[Shadow girl]

Had a rheumy appt today and was discharged from the clinic. The results of all my last lot of blood tests had gone back to normal ranges except polyglobulin which is rising. He also reffed me for physio and suggested I start taking plaquenil (not sure of spelling) as my wrists are currently swollen. He said if things flare up he will be happy to see me again and that 50% of people in my position go on to develop a diagnosable connective tissue disease. Basically, the bottom line is I should just go away and see if it gets a lot worse.

My bone scan showed a hot spot on my jaw but he made no suggestion as to whether I should do anything about that or not.

So now my symptoms are:
ongoing low back pain
intermitent inflamation shown in blood tests
Intermittent low lymphocyte count
chronic depression
cluster headaches
rising polyglobulins (not sure of exact word)
livedo reticulus
chronic fatigue
muscle pain and cramps

but I don't think I have butterfly rash (though I do go red a lot in the winter)
I do get a couple of mouth ulcers a week but I've never mentioned it because they go as quickly as they come (they often only last a few hours)
I don't have other strange rashes - but i did once for about 3 years then if went again and so far has not returned.

I am glad its nothing definately nasty, but I don't know what to think now. Should I try the plaquenil? Have I been imagining it or making it worse in my head?

I sort of feel a bit abandoned with all my questions.

 

[Katharine]

Hi there,

I'm sorry you feel abandoned and obviously your doc might need to learn a thing or two in the communication line.

There are two good things I see in this. One, he did say he'd happily see you again if things got worse. Two, he did say you should start on plaquenil which is the baseline medication you would be put on for lupus and many other auto-immune diseases. It is a disease modifying drug and, although slow to take effect, is the very best medication anyone can start on.

He may not feel he has quite enough criteria to diagnose you officially with SLE but by putting you on plaquenil he is treating you as if you had it. An official diagnosis is not all good. Especially insurance wise. For example, I can no longer get any loss of earnings insurance as a self-employed person due to my diagnosis. I can also not ever buy a house again on my own as no bank will give me a loan without insurance for the "balance due" in case of accidental death etc. and of course, I can't get that insurance! That would be all fine and rosy if our current house was big enough (which it isn't) and will still be all fine and rosy so long as my husband and I stay together as he can get the insurance (not that we're thinking of not doing that, but having been through one divorce, you do think of such things).

Anyway, what I'm thinking is - If this is a new doc, maybe you just need time to build that communication up a bit.

I would, however insist on getting a referral for that depression if your GP feels he can't treat it himself. It is a recognisable part of lupsu and other disease and needs treating like so many other things.

I'm sure I've missed something here, hopefully someone else will complete the picture.

Katharine

 

[Shadow girl]

Thanks for that katherine. You are right of course. Those are positives.

I suppose I am a little oversensitive to abandonment if I'm honest. Just 3 weeks ago psychological services discharged me back to just GP care as well. I do feel abandoned by them as they wouldn't even refer me back to a CPN for a little ongoing support. My GP will refer me back when she gets back from her hols but I'll be back at the start of the waiting process so its probably just a waste of time.

I just want to know how bad things have to be to get a dx or ongoing support or anything. Todays appt has really thrown me. My mood was already deteriorating and my pain has been worse this last week or so. I didn't want to be discharged without an answer.

 

[Mrs M]

Hi Shadow girl

I can't really had much other than to say I know exactly where you're at!
I feel pretty much in the same situation. The last couple of times of seeing GP I've felt really let down as he can't seem to give me answers and his reluctant to suggest anything to help! Rheumy is still looking at things but every time I go he doesn't seem to want to commit so I come away feeling low and confused. None of us want to be poorly but just knowing that it's not in our heads I'm sure would help.

Please keep your chin up and don't give in. I've come to believe that it is ourselves that know our bodies better than anyone so don't give in and I'm sure things will work out.

Take care
Mrs M x

 

[Maia]

It doesn't necessarily have to get "worse" than you feel right now, it's more a matter of meeting enough diagnostic criteria for your physician to feel comfortable writing in a diagnosis given the serious ramifications a lupus diagnosis can have. At this time, you very well may qualify for a UCTD diagnosis or inflammatory arthritis (basically RA=Rheumatoid Arthritis) minus positive bloodwork) depending on your symptoms and bloodwork results.

I would definitely start on the Plaquenil, and have your GP continue to test your blood periodically (every 6-12 months) in case something changes (positive ANA or other positive bloodwork indicators). I would also want to find out what that hot spot was likely to be (by asking your GP or requesting this rheumy to call you back with an explanation for what that could be).

I've not heard of polyglubulins before and a very quick Google search really didn't turn up much that seemed relevant.

I'm sorry that you haven't gotten any definitive answers, but at least now you've gotten some treatment that just may help. I hope you'll give it a try...

 

[Shadow girl]

I've dug out an old letter which has the proper poly thing written down. It is,

polyclonal increasing immunoglobulins- sorry, my fuzzy brain had abbreviated and mixed it up somewhat.

Wendy

 

[cath]

Hi Shadow girl,

I'm sorry you are feeling abandoned, but do hang in there.

It would be sensible if you learn a bit about lupus and typical symptoms so that if/as they appear you can know to contact the rheumatologist again. In addition to the bloodwork Maia mentioned, make sure your GP is also keeping an eye on your blood pressure and urinalysis.

With a bit of luck hopefully the plaquenil will sort out many of your existing symptoms and prevent others from developing. It is really very good that you are on it.

The polyclonal hypergammaglobulins are basically early stage antibodies. Having a raised and rising level probably means that at some point you will have positive antibody tests, so it is worth getting tested regularly (a least twice a year ). These tests don't seem to be run by all doctors - I rarely see people mention them here, but like you I had high levels before treatment, and my rheumy took it as evidence of autoimmune disease activity.


Hang in there,

X C X