[KarolH]

Hi everyone.

I was dx with Multiple Sclerosis in 2005 yet I have always felt that I do not have MS and the doctors were missing something.

After recent blood work it seems Lupus is what my family doctor is convinced I have. I will be seeing 2 Rheumy doctors the end of this month.

This is what my abnormal results showed. If anyone can provide any insight it would be much appreciated.

ANA was positive.

ANA Reflex Panel showed...

RNP = 158
SCL-70 = 149

IgM was over 100 yet no specific number was given.

There was small amounts of Bilirubin found in my urine so they are going to do a Ultra sound of my upper right quadrant to look at the Liver, Pancreas, Gall Bladder and Biliary Tree ducts for any problems or blockages.

Feel free to throw opinions out if you can. I am anxious to pick the brains of the great people on this site.

Thanks so much for any insight you can provide to me.

 

[Raglet]

hi there

do you know the reference ranges for your test results ? You will find them on the paperwork. I don't know what the ranges for those antibodies are so I can't say whether those are high or low, though I do know that high levels of RNP are linked with mixed tissue connective disease, and I think the SCL-70 is linked to scleroderma, but it does depend on how strongly positive your results are.

Lower levels of anti-RNP can be found with lupus.

I think you probably need to talk to your doctor about your results - has anyone discussed your results with you ? Personally I think that getting results that you have no idea what they mean is a mixed blessing and often provokes more anxiety than it is worth.

hth

raglet

 

[LolaLola]

Please also make sure that you are tested for antiphospholipid syndrome. this is easily treated but can mimic the symptoms of MS. You can read plenty about Antiphospholipid antibodies?Hughes syndrome?sticky blood on this site.
Just a thought, I am not medically trained, just my own long knowledge of how Lupus and APS affects me and my Daughter.
x Lola

 

[KarolH]

Thanks for the replies.

I know that the SCL-70 should be Negative and mine was not.

I was told that a RNP above 40 is considered positive and mine was almost 160.

My Anticariolipin antibody test was over 100 which is also a strong positive too. This is the IgM test I spoke of.

I will Google Antiphospholipid Syndrome and learn more.....thanks.

 

[KarolH]

I just looked at some blood work that was done 6 weeks ago and I noticed that my Complement C-3 level is at the bottom of normal with a number of 90.

I do not know if this has anything to do with Lupus or may not be relevant at all.

It really is very confusing.:umm: :umm: :umm:

 

[Katharine]

Hey again Karol - you'll think I'm stalking you :lol:

Blood tests can be very confusing. Low C3 and C4 levels can occur in lupus. The thing is the blood tests can be soooo complex that many docs would have a job understanding them.

Mine have always been odd and never showed up classical positive ANA or anti dsdna but do show up other things which I try and understand but, at the end of the day, you can imagine all sorts of things if reading blood test results without guidance.

I must actually post about that thing that mine showed up...
Katharine

 

[KarolH]

Katharine,

It is nice to be stalked...:rotfl: :rotfl: :rotfl:

 

[Raglet]

normal is normal, whether or not it is low normal or high end of the range. The range sets out what numbers are considered not significant - actually often levels that are just outside the range are disregarded (the so called low positives).

Have you talked to a doctor about your results ? That is really the single most important thing to do, as these results really are very specialised and it takes a rheumie to interpret then within the context of the whole clinical picture.

hth

raglet

 

[KarolH]

Hi Raglet,

It is my pcp who just yesterday told me that in his opinion I have Lupus and we did discuss the blood test results. He has referred me to see a Rheumy doctor.

I have 2 appointments set up with specialists for the end of this month, the 27th and the 30th. I figure 2 opinions are better then one.

Normal, even if low Normal is still Normal...(boy was that a mouthful).

Well then that is good to know and it makes me happy.

Thanks for your input.

 

[Maia]

Only really knowing your blood test results, it appears to me that MCTD = Mixed Connective Tissue disease is a strong possibility for you too along with APS. Your upcoming rheumy appointments will have to interpret those blood test results along with your past medical history, exams, all the past blood tests and scans/procedures you've probably had done. Combine that with your current symptoms and come up with the best answer and treatment...

Do you have any of the symptoms of scleroderma? The other antibody that you tested high for is related to that, but also can be part of MCTD and found in other autoimmune diseases as well.

I'm glad you don't have long to wait for those appointments! Take care!

 

[KarolH]

Hi Maja,

I did notice that SCL-70 points strongly towards Scleroderma or Systemic Sclerosis yet I do not think I fit the bill so I would have to say I do not have many symptoms of it.

With Lupus, out of the 11 listed in criteria I have 9 of them yet this does not mean I have Lupus but I do have more physical symptoms of Lupus then Scleroderma.

Who knows..............hopefully the doctors will enlighten me on this.

 

[LolaLola]

Karol, Prof. Hughes used to say that a low C3 or 4 was significant if it tied in with a raised CRP. It can be a good pointer. Also the Shirmers (Dry Eye) Test was another one he put some weight to in less clear cases. Bone Dry eye results,(Even if you hadn't noticed before) can be a very good auto immune pointer.

Hope this helps rather than confuses you more.
x Lola

 

[KarolH]

Lola,

It does help and I thank you.

My Ophthalmologist did say I had dry eyes yet it does not feel like I do. He gave me drops to use 3 times a day but I never use them because they do not feel dry to me.

He made this assessment just by looking at my eyes but he did not do the test where they put the paper thingies in your eyes to measure tears.

I am sure the Rheumy doctor will test for this as well.

 

[KarolH]

Well, I went to the Rheumatologist Tuesday and he took 23 tubes of blood.

He said based on my symptoms and the blood test results I brought with me that he is pretty sure it is Lupus but he wants more blood tests to paint a clearer picture.

I go back June 4th for the results.

He did mention that it seems I have a type of Lupus that effects the Central Nervous system......................now that did not sound promising.

He mentioned Cytoxin, some drug used to treat me but not all Lupus patients.

Gosh this is all so confusing. I hear of everyone here talk about Plaquanel.

Sorry about the spelling......................is anyone here on Cytoxin or has been on it at one time? Apparently it is given through a IV needle...:worried::worried::worried:

 

[Katharine]

Hi Karol,

Cytoxin is used to treat lupus and many people here have had it. I'm afraid I can't tell you more as I haven't.

I would presume that he is suggesting that if you have more severe symptoms or for the CNS involvement. I can't remember all the details of your symptoms.

As for confusing, yes, it is but with time you will learn a lot and things will become a lot clearer. Even then, take it one day at a time

I'm sure someone more knowledgeable will be along soon..
Katharine

 

[KarolH]

Hi Karol,

Cytoxin is used to treat lupus and many people here have had it. I'm afraid I can't tell you more as I haven't.

I would presume that he is suggesting that if you have more severe symptoms or for the CNS involvement. I can't remember all the details of your symptoms.

As for confusing, yes, it is but with time you will learn a lot and things will become a lot clearer. Even then, take it one day at a time

I'm sure someone more knowledgeable will be along soon..
Katharine

No one has come along yet to chat about Cytoxin.

Any takers???:wink2::wink2::wink2:

Thanks Katharine and your right, one day at a time.

I thought I would hit the floor when the doctor suggested that maybe I have overlap syndrome, specifically MS and Lupus.

Someone pinch me and I will wake up from a really bad dream, won't I?

 

[Lily]

Hi Karol,

Cytoxan is sometimes used in combination with Prednisone to treat severe organ threatening disease to get it under control initially when first diagnosed. After the course of Cytoxan which is usually given as infusions in a hospital setting as an outpatient, they would start you on some disease modifying med like Plaquenil and because you have organ involvement they would also start something like Imuran or Cellcept to keep it at bay.

Some here have been on Cytoxan and perhaps a post in medications will lead to a few more first hand experiences.

I must admit that more recently it's use in CNS lupus has not been so prevalent, things like Cellcept or Rituxan seem to be more helpful from what we read around here. But your doctor will weigh everything up in your particular case once he gets those bloods back and then make a decision. It's wise to educate yourself as you are doing. Decisions need to be made with the patient being well informed and having good communication with their doctor. Don't be afraid to ask him any questions once you have all the facts.

Whilst I have CNS Lupus Cytoxan is not something I have had to resort to. I was already on Plaquenil and my CNS was treated with Imuran which is another (less potent) immunosuppressant. I can't tolerate Prednisone unfortunately which meant it took a bit longer for me to gain back my quality of life, but I did gain it back, so don't despair.

love
Lily

 

[Lily]

Hi again Karol,

I forgot to mention that often a condition called Antiphospholipid Syndrome (APS or Hughes Syndrome) can cause very similar symptoms to MS. He is probably testing you for it with the latest round of bloods. The treatment for that is either aspirin or if you have had a history of thrombosis/clots etc. then an anticoagulant.

This condition can be present with Lupus or as a stand alone diagnosis.

I too was seriously considered as a MS prospect at first, until they confirmed my CNS Lupus. The whole time I was negative for the APS bloods. So you can see that the diagnosis is a bit tricky when it comes to things affecting our Central Nervous System, but it sounds like you are well on your way to that now.

I wouldn't jump the gun on the mention of Cytoxan just yet, the final conclusion will influence which drugs they start you on.

love
Lily

 

[KarolH]

Hi again Karol,

I forgot to mention that often a condition called Antiphospholipid Syndrome (APS or Hughes Syndrome) can cause very similar symptoms to MS. He is probably testing you for it with the latest round of bloods. The treatment for that is either aspirin or if you have had a history of thrombosis/clots etc. then an anticoagulant.

This condition can be present with Lupus or as a stand alone diagnosis.

I too was seriously considered as a MS prospect at first, until they confirmed my CNS Lupus. The whole time I was negative for the APS bloods. So you can see that the diagnosis is a bit tricky when it comes to things affecting our Central Nervous System, but it sounds like you are well on your way to that now.

I wouldn't jump the gun on the mention of Cytoxan just yet, the final conclusion will influence which drugs they start you on.

love
Lily

Thanks so much Lily for your input here.

I did check the medications section of this forum for Cytoxin posts but did not come across any. I will Google it and I am sure come up with plenty.

My last blood work, which was limited in comparison to what he just tested me for..........came back showing a high IgM which apparently is or can be indicative of Sticky blood or Hughes syndrome.

I am sure when all of these latest results come in the pieces of the puzzle will come together.

Thanks again.

 

[Joandublin]

Hi Karol

There are lots of posts in the Medication Forum on Cytoxan. I noticed you were spelling it Cytoxin so that probably accounts for not being able to find them.

Have another go and let me know if you are still having problems.

Best of luck
Joan:rose: