Extreme Fatigue with APS?

[Twin59]

I was just reading an older post about someone with APS and extreme Fatigue. I was just diagnosed with APS. Also test for Lupus which was negative. I'm on Warfarin which INR is kept in 2.0 to 3.0 range (read many of you stay in 3.0 to 4.0 range). I'm 60 years old and had two PEs in last 2 years before anticoagulation. I also am hypothyroid but on meds for it. Also get migraines, have light sensitivity and dizziness. Take antidepressants-- Lexapro. The fatigue is just overwhelming. I read some are on plaquenol and it helps for fatigue? If so does it help? I'm in Wisconsin and thought about going to Mayo in Minnesota to hopefully see someone who specializes in APS. Has anyone gone there go their APS? Also will be seeing a psychiatrist (long waiting list) about switching antidepressants to see if that helps. I've switched a few times but it hasn't helped so far with fatigue. Sorry for the long post.

[KellyInTexas Administrator]

Hello Twin 59.

Welcome to the APS forum.

Yes, fatigue with APS is very common.

Not only is it an auto immune disease, but we have the added issue of thick blood, so oxygen does not circulate correctly .

I’m not sure your exact history of clotting , ( arterial, venous, how many of each ) but 2 vein clots usually requires 3.5-4.0 and an arterial clot 4.0 INR

I will send you the 2019 recommended EULAR recommendations for APS when I get home and have steady WiFi if you haven found that before I get back to you.

EULAR is the European league against rheumatism. America uses the same standard- it’s international.

I’ve heard mixed reports out of Mayo Clinic. If your insurance covers, it might be a very good place to start since you have the advantage of living in Minnesota. The Scottsdale branch would not be as good .

In the meantime look under the pinned posts section here and make sure thyroid and vitamin levels are in correct range.

Make sure you are checked for hyperlipidemia.

Make sure homocysteine level is ok- this bring out of range

can promote a hypercoaguable state. ( methylated folic acid will correct the problem. )

Have other clotting factors been checked? I’m sure they have been- your Hematologist will have checked Leiden V, Protein s and c deficiencies.

Make sure your Rheumatoligist keep an eye out for Sjögren’s syndrome as well.

Plaquinil helps with all these rheumatic diseases and halts their progression , helping to keep them at bay .

Again, a warm welcome.

[Twin59 in reply to KellyInTexas]

Thanks so much! I had 2 pulmonary embolisms within 2 years prior to being put on warfarin after first APS test results came back positive. Had DVTs in both legs when I had PEs. I saw a hematologist for APS diagnosis, but wonder if it would be good too see a rheumatologist too? I've never been tested for sjogrens. I'll check out the pinned posts. Thanks again!

[KellyInTexas Administrator in reply to Twin59]

rheumnow.com/content/2019-e...

Here you are.

I’m sure other admins will be along to add their suggestions and other pertinent links later on as well.

[Twin59 in reply to KellyInTexas]

Thank you!!

[KellyInTexas Administrator in reply to Twin59]

An INR of 2.0 will be dangerous for you.

I hope you have an internist working with you in the meantime to help you get your INR up. Bring the paper I sent you to him/ her and see if they will raise it to the appropriate level.

It’s important to have your INR checked at least twice a week.

Keep greens steady in diet- you can adjust your INR with greens in about 12-15 hours where as warfarin adjustments take roughly 48 hours. ( 72 to fully hit) .

The APL antibodies make our INR’s quite unstable, ( labile) unlike other patients who are on warfarin for a fib, for example.

It’s important to log daily your mg dose, and any medications you take, or illness, or adjustment in greens.

I wound up custom making my own log , or chart. It’s like a work sheet really. My GP takes a copy of it each time I go in. ( I have a column for injecting LMWH -Lovenox- if my INR falls too low.)

I keeps blanks and fill in each new month.

[MaryF Administrator in reply to KellyInTexas]

KellyInTexas provides a very knowledgeable and balanced over view of not only Hughes Syndrome/APS but also which consultants are where in the USA. I will add that it is helpful as a patient to check your levels of vitamin D, B12, (b12 active test), also a superior thyroid panel, beyond just the TSH, and also Ferritin and Folate, to make sure nothing is giving your worse circulation or fatigue. I always do this for myself and all of my family and we have very helpful doctors. MaryF

[MrsMouseSJ]

I think perhaps your INR is too low. I have continual fatigue - I have a number of conditions, such as Lupus, besides APS. But it is lessened when my INR is above 3 and is noticeably improved when my INR is above 3.5. So if you are able to persuade your doctor/s to trial a higher INR, then it would be worth a go.

As for Plaquenil, yes, that has also helped. But it took me a whole year to be able to take it daily. I found it very hard to tolerate. But don't let that put you off. Better to try than not, if you are able, I would say.

All good wishes to you.

[Twin59 in reply to MrsMouseSJ]

Thanks!

[Mrslacy]

I see a research and consult team at the Mayo clinic in Rochester. They work together as they research and consult with your local docs to know how to manage your APS. The team includes all disciplines headed up by s Rheumatologist. Total game changer! I now only go annually to keep up on the newest finds and that my local cate team are managing my condition correctly. The members of that team at the Mayo are caring, listen, and explain everything extremely well. Your best advocate is still always a well informed, self educated you! And they will arm you with everything you need to become that advocate.

FYI: I reside in Iowa and travel 6 hours to see that team in Rochester.

Hope this helps.

[Twin59 in reply to Mrslacy]

Thanks so much! I did an online appt request for mayo and they called yesterday. I need a referral from my Dr first. I saw online that Rochester had 2 APS specialists. I live in Wisconsin and it would be about a 4 hour drive I think. I was on the fence about going afraid of being disappointed I guess so this is great to know! I'm so desperate to get rid of this fatigue. I also suffer from depression so I'm not sure if that's causing the fatigue or if it's the APS or both. I'm thinking I should follow through on getting a referral. Thanks again!!

[Mrslacy in reply to Twin59]

Oh....additionally: APS in and of itself causes depression. Plaquenil also causes depression. Be careful of antidepressants that could be contra-indicated with warfarin(coumadin).

[Twin59 in reply to Mrslacy]

Just have a question. Do you take Plaquanil for your APS? Also is your target INR range 3.0 to 4.0? Thanks!

[Mrslacy in reply to Twin59]

Yes, I take Plaquenil. Inr range is 3.5 to 4.5 with 4 being the best for me.

Caution: Mayo team will help a lot. But what we have is NEVER totally gone. I still have all my symptoms and know if my INR is too low coz they get worse. But the improvement of the symptoms is significant when INR is high enough. So just manage your expectations. You are always going to have APS and always have some degree of symptoms. Managing them is the key. I'm still trying to identify some of my symptoms that have been getting worse, hence my upcoming annual trip to the Mayo.

Hang in there. I hope you have a persistent local care team that will fight for that referral. My amazing local team were relentless until they got the referral.

Squeaky wheels, squeaky wheels!

[Twin59 in reply to Mrslacy]

Thanks!!