[KarolH]

Hi Everyone,

I am not sure if you remember but I had this lump come out in my arm, sorta like a swollen lymph node and my pcp recommended I go see a Hematologist. I had been to this specialist before back in 2005 when my "T" cells were going crazy and they thought I had Leukemia. Obviously I was cleared of that thank god.

So, he came into the room and told me that he took some time looking over my blood work from the last 6 months that I provided to him for his review. The first thing he said was that he was EXTREMELY CONCERNED at how high my Cardiolipin IgM and B2 Glycoprotein antibodies are and he asked me what medicines I am taking. I told him about Plaquenil and a daily aspirin for thick blood. I also let him know about my surgery last year to remove my stomach and that the aspirin everyday is really starting to bother my intestines.

He mentioned that he thinks I need more then just a aspirin a day and without having a stomach he feels I should be on a IV immunosuppresent. He did not give me detail more then this. He told me that he is a "blood" doctor and that I should really be treated by a Rheumatologist for this disorder and I told him that in fact I am seeing a Rheumatologist. He feels I need to see one that has special knowledge in treating APS along with Rheumatology.

He then told me that he thinks along with APS I have either MCTD or Lupus...and I told him that I did in fact get the dx of Lupus in June. He asked about my Multiple Sclerosis and I told him that diagnosis was replaced with Lupus.

So, he feels the lump in my arm is a similar event to what happened in 2005 and he called it Lymphcytosis.................or something like that.:blush:

He basically is not worried about the arm and did not pay it much mind yet told me I have got to get on something stronger then aspirin daily to get my APS under control as my numbers are through the roof.

I left todays appointment happy that the lump in my arm was nothing to worry about yet I was really not worried about my anti body numbers that much until I saw him.

It has been a whirl wind of a day for me and now I am off to google and see what I can find out about APS and IV therapy. I just thought most APS patients took a aspirin or a blood thinner and called it a day.

Not sure why I can't just pop a Plavix or Comidine and call it a day too???

I do hope you all have a great weekend!!!:wink2:

 

[Raglet]

I am a bit confused here coz as far as I know there isn't a correlation between clots (which is what APS treatment is trying to prevent) and level of antibodies. Higher isn't necessarily worse, and the levels tend to bounce around a lot in my experience. This is what makes inr control so difficult as it also takes the LA into account which keeps leaping around making the inr leap with it. My problem in a nutshell. Also, immunosupression doesn't work for APS, so I am not sure where he is going for that so I guess I am wondering how much the hematologist you saw knows about APS.

I do know that the autoimmune disease most often confused with MS is probably APS rather than lupus/mctd etc, which could make sense for you. Depending on where you live, most rheumies are very capable of treating APS. Trying you on coumadin could be a possibility - have you had any clots previously ? Coumadin is a mixed blessing, it can be helpful but all the testing is a total pain. Actually I have still clotted on coumadin come to that, which is a total pain, but there is nothing more to be done.

What a confusing appointment - after appointments like that (when doctors say that other doctors should be doing all this stuff that they choose not to do themselves!) I always go an see my rheumie and see what she says as I have a lot of faith in her opinion.

good luck with it all

raglet

 

[KarolH]

Hey Raglet,

Thanks for your reply. Now I am scratching my head too. After my surgery last year to remove my stomach while I was in ICU I was fine. The next day when they moved me into a step down unit I could not breath. I was told I probably had a blood clot in the lung or a PE as they referred to it.

The Hematologist did tell me that he does not treat this and it should be a doctor who really knows APS. He said not all Rheumies know APS well yet obviously he does not know it either!:rotfl::rotfl::rotfl:

I will continue to let my Rheumy doctor treat me. I went today for a lump in my arm and came out confused as ever.

Thanks for your knowledge and enlightening me here. I will be calling my Rheumy doctor on Monday. I have only been on the aspirin a day therapy yet it is really starting to cause intestinal issues so it will need to be changed up a bit.

I hope you enjoy your weekend.:wink2:

 

[Maia]

Hi Karol,

This is definitely something to mention to your rheumatologist - the aspirin being difficult for you to take and what this other doctor said to you about your antibody levels concerning him they are so high.

Were scans done and was a Pulmonary Embolism actually diagnosed? If so, then it would make sense to be placed on warfarin or an injectible blood thinner like heparin depending on what your non-stomach can handle. If it was not diagnosed, then the fact that you have not yet had a clotting event leads most rheumatologists to only suggest the aspirin a day preventive route since the majority of people with positive ACL antibody results will never have a clotting event. And there are risks to the clotting medications which generally speaking outweigh the benefits of the stronger-duty clot preventing medications when taken over the long term for those who have not yet had a clotting event since statistically speaking, they are not likely to have one!

Your particular case is unique of course, with the lack of stomach causing increased difficulties taking the aspirin, and the severe MS type symptoms. Some APS specialists may decide that the risk of treating with warfarin/heparin is worth it. A blood clotting event may have been responsible for losing your stomach from the description I'm remembering of the events and appearance of your stomach when it was decided to take it out.

When is your next rheumy appt then?

 

[LindaMo]

Hi Karol

apart from speaking with your consultant, I have no advice for you - I'm not really qualified.

But I did want to say, that I'm thinking of you, and that I hope you get some straight answers soon!

Big hug!

 

[lazylegs]

Hi Karol,

Glad to hear that the lump on your arm didn't turn out to be anything of great concern. I hope you manage to get all the other things sorted out quickly.

Take care,
Lazylegs

 

[KarolH]

Thanks for your replies here.

Maia,

No, a scan was never done so I do not know for sure that I had a PE. In my notes it is written suspected PE. My next scheduled Rheumy appointment is beginning of November yet I will call on Monday to let my doctor know about this past weeks events.

Your right about the lack of a stomach causing unique concerns. Doctors now think that the lesions on my brain, loss of vision, and yes...the issues with my stomach may all be due to Lupus and APS combined.

Whatever the case may be I am sure that they will place me on a medicine that will do it's job and be easier on my intestines.

Thanks for your input here. It is greatly appreciated!:wink2:

 

[Blue*Mist]

Hi Karol,
I'm no expert but it doesn't sound like you had a PE, thankfully. I really think you would remember it... but perhaps not...
I had one about 8 years ago, couldn't breathe, chest pain, heart beating out of my chest.. The testing and diagnostic portion was very frightening, I was whisked away for a lung scan, a nurse had to go with me and stay in the room... They rather abruptly explained what was going on, they started heparin, sticking me for bloodwork and IV"s. I had ultrasound on both legs and arms, put in air boots and shipped off to an ICU for 48 hours and told not to get up. It was horrible.. Having worked in hospitals I knew by the way they were moving and doing stuff that this was a bit of an emergency.. 10 days later they sent me home on Lovenox to inject for a few weeks and Coumadin for the rest of my life as this was my second clot.. The INR stuff makes me nuts... Every once in awhile my blood goes 'flukey' as APS does and we have been trying to get my levels in good range for 3 weeks.. I've been having bld drawn every two days... Pretty much my blood does what it wants despite meds...Its a pain.. I hope you get to the bottom of this very soon...

 

[KarolH]

Thanks BlueMist,

Well I think your right because I did not go through anything like you did. I surely would have remembered that.

I did not have chest pain at all...............I just could not breath and my heart beat raced to dangerous levels.

Thanks for your reply here.

 

[Mrs M]

Hi Karol

Just wanted to say that I'm glad the lump on your arm isn't anything to worry about but golly what a confusing appointment indeed!!!!!!

I hope you manage to get through to your Rheumy and see whether he has a different take on things and can hopefully set things straight.

Hope you're keeping well other than this hiccup

Mrs M x

 

[KarolH]

Thanks Mrs. M,

I am just calling it another day in the life of Karol.........ahhh, as the saga continues.:rotfl: