag drugs you need to avoid.
If possible, you want to avoid vitamin supplements and foods with a high vitamin K content, because Vitamin K promotes blood clotting. You can find lists of these food on the internet, or your pharmacist will probably have one. you don't have to stop eating them altogether, just watch your intake. Some kid's cereals have a lot of vitamin k, so does green tea, spinach, and other green leafy vegetables. So if you hate spinach or brussell sprouts, now you have a good reason to avoid them.
Hope this helps. I think doctors get so used to thinking of us as patients rather than people that they forget we have lives outside their offices, and don't pass along the practical information we need to know.
09-03-2006, 09:32 AM
Thank you so much! I'm going to talk to my immunologist about all of this. He has actually started me on at home treatments of IVIG (called Vivaglobin) I give myself once a week. I just started this past week so its too soon to tell but supposedly it works better because the medicine stays at a constant level in your blood stream. I don't know with you but the higher my D-dimer goes the worse my fatigue gets. Your the first person I have ever talked to who has had their's go off the charts too--its sad that you too have to deal with it but its nice to know i'm not the only one out there. So, far they have yet to actually treat my d-dimer it had gone down from the prednisone I was taking for the lupus but it never actually got anywhere near normal. Now even though I'm still on the prednisone it has started rising fast again and so my flare has continued to get worse. All I can say is Thank You soooo much for telling me about your case! I will definately keep everything you said in mind.
09-03-2006, 10:17 AM
I know what you mean about the fatigue - my doctor actually gave ne a pretty good explanation for that - he said as your blood gets thicker with the fibrogen, clot residue and stuff, your heart has to work harder and harder to push it through your body, so you feel tired constantly. plus all that gunk in your blood displaces the oxygen your cells need, So your body doesn't get all the oxygen it needs to function, so you may also get out of breath easily. For me it feels like trying to run up a hill with cement dragging you down - that's the only description I've ever been able to come up with.
09-03-2006, 09:07 PM
Hi. I just wanted to jump in and give you a link to a website I found where you can also check drug interactions yourself. It also will search for food and OTC interactions too.
It is cool to check out. I have found it helpful with my prescriptions and cold meds. You never get sick when the pharmacy is open. :lol:
09-04-2006, 04:50 PM
That is a very cool site. Thanks for posting the link. It makes it easy to check everything you take and all intereactions.
09-05-2006, 04:44 AM
I bet... those purplish welts are stretch marks. I know they look uber huge and garish but thats what happened to me. The pain comes from skin stretching too quickly over a short period of time. Don't be afraid the pain will go away but it can take like a year for the marks to start to fade.
That's how long its taken mine which were an angry red purple but are now fading to light purple and white. The were huge like 4-10 inches and made my abdomen look like a zebra. It freaked me out too. Also on my feet/ankles and calves and thighs I got smaller snakey light purple marks. The make the skin look distorted. One of the things that can help them go away quicker is vitamin e oil and lotion.
Mine were caused by edema, that's water retention caused by the kidneys not retaining protein which controls the water retention in your body. Do you have any bloating/swelling? Rapid weight gain over a short period of time? With me I gained 60 lbs in 3 weeks no joke. Thats why my skin stretched. I thought I'd channelled the spirit of the state puff marshmellow man although my family called me michelan man. I was horrified. With water pills, dietary changes, and some remission the marks stopped hurting and became soft distorted patches of flesh which in time started to fade. I've had flares but no new marks since that happened a year and a half ago. Oh also prednisone can cause these kind of marks too and at the time I was on 60 mg. That's alot! It's not an allergic reaction, just an unpleasant side effect.
When you see your specialist ask him if its a rash or strange stretch marks. Does it seem a rash or marks to you? Cause like I said vitamin e oil and lotion help loads. I didn't use them and my marks started to fade in a year. If I had used them earlier they prolly would have faded in 6 months or less.
Good luck! Hope this helped... :D
09-05-2006, 08:07 AM
Thanks everyone for your help! Unfortunately I called my doc this morning and his nurse informed me that "it was a specialty clinic and they don't accept walk-ins or work-ins". But still she worked me in for next Wednesday. I guess I need to look for a Rheumatologist I can see when things go wrong and to keep check of my lupus. Does anyone know a good one in Birmingham, AL? I have been looking at the UAB website and they have 3 docs that specialize in Lupus I just don't know anything about them. As far as my purple lesions its more likely that now that my d-dimer is at 10,000 some of my veins my be swelling up under the skin. Really they are only a tiny percent of why I feel like I need to see my doc soon. But I haven't gained any weight or had bloating that would cause these to be stretch marks. They appeared right after my flare began over a month ago. As long as my d-dimer continues to run extremely high the more I feel like I'm running up hill in one of those heavy x-ray vests. This flare is continuing to get worse and I'm getting very discouraged that its not going to end.
09-05-2006, 09:28 AM
I know several of the women here have been to UAB and it seemed like a lot of them had a negative experience - mine at the Kirkland Clinic certaintly wasn't very helpful. It's been such a long time since I was in Huntsville, I can't remember which other towns are close to you - usually when I go to Birmingham I'm coming from Chattanooga.
If you go to the American College of Rheumatology Website at www.rheumatology.org - their "find a rheumatologist" search lists 6 rheumatologists in Huntsville - along with contact information and a brief description of their practice. They also show some in Gasden and other parts of North Alabama, so you might be able find one closer than Birmingham. My niece lives in Huntsville but I'm not sure which doctor she goes to.
If you do a website search on this website for UAB or Birmingham you can probably find the earlier posts about people's experiences at uAB or Kirkland.
09-05-2006, 11:23 AM
Thanks! Actually I live in Huntsville myself and have had a terrible experience with a Rheumatologist here. Before I was finally diagnosed with Lupus by another doctor the Rheumy in Huntsville said that perhaps all this was in my head and that I shouldn't bother seeing someone until I have real symptoms. 2 months after that I was in the hospital for 2 weeks and nearly died so I guess he was wrong. My problem with finding a doctor is that I have an Extremely Rare genetic condition that scares most doctors off so I have to stay in a university medical system. I just don't know what to do anymore--after fighting to get a diagnosis and seeing a million doctors now I'm out looking for a new one again. But I need a doctor who can see me when problems arise not work me in a month later. If anyone has any recommendations even if its out of state I'm willing to listen and luckily my insurance would cover it.
09-05-2006, 12:26 PM
If you have any friends who are nurses, ask them who they would go to - nurses generally have the best scoop on doctors and know which ones to avoid.
You might also ask your genetics specialist for a recommendation or referral - he would probably know the doctors most likely to be knowledgeable of your condition.
In addition to UAB, you might also consider Vanderbilt University Medical Center in Nashville TN. They have a number of speciality outpatient clinics including a genetics clinic, and the drive shouldn't be much longer than Birmingham. Although Chattanooga is a lot further away, Erlanger has a good reputation as a teaching hospital because it's associated with the UT School of Medicine.