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My doctor has now dicided I have polyarthritis!!! My rhumey wont see me again without photographic evidence of my swollwn joints!!!!!!! Like I want photos of me like that! , I am soooooooo fed up, my doctor has said the next level of drugs I can get are 'disease modifying drugs' which could shorten my life by 8 years and in some cases cause death, how to cheer me up. I am at the stage where I am reluctant to go to my doctors as he will only want to put me on these drugs which I dont want, I am have weekly flare ups which make me bed ridden my hubby is getting really worried about me. I dont know which way to turn or what to do next!! Sorry for the winge but i'm frustrated, scared and confused.

Jo
:worried::sad::unsure:
 

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I'm outraged for you! That sounds awful - is there any way you can switch doctors? My joints have only a few times been visibly swollen; my rheumies have both stated that with lupus joint swelling is often minimal to nil compared to joint pain. It seems out of proportion - especially in comparison to someone with rheumatoid arthritis for example...

Anyways, I'm not so sure about the disease modifying drugs shortening ones life by an average of 8 years. I have not seen a study that says that at least... and even if there is a study that actually says that then it's actually very hard to control for disease severity in such studies. What I mean by that is... those people that die 8 years earlier (if it is true) might have died 15 years earlier if it weren't for those disease modifying medications.

Take care of yourself, and always keep in mind that quality of life is also very important. If additional medication can improve your quality of life, then that just may be the way to go. But I'd get some different doctor(s) first. You deserve to be treated better than that...
 

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Hi there,

I can definitely understand your being fed up! I would be too.

I have met one doctor that absolutely wanted me to have visibly swollen joints but thankfully he was only what they call a "medical expert" for insurance purposes. He was far from an expert (over here at least they tend to be docs that aren't up to actually practicing medecine and only do that)and told me all sorts of things trying to prove I didn't have anything wrong with me so that the insurance wouldn't pay. At the end of the day the insurance didn't pay for different reasons (that has now gone to court) but my rheumy wrote them a stinking letter about my medical condition so they couldn't refuse on those grounds.

I have never had visibly swollen joints. I do get plenty of inflammation but it doesn't get to the swollen stage. All one can "see" if you're actually aware of it, is that my skin tends to get reddish in a big round spot above the joint at times (but not always).

As for disease modifying drugs making people die earlier !!!!! How come then, before thse drugs, people died of lupus very regularly whereas now they mostly live lives as longas anyone else? What a truly odd statement.
Obviously all drugs have side effects and none of us want to take ones we don't need but.....

I'd agree on a different doctor, definitely!

hugs to you,
:hug:
Katharine
 

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Jo,

I'm sorry to hear to bad your feeling at the moment!

I have SLE and like others I do not get swellings, but I do get immense pain and stiffness in joints!

One point to note is how is GP diagnosing these illnesses (Polyarthritis and even the prior diagnoses of Lupus). I hope he/she is not just randomly guessing without the back-up of proper expert knowledge. My GP would not diagnose me with serious problems without the relevant tests and I certainly would not take meds first without the knowledge that whatever I may have being investigated properley.

Not sure, but are there not scans/x-rays that can be done to see if arthritis is present!

You need to work with your GP to see if you can get referred to another specialist. You may not be able to get a referral to another Rhuemie whilst still under the care of one, as there is apparently no 2nd opinion option now in UK. There are of course other specialists that can access you like orthapeadic, physio, neurological ones, perhaps your GP can go this route on top of your current Rhuemi.

Then of course the other option is to go private if you can afford it!

Good luck with whatever you choose, but I do think more investigation is required!

Love Lesley
 

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Hi Jo,

My rhumey wont see me again without photographic evidence of my swollwn joints
That's seems absolutely outrageous, did he actually say that to you?

I would call his bluff if you find you can't get another specialist whilst under his care.

i.e. you had swollen joints when you flare up, if it was me (being the smarty pants I am when docs pee me off), I would make another appt and go along with the photos and throw them on his desk ;)

This could very well be something other than lupus if you don't get rashes etc. but it's obviously something inflammatory in nature and probably autoimmune! In other words his department, and he needs to re-assess you. It could be something like RA even, but it's no good your GP guessing all the time and giving you suspect information about the disease modifying drugs, he himself does not sound well informed :( Of course none of this is doing anything to help you and improve your quality of life, which is what we would like to help you achieve :hugbetter:

love
Lily
 

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Wow...what a stress for you! I had a doctor who believed me when I said I had swollen joints...I did take a picture of my hands once but it made me burst into tears! I am quite surprised at the rest of the comments though...I thought the joint swelling was much more common. Mine tend to swell often, turn red and give off lots of heat...my hands turn into claws! My knees are the worst though...my husband can feel the heat radiating off them without even touching them...maybe I should be looking at getting more meds! That's the odd thing about this condition...you never know how much you are meant to just put up with...
RM
 
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