Ive just been diagnosed and put on 400mg of Plaquenil but now I feel worse!

[nh_user_46005]

Hi Brenda - me again!

In response to your latest question as to why your specialist would have put you on Plaquenil for such a mild case, I've been reading through all your posts again. In your original post you said a blood test had indicated "a connective tissue disease" but in yesterday's post you said he told you that you "may have developed Sjogren's 10 years ago". I'm not nit-picking to catch you out, I'm just trying to follow your specialist's reasoning process.

Plaquenil, which was developed as an anti-malarial, is primarily used as a drug of last resort to treat systemic lupus erythematosis (SLE), which is also a connective tissue disease, as I'm sure you know.

SLE, Sjogren's and a much rarer, and nastier, condition called scleroderma form the triad of auto-immune disorders that attack connective tissues. It's not easy to differentiate between any of them on blood tests alone, as they all tend to throw up the same inflammation markers. Differential diagnosis is normally made by evaluation of signs and symptoms and - in cases where organ damage has manifestly occurred - biopsy.

SLE is far more likely to cause organ damage than Sjogren's, though it's not unknown in the latter. (Scleroderma is usually the most dangerous but I'm ruling that out as it's so rare and, in any case, if you had that you'd certainly know about it by now!) I'm wondering whether your specialist ever mentioned SLE, or just lupus. Perhaps you should google the symptoms of SLE to see whether there's any match. Some of your symptoms will definitely check. There's inevitably a crossover between symptoms of all these diseases, as they attack the same body tissues, but the signs and symptoms of SLE tend to be much more severe and widespread, with a higher risk of organ damage. And some very unlucky people suffer from both, of course. I think we have a few of them on this forum.

So... why would he have prescribed Plaquenil for what appears to be a mild case of Sjogren's? The worst-case scenario is that he's discovered definite signs of organ damage and doesn't want to worry you by telling you that. Nothing's impossible, but that would seem very unlikely as you'd have symptoms by now, and you're not mentioning anything like that in your post.

Another explanation is that he may have misdiagnosed a serious case of SLE (or worse) in the past and is now over-cautious. In my 10 years as a nurse, I noticed that doctors and surgeons often had radically different approaches to the same condition, in function of past disasters. Doctors are only human, like the rest of us.

Thirdly, he may simply have assumed that if you were complaining about your symptoms enough to be referred to a specialist, you were expecting to receive medication. Personally, I run a mile from all but the most essential medical or surgical interventions, but many people - perhaps the majority - prefer to have as much treatment as possible. We're all different and, once again, doctors are all human.

Finally, some doctors - in all specialities - simply believe in treating everything to the max. We often hear of cases where, for example, a surgeon has recommended operating for a back or knee problem, then the patient gets a second opinion that says it's completely unnecessary. Doctors aren't Gods. They're working out of their own experience, and sometimes inexperience, they do their best, but sometimes they get things wrong.

Why don't you do as much research as you can on both Sjogren's and SLE? You don't sound to me like the nervous type who imagine they're suffering from every disease they read about! You'll find that Sjogren's can cause organ damage - as witnessed by a small number of posters on this forum - but the risk isn't high. Plaquenil, together with all the other powerful drugs sometimes used to treat auto-immune conditions, can also cause organ damage, but that risk isn't high either.

The one thing that does seem clear from all your posts is that you were suffering a severe allergic reaction to Plaquenil. This is a known side-effect, and can even progress to anaphylactic shock in rare cases, so I definitely don't think you should risk starting it again until you've spoken to your doctor to make sure it's safe to proceed.

Hope I haven't confused you even more!

[nh_user_930074]

Hi Lilly,

It was during routine blood tests that the nurse noticed I was rubbing my hands, when I told I'd been having some pain in my fingers, knee and hip she included an inflammatory test ( I think that's what she called it) when the results came back to my GP there was a note on it to say that further investigation was recommended as a marker( again I think that was the word used) that should be 7 was 57. My GP said this can indicate a connective tissue disorder and having looked back through my records he thought it could be an auto immune disease, most likely lupus, a few years ago I was diagnosed with COPD though I've never smoked,on and off I've had problems with constant dry cough,fatigue, pallpatations, hair loss, heat rash,dryness and joint pain none of which where severe or debilitating. He referred me the the Rhumatholigist who after reading through the files, tests and past X-rays and an examination said it was Sjogrens and based on my history he reckons I've had it as long as ten years as a report in my file from a gynaecologist ten years ago questioned if I had ever been investigated for SLE!  my GP dismissed this as I had no symptoms at that time other then dryness which completely disappeared when I was put on HRT.  The context in which the 'mild case' comment was made was by way of reassuring me that if I had survived this long without sever symptoms I wasn't an extreme case. So I hope that clarifies things but when you have been given a diagnosis like this it's hard to take everything in, the last three weeks have been a bit of a roller coaster ride. 

[nh_user_46005]

Hi Brenda,

The possibility of SLE does muddy the waters a little, especially combined with the COPD diagnosis, which I don't think you mentioned earlier. That makes things potentially a little more serious. However, as your rheumatologist said, having survived for ten years with no serious ill-effects, you clearly only have a mild case, whether it's SS or SLE.

I take it you're getting regular follow-ups for the COPD? This is important, as any worsening of this condition could indicate that the SLE or SS is gaining ground.

Going back to your earlier post, where you expressed concerns that putting off taking Plaquenil could worsen organ damage, I'd say don't worry too much about that in the short term. Given that you already have COPD, it may indeed be that you're vulnerable to organ damage. However, this isn't like a cancer diagnosis, where delaying just a few weeks could make a huge change to the outcome. Auto-immune diseases rarely advance steadily, like cancer. They usually go through a series of flare-ups and remissions and can even disappear altogether after many years. Even when they do go on to produce organ damage, this is a very slow process. You therefore have plenty of time to do your own research. Have a look at the various treatments - and particularly their side-effects - ask questions of your doctors, investigate life-style methods of controlling the condition, and take the time to make your own informed decision as to how you want to proceed.

One last thought - you mentioned fatigue and hair loss. I'm assuming that thyroid function was included in your last blood test. During my mother's latter years I was shocked to discover that this isn't automatic in the UK, as it is in most other countries. This is an essential routine test for anyone over 50, whether they're complaining of fatigue or not, and should certainly be included for a patient suspected of having SS or SLE. Both conditions are notorious for attacking the thyroid gland. This is easily corrected by prescribing a daily top-up of levo-thyroxine, a synthetic version of the body's own thyroxine hormone. This works more as a supplement than a medication and has no serious side-effects.

[nh_user_46005]

Hi Brenda,

Don't laugh, but I can't help admitting this is funny, when I'd just been lecturing you about looking after your COPD.

Saw my GP this afternoon for a regular check-up after last week's blood test. He always orders very full tests. He was in raptures over my generally excellent results, said they were what he expected to see in a woman 20 years younger, even my CRP had gone back into normal range. (But I'd expected that as I could feel that I've been going into remission the last couple of months.) The only fly in the ointment was my allergy markers, which were through the roof. I explained that I expected this too, as I get tree-pollen allergy every spring, as well as being plagued with assorted candida problems all year round.

My spring allergy mainly causes sneezing, but I do cough a fair amount too at this time of year, and I happened to cough during the consultation. He grinned at me and asked me how my asthma was. I said I didn't have asthma. He said: "Oh yes you do, that's a classic asthmatic cough". A couple of minutes later I coughed again, this time obligingly producing a little clear mucus - also normal for this time of year. He immediately did one of those quickie lung capacity tests, told me it was indicative of early emphysema and he was referring me for full pulmonary tests. He explained that a productive asthmatic cough is a sign of inflammation in the lungs (in spite of the low-ish CRP) which, if untreated, will lead to fibrosis and emphysema, even in lifelong non-smokers like me. So now I'm on a steroid inhaler, at least for the duration of my allergy season. I don't like taking steroids in any form, but I guess it's preferable to developing COPD.

So there was I preaching at you about taking your COPD seriously when I didn't even realise I'd been blithely ignoring my own risk!