Missing too much work

[Raking223]

Hi,

I have learned so much from everyone's posts. This blog is the best and such a great resource. I think my APS may be acting up again...Been off work for 7 days now due to fatigue and dizziness. The dizziness feels like my head is full of water or I have on a pair of bad eye glasses on. I was off most of January for this same feeling.

I went to hematologist Friday for my routine appt.. he said my INR was 2.4. I have appt with rheumatologist today for 3 month checkup. I am thinking about keeping a daily diary of how I feel each day and also asking if I can try to raise INR to 3.5. I felt better yesterday and thought I would be able to go to work and then woke up dizzy again today. Fatigue makes me feel like a hypochondriac. Everybody gets tired so I feel like I should just suck it up. I am not lazy and enjoy working ....I would work until I just collapse if I could. These days I feel great if I just get through the doing the dishes ....even though I have to sit and rest for an hour afterwards. You guys ever feel like this?

[Raking223]

Thanks for your reply...been taking hydroxychloroquine for a few years now.

[Raking223]

By the way....You guys really rock!!! I appreciate your website so much. Bought the books Sticky Blood and More Sticky Blood by Kay Thackery too. I have seen those recommended somewhere. ...Anyway..Thanks again.

[mylafont in reply to Raking223]

Were the books knowledgeable and helpful regarding APS?

[Raking223 in reply to mylafont]

Hi. I wanted to get back to you about the books on Hughes Syndrome. I do recommend "Sticky Blood Explained" by Kay Thackery. I just finished reading it. I also read "Hughes Syndrome, A Patient's Guide" by Graham Hughes. I recommend "Sticky Blood" for you AND your family. I am taking the patients guide to my Dr. Because Dr. Hughes has a couple pages where he talks about the INR range of 3-4.5. My doctors all argue that it needs to be 2.5 to 3. I hope this will convince them.

[Manofmendip]

Hi Raking.

My colleague APsnotFab has given you some good advice.

Your symptoms are similar to mine and many others on here. When I was on Warfarin, now on Fragmin, I needed my INR to be around 4.0 for me to feel reasonable.

Best wishes.

Dave

[Raking223]

Thank you

[Lure2]

Yes we learn a lot on this site. I have been here for several years. My English is much better.......

I think that your INR is too low. My therapeutic INR level is 3.2 - 3.8. As I selftest i test my blood every second day. A good idea to ask your Consultant to raise your INR to 3.5.

Yes, write down everything and even how much you have of K-vit rich vegetables each day. Also if you change your drugs. I suppose you know that K-vit rich vegs lower your INR (for me in less than 15 hours).

Best of luck from Kerstin in Stockholm

[Raking223]

Thank you

[Raking223]

Rheumatologist today said that my fatigue and dizziness are caused by allergies. I asked her about elevating my INR range to 3-3.5 or 4 and got a big old lecture about how I should not pay attention to what I read...that the recommended range for an APS patient is 2.5 to 3, contrary to everything I have read. Kinda felt like I was dismissed again.

[Ozchick in reply to Raking223]

That's really bad! It's hard to explain to people that fatigue is not just "feeling tired" but that you face the day with a struggle. I can remember getting up in the morning and going back to bed half an hour later. What are you allergic to? It took me a few years to get on the right meds to feel like a normal person, and I had a doctor who dod listen to me. I know the docs get frazzled with "Dr Google" and not everything on the net is true, but there are dedicated mods and admin here who understand this syndrome better than some Doctores

[minnime63 in reply to Raking223]

Oh yes! Tell me about it! My docs are the same! I just get told it is trust wide policy to have INR between 2 and 3. I'm still waiting to get back to rheumy for Plaquenil, but yes, fatigue is the worst - I feel so lazy but know I can't to any more. If I pop out for a coffee with friends I have to pay the next day! Whereabouts in the UK are you? I'm in Kent. Just listen to your body and rest when it tells you to x

[Lure2 in reply to minnime63]

Hope something will soon happen (change doctors etc) so you will not be so extremely tired.

The APS-doctor you have should know that you must be at least at an INR of 3.0 to feel any relief from the warfarin. We feel best around 3.5 or even little more.

I know you have told us that some changes are coming up soon, so Good luck with those changes. Plaquenil perhaps?

Kerstin in Stockholm

[minnime63 in reply to Lure2]

Thanks Kerstin, I'm pinning all my hopes on an appointment in July with Prof Hunt at Guy's! Hopefully what she advises can be filtered down to the local doctors. Where I live Plaquenil can only be prescribed by a rheumatologist so I've been waiting for a referral back since February. Trouble is, when I saw her in January (and she diagnosed me) I was on Naproxen so pain free. That had to stop to go on warfarin! You seem so settled with it all! I guess there will come a time when the treatment is therapeutic and I can start living a normal life. Tell me that is so?!!! I'm not usually one to go on about my ailments, feels very selfish. Thank you for asking though. I think you are a thousand per cent more knowledgeable than my doctor!

[GirlfromTennessee in reply to Raking223]

I hate how they choose not to listen to anyone else's advice/symptoms but this site has helped me more than anything!! Sharing our feelings & asking questions have been my godsend!! It's kinda sad because my Dr's are not up to par on our illness!!!!

[mylafont in reply to Raking223]

My initial INR range was 2 - 3. The MRIs continued to show more damage in my brain. My neurologist raised it to 3 - 3.5, testing every two weeks rather than once per month and the next MRI showed no additional damage.

You may have to keep on top of this and educate your doc, or find someone willing to learn or already knowledgeable. Reading and being persistent about APS is the responsible thing to do. I'd still be on antidepressants and regularly visiting a psychologists had I not persisted.

There is a INR range poll on another forum I belong to. Most people that filled it out are between 2-3, but second is between 3-4.

I hope it doesn't take a stroke or worse to get your doc to up your range if that's what's needed for you.

[Raking223]

Thank you for the validation. I feel the same way. I am in Texas. I feel bad because she told me she has a 21 year old patient with APS who is on 18mg of Warfarin and her INR is still at 1.0. i wish I could tell that patient about this forum. The rheumatologist I saw is also an allergist. She is testing me for allergies again in a week because it has been 50 years since I was tested. I was allergic to everything that they tested me for back then. She also said that the dizziness could be from my hearing loss. My hematologist/ oncologist is keeping my INR around 2.5 also. I always hesitated to change doctors but I think I am going to look. I had cancer twice...it is all gone now but I still see my hematologist every 3 months. The last two visits he forgot to request my INR and I had to remind him.

If a Dr. Here would just go study with Dr. Hughes and come to Texas and advertise...he would be inundated with patients. The lawyers here in Texas advertise all the time. Maybe Dr. Hughes should start an ad campaign and maybe do a show on PBS to let people know about APS. The ad could give a brief description of APS, the symptoms, tell them what the minimum INR should be....etc. This would cause people with symptoms to start requesting to be tested for it, Doctors would have to continue their education to keep up with the demand...supply and demand. I don't know...just a thought. Thanks for listening ....

[xavart in reply to Raking223]

I in Texas too, Austin, TX, I need to find a doctor?

ST David's Hospital, is private and they don't have research, I feel safety in Texas like a blue worker in XIX century.

I'm from Paris France and now I understand why there the health system is the best on the world.

In Paris Lariboisière, they made the job so good and for free.

Ho my good.

Raking223, I wish you feel better.

[Raking223 in reply to xavart]

I found a Dr in Galveston Tx. She is the only on nearby on Dr. Hughes recommended website. I don't know if she is a researcher, teacher, or if she is accepting patients but here is a link to her info. She will be closer to you than me but I am still willing to drive to see her if she is accepting patients. Looks. Like she would be the one to see for us.

utmb.edu/InternalMedicine/d...

[mylafont in reply to Raking223]

Is there a full list of docs in the US on Hughes website?

Can you supply the link?

[mylafont in reply to xavart]

APSFA doctor list by state

apsfa.org/apsfadrlist.htm

[Twadd]

I do! I have just had approx 10 days of feeling totally exhausted and "Woolley" headed and for the life of me I cannot find a trigger or reason. Today, I am very much better and SO pleased to be so. My partner has said I have also been very snappy in the same period. I too now keep a diary of how I feel. I feel the need to "justify" why I feel I'll.

[cctexan]

Hey I'm from Houston! blue collar, tobacco chewing, pick up truck driving, boot wearing doctors rock huh? Lol

Actually I think my rheumie is a good one, but I am new to this. She Did believe the pain, was efficient and posts my reports online so far. But I have question that she didn't have time for. Not cool. But next time I just wont leave. 😐

[Raking223 in reply to cctexan]

I agree. They should answer all your questions. I had mine written down but I didn't get to ask them all. I should have just stayed too.

[cctexan in reply to Raking223]

My mom recommended I take recorder and ibask the questions while recording so I can catch it all.

[Raking223 in reply to cctexan]

OH, I do have an appt. With a Dr. in Galveston....actually a 4th year resident. They seem to be the closest to Dr. Hughes ...online anyway. They are doing research on APS there. I think it is worth the 500 miles for me if I can get to feeling better.

[determinedandstrong in reply to Raking223]

Hello raking I live in Houston and was wondering if you ever saw the doctor in Galveston? If so what's his or her name I need to see them, I have to wait for my second blood test which is In September, but am feeling so bad on an aspirin, I was told that it's a research center by my rheumatologist. I just want to talk to a doctor who understands!!! And can help.

[Lure2 in reply to determinedandstrong]

Hallo, Did they check your INR as you said they would? I do not understand why they should do that as you are still on Aspirin? We have most of us an INR of 1.0 when we are not anticoagulated.

You say you are diagnosed both on symptoms as on blood.

What sort of "symptoms" from APS have you had.

Could they not get you on an Heparin trial? That would be ok in the US I think or....? You could ask about it. Then you could notice if your symptoms were reduced.

Kerstin in Stockholm

[Raking223 in reply to determinedandstrong]

Not yet my appt is next week The Dr. I am seeing is Dr. Ganti. She is a fellows at the Adult Rheumatology Clinic at UTMB 409-772-2222 or 800-917-8906.

[determinedandstrong in reply to Raking223]

Thank you!!!!

[determinedandstrong in reply to Raking223]

Hello again please let me know how it goes, I'm anxious to know. It would be so nice to know if we actually have someone in Texas who can help us. Good luck to you, oh yeah how long did it take for you to get an appointment?

Thanks again!

[Raking223 in reply to determinedandstrong]

It a couple of months. If you schedule and tell them to...they will call you if they have a cancellation and can get you in earlier.

[Raking223 in reply to determinedandstrong]

I'll let you know how it goes 😊

[determinedandstrong in reply to Raking223]

Thanks

[Raking223]

You ROCK!!!

[mylafont]

There are times when I can clean my whole house in one shot. Other times, it takes me 3 days. In most cases I do what I can until I get tired. How long that is varies from time to time.

I do have episodes of confusion, dizziness or balance issues almost daily, but those last a minute or two, sometimes followed by migraine sometimes, not.

I am on plaquenil as well as warfarin. I read how it makes most feel better (and I do since all this started) but still have fatigue and episodes.