Hi everyone! Hope this finds Y'all well and happy! I'm in Sjogrens flare up for over a month! I have appointment with Rheumatologist on March 12th! She specializes in Sjogrens so I'm looking forward to it! The only doctor able to help with it so far is the Dental Community! I've had a migraine for 10 days now with auras! My primary on vacation and no one seems to help! My Blood Pressure up! Wen pain gets bad my Pressure goes higher! Not sure if I should go To Emergency Room? I'm off balance, but that's probably the Sjogrens! I'm confused cuz of migraine! Take over the counter meds and they help a bit, but it never goes away! I'm thinking it has to do with Sjogrens Flarr up! Have APS and RA! Also have osteoporosis! At bone density test and Mamogram
Migraine for 10 Days: Hi everyone! Hope... - Hughes Syndrome A...
Migraine for 10 Days
You’ve been having ramping symptoms for a bit.
If you have done all the ,”home care” you know to do, or can do st this time with no sustainable relief, ( especially with increased bp) then you should seek medical help, deb.
You can second guess all day long- but that’s all it would be.
Don’t forget:
List of current meds- bring if you need
Over night little bag- in case they admit
Phone or i pad plus chargers!
Hi, If I were you, with rising B,P I think I would go and get help, you are clearly not very well, I hope your main Hughes Syndrome/APS consultant is back soon, and at least any doctor dealing with you over this time can contact them as well as yourself. Also if your balance is now being affected alongside your new blood pressure symptoms, please don't hang about, seek some help, and yes a good idea to bullet point your medical history, your symptoms and your medication and various doctors, it is easy to forget when you are ill. MaryF
Deb - as a x ambo I always advise any new symptom or more prolonged you must seek medical advice!
With your rising BP and prolonged migraine you already know this - you also know long wait at ER and they probably will not worry about you - BUT WE DO!!
IF only for reassurance and this has now gone on too long please seek professional help.
Ok have the Veterans Affairs here now installing shower bars and special toilet seat! They're also measuring for ramp so I can get him out easier! I called my Hemotologist and only nurse got on and gave me advice to take excedrin migraine! She never said anything to my APS Doc and she shud have! Ur right I do know I should seek medical advice, but what do I do with my two boys who are like 5 year olds? It's difficult cuz I no without me they have nobody! My sister Nanny 23 will come watch them! Thx for great advice
Feel better Debbie. Love ❤️ you
Sisterly love! So great!
My sister is going in for Sjögren’s check next week.
Hi there Debbie!
I am worried also about your high bloodpressure. That should be lowered. I have had very high bloodpressure but better with meds and higher INR around 4.
I wonder if the bloodpressure gets higher when we have too low INR (I have noticed that myself) as i am afraid you have now as you say you have got pain. Could be both RA and Sjögrens but we need proper anticoagulated blood with especially APS.
Please follow the good advice you have got above! I send you my GODSPEED!
Thank You all for great advice! Last night so bad I didn't serve dinner till 3am! Had bangers mushy peas, mashed spuds, and Bachelor Beans! One of my faves! I forced myself to eat cuz had to take meds! Kirstin I don't do INR anymore am on Lovenox Shots for past 2 years! On Warfarin I could never be controlled, was very irratic! I needed to be at 4 to feel good and doc was afraid, but gave in! Cud never get there or too hi! Been good with APS since Shots! I'm off balance so I think it all has to do with Sjogrens! I see new Rheumatologist that specializes in Sjogrens! They've moved me up to March 12th! Guess she's busy cuz none of my doctors know much about Sjogrens! I only get help from the Dental Community and My Eye Doctors!!! I can't wait to c this new doctor! She's female! May be good! Thx again for all ur answers and Kirsten I missed you and everyone
Deb,
With a very high INR, I was making dvt’s Every 10-12 weeks approx. the INR was set at 4.5. -5.0. I was having draws about twice a week. It was rare I dipped below 4.0. If I dip below 4.5 I clot quickly. My heme and Rheum are really not sure why- and are very aware it’s not following the typical pattern.
They are starting to think outside of the box since I’ve been tested and ruled out for all other clotting disorders. ( except homocysteinemia - but that’s not really a “ clotting disorder” per se, - it can just cause a few little problems- I’m on 1 mg methylated folic acid.)
My good cholesterols are great, but I do have moderated to high level L(a) ( p) “bad” cholesterol- so that’s another “hit” to be controlled, right? So I’m on pravastatin.
So we are looking at every little “additional hit” we can and minimizing or eliminating if possible .
Because I technically continue to fail warfarin therapy, and no one feels particularly comfortable with an INR of 5.0 ( which in actuality is often 5.5, 6.2, ...) - yet never a bleed but it’s not ideal best practice- yet neither is DVT’s forming at an average rate of ~10/12 weeks... my team opted for a non conventional trial. This began mid November 2018. ( the worst of it was during Thanksgiving- when I was traveling in the remote mountains out of state in New Mexico-and offices were closed... trying to be a trooper for my family... not so smart...)
High dose Apixiban with a fluctuating dose depending on APS symptoms. This only works on a subset of very specific APS patients- not all. They would have to be carefully vetted. I was on 10 mg twice daily plus statins and anti platelet therapy. I failed the therapy within ten days. I developed a DVT, had break through seizures and a probable TIA. Bowel ileus. ( for me that’s always vaso congestion / clotting.) I even went off the recommended dose prescribed and took 12.5, 15 mg until I could get to my Hematologist/ scan . The migraines were confirmed migraines- not a brain bleed. And DVT’s were confirmed. A final dose of 20mg was taken until I could switch to Lovenox. ( high intensity.)
The Lovenox was not as effective as warfarin, and after 7 days, I bridged back to warfarin, despite its flaws.
It was decided immediately that I needed Retuximab. The goal will be fewer clotting events. I’m hoping fewer migraines. We are all hoping for the ability to lower my INR.
I’ve never had a bleed- not even brushing my teeth. With dental cleanings , the comment is I bleed less than their standard patient.
The issue is it’s been consistently taking more and more warfarin to maintain my level of health , ( migraine control, and clotting control) and the INR has been needed to be raised in order to achieve this. The disease seems by all accounts to be escalating, as evidenced by clotting and other overall symptoms.
Can you speak to your Rheumatoligist about this? I think for some patients the Clexane ( Lovenox) is great! For others it may not be. I wonder if you are troughing too soon- it can be that you are running low closer to the 8 hour mark than the 12 hour mark, depending ofn the strength of your dose to body weight. Your Hematologist might have you dosed slightly conservatively- just to be on the side of caution. That might be all that is wrong. You need to ask.
It’s possible that if you are, “ on the line”, you could be bumped up on your dose and it could make all the difference .
As you know- we are all so very different. This is more of a Hematologist conversation, she will tell you. I would recommend Caroline Cromwell for Hematologist. ( NYC ). ( only if you are not feeling confident with your current Hematologist now.)
Thx smelly I'm so sorry for ur troubles! I have seen Caroline Cromwell and loved her! She was my 2nd opinion! I've had my Hemotologist for 15 years going every week at first for Polycythemia Vera (Have too much blood) to be Phlebotomized! They said I had blood like sludge! There were times they were in my vein and blood so thick they couldn't get vein to work all the time nurse knowing she's in my vein! When they finally took needle out it came out with a blood clot attached to it! She called over other nurses to c this! I clotted while inside! This shud have been a sigh of having APS I think! APS not diagnosed till after leg loss! I'm happy with current Hemotologist! He's kind and he listens to me cuz basically I tell him more than he knows about APS! He accepts that I know more than him! He even tried to keep me at 4 even tho he disagreed! I never bleed either! My blood very thick! I'm on 100 mg of Lovenox! I don't think that's a hi dosage! Maybe In the middle! I will call him Monday because I spoke to his office manager and she told me I'm probably in Sjogrens flare and shud continue the Excedrin Migraine! It's 11 days today! She has no right telling me what meds to take she should've cleared with doc and I should've demanded to speak with him because he knows Sjogrens goes with APS it's all a part of APS! What dosage were u on of Lovenox? I don't know what Tetuxamab is or y u take it! I also have RA! I'm just fed up with this migraine and have no one to help me take care of my boys! My hubby acts like 4-5 years old and my Mentally Challenged son is like a 6-7 yr old! He actually helps me with Stan! Keith is totally dependent on me tho! Bathroom stuff, bathing, cut his food and most all things, but he can walk and he's Company for me! He's my stepson age 62 with rare syndrome cald William Syndrone! He's a stand up commediene and I just adore him! I'm his lifeline! I just must need APS under control! Maybe that's y Sjogrens flare up? Do u think that cud happen? What r u on now! Seems ur back on Warfarin. I hope they can get u under control! I've not taken care of myself in past 2 years since my hubby dx'd with Bladder Cancer! His Alzheimer's progressed after chemotherapy and Radiation just like they said it would! I'm trying to get help! I'm getting some from VA cuz he was a veteran during Korean War! For some reason it's better if ur a Veteran during a war DK Y, but that's what they said! Thank you so much for your amazing response!!! U really filled me in with lots of things I didn't know! I know I must c a doc in Monday! My Blood Pressure still hi with bottom number being 100!!! Godspeed
Dear Debb,
Gotta love Autocorrect! No one in the home is giving me funny looks or backing away or complaining, so I think I’m ok! 😂😂😂
You are correct, I’m back on warfarin.
When I was on the Lovenox, it was dosed twice daily at 60mg am and 60 mg pm. It was dosed of course at 1 mg/ kg. I weigh 112 lbs- so I’d have to convert that.
It was not holding the full 12 hours- it was falling off around the 8-9 hour mark so we upped the dose to 70/70 - just for a couple of days- which is a little high. It did help- but I did not feel as well as I did when on warfarin. I had odd neurological symptoms that are very difficult to put into words.
Rituximab is a biologics- monoclonal mice antibodies meant to Target the antibodies themselves.
Since you have RA, your Rheumatoligist can run that through your ins and use that protocol and it would be covered.
It is considered experimental for APS.
You will have to find the home balance that will work for you. You might ask your doctor when you see her what she might suggest through MHMR regarding respite care for the awesome step son you have. There are programs for this.
Meant Kelly not Smelly omg sooooooo sorry Kelly in Texas
Hang on... can’t reply right now... busy purchasing a years worth of febreeze and deodorant on line... be right back...
Deb, if your normal dose is 100mg, you need to up it during a SS flare or if you have a virus etc.
I'm normally on 80mg, I increase to 100mg when Im feeling unwell. I also take daily aspirin & clopidogrel.
You do need help getting over this.
So glad you have some support at home, you certainly have your hands full - total respect girl!!
Sending you a big hug xx
Deb, This was the best laugh I have had in a long time 
Ya gotta love APS for what it does to our brains!
Omg I'm so glad I made people laugh! I call my friend and give her a laugh for the day! Since I only have one leg I always say, "I don't have a leg to stand on!" Everyone cracks up! I just feel that if we can't laugh, especially about our sicknesses, or anything, then we r up the creek without a paddle! I have a 3 year old cat that got an illness that usually only sheep get! My answer was Well he's in the right family!!! Lol... That's ur laugh for the day! I had two teeth pulled last Tuesday and one side of my face swelled a little bit! I looked 10 years younger on that side! The swelling filled in all the wrinkles by my mouth, eyes, just everywhere! I told my friend now I no why people get Botox!!! Lol... I wish u all the best and thank you for your awesome responses!
Preventative migraine drugs?
Hiya .Is anybody on amitriptyline for migraine. 
How long should it take for antibiotics to leave the system?
Very different form of migraine?
