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Discussion Starter #1
Ok, so the title to this thread is a little melodramatic - but im really fed up! This is going to be a long one so please feel free to ignore me (although any advice or comments will be gratefully recieved!).

Where do i start? Well, Ive been suffering from joint pains and tiredness for 14 years (am now almost 28) and still dont seem to be getting anywhere. I discharged myself from my first rheumy 9 years ago when he suggested that the pain i was in was caused by me being too flexible as a child (at that point i was only getting the pain on one side of my body) - obv im not a dr but it was so ridiculous at the time i didnt go back! The pain became much worse with time and the tiredness has developed to full blown fatigue. When i fell pregnant i happened to go to my gp about it and for the first time in my life, they really took me seriously (perhaps because i was pregnant). I had bloods taken at the hospital after seeing my rheumy and was called back in early as they had found something in my blood and wanted to repeat the tests. My rheumy didnt say what it was that they had found but said that whatever it was didnt mean that i had the disease it was connected with! She wouldnt give me the name of the disease, just said that it was a autoimmune and that i had a connective tissue disorder. I wasnt happy but she would tell me no more. When i went for the second set of bloods (8 months pregnant) im ashamed to say that i read the blood test form and it said that they were testing me for the lupus anticoagulant. I had never heard of lupus and had no idea what it was. I googled it when i got home (i know, its never a good idea) and i found this site. The symptoms of lupus match what im going through more then anything else ever has - even though i have confirmed with St Thomas' that you can have the lupus anticoagulant and not present with symptoms. I still dont have a diagnosis and my rhuemy wont tell me any more. Im reluctant to change clinics as i would have to tell them that i read the form and that ive pretty much self diagnosed myself.

More recently i have developed a rash on my cheeks that is worse when ive been out in the sun.....it is triangular but not always very defined (it was my hubby that noticed it first) and my rheumy has suggested i see a dermatologist - waiting for the appt now......im just so frustrated....i want to know whats wrong with me and i dont understand why my rheumy is being so cagey. At my last appointment she said that my bloods were good and that she only wanted to see me once more - in six months! It doesnt seem to bother her that my fatigue is worse then ever (hydroxychlorquine - plaquenil really upset my tummy so i had to stop taking it) and she has no suggestions as to how to manage it. Im a stay at home mum and i had such a bad flare yesterday (not much better today) that i could barely lift a finger.....thankfully my husband cooked dinner and dealt with our daughter so i could just rest.....even though he had been at work all day himself.....

Apart from admitting defeat.....does anyone have any suggestions? (I cant afford to go private!)

Thank you all so much in advance.....hope i didnt bore you too much!!

Mem xx
 

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Hi Mem and welcome :foryou:

I am sorry you are having such a rought time of it.

It doesn't sound good when your specialist won't talk to you about what he/she thinks is going on.

I also don't think it is such a big deal that you read your test results, after all they are YOUR results so I wouldn't be worried about that.

If it was me I would ask for a second opinion, or make an appointment myself with another rheumi. Or you could ask your GP to read your results and give you some sort of idea what is happening. Certainly you shouldn't have to wait another 6 months to maybe find out what is happening.

I am sure you will get lots of good information and advice from very experienced people on this forum, they are truly fantastic and I have found much support and friendship here.

Good luck and let us know how you get on.

:hug:
 

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Hi Mem :)

Welcome to the Forum. Im so sorry that you are feeling so poorly and frustrated with your Rheumy. Okay....where to start....

First of all with regard to your first Rheumy's comments on your being too flexible as a child - dont just dismiss this out of hand. There is now strong evidence to suggest that hypermobility in children can have a serious impact on their lives and has all the hallmarks of a connective tissue disorder. See this link for more information

http://rheumatology.oxfordjournals.org/cgi/content/full/40/5/485

Secondly the fact that your current Rheumy has already stated that she believes you have a connective tissue disorder and started you on Plaquenil is, to my mind, more than enough information for you to sit down and have a serious discussion with her. Im sorry that the Plaquenuil didnt work out for you as it is the base line drug for most people with any kind of connective tissue problems, including Lupus. Plaquenil is known for upsetting stomachs and many people start taking it slowly in small doses to increase their tolerance. Most of the gastro side effects go after a few weeks although everyone is different with regard to medications. There is an alternative to Plaquenil called Mepacrine (quinacrine in the USA) which is an older anti malarial drug and is used less often these days. However it can be prescribed but it needs to be got from a compounding pharmacy. It might be something worth considering and worth a chat to your Rheumy as an alternative to Plaquenil.

Thirdly with regard to this blood test 'that didnt mean you had the disease it is connected with', it sounds to me like you may have tested positive for the Lupus Anticoagulant. This test actually doesnt test for Lupus (confusing, eh? :rolleyes:). It tests for a condition known as Anti Phospholipid Syndrome (also called Hughes Syndrome). This is a blood clotting disorder and can sometimes be present along with Lupus or can be a primary condition in and of itself. The two tests they run are Lupus Anticoagulant and Anti Cardiopolin antibodies. They usually run the same tests again several weeks apart for confirmation purposes. Sometimes they can appear positive fleetingly (with no known cause) and not again so thats why they have to test several weeks apart.

However having these antibodies doesnt mean you will be diagnosed with APS either. Usually there has to be a clotting incident before a doctor will diagnose with APS. Here is a link which explains the condition. Have a look through it and see if anything rings a bell for you:

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

Fourthly, why are you ashamed to say you looked at the name of your blood tests? Please remember that it is important that you, as the patient, are as informed as you can be about your health and asking questions of a doctor is nothing to be ashamed of. You should definitely stiffen your spine for a good conversation with that consultant! I would suggest that you start keeping a written record of your daily symptoms and also get yourself informed about connective tissue disorders (of which Lupus is one). This site is a great place to get information. Just before your appointment, summarise your record and tell your Rheumy that you need to discuss your symptoms, what might be causing them and what symptom relief you can get if you havent yet got a diagnosis (although having CTD is a diagnosis in itself by the way). There are other drugs that can help with relieving inflammation such as Non Steroid Anti Inflammatories (NSAID's). There are a huge range to choose from and your Rheumy might prescribe something for you. Although be warned, some of them are hard on the tummy as well.

Be honest and up front with your Rheumy. Tell her that your symptoms are leaving you extremely debilitated and let her know what you are prevented from doing because of them.

Take a picture of your rash when it is present and show it to your Rheumy and dermatologist. By the way a dermy can diagnose Lupus through a skin biopsy so its good that you are going down that route as well.

It would be good for you to check out the criteria for Lupus. Here is a link to it on this site. Again, look at the information and see if anything rings any bells. Sometimes things that seem unrelated can be all connected together:

http://www.thelupussite.com/forum/showthread.php?t=33123

Finally can I say that getting a diagnosis of Lupus can have ongoing repercussions. For one thing, it is impossible to get life assurance or mortgage protection. Could I suggest therefore that, as you are so young, you might consider getting all this done now before you get any diagnosis? I dont want to frigthen you or anything but insurance companies are extremely cautious and do not generally take known risks.

I hope I have been of some help to you. The bottom line is that you need to take a deep breath and steel yourself to go forward. Autoimmune disorders are very complex and often people are years getting a diagnosis. You have to stay determined to get to the bottom of your health problems. You are far too young to be feeling the way you do and the sooner you decide that you are not going to stop until you find answers, the better it will be for you. Think of your health as a priority project and deal with it that way. Keep records of everything, get to know as much as possible about what your body is telling you, when it hurts, when you are fatigued, when you get rashes, etc. Lots of people with Lupus are photo-sensitive for example and exposure to sun can bring on rashes as well as other systemic symptoms.

Make sure that your Rheumy checks your urine and Blood Pressure as well at your appointment. If she doesnt then I would be concerned about her.

At the end of the day if you are not happy with her you can possibly talk to your GP about this and see if he/she will support you in a new referral. By the way if you have a good GP you could make an appointment with him/her and get him to find out and explain what testing has been done and what the hospital are saying at this time.

The very best of luck and let us know how you are getting on.

.....and you thought your post was LONG! LOL
.
Take good care
Joan:rose:
 

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Hello again Mem,

I'm sorry you are feeling so bad for the moment. It is so frustrating I know :(

Some of what you described with your rheumy actually makes perfect sense -what she said about the bloods. The lupus anti-coagulant blood test is, in fact, very badly named as it is not a test for lupus but a test for APS (otherwise called Hughe's syndrome or sticky blood). That is extremely important when pregnant as it can lead to miscarriages etc. and would need careful monitoring and treatment with some kind of anti-clotting medication. In order to get an APS diagnosis those bloods have to come back positive twice - usually 6-12 weeks apart and docs will also look for other clinical symptoms of the disease such as headaches, TIA's etc. I'm not too clear from what you said whether you did or didn't recieve an APS diagnosis.

It is quite frequent for lupus patients to also have APS but APS can also exist independantly from lupus. As with all auto-immune diseases, some of the symptoms are overlapping which further confuses things.

All that said, it does sound like you have quite a few lupus like symptoms - and, indeed, it sounds like the rheumy also thought so as you were put on plaquenil. It's a pity it didn't suit you as that would be the first line of defence in most cases. You might want to ask about possibly trying another anti-malarial called quinacrine (or mepacrine). You could also ask the dermatologist about that. There are also other drugs, such as immunosuppressants which may be able to help but they are generally not given unless the bloods show a need for it or in cases where people can't take plaquenil and can't get symptoms under control.

It is excellent that the rheumy has suggested a dermatologist. Lupus can be very difficult to diagnose and any good rheumatologist wll not diagnose it lightly. It can, for example, have insurance implications etc. The dermatologist may be able to do a skin biospy which can clinch diagnosis where the bloods are lacking (this was my case).

It would be a very good idea to make sure you photograph the rashes that you are getting. They have a nasty habit of disappearing just when you go and see the doc.

Also, when talking to doctors you need to really get through to them how bad things are. Saying "it hurts" is rather a vague notion to them. However, if you say, "I can't do my shopping because I can't bear to stand on my feet at the checkout" it does make them see just how bad it is. We often don't complain enough as we get used to putting a brave face on things. Some people find that having support from a partner during appointments is helpful. Let's face it, we have all suffered from white coat syndrome at some stage and left the doc's office wishing we had remembered all those other things that we didn't say. Having someone else there supporting what you are saying, reminding you, and getting it through to the doc that they don't think it is in you head can be very useful.

I hope that helps a little,
keep smiling, hugs :hug:
Katharine
 

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Discussion Starter #5
Thank you all so much for your replies.....it really helps to have somewhere like this that i can come and talk to people who understand and who have the knowledge that i lack!

So much of the stuff that you have said is new to me - like the Anti-coagulant test not actually testing for lupus! That would explain why they were so keen to see me so quickly (being pregnant).

I havent been diagnosed with APS, the only thing my Rheumy has told me is that i have a connective tissue disorder but that my condition was borderline - although borderline for what she wouldnt say. I appreciate now from your replies that i am expecting too much in some respects......just because lupus really fits my symptoms its not definate that i have it and although i dont want to have it, i suppose that i hate not having a firm diagnosis......i think i maybe need to give my rhemy a bit of a break but also need to make sure that im getting across to her how debilitating this is! Today for example i could barely life the bottle of fabric softner to the washing machine! Silly everyday things that this stupid body wont let me do!

Sorry for moaning....just feeling a bit down! Thank you all so much for your help, i REALLY appreciate it.

Mem xx
 

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Hi again Mem

No need to apologise for 'moaning'. You have every right to express how you are feeling. I hope you will take on board the need to put yourself first and insist on help with your symptoms while the experts may be trying to work out what is going on. Just make sure you dont let them off the hook though! Your Rheumy hasnt been very communicative and thats a problem. You need to change that and start asking questions.

The best of luck with the Dermy appointment and do keep in touch. Its important that we all learn from others experiences. Feel free to ask any questions or vent whenever you need.

Take care
Joan:rose:
 

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You have had some good informative responses here. The only thing I would add is to make sure you take some photos of that face rash when it flares up. If you do get referred to a dermatologist then you can be sure there will be nothing there to see when you finally get an appointment! I've gone through the frustration of seeing three different dermys at clinic appointments over two years, and only one of them ever seeing the butterfly rash full on. She was the one who was dead sure I had lupus - the others have totally dismissed the idea as they haven't seen it like that. I have now been taking photos so that if I do go back to either dermy or rheumie then I have something to show.
 
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