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Discussion Starter · #1 ·
hi all

I was only diagnosed with SLE this january after at least 10 years of being ill & being pushed from pillar to post & all the "its depression & all in your head" route which Im sure many of you can identify with,I started on plaquenil along with NSAIDS & after about 3 months was really begining to feel human again - my hair stopped falling out my joints werent hurting quite so much & the constant swollen glands & sore throats calmed right down along with the brain fog,the fatique was still there but I have to say it was improving & my facial rash is now a light pink rather than bright sunburnt red.

Now though over the last couple of months Ive started developing chronic & constant urinary tract infections that make me feel dreadful & on a couple of occassions have spread to my kidneys,Im now on my 6th course of antibiotics in six weeks & I feel awful again! ggrrrrr

it seems every time I get an infection some of the original lupus symptoms flare up again & its like taking two steps forward & then three back,the doctor isnt sure if the infections are because of the lupus,or the plaquenil because its supressing my immune response but whatever it is Im ****** fed up! & beginning to feel like Im never going to get well
sorry about the rant folks but Ive just really had enough at the moment,Id accepted this illness for what it is & was coping really well with it all, but all these infections have really got me down,will they ever stop? or is this as good as its going to get? I just dont know
 

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Hi Shelleylouise

Bless you I am sorry that you are having such a horrible time just now, your story is so similar to mine, really is, I have had problems for 10 years, I was diagnosed with renal disease IGA Nephropathy in 1998, but all my other symptoms were dismissed, like you, in my head, etc etc. The last 15 months my health had deteriorated badly, many 'labels' proferred, until I saw a Rhuematologist in April, and bingo. Diagnosed with SLE/APS, and it is now felt my renal disease in 1998 was probably secondary to Lupus.

I like you, suffer constant UTI's, in fact I am kept on a low dose of Trimethoprim just now, whilst my Rheumatologist confers with my Nephrologist as to whether I have kidney involvement with my SLE diagnosis, I may be wrong to suggest this, but do you have a Rheumatologist?, perhaps asking him or her if you should be followed up with a Urologist or Nephrologist???

I have only been on Plaquenil myself for 3 months now, no improvement yet, but am aware it can take some months, I was told it was to just try to dampen down my immune system, I dont know if it switches it off completely????

I am not surprised you feel so fed up and low, this disease is so unpredictable and am fast learing it can lead you into false senses of security, well it does for me, I think what matters is that you must have medical support on your side, so key, and of course valuable support from groups such as here.

Are you seeing your GP for your latest problem? I am guessing you have already been? I think it very important that he or she is made wholly aware of how much this is affecting you, I always tell it as it is, good or bad, and always ask if need to be referred on. Repeated UTI's in my opinion, most definitely warrant investigation.

I really hope you feel better, and less dreadful very soon.
 

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Hello Shelley :hug:

I'm sorry to hear that you're feeling so poorly right now. It isn't pleasant. I think when these things happen, most of us don't know what has caused them and it's a case of taking each thing as it comes... easy for me to say I know.

I would also like to know "who" is treating this, GP or rheumy? The rheumy needs to know what is going on as it is very important and he may have more insight into stopping this infernal cycle of UTIs.

I am a bit surprised at the doc saying that it could be the plaquenil "suppressing the immune system" as plaquenil is not considered and immunosuppressant from a medical point of view. It would be different if you were on high doses of prednisolone or one of the immunosuppressant drugs.

An infection could well lead to a flare up of lupus symptoms because your immune system has been "called into action" by the infection but, as it is faulty, is most likely doing more than just fight that infection.

I'm quite sure, it is not as good as it is going to get. You are still very early on treatment-wise and the docs will probably need to do a deal more tweaking before you are stable and not suffering from continual infections.

It is true that there will be a lot of ups and downs, that's the way the disease goes. My GP describes it as trying to get rid of the massive peaks and troughs and just have gentle waves or a ripple on the water.

In any case, if you feel that whatever doc is treating this is not taking aggressive enough action, then you need to complain loudly and if he/she isn't listening, complain loudly to someone else.

hugs :grhug:
Katharine
 

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Discussion Starter · #4 ·
thanks for that ladies,it helps just to know other people are going through the same thing,
I am under a rheumy who diagnosed me & started me on the plaqeunil but have been seeing my gp for the infections & it was my gp who told me the infections could be because the plaqeunil has weakened my immune system,though I must say hes told me a couple of things about lupus which I have then found out is not quite right,

I could kick myself really because I had an appointment with the lupus specialist nurse at the hospital in may & I had already had a couple of these infections then & I can now see in hindsight that I probably should have told her about it,but to be honest because this is all still quite new to me Im not really sure exactly what I should be telling them..I feel a bit of a hyperchondriac if I tell them every single symptom I have,I think perhaps because no one believed me for so many years there's still a little part of me that thinks they wont believe me & that Im wasting their time,Im due to see the consultant again at the beginning of august so I will definately mention it then,thanks again x
 

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Hi, just wanted to say I am sorry that you are having such a rough patch. I had never had a uti till I got lupus and I can honestly say they are very lowering. If you are constantly getting them then no wonder you feel fed up. I hope that things improve for you soon. I just wondered though could you phone that rheumy nurse and tell her whats been going on and see if something could be done for you in the meantime?

Hope you manage to get sorted out.

Take care

Deb
 

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It's common for another infection of any type to trigger a lupus flare up, certainly works that way for me. I am thinking that this has likely been just one UTI but they can't find the antibiotic that will treat it appropriately. Have they done a culture on the urine and tested to see which antibiotic it is susceptible to? Lupus patients will often need antibiotics at a higher dose and for longer duration in order to cure a bacterial infection. "Twice as strong for twice as long" is often the way that is referred to!

If this problem has been going on for this long, I would also ring the rheumy and ask your GP for a referral to a urologist as they specialize in treating these types of issues. It seems one is needed if this is the 6th try to cure it.
 

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Don't hold anything back from your rheumy. Let him decide if the complaint is relative or not. I don't know how many times some simple thing changed the course of my treatment.

Take care,
Lazylegs
 
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