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Hello. Went back down to London and saw Dr Edwards. My bloods came back normal but because of my history he thinks it could be CTD or MS and it's worth trying things to see if it helps. First I'm trying plaquenil for 3 months and aspirin. If that does nt help heperin for a month followed by immuno suppressants if that does nt help. I m hoping the first will help as I hate needles but I have noticed I've come up with blisters/rash on hands that really itch ( and look horrible) since taking plaquenil. Not sure if it's the sun coming out or plaquenil or just one of those things.
Can you have CTD with nothing showing with in bloods?
Have a good day.
 

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purplesnowflake;542596 said:
Can you have CTD with nothing showing with in bloods?
Hi

Yes you don't have to have positive ANA to be diagnosed with a CTD. However, my impression is that there are usually some oddities in bloods - eg low WBC, high CK or auto antibodies etc - although it may be a bit hit and miss detecting these.

During the first few weeks of taking 200mg per day of Plaquenil I had hives type rashes. I believe this is fairly common and stopped after about three weeks. If the rash is very severe, I suggest you contact your doctor for further advice.

Take care

Merle
 

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Hello Purple Snowflake, Isn't Dr. Edwards a sweet man? I hope you will do really well on treatment. If it does come to injections they are not bad. The syringes come all ready to go, you just pick up a bit of skin and go for it.
I had to have Clexane injections for a while recently. Honestly it is not bad, virtually painless-but you may not even need them.

x Lola
 

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Hello there :)

It's great that he has decided to treat you in some way. I have heard that he's an excellent doc.

Yes, it is possible to have CTD or even SLE without positive bloods. However, as Merle said, there are usually some other abnormalities showing (ESR, CRP, white blood cells...).

I am one of those with negative ANA and other auto-antibodies. I had difficulty getting diagnosed initially as my only "odd" bloods were things like RF once at 50 (not terribly high), CPK rasied (bit "not enough" for a dx), lymphocytes out... that sort of thing.

We have now discovered that when my disease is "active" I have high C3d and C1q which are very specific circulating immune complex tests that would't normally be done (certainly not by the GP and not even by the rheumy at first). I was eventually diagnosed via a very conclusive skin biopsy.

In reality, with the accurate ANA tests they have today, the percentage of ANA negative SLE sufferers is said to be between only 2 and 5%.

Anyway, what is really important here, for you, is that you are being taken seriously and that he is going to try to give you some relief :woohoo:

Katharine
 

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I am really pleased that you had a good appt and that you have various treatment options to try. I hope that they work for you. It is so nice to be listened to and taken seriously.

Take care

Deb
 

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You asked if it was possible to have CTD and not have labs? Yes, it is. I have never had a positive ana, but positive anti ds dna, acl, aps. But I have been dx with sle for 20 years. I have a lot of other things that are positive sle so don't rely totally on labs.
In my opinion, any doctor who relies only on labs is not one I would put a lot of trust in.

At the beginning, many doctors are reluctant to use the "L" word and go for other labels first. As time goes on, often they find that lupus is the right one. There are also those who have "incomplete" lupus with a couple of the sle symptoms, but not totally there. The majority of people will move on to developing sle.

Good luck and I am glad for you that you are getting the care you need.
Sally
 

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Hi Purplesnowflake,

It is great that your rhumey has a plan. It is wonderful that he is trying to give you relief.:)

I hope you get to feeling better soon.
Love,
Lyn
 

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hello

I find emla cream works for me SOMETIMES. Not for clexine jabs or B12 injections think there is something in it which stings me soooooooooo bad you could scrape me of the ceiling:eek::eek::eek: I dread the b 12 every 3 months the nurse thinks its the preservative they put in that causes the stinging emla stops me feeling the needle but its whats in it that stings like mad even tried doing the jab slowly seems not so bad.

so try emla It might help you
take care:)
 
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