Good Morning across the pond! I've been suffering the past month with what I thought was Alergies! On news it says this is worst allergy season in years! It makes thing very difficult for me, as it's very rare, but I'm allergic to most allergy meds! I go into anaphylactic shock! Therefore I can't take any new med unless in docs office! Most docs won't treat me at all these days! Lol... They just yell at me and tell me how very complicated I am! Then they send me to Heck lol... I'm back on liquids, which I know is Sjogrens cuz that's what prompted me to go to Neurologist! He told me I had a virus running thru my body! Those virus's can kill u!!! Lol... I have had sore achey throat for a month and ear aches! My hearing is getting bad and I just thought cuz I live with 2 hearing impaired people who refuse to wear their Macho hearing aides I just scream! So I chalked it up to that! My throat is almost closed up and now as I talk I garble! It's very funny sounding so we crack up!!! My long lost friend Marion, born in Scotland, came to NY from Arizona! Well we picked up like we were in our 20's again! As we were talking, she also speaks a bit garbled, but didn't ask Why! She told me of her symptoms and I then asked if she has thyroid! Yes she did! I ask her to go home to be tested for APS! To my surprise she said she has that!!! Do Y'all think it's more common than we think??? I found 3 people with that! It cud be because no doctors around even recognize APS and it quite quickly becoming more common! Also another question is it a combination of Sjogrens and my allergies? Can this happen with Sjogrens? I've been DX'd with it and there are days where I start sweating cuz I think my throat is half closed and I'm not getting much air in! If it does close I'll just go to ER/Emergency Room! I know I poke fun of myself, but with this disease if u don't laugh, you'll cry all day everyday!!! I'm quite the character and very misunderstood cuz I laugh and keep on trucking! I only complain on here!!! Sorry guys, but you're my only outlet! I will receive my new leg on Tuesday, after a threat to my insurance company that they were breaking the law by not giving it to me and that I knew someone in the Media, gave them the nam, that I was going to sue them if I fell with old leg cuz was wobbly cuz it was too big! I told them this on Wednesday and by Friday I was approved! I know some of you may think I'm argumentative, but I fight everyday for 3 hours every morning on the phone! Fighting for my rights and what legally I'm entitled to! I'M SO DARN SICK OF FIGHTING THAT I HAD TO GIVE UP FOR A BIT AND CANCELLED ALL DOCS APPOINTMENTS WITH ANYTHING DUE TO APS! I know I was told by Famous city doc to go on Plaquinil! But there's no doc I can find to agree with him! I won't go bak to him cuz he tends to disagree with Dr. Hughes, My Hero & nobody in my book shall ever disputed his word! I'm only 2.17 with my INR after 8 mos of treatment! I think Admin. Dave went on Plaquinil/ Hydrochloroquinine instead of Warfarin! I told my Hemotologist I felt better wen my INR higher and my doc finally said ok I'm going to let u be higher! Then this past week, first Tim, he put his staff on phone and said I was good and keep the warrafin as he said! Well I didn't! I took an extra pull one day cuz I cut myself and on all these hi doses of warfarin it stopped bleeding in 2 seconds lol... Omg I may as well just not take it if my levels are so normal!!! Just call me Norma!!! I'm not making fun of this disease, so please don't take what I say as this disease is horrific for us, but if I don't make fun of myself and continue to fight on phone 3 hours every morning, I just become a lonely and bitter old lady!!! LMAO... I've cancelled new Rheumy this week cuz I couldn't handle anything else! I can't keep fighting without it turning me into an OGRE!!! Therefore I needed a much needed break! I'm so sorry if I've offended anyone with my jokes, but it's my defense mechanism for NOT TURNING INTO AN ARGUMENTATIVE OGRE!!! Lol... If anyone out there has Sjogrens and or Allergies please respond! I have no idea which DICTOR to go to Allergist, or Ear Nose and throat doc who can and maybe will put me on Plaquinil for the horrible SJOGRENS I have!!! I'm just fed up all around and about to shut down completely and try HOLISTIC MEDICINE! Stop all the rat poisoning in my body! My sister refuses to go on Plavix even! Aspirin also bothers her tummy, but she as stubborn as me refuses any other medicines in her body! So I'm up the creek without a paddle at this moment! Thanks in advance for any sound advice! GODSPEED HIS LOVE AND CARE TO Y'ALL! Hugs from across the pond!!! Lol... I just love saying across the pond!!!
SJOGRENS OR ALLEGIES PLEASE HELP - Hughes Syndrome A...
SJOGRENS OR ALLEGIES PLEASE HELP
Just a note my friend Marion had 2 strokes in her 40's and was DX'D in Arizona a few years ago! She's also a person who can't be on any blood thinners cuz she bleeds and has episodes ! She's like DAR! She had a host of docs that take amazing care of her in AZ! I'm going to visit her in September wen its only 92 degrees! I'm one that can't take the heat so maybe I'll go c one of her docs! It's 3000 miles from NY and so is England, but I'm a big chicken to leave the USA with all the terrorist people in other countries! Lol... I'm a scardy cat! Although I and my sister plan on coming one day soo to Denmark and Sweden and Uk!!! We live our Scandinavian and Loyal Brittish roots!!! GODSPEED
Hi Deb,
I have seen today that Dave is on Fragmin and Aspirin daily, not Plaquenil.
Deb, you must listen to your Doctors. Your Hematologist agreed with you that you could go higher. What is your therapeutic INR-level with Warfarin? If you cut yourself and do not bleed much is because you have too sticky blood. Then you need a higher INR-level wich you also have asked your Doctor about. My E nglish is not as my Swedish so I perhaps have not understood everytning correct but I think you should follow the advice of your Specialist. Is that your Hematologist? You also have other illnesses like Sjögrens. I have heard that Plaquenil are good for APS, pains and tiredness and also for Sjögrens.
This is difficult even for the Specialists especially as you have ev 3 illnesses. If I were you I would listen to my Specialist and try Plaquenil if he suggests it but it will take some time before it "kicks in" I have heard. Or take more Warfarin as he agreed with you that you could go higher in INR. Try also to selftest if it is possible.
Fragmin, Clexane, Lovenox is the same as LMW Heparin and are used instead of Warfarin.
Good luck!
I want to have higher INR, he my Hemotologist said it, but never followed thru with his promise! I need to go on Plaquinil I've been told, but have no doctor to put me in it! Right now I can't hear in rt ear or swallow anything! My throat is constricting and I speak garbled! My voice is funny! No redness just severe pain in throat and ears and dried out nose! I may go to ER I just tuk Benedryl! It feels like an allergic reaction to somethings! The pain in my throat is beyond excruciating!!! Nothing works 4 pain! Oh God this is too much!
Sounds like acid reflux.. ENT doc can tell
Lure 2,
When I cut myself, my blood does not flow like water. I talked to my hematologist and he stated that my INR 2.5-3.5, is a scientific number. The number reflects what is going on inside my body. He is happy that the body is still functioning correctly to stop the bleeding while maintaining a good INR. I not sure how I feel about this. Thoughts?
Hi DaCoach,
A assume that you have APS when you talk of that therapeutic level between 2.5 - 3.5 in INR. I do not know how much you know about our site and about your illness but we have far too sticky and thick blood and that may be individual also. This sticky blood need to be anticoagulated at a rather high INR.
As to me I have all the antibodies for APS in high titres and have had that for 15 years now and is said to have a higher risque for thromboses. I do not know.
I selftest ever second day and have a therapeutic range of 3.2 - 3.8 as to INR. I was to my dentist for an ordinary cheque up a year ago, and I asked him to test if I was easy-bleeding (I had a rather high INR that day) but the dentist did not think (he did a test) I was easy bleeding. I have never noticed that either so I think I could go rather high in INR (but I have never tried to do it) without bleeding. I stay under an INR of 4.0.
Prof Graham Hughes, who has known this illness for over 30 years often says that we "do not bleed from APS but clot". As far as I have noticed that is true, BUT we are all individuals! I am not medical trained only very interested to tell the world of this illness that affects all parts of our body if we do not have control of our blood.
Hope this was a sort of answer and I also hope you have a Specialist of APS. Welcome back if you have more thoughts!
Best wishes from Kerstin in Stockholm
I raised it not cut it!
Why did you cancel your Rheumatologist? Is he a Specialist? You need to listen to your doctor and hear what he says. You have told us that one Doctor wanted to give you Plaquenil and why did you not follow his advice? What therapeutic level for INR with Warfarin are you put on? I have asked you twice. You can not raise your dose without talking to that Doctor who has the responsibility for you. If that Doctor does not understand APS and gives you a too low dose of Warfarin (?), get another one who does understand APS!
I want to help you Deb but it is difficult. What happened with Dr Erkan? A wellknown Doctor. You see I still remember his name but otherwise my memory can be tricky sometimes.
Now when you took Benedryl it will change your INR probably. Up or down I do not know. If you drink one glass of Wine you must drink it every day as the Warfarin is very sensitive even to alkohol. If you do not like this regime change to Fragminshots or oral tablets if one of them are approved in your country!
Kerstin
Yes thank you Kerstin! I'm sorry, but had no choice but to cancel docs appointments due to fact that I did not have the money for the co-payments! I had a mishap where someone stole $600 from me and had no money left for anything! It's so sad that in USA if ur poor like me and can just pay ur insurance at $600 a month, then $50 co-pay on top of that! That supposedly good doc u mentioned, wanted me to go on Plaquinil after being tested with my eyes! That doc is in NYC and costs me almost $100 to get into the city with tolls and parking fees! Plus that Doc is $625 a visit and I pay half of that! Plus he doesn't agree with Dr. Hughes on a few things and all he did was tell me how complicated I was and difficult! At one point he kinda made fun of me and I didn't like that! I'm very sensitive and he was a bit angry that I was so complicated! I don't like anyone who disagrees with Dr. Hughes, to me he's my hero! When I get some money together I can go bak to Rheumy! I need go on Plaquinil with this Sjogrens! I'm just venting as in last post! I'm sorry if u think I'm not listening to doctor, but he went back on his word and had no time for me last week! So my INR level he wants me at is between 2-2.5!!! Rediculous!
i'm not that far away since I'm only in West Virginia, but I have a feeling that your spring pollen season in New York is, like it has been here, very very bad. Here, we had such a mild winter and only two weeks of very serious winter in spring at a time when the temperatures are usually milder, and as a consequence, many plants all bloomed at once and the pollen count went sky high! And , there is a pretty nasty cold virus making its rounds down here and a couple of usually very healthy and fit friends have come down with pneumonia. Add both of these factors together and it makes sense that this would be a difficult season for you. Perhaps you have had Sjourgens tendency for some time but it took this year's pollen and virus double wallop to bring it out.
i hope you can consult with a doc who can address the spectrum of autoimmune/inflammatory symptoms --that would be a rheumy I'm thinking -- though perhaps an allergist might offer some advice?
and yes, health care in the US sucks at time. i will never forget my co- leader of our scout troop showing up after her work shift one day in tears: she had just explained to a patient, mother of 3, that because she had no insurance and had waited so long to seek treatment for a lump in her breast, that lump had turned gangrenous and there was no way they would be able to save her life. Her husband just sat in the hall, face in hands, crying. her children could not go in the room to say good bye because the stench from her gangrene was so overpowering. The patient exlained to my friend that she waited so long to seek treatment because she knew they could not afford to see a doc, and Medicaid would not pick up the costs until her issue became an emergency.
my! Wasnt that an uplifting tale?
good luck, and stay in touch. we're all cheering for you!
Debbieweb01, Many years ago, before this APS business, I gave up gluten. I did it because I thought it was possible that it might be causing inflammation and as I was just in my 50's then, I thought it a wise move to stave off the pain of arthritis. Guess what? I lost my seasonal allergies. I have had them all my life and they had been horrendously inconvenient. Sure, I could take something and get some control, but the symptoms of itchy eyes, chronic congestion and exhaustion were a major interference. My brain would just fog over and shut down. Imagine my surprise when I went into allergy season and nothing happened? It may not have been the gluten, but it was certainly the wheat and possibly some other grains (grasses) which I ceased ingesting.
Do you eat wheat?
Personally, in the face of APS, I am giving up dairy as well. I am determined to take down any additional inflammation by eliminating all the possible contributors.
I'm so sorry you are suffering this way. I wish I had a magic wand. xo
Hi Deb,
So sorry that this is what life is today. I know it is difficult in the US and we are very spoiled here in Sweden. I tell people I meet in the Pharmacy etc that we are very lucky to live in this fantastic country. I looked at the TV-program yesterday about Obama-care and I like your president very much and he was so sad that everything had not been as he wanted.
You have got two very positive answers from Gina and Mikki and I am sorry if I do not understand your situation all the time in the US as I compare with Stockholm where it is so much easier to get a Doctor but perhaps not a Specialist. But I am well aware of that it is a great difference! STILL .... at the beginning of my journey I had to fight for my life also as this illness was not at all known here in Sweden. So I know what it is to fight for help and the right drug. I had microclots and they were not seen on a Scan.
Take good care of yourself and never give up your fight!!!
Best from Kerstin
If you have discussed Plaquenil with your doctor in the city, why don't you call or email to ask for them to send a prescription at your pharmacy? Also, you have to understand that many rheumatologist in the US have a different views than Dr. Hughes. That is just the way it is. We hope more understanding will come. Since you clearly have APS from anyone's viewpoint it shouldn't matter that much which rheumatologist you go to. I have also have been traveling to the city, and I'm planning to find someone closer to me. You do need to take plaquenil, and since it works slowly the sooner the better. I have also been having problems swallowing, but it happens now and again, and not nearly as bad as you. I take a low dose of prednisone, and I think that may help. Didn't you have a rheumatologist in Long Island? Can you go back to that person? Or again, talk to your doctor in the city's assistant and ask if a short course of prednisone might help. I often call or email there for prescriptions, and I haven't had to travel to the city when I'm in a flare to get an increase in my prednisone, for instance. Since you have been there recently (I believe), and since it is so difficult for you to get to the city, I think they should accommadate you, too. Then if you are unhappy with your doctors, you will have to start researching rheumatologists closer to you. It does seem you need to find help soon with your swallowing issues, but I know some people with autoimmune disease also have this problem.
If you do change to a doctor closer to you, let them know that it is because of the difficulty of traveling to the city. Doctors are afraid of "difficult" or "complicated" patients.
OMG thanks everyone for that advice! Years ago I use to do the towel thing , not so fab! I've tried everything for pain! Not even prescription meds help! I will drink the hot tea with lemon! It helps! Right now I'm on Benedryl every 4-6 hours! I actually feel the throat swelling up and my airway shutting down! I then take Benedryl! I know they'll probably put me on Steroids/Prednisone! I almost put myself on it cuz I have some, but calls my Hemotologist and am still waiting for him to call back! Being on Warfarin and prednisone alters ur INR and u must be careful! The allergy season here is just awful as Gina has said! Now my lower lip is going numb, which I find a bit strange! It feels weird! I called my allergist and tried for appt. today, but they said no booked! I think it's a combo of allergies and Sjogrens! My glands in neck are swollen too and hurt!!! I'll b ok soon as I get on steroids!!! Thanks so much Mikki, Gina, Kerstin ann by and Not so fab for your great answers! I know y'all have been where I am! I'm just soooooo very tired of stating my day on phone fighting for my life! I'm complicated and I know docs hate wen they c me coming! I almost feel bad they have me as a patient!!! I confuse myself! Yes I too get micro clots once seen by emergency room doctor! I was so happy when that happened and had an ER DOC that actually knew what he was doing! Immediately he ordered heparin drip and I felt confident in his knowledge of APS! I'll let u know how it goes tomorrow! If my throat closes too much I'll just go to hospital! This swallow problem started last June and had it on n off this whole year and now it's out of my control!!! If I drink too thin liquid it come outa my nose! It's awful, but this too shall pass!!! Love to y'all and good health and keep strong! I'm trying! Godspeed
I never heard back from my doctor which so unusual for him! I just had to take another Benedryl cuz that weird feeling in my throat and wheezing came back! I can't wait to get better! My hubby, my son, & I are planning a trip of a lifetime to our favorite place... Nashville,Tennessee! We are going to drive! It's about 1,000 miles! I know I'll have to stop a lot to strech my legs so I don't clot! It'll be fun! This is why I'm trying so hard to be well enuf to do our trip! This is all very strange for me! I'm feeling better since I tuk the Benedryl, which makes me think Gina is correct! That it's The allergy season! I'm sorry if I'm rambling, I'm just nervous! Thx for listening! Bless You!
Before you go on your trip cheque with the Doctor responsible for your INR. I wonder how the INR acts when you take all that Benedryl. When you get numb on your lips it could be because of too low INR.
You have really a difficult situation at present and need all help you can get. Now I just wish you get a marvelous trip to Nashville!! That must be something very special!
I can see on your writing that you are feeling better today also. Probably the Benedryl.
Best wishes to you and your family
Kerstin
Oh Kerstin my INR coming up 2.78 and rising much better , but not there yet!!! Almost!!! I'll take it!!!
No wish they had put me on steroids, but this DICTOR was scared to death of me!!! Lol... This is what happens to me! No doctor wants me! I'm way too complicated! I still have trouble breathing and must find a doctor to chek my throat for when I have asthma and inhaler does nothing! It's scarey!!! You hear these gut earl sounds! Yes I made hot toddys and did steam thing and I breathe better and put half a shot of whisky in it and I sleep like a baby! My Dad use to use it when I was kid with bronchitis for medicinal purposes!!! Lol... Thx for your input! You're so very kind and smart! Godspeed!
Sjogrens 
Sjogrens-just how dry can your mouth get?
