not getting any better

Hi all

I am newly diagnosed and am in sunny Queensland Australia. I had several pulmonary embolisms end of December last year and they only got diagnosed at the beginning of Feb, by that time I had suffered blackouts, seizures, pneumonia, fluid on the lungs and a TiA. I was put on rivaroxaban for 6 months but did not get a whole lot better and also developed a lot of other symptoms. My GP kept investigating thinking I had MS but got the diagnosis of APS. So I have been put back on Xarelto indefinitely. I see a specialist on the 24th Nov.

I read this forum every night and find it very informative. I see other people have relief from symptoms when they are well anticoagulated. I have been waiting for improvement but it isn't happening.

Symptoms with the PE's that still continue:

migraine (have had for 35 years) - they increased in pain and frequency and continue to do so

blurred and double vision - daily problems

fatigue - always!

heat and sweating

New symptoms after PE's had cleared a bit:

joint pains

back pains

Irritable bowel syndrome?

nausea

faint and dizzy

I cannot stand or walk for more than 10 mins; then the pain intensifies and I break out in a sweat. I am very overweight; have been for a while, but I could still move about freely; but now I have had no improvement but gradually losing mobility by the day. I was really down today and for the first time since diagnosis, shed a few tears as I feel my mobility is severely limited and that I will soon be house bound or confined to chair or bed. Migraine last week lasted 11 days and my GP gave me endone. It had no effect on me, so I didn't bother continuing with it.

I suppose I just am having a vent or hoping for words of encouragement

thanks in advance

Di.

11 Replies

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  • HI there, thanks for your post, and I am pleased you find this forum so useful. As your GP is in testing mode, please get them to look at your Thyroid, also B12 D and iron, all crucial to receiving the best possible outcome alongside your Hughes Syndrome/APS. The trio of disease as often quoted by Professor Graham Hughes himself is Hughes Syndrome/APS, Sjogrens and a Thyroid problem. Be aware that the TSH test for thyroid is very unreliable which is why so many people are then told they have 'FIbro'. They need to look at it more widely than this, also your T3 and Reverse T3. Sjogrens and Thyroid often contribute widely to the fatigue beyond the fatigue widely associated with Hughes Syndrome/APS.

    I will also add that many of us choose to go gluten free which clears up the IBS, it is very common to have a problem with gluten if you have an autoimmune disease, this does not need to be fully blown Coeliac Disease, gluten intolerance is becoming increasingly recognized. I also take probiotics, but as with anything new whether vitamins or drugs, it has to be checked with your main medical care provider.

    Dr Tim Godfrey over in Melbourne is an expert, known to members on here and to our charity, also look on here for an Australian doctor. Otherwise it is the knowledge from other members on here, many from Australia.

    apsaction.com/

    MaryF

  • Hi Mary, thanks for the informative reply. I will take note of what you have said and raise it with the specialist on the 24th.

  • Hi and welcome

    I agree with what my colleague, Mary, has advised you.

    Dave

  • Whoops forgot the link, but have added it to my reply also.... sorry... apsaction.com/

    MaryF

  • Hi,

    Tim Godfrey in Melbourne was suggested by Mary as a Specialist of APS. As you probably have read and understood how important it is to have a Doctor, who knows what to look for, as to the symptoms we have.

    You also say that you are going to see a Specialist on November 24th. I hope he knows APS. MS is often misdiagnosed and mixed up with APS. The Neurologists, we have found here, do not usually "get" what APS is about - too thick blood that has to be thinned.

    I also had a lot of neurological symptoms at the beginning. I had Baby-Aspirin for it and it helped a couple of years rather well but then I was worse and had to start Warfarin. At once I notised an improvment. Hope you find a Specialist and get something to thin your blood properly. Let us hear how it goes with your Specialist on Nov 24 and try also to see Tim Godfrey if you are not satisfied with the other one.

    Best wishes from Kerstin in Stockholm and Good Luck on November 24!

  • Hi Kerstin

    The doctor I will be seeing is an immunologist. Apparently their clinic has a lot of APS patients - The Compass Immunology Clinic attached to a major hospital here in my city. immclin.com/

    This forum has given me a few points to look out for, and I will come back and give my view on this clinic and doctor, if others wish me to.

    Thanks.

  • I don't know if an immunologist can help with APS other than a side line. I see a Haematologist who added aspirin to my Rivaroxaban, also Rheumatologist for the auto immune. What dose are you taking? Along with the Admin on here pointing you in the right direction you really need to see someone who is really across this and can work out the right treatment for you. There is a specialist in Sydney if you are able to fly down (sometimes the fares are about the same for Melb/Syd.) If I stray too far off my regular meds, I can soon get the dizziness/blurred vision/migraine and after last emergency visit took me nearly 3 weeks to feel "right" again. Really grill the GP on his knowledge of this. Took me over four years to get diagnosed and feel I'm not getting ready to pop my clogs just yet!

  • If it were me I would ask if I could be on Warfarin and have Clexane injections to administer myself if my INR is under 3 that's with self testing which is really useful

    To start with perhaps they will let you have the Clexane injections to see if you improve.

    Rivaroxaban is quite a new drug

    Hope you feel better soon

  • Please note: This is the English major housewife from rural West Virginia talking: I have a theory, developed after years of following the posts on this site. The clotting cascade is very, very complex with dozens of "dominoes" which interact with dozens more. Some of us live happily ever after on aspirin alone; others on warfarin; others do well on the newer drugs; still others on the injectibles. And many of us have to switch from one medication to another as time (and presumably our disease) advances.

    So -- what if APS is someday recognized as an umbrella diagnosis? That complex clotting cascade may engender a number of possible autoimmune issues-- in other words, I am allergic to "Domino A," John Doe is allergic to "Domino B," and so I do best on warfarin, and John Doe does best on heprin.

    Again. This is only an observational theory from a totally-medically unqualified patient! But it explains why nearly all of us have found it essential to consult with a doctor who has experience treating APS. Such experienced doctors are more likely to acknowledge the need to listen to their patients' individual symptoms (so many docs seem to not make the connection that a circulatory system that goes nearly everywhere in the body can thus clot nearly anywhere in the body and so produce a variety of symptoms,) AND are more likely to persist trying new drugs until that perfect one is found.

  • If I were me I too would also ask to be put on one of the more established anticoagulants especially if the Doctor treating you is not an established and EXPERIENCED APS specialist with many APS patients who they have many patients on the new oral anticoagulants. It must be remembered that the trial for the new anticoagulants for APS has not yet been released in London and I personally would not be on them unless I knew the outcome and that it was the right drug for me. Clearly you are not established on any medication yet and it might be better to get stable with symptoms under control before trying something so new.

  • I'm newly diagnosed and have been automatic winch having a life saving stomach operation! I usually snap back right away! This time no! I've been waiting 40 years to diagnosis! Since I'm newly DX'd (diagnosed) I'm not stable yet! I'm in bed every other day! I've been told that once our blood gets to proper range we feel better!i lost my left leg due to APS & it wasn't till then that doctors started taking me seriously! Yes you MUST find a doctor who knows this inside and out! I went to my gp and said something about APS The answer he gave me was absurd! I had all I cud do not to laugh in his face!!! I just left and said not a word thinking omg I no more than he does! How sad for me! Even my Hemotologist,whom I love, shud have tested me 10 yrs ago for this! He doesn't seem to no as much as I do either! As soon as he stableized me I'll c a Rheumotologist! I too am suffering every night with joint pain and flu like body aches! I wish u well my dear and keep fighting! Don't let this disease overtake you! I c that I can lay in bed and sleep most of the day away! Partly depression and mostly fatigue from APS! I got up today to get my hair done because I'm taking my sister to NYC FOR a Broadway Play and dinner! I come fro Long Island, NY USA! I shall say a prayer for you to find someone who understands you! Mary is so very helpful to all! Her advice is good! I'm too newly DX'd, but we can share! Feel free to contact me at anytime u want!!! GODSPEED!

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