TheLupusSite.com banner

1 - 13 of 13 Posts

·
Registered
Joined
·
276 Posts
Discussion Starter #1
Hi everyone hope you are all doing good.:)

Just to let you know I had my rheumy appointment last fri 7th nov and not sure what to make of it!

Rheumy not sure still what's going on because other than low lymphocytes and elevated RF my bloods aren't showing anything! They clearly see my signs and know my symptoms but aren't sure. Anyhow she did say that if I had Fibro as they tried putting things down to they would have discharged me back to my gp long ago but as things are happening I need to stay under their care.

The rheumy examined me after going through what's been happening since last visit. She went to get the main rheumy who's team she's in to come and look at my skin?
My legs were very 'corned beef ' like in appearance as usual but I also have new sores on my toes on both feet! The other rheumy said that they looked like chillblains:eek:
The first rheumy was also concerned that she couldn't move my left foot around the same as my right. I told her that I had pain in that one but she wondered if there maybe some inflammation there.

Any how the other rheumy who came to see me also said that I needed referring to the CTD clinic so that I could have a group of various consultants looking at my case:worried: If any of you have any such experience at these places I would be interseted to hear what happens.

He also asked for x-rays on my hands as they were still very sore and discoloured.He also mentioned an echocardiogram which I'd forgot about until this mornings post arrived with an appointment for the 24th of this month. Is this straight forward?
Why would they have ordered an echocardiogram for me?

I too received an appointment for his clinic for the same day so it seems I've been taken from the other rheumy and gone back onto his list which I originally was on for the first rheumy appointments I had.

Oh my it seems like such alot is happening!:hehe:

Just to mention they also gave me a steroid injection into my bottom cheek. They both said that it would be quite telling if this gave me some relief from the pain and symptoms and that they'd need to know next time in clinic. Why?

I'm pleased that it did seem to work within the first few days but just yesterday things have started creeping back. I would have thought that if it was to work it would have lasted longer? Do these injections not work for that long? ( I think it was a depo-medrone injection)

Thanks as always for letting me go on:lol:
Hope you all have a great weekend.

Mrs M x
 

·
Registered
Joined
·
7,800 Posts
Hello Mrs M,

All I can say really is that for many of us, diagnosis was not at all straightforward and it can take a great deal of time. However, I would say that your appointment went very well and it seems that they are taking your problems seriously and are prepared to look into treatment options.

The echocardiogram is very straightfoward. I think that most of us have had it at some stage or other to rule out any heart problems.

It sounds like they are being very thorough in their examinations and I'd say that a referral to a CTD clinic is also a good idea though I have no experience of such a clinic myself. I know one other member here started attending a new CTD clinic and found it excellent. The idea of having a whole team involved in your care is definitely a good one as they can then find far better treatment and also see the "whole picture" more easily.

I hope it all goes well for you anyway. It sounds like the beginnings of getting somewhere!! :)

Katharine
 

·
Registered
Joined
·
2,404 Posts
The corned beef look of your legs is probably livedo reticularis. If you do a search on this site I expect you will find some info.
As Katherine says Echocardiogram is very simple indeed, and it is always a useful piece of screening to have done.
I am sorry I am so tired today I am not much help.
xLola
 

·
Registered
Joined
·
15,684 Posts
Hi Mrs M,

As frustrating as it all is and boy do we identify with that feeling :hugbetter: it does sound like they are taking things very seriously and are looking after your best interests so far.

I have had steroid injections in my butt before and they have helped after about 24 hrs but have worn off completely after 2 weeks. I'm sure everyone is different in the amount of time they get relief for but that was just my experience. It was bliss for a couple of weeks though. Important to tell them what has transpired. I guess it also depends on dosage and things too, but they aren't reknowned for lasting a long time if you are flaring. Not like the steroid injections some people get directly into a joint, they seem to get months of relief, but when you are treating systemic inflammation and not just one spot those joint injections are no good to you really.

Good luck with your ECG (which is probably just precautionary and them being thorough) and appointments. Do let us know how you get along.
love
Lily
 

·
Registered
Joined
·
594 Posts
Hi Mrs M,
Sorry tou are feeling so awful but am glad that you are getting somewhere.
Yes the echo is just to rule out any hert problems it is an ultrasound scan of the heart and also measure oxygen lebels in the blood coming in and out of the heart.
You just lie on a bed with your upper body unclothed and have a couple of sensors put on and them a small sanning device is to take pictures of the heart. Takes about 20 mins.
I also have livedo reticularis too mine is quite sever too.
I have also had the depo injection, it took about a week for any benefit to kick in and it was just enough to take the edge off as I was very bad when I had it I did not feel better but it just made me stop feeling lke I was going to go crazy if things just didn't get a little better. Yes it lasts a couple of weeks or so.
Hand x rays are just to cheeck for any changes in joint in hands or feet.

Good Luck with everything

I really hope you feel better soon

Cassie :)
 

·
Registered
Joined
·
276 Posts
Discussion Starter #6
Hi Guys:)

Thankyou so much for your replies. Without your knowledge and generous thoughts I wouldn't know a thing about what's going on!

I'm pleased to hear Katherine, Lola and Cassie that the echocadiogram is straight forward;)

Lily I will definitely be letting the docs know how the injection went. I just wish it could have lasted longer because as I said the first 5-6 days I felt a real improvement in how I felt. I never felt 100% but it was sure better than I'd felt in a long time!

I will let you know how the next couple of appointments go.

Many Thanks for taking the time to read and reply:)

Mrs M xx

Ps Hope you're doing ok Lola and tired or not your always of help.:wink2:
 

·
Registered
Joined
·
276 Posts
Discussion Starter #7
Hi All :)

Just to say echocardiogram went fine and they said everything looked fine. Pheww!

I had my appointment at the CTD clinic on Monday and I was so bamboozled:eek: I wasn't aware that the appointment was for that so to walk into a room and see 4 docs all staring at me was simply scary. I'm sure I didn't mention everything but am sure they would have known what's been happening.

The immunologist said that they think I have urticaria and not a CTD. They prescribed Cetrizine 10mg twice a day. I was told that not to worry about the dose being high and to give them a go and hopefully feel the benefits. I said that I was pleased that I would soon feel better but then another doc who seemed really nice said that I may not feel any better or maybe these antihistamines will solve the secondary problem and have a knock on effect with the primary problem? Or they could just sort me out full stop?

Oh my I'm so confused what they're going on about. :rolleyes:

If you have any thoughts or info on urticaria please let me know.

Many thanks
Mrs M xx
 

·
Registered
Joined
·
2,661 Posts
Hi Mrs M,

I'm not sure what to make of your appointment either:eek:. You must indeed be quite confused.

Urticaria is a symptom. It is just the technical term for itching. Do you have itchy skin?

I wonder if they might have been wondering if you have a mast cell disease called Mastocytosis. This is a severe form of allergy to one's self (not an autoimmune diesease but actually a sort of extremely slow progressing abnormal cell prolifferation ). It causes itchy shin and hives, hyperreactive airways, GI upsets, low blood pressure and frequent anaphylaxis in some people. It is not curable, but can be controlled with antihistamines. In my diagnostic journey my current rheumatologist thought I had this initially. It is able to be diagnosed by measuring a special sort of cell in the blood which I've forgotten the name of:sad:, but will look up for you.

If they really think you have this, you should be refered to an allergy specialist for propper testing and diagnosis.

This is only my guess, as it doesn't sound like they gave you much information either:eek:. Do you have a follow up appointment?

Here is a link about mastocytosis:

http://en.wikipedia.org/wiki/Mastocytosis

and
http://www.emedicine.com/derm/TOPIC258.HTM

I hope that things do get clearer for you in time:(:blush:. And also that the antihistamines help:blush:

X C X
 

·
Registered
Joined
·
276 Posts
Discussion Starter #9
Hi Cath and thankyou for your reply:)

I've read the links and still a little confused but maybe if I read through it again I will digest it better:lol:

In reply to your question about itchy skin, I do suffer with lesions on my toes and fingers and they do indeed itch at times. I wouldn't say though that the itching is a problem but more the joint pains, tummy upsets, tiredness, headaches etc...

I will be having a follow up appointment with the CTD clinic although one of the rheumy docs wanted to refer me back to rheumatology but another doc said that he wanted to see me back with them in a couple of months!

Just to say they didn't give me any info at all and that's what's so confusing:hehe:

Can I ask is it possible to have had urticaria for a year? I started with weight loss ( 2 stone ) a year ago and then Feb this year I started with the lesions and they have persisited all this time. In between numerous other symptoms which have been ongoing:(

Many thanks for reading.

Mrs M xx
 

·
Registered
Joined
·
2,661 Posts
Hi Mrs M,

It really does all sound quite unsatisfactory. At least though you have a follow up appointment.

I think it would be worth your doing some homework about mast cell diseases, and going prepared to the next appointment ready to demand that they either do the right tests for mastocytosis and confirm it, or exclude it and go back to looking for a CTD.

It is quite posssible to have mastocytosis for a year. It is chronic, so like lupus it is usually for the rest of your life. I have to say some of your symptoms seems to match and some don't, so whilst it is worth considering, it may well not be mastocytosis.

No-one has yet biopsied the lesions? That really should be on the list of investigations. It could be very helpful in reaching a diagnosis.

There are mastocytosis support groups you might want to visit - see whether you and your symptoms are a good match with what the others are going through. I found this quite helpful, although for me it was clear they didn't have the same disease as me.

http://www.tmsforacure.org/aboutus.shtml

There is apparently one in the UK - see the link to info above

The blood test mane I couldn't remember is tryptase . You'll see more about it in the info on the above link.

Hope this helps,

X C X
 

·
Registered
Joined
·
276 Posts
Discussion Starter #11
Hi Cath

You are such an enormous help;)

If only the docs could take their time to explain things. I will definitely go and check the other link out you have listed.

Have a great weekend and hope you are well.;)

Mrs M x

PS forgot to mention but I am with a dermatologist on the 9th December and the docs said that they would probably do a biopsy of the lesions on my fingers. Let's wait and see if anything becomes more clear then.
 

·
Registered
Joined
·
14,661 Posts
Hello Mrs M
I am glad you are getting somewhere, even if it isn't at all clear where yet. Maybe their letter to your GP will be more informative. Doctors don't have the time to go into any but the briefest explanations, even if they want to.

Sorry if it has been mentioned before ( I haven't read back over your posts) but I wonder if Hypocomplementaemic Urticarial Vasculitis might be relevant by any chance.

See
http://www.emedicine.com/derm/topic449.htm

and we have threads about it on Related Conditions Section

Presumably they have tested your complement levels.

I hope the dermy does do a biopsy because it could be very revealing.
I very much hope you will get some firmer answers soon plus whatever treatment is most likely to be helpful

All the best

Clare
 

·
Registered
Joined
·
276 Posts
Discussion Starter #13
Thanks Clare

I have had urticarial vasculitis mentioned by my GP and the Rheumy several times as a possibility to what's hppening but they've dismissed it with every blood test result that's come back. I presume none of my bloods indicate that but to me it dose fit?

Maybe low lymphocyte count and slightly high RF isn't an issue with this?

Have a good weekend:)

Mrs M x
 
1 - 13 of 13 Posts
Top