Any other hope for relief?

I've had APS for over 8 years now. Aside of at least 5 episodes of DVT's / PE's, I've also had a stroke too. I've been at my prescribed INR level of 3.0-4.0 each time they happened. The stroke occurred when I was switched to Xarelto. I wouldn't recommend that to anyone after that happened.

But outside of the chronic blood clots, etc., my worst symptom of the APS is the 24/7 headaches. Sometimes they get so bad I take several Tylenol so I can just go to sleep, sometimes for 12-14 hours at a time. I miss a lot of work due to the headaches, I don't feel like doing the activities I normally do, I find myself in a dark room most of the time, I'm tired all of the time..... all things I've never had a problem with until my APS was diagnosed. I'm only 45yrs old and can't imagine life continuing like this for much longer. The symptoms have progressively gotten worse the last 2-3 years.

I've been to every doctor in my area, three different Neurologists who have prescribed over 13 different headache "preventers" and nothing works. I've even gone to the Mayo Clinic in Minnesota to look for relief. Nothing works.

The latest suggestion from my doctor AND the Mayo Clinic is that I be treated with Rituxan. Studies have shown it can and does reduce/eliminate the cells in your blood causing the APS. Studies have also shown it can and does reduce/eliminate the symptoms caused by APS, aka headaches, high blood pressure, additional blood clots, etc.

But my insurance company continues to reject my Pre-Authorization for Rituxan because they say it's "investigational" even after the Mayo Clinic and my doctor's counterpart at the North Carolina University Hospital all say they use Rituxan all the time to treat APS. OmedaRx is the one who publishes the document that Rituxan is "investigational" that my insurance company won't look past, even after the Mayo Clinic wrote a recommendation letter to my insurance stating my need for Rituxan and provided 30+ pages of supporting documentation that Rituxan works.

I'm at the end of my rope dealing with the symptoms APS has brought me. Has anyone else found relief from using Rituxan or any other treatment?

19 Replies

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  • I am sorry you have so much trouble and pain also lately.

    I wonder where you live and if you have got an APS-Specialist and also that you had DVTs, PEs and a stroke when on Warfarin with an INR between 3.0 - 4.0?

    I know several of us with neurological symtoms feel bad when under an INR of 3.5. The INR go up and down and you did not selftest perhaps which is almost a must for us with APS and Warfarin. What is your explination?

    Is Rituxan an anticoagulation drug? You write about Neurologists. We know they do not always "get" what APS is about - too thick blood that has to be thinned.

    Best wishes from Kerstin in Stockholm

  • I'm in Idaho (USA). Yes, I have my Hematologist who is also the best APS Specialist in my area. He also consults with other APS Specialists as far as North Carolina, so he has a good network of knowledge. All of my DVT's and PE's occurred when I was properly therapeutic on Coumadin with an INR of 3.0 - 4.0.

    I self test with a CoaguChek meter I purchased a few years ago. My doctor thought it would be a good idea to switch to Xarelto to see if that helped the headaches, and not to have to self test anymore. WRONG! 7 months on Xarelto, I had the stroke. We even tried Lovenox for 3 months, but no change in the headaches. Added 4 months of taking Prednisone (steroid) at 60mg per day and no change, other than that much Prednisone itself is enough to kill you.

    I have tried to link the severity of my headaches to anything and everything - proper INR, what I eat or don't eat, activity, time of day, weather, but nothing seems to relate to them.

    Rituxan is a drug currently used to treat auto-immune disorders, such as Rheumatoid Arthritis, M.S., Lupus, ITP,

    TTP, autoimmune hemolytic anemia, Evans syndrome, and a few others that are similar in nature as APS. These were all noted by my doctor at the Mayo Clinic.

    My seeing a Neurologist was to make sure my headaches were not related to something else. I think we've proven that, and all my doctors are now 100% sure that my headaches are a direct result of my APS. I currently do not take any preventative headache medication and nothing is any different, other than some of the side effects those meds caused me on top of everything else are now gone. So that's a good thing.

    I know I'm not alone with this but it seems to be escalating on me.

  • I too live in Idaho and have APS. In what part of the State do you live? And what is the name of the APS Doc you mentioned? I have yet to find anyone here that knows how to spell APS.

  • I'm in the Boise area. Dr. Karl Schulthiess at St. Al's Cancer Care Center is who I see. He is a Hematologist/Oncologist there. He has a colleague who works at North Carolina University Hospital who is very knowledgeable as well.

  • May I ask how you transitioned to Xarelto? Did you just stop Warfarin one day and then take Xarelto the next? I'm sorry you had such a bad experience with it as for me it's great. Only get very rare double vision or dizziness (mostly when I'm tired) and probably only had one headache in the last year. I'm assuming you've had MRI's and CT's to chase up your headaches? Too often everything is blamed on APS because of its wide ranging symptoms and no further exploration is done.

    I don't quite know how the medical system works over there but is it just possible to try Rituxan (ie buy it as a private script) and see if things improve?

  • Yes, the transition to Xarelto was same day stop taking the Coumadin and start taking the Xarelto. My headaches never changed at all while I was on Xarelto. My doctors here, as well as the doctors at the Mayo Clinic have scanned my entire body so many times I've got enough "frequent flier miles" to travel the earth! LOL! They are 100% sure my headaches are a direct result of my APS. Until 8 years ago, I hardly ever got a headaches. And if I did, one Tylenol and 15minutes later it was gone. Not anymore. I've had a constant headache for 8 years, which started about 5 months before they confirmed I even had APS. It's dibilitating to say the least.

    Rituxan is a drug administered via an IV. It's a series of four infusions, once per week for 4 weeks. The cost of the entire treatment is over $60,000 USD so I need my insurance to cover it, but right now they won't. My yearly medical bills the last few years for hospitalizations due to PE's and everything else exceeds that amount already each year. I am also trying to get the mfg of Rituxan to sponsor my treatment as Rituxan is fairly new and needs more trials of people using it and having success with it. So far they are starting to get a lot of success, so hopefully insurance will start accepting it as a treatment for APS soon.

  • Hi,

    You are understandable frustrated with your health.I was put onto heparin several eyasr ago after several years on warfarin. I have had a headache maybe a few times at most while on heparin. Its inconvenient self injecting but no need to have INR monitored with regular blood tests anymore and my general level of health continues to improve despite the APS and hemolytic anemia.

  • I am not an expert of oral anticoagulants at all but some of them are not approved for those on a higher INR-level (INR 3.0 - 4.0). I have heard that there are very few "Specialists" in USA.

    As I selftest every second day here in Sweden to have a propel control of my level that specific day, I would like to know how often you did test your blood (I have a CoaguChek XS) and what INR-No you had when you had your different DVTs PEs and also stroke. You say you were in range all the time?

    If you had all those events on Warfarin when on target that means that the Warfarin was useless? I get worried! Perhaps the INR had dropped on those specific days? It does for me.

    Have you tried LMW Heparin, as suggested here and some here also take Aspirin together with it I think.

    Kerstin

  • I also have a CoaguChek XS and I test weekly per my doctors. I've developed PE's while my INR was at 3.2 and again at 3.4. That is why I try to keep my INR at or above 4.0 now and so far it's working. I was on Xarelto when I had my stroke and because you can't test INR while on Xarelto that's why my doctors don't believe it works for me. I currently take a combination of Coumadin and aspirin now.

  • I also have had "events" (perhaps micro-embolies PEs not seen on a scan (?) and was at those moments at A&E with INR on 3.2 and 3.3. That was the veintest-number at the hospital.

    I had those times heart- or chestpain. So I feel best on an INR just under or around 4.0 but do not like to go over that number. I do not want a bleed if I am too high.

    There is a difference between vein and fingerpricktest for me around 0,6. It can differ from time to time just a little.

    Warfarin may be difficult to handle but I think that is the best coagualtiondrug for us with APS at the moment.

    Kerstin in Stockholm

  • HI, I am glad you have some designated Hughes Syndrome/APS specialists trying to get the best outcome for you. Sometimes when people have had a stroke it takes a while for the headaches to calm down, I am sure APsnotFab will give you detail regarding this!

    I hope you get the medication which has been recommended for you, if not many of our members are on Fragmin, daily, have they thought to try you with that? Also as you are in a round of detailed testing do get them to check your Vitamin B12, D, Iron and your Thyroid to make sure you are not low in anything as this would make you feel worse. Please keep us updated with your progress.

    I will also add it is possible to make things worse with drugs such as Tylenol, in terms of rebound headache! So it is very important that you have the right support.

    MaryF

  • A side note. My wife does not have Hughes, but had headaches all the time and would take Tylenol every day. Found out later you can get headaches from taking it all the time alone. Check with your doc.

    ~ Blue Skies ~

  • 8yearsandcounting Hi and so sorry to hear you are suffering with daily headaches, I know what thats like. Perhaps I can tell you what happened to me. First of all I have a primary headache condition called Hemicrania Continua. This is exactly what the name says a pain in the head continuously. It is diagnosed by the fact that it is responsive to indomethacin only. At one time mine was unretractable so I was fitted with a bion occipital nerve stimulator. Then some years later I had a Stoke and was diagnosed with APS. The headaches of course then made sense as part of "my" APS syndrome although it must be remembered that HC is a condition that is not part of APS and anyone can get it who does not have APS.

    For my HC I was under a headache specialist, these are Doctors that can tell the difference between what type of headaches you have. Some people have migraines - normal common migraines, some with aura some not, some have a more disturbing and almost TIA type of migraine called Hemiplegic which can cause some people to have paralysis for a short while. There are two other very rare forms of migraines that you don't hear much about too, Basilar and Opthalmoplegic. There are also Cluster Headaches which are not Migraines but again a primary headache condition that is on one side of the head usually near the eye. The point I am making here is that these headaches all have different ways to be treated and its very important that they are diagnosed correctly so that the correct medication is given. Just because someone has APS does NOT mean they cant have a headache condition that is being exacerbated by their APS, in which case they will need to be referred to one of the headache clinics to get it appropriately identified. In the USA I know there is one at UCSF. Take a read of this:

    ucsf.edu/news/2008/06/3794/...

    So after my Bion died I had to have it removed but by that time I was on LMW Heparin and whilst everyones expectations was that the HC symptoms would return, thankfully they did not. The conclusion is that it is being controlled by the Heparin. I did once tinker with the dose and it brought symptoms back so stopped doing it. Also I use a drug called Topiramate which again was quite helpful and Ive read that is helpful to others with headaches.

    So for you in conclusion, I would advise not to use drugs that have not been trialled with APS. Concentrate on finding out what type of headache you have and treat that and perhaps ask for a trial of LMW heparin like Fragmin (Dalteparin), Im on 10,000iu daily, and see if that works, Id ask for a 6 week trial and you will soon see if it makes a difference. Sticking a needle in your tummy is not the best every day, but in comparison with the alternative Im not complaining.

    Please let us know how you get on. Good Luck.

  • Thank you... you make some very good points here, some of which are very similar to what my doctors have done and said. My headaches vary from being in the front in and above my eyes to piercing in the back lower right side in the occipital nerve area. I have a Cefaly device for my frontal headaches, but the one to treat the occipital nerve area is still being developed.

    Topiramate was one of several headache meds I've tried with no success. I was told I couldn't take indomethacin due to a high risk of GI bleeding. I will note the Fragmin and ask my doctor about it.

  • You may also want to Reseach Melatonin. For my HC for instance there has been some good studies that have shown that it is as good as Indomethacin. I'm currently waiting an appointment so I can discuss trying it so I can come off Topiramate. For you the key is to identify the type of headache you have first. Peter Goadsby is a world renowned headache specialist so if you can get anywhere near him you would be doing yourself a favour.

    I also wanted to mention that after my stroke he told me I was having post traumatic migraine caused by the traumatic brain injury from my stroke. He told me these would last 3-5 years and then fade away. He was as usual spot on! Unfortunately there was nothing much medically that could be done for those!

  • My husband went on Rituxan last October after experiencing horrible symptoms. Headaches, dizzy spells, joint pain and much more. It helped a lot! He was much better for 9 months (treatment every 3 months) but last treatment didn't help the headaches and joint pain that has started to come back. He is still much better off than a year ago when we literally thought he might die. Next treatment in November so hoping it helps again.

  • Thank you for sharing his experience with Rituxan. That was what I was hoping to find was anyone with a positive experience using it. I'm sorry to hear his symptoms are coming back though. I don't know this about Rituxan yet, but can they increase the dose on his next treatment? I will be praying for him that it works again next month.

    May I ask where you're from? Just curious of the areas using Rituxan and if you had any problems getting it approved by insurance like I did here in the Pacific Northwest. I'm told it's more commonly used and accepted by insurance companies on the eastern half of the USA.

    Thank you again for sharing. I'm still waiting to start my first Rituxan treatment, but this info is definitely encouraging and positive for me. 😃

  • We live in Colorado and have United Health for insurance. No trouble that I know of getting it approved. But my husband had been in the ER 5 times the prior 4 months so maybe they saw the urgency in coming up with a treatment plan that was different. He also had gone on xeralto and had a very bad experience- the start of his major problems.

  • Wow, I'm in Idaho and have Regence for insurance, but even after 5 appeals and the Mayo Clinic supporting my need for Rituxan, they still wouldn't approve it. I was in the ER 4 times or more last year alone and several times again this year too. I too was put on Xarelto, but I had my stroke 7 months later. That stuff does not work. Thankfully Genentech, the mfg of Rituxan, has sponsored me thru their foundation for people who have issues getting it approved thru their insurance. I'm glad he's getting the Rituxan and again, I hope it works better next mon for him. Take care!

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