View Full Version : Blood clotting - has anyone had or heard of this issue?
09-23-2012, 07:34 PM
I have Sjogrens syndrome and I am on steroids and plaquenil. The other day I cut myself quite badly and normally I am a bit of a 'bleeder' and normally bleed easily and a lot of if I am cut.
But on Saturday this cut I did to my foot was deep and to my surprise the blood that did come out clotted immediately as in straight away, I was expecting my usual bleeding out that happens but it clotted before it had even any chance to run down my foot.
Not that I am complaining just wondered if it was relevant to mention to my Rheumy next month or not and if any of you guys have had clotting issues?
Thanks in advance.
09-23-2012, 08:34 PM
Welcome back - haven't seen you here in a while.
Here is what jumped into my mind when I read this - antiphospholipid antibody syndrome
Several folks here have mentioned that they have this as a dx.
I think that you should mention it to your doc. I think that it has been mentioned that a low-dose aspirin a day is usually prescribed.
I've been taking that for years. My PCP at the time didn't mention this as a concern, but she did recommend the aspirin, so I think that she was thinking of this.
Don't start aspirin without checking with your doc first.
09-23-2012, 09:07 PM
Thanks for that, I will check it out.
It was the strangest thing I have ever seen for such a deep cut not to bleed like one would expect.
My rheumy appointment has been brought forward as I have been really sick, my salivary glands swelling up, bones really sore and now sores on the ends of my fingers keep cropping up and a scaly sort of dry rash under my chin - most odd what is happening to my skin.
This is the sickest I have felt since diagnosis - makes me want to cry, so frustrating and I have pins/needles tingling down my face - I had Bells Palsy a few years back, hope that isnt going to return.
Sorry for sounding fed up - its been a heavy bag to carry lately.
09-23-2012, 09:11 PM
I understand about feeling down - it's good to come here to vent.
I think I remember that you have a dx of Sjogren's, right? The swollen salivary glands are probably from SJS.
Be sure to tell your doc all of those symptoms and get pictures of the rash if you can.
09-23-2012, 09:24 PM
I had some fabulous rash photos after being exposed to flouro lights - he has those on my file and I am about to print off the swollen glands one and my swollen fingers after my GP attempted to reduce my 5mg of preds to every other day - I lasted 4 days. I never realised how much the preds were doing for me even at 5mg.
Yep, I have dx of sjogrens but doctor reckons my body is 'trying hard to be a lupus patient' which made me laugh a bit. Cant believe how ill I am feeling at the moment, my boss has given me my own office and turned off the flouro's for me but for most of the day I dream about sleeping/lying down. I love my job and also cant afford to go part time.
Oh well, we shall see what happens.
09-24-2012, 08:01 AM
I have Lupus, Sjogren's, Raynaud's, and APS - which is a reasonably common combination...I have had one small blood clot in my eye from the APS, but otherwise nothing serious (knock on wood!). My dad also has it and has not had serious issues. I take one REGULAR (not low-dose) aspirin every day as well as two fish oil capsules, under the advice of my doctor. if I have more clots we'll have to go to a low-dose thinner like Heparin, but hopefully the aspirin will do the trick. I have been on this regime for about a year.
If you DO have this combination of diseases, do be aware that it does seem to disproportionately predispose one to CNS symptoms, so keep an eye out for those. No guarantees, of course, one way or the other - but it generally means your vascular system is kinda vulnerable, so you'll want to keep an especially close eye out for CNS symptoms related to any of the diseases.
Right now I am happy to report that my Rheum seems to have found a great combination of drugs and helped me uncover some food sensitivities, so with the treatment and new dietary guidelines, I am feeling better than I have in many years. The testing and diagnosis can be miserable, but hopefully that information will help your doc craft appropriate and helpful treatment.
Best of luck to you....we're here to listen and help!
10-03-2012, 06:34 AM
Saw the Rheumy tonight, he is starting me on MTX, then a blood test in a month, I am booked for a lip biopsy which worries me - but he said that if it doesnt show up positive, he will keep me on the Plaquenil but would not want me on the heavy duty stuff like MTX without a positive result. I am scared it will be negative but I can see why it needs to be done.
So Friday will be my first day of MTX, oh I forgot to tell him about the blood clotting thing.
10-06-2012, 10:46 PM
I've had a lip biopsy, and it wasn't bad at all. Some people on the SJS site have had bad experiences, but it was really not bad for me.
It seems to be important to make sure that the doc who does it is experienced at doing them and that the lab is familiar with them too.
Teaching hospitals are best, but some have had good luck with local docs.