[KarolH]

Hi everyone,

Recently I posted about abnormal blood work that came back. My Rheumatologist called me at home the other evening to discuss the results and told me that I have to come into the office to discuss starting cumadine for blood thinning purposes. He said that the numbers for my APS/Hughes syndrome were off the chart and the daily aspirin is just not working.

I called my GI doctor today to make sure it was ok for me to go this route since I do not have a stomach due to severe ulcer disease. She is concerned with a bleed out in my intestines and told me to watch out for dark stools or anything unusual. If I notice anything go right to the Emergency Room.

Apparantly, It is now confirmed that I have Lupus, Raynauds, Hughes Syndrome and Sjrogens along with high antibodies of SCL70, indicative for scleroderma yet I have no signs of that as of right now.

The generic Plaquenil has reeked havoc with my intestines so they are switching me to the real Plaquenil. The doctor said that with out a stomach I may have issues with this too, and if so then we would have to look at IV Cytoxin, Methotrexate, or something else.

I googled cumadine and do not like what I am reading. Is anyone else on this drug? If so, can you tell me how often you have to get your INR checked?

I am venting here but I am so darn tired of health problems......as I am sure you all are too. I have 3 very healthy siblings, thank god, yet I sit here and ponder all of this and today I have found myself in tears. I am just so sick and tired of being sick and tired.

Sorry for venting but I just needed to let it out. I do hope you are all well.:wink2:

 

[keebler]

Karol,

You have so much on your plate right now.:there:

On how often you get your inr checked, I think depends on your labs when you get your inr checked. I am not on comundine , I am just going by how often my mom gets her checked. She was going every 2 weeks while the doc. adjusted her med. Now that it is where he wants it to be she has to go back in a month.

Take care and let us know how your appointments go.
:rose:
Lyn

 

[Blue*Mist]

Hi Karol, sorry to hear about all the trouble...

I'm on coumadin/warfarin for MCTD related APS with DVT's and PE's.
At the beginning of treatment it may be necessary to have an INR done once a week, then every other week and eventually every 4 or 5 weeks. I go once a month usually but lately its been way off as low as 1.7 and as high as 6.0. My range is 2.0-3.0 your doctor will decide what yours is... I've been having them done couple times a week for awhile, just can't regulate it.. But I can go 6-8 months with a good number each month... I strongly suggest getting a medic alert bracelet and I have alerts in my wallet... I can't take NSAID's. All of your family should know you are taking a blood thinner, all of your doctors and dentists. There are booklets avail with all of the helpful hints. I hope all goes well... Try to keep in mind that it is a life-saving therapy. A bit of a pain, but life-saving........

 

[Raglet]

I need to check my inr weekly as I have very unstable coagulation due to the lupus anticoagulant. This of course is a total pain, so I home test which makes life a lot easier. I have still clotted on coumadin (warfarin) which is a total pain in the whatsit.

Don't worry too much about the multiple dx-es as this is very usual with lupus. Most of us are dx with several syndromes along with lupus - this is because the lines between the various conditions are fairly arbitary so there are lot of overlaps.

BTW, having multiple diagnoses does not mean you have mixed connective tissue disease as MCTD is a separate disease in itself (and requires a high RNP). But of course if your rheumie has told you that you have MCTD then that's what you have. Generally a person has either lupus or MCTD, I have never heard of anyone being dx with both of them. I have low level RNP which my rheumie tells me is just part of my lupus (I am anti-ds-dna positive which gives me a definite lupus dx).

best of luck with it all

raglet

 

[KarolH]

Thank you both for your replies.

Raglet, I did have a high RNP antibody test on more then 2 occasions.

I can only tell you what the doctor told me and that was that I can not say I have just Lupus, now it is called a MCTD......for whatever it is worth.

Anyhoo, what is in a name??? He said it is important to mention this to other doctors and include all of the things I have been officially diagnosed with.

My Rheumy did mention he is not a believer in home INR testing and he wants me to go to the lab to have my INR checked. Your right, home testing would be so much easier. I will have to ask him why he is against home INR testing.

 

[Raglet]

Honestly, it doesn't make much difference in the scheme of things, they are very closely related diseases and are treated the same. I was just curious as I have never heard of anyone having both, it usually either/or. Low levels of RNP can be found in lupus, but high levels indicate MCTD. The way I look at it is that I have one disease process that the doctors struggle to give one name to so they end up giving me a bunch of names, but it is really just one disease process. The lines between the diseases are set very arbitarily, and overlaps are the norm. I am the opposite to you in terms of scleroderma - I have symptoms of it (mild) but no supporting antibodies (sclerodactyly of the fingers - sorry my spelling has gone on strike!). But it has not caused me any great problems. I also have Sjogrens and APS that I test positive to - plus asthma, epilepsy etc, but they are not part of my lupus. My reynauds is just part of my APS, and coumadin has really helped with that (I have not needed iloprost infusions for my reynauds since going on coumadin - yay, I hate iloprost).

The APS really does make sense though as it is usually APS that mimics MS, so fingers crossed going on coumadin will help.

Coumadin is a pain in the butt to be on, but if it helps then of course it is very worth while. Methotrexate makes sense in terms of the stomach, as it can be taken in injection form. Personally I found iv cytoxan very hard on my stomach (and still do - I have a dose of it each time I have rituxan) - it makes me very nauseous, but then again that wears off in a couple of days after each treatment.

Have you seen the Hughes Syndrome Foundation site ? Here is the link to it, it has a lot of great information on it.

http://www.hughes-syndrome.org/

This is a great site about warfarin (coumadin) although most of it is geared towards people who don't have APS.

http://www.warfarinfo.com/default.htm

it's a lot to take in at the beginning, but once you get down the road a bit fingers crossed that it all just becomes part of your regular routine.

cheers

raglet

 

[LolaLola]

Dear Karol, I have no experience of Coumadin, I just wanted to sympathise with how you feel. You will learn to cope with a lot of the feelings most of the time. I don't think any of us would claim we have completely got it under control all the time. Just cling to the thought that you will feel better, and lean on us.
x Lola

 

[Maia]

I read a study recently that found up to 25% of SLE patients will also test positive to the scl-70 antibody but not have scleroderma and lupus. Just lupus. But that's more than enough, huh?

The MCTD label may very well be the right one given the blood test results and signs and symptoms you have, but the real focus should now be set on treating your symptoms and improving your life. Hopefully that will happen very soon for you!

 

[Clare.T]

Here's an interesting article on MCTD which sums up the complexity and controversy about this particular diagnosis. Perhaps the vagueness and pointlessness of it too.:hehe: There are certain essential features notably the Raynauds and the swollen fingers as well as the anti U1 RNPs, and it is generally accepted as a mix of SLE, scleroderma and dermato/myositis. Thus it is odd to say SLE and MCTD. Note, not an MCTD. The term overlap might be more expected. APS doesn't enter into an MCTD diagnosis
​

http://www.patient.co.uk/showdoc/40001176/

I would be very interested to know how many specialists will have a clue what it is supposed to be ! A diagnosis is a way of conveying information to other specialists, a name given to a certain set of symptoms as decided by doctors and what problems might be found in future or what needs special attention.

I don't think aspirin is meant to reduce antibody levels but simply to help stop the platelets clumping. From all I have read, people can have very high levels of antiphospholipids and never experience any events from them. I would question being prescribed Coumadin if I hadn't had a stroke or thrombosis. I would also question being recommended Cytoxan if I hadn't tried a disease modifying med like Imuran or Cellcept. That's a pretty big jump! Of course these are my general comments, and there are always individual considerations and that particular doctor's clinical judgment.
Good luck with it all Karol. It's not surprising you feel overwhelmed since you have had a long hard journey and you're quite a complicated case I'd say.

I hope very much that you'll be feeling better before too long.

Clare

 

[KarolH]

Thanks to all who have replied here and to Raglet and Clare for the links. You have all given me some food for thought.

I had to laugh when Clare said I am a difficult case..........the doctor told me I was his challenge for 2008.:rotfl::rotfl::rotfl: