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

Hi Mandy, 

The specialist mentioned some other medication but apparently I can't have it because I've had melanomas, what is paleo diet.?

Thanks Mandy I will.

Thanks Lilly, 

im trying to contact my GP for some advise because it just doesn't feel right.

Brenda

Hi pam and everyone else,

thanks for the reply's  I've woken up this morning with a rash on my chest and upper abdomen it looks like measles and feels like sunburn and hot to touch my heart is racing a little and I'm slightly out of breath and dissy I can't get hold of my GP or Specialist as it's the weekend and I don't know what to do. As Lilly said I too can't understand why I was put on such a serious drug when my symptoms where so mild I don't know if I can take any of the other drugs mentioned as I said I have had three melanomas removed recently and apparently that limits what I can take.

thanks for all the advise if nothing else it helps to talk,

Brenda.

Hi Brenda,

I've never taken Plaquenil (wouldn't touch it with a barge pole) but I know what the side-effects are and you're describing every one of them! You don't need to contact your GP before stopping this medication, as it's not in the cortico-steroid group. (To anyone else who might be reading this - if you're taking a medication like prednisolone you must only stop it under medical supervision.)

Brenda, it's fine for you to stop and start Plaquenil as necessary. Please don't keep taking it if it's causing such severe side-effects, as this might even be dangerous. I think you should stop taking it immediately, then contact your doctor on Monday.

This is the kind of problem I was referring to in my earlier mail. Although some people suffer badly from their symptoms and need medical help, too many people are pushed by their doctors into taking powerful drugs for relatively mild auto-immune symptoms, and end up in a worse state than they would have done if they'd simply ridden out the initial flare-up.

Once again, I'm posting this into a private message in case it disappears. No need to read both - they're identical.

Hi Brenda,

Everything you have listed is under the un- common side-effects of Planquenil so if I was you I would stop taking it and speak with your doctor on Monday if you're itching you can always take a antihistamine tablet like Puriton hope this helps.

Mandy xx

Hi Lilly,

I also should have mentioned that rhymatholigist thinks having looked back on my records that I may have developed  Sjogrens at least ten years ago when I was first experiencing menopausal symptoms  which where mostly dryness and which completely disappeared when I started the HRT I have on and off experienced joint pain but nothing that wasn't cured by two nurofen the only big problem I have is fatigue but is that Sjogrens or just because I rarely sleep more that 6 hours a night and rarely longer than four hours straight. 

Hi Brenda,

A lot of people on here complain of extreme fatigue with Sjogren's. I don't suffer from excessive fatigue generally, but it does tend to be a problem during flare-ups, particularly during the long one I'm just coming out of now. There've been times in the last year when I felt I was dragging myself through every day, but now the pain is easing off I feel much more energetic. The problem is that any medication you take is unlikely to have a major effect on your fatigue and could even worsen it.

Bear in mind too that Sjogren's doesn't necessarily get worse as you go through life. In fact, in my case the opposite has been true! Although my recent flare-up was a bit of a challenge, it didn't compare with my symptoms during the first few years.

In fact, the most I ever suffered was when I had my first attack of rheumatoid arthritis in 1981, at the age of only 37. That was terrifying. It came completely out of the blue, in the middle of a walk in the woods with a friend and her large dog. Literally within minutes, I went from walking normally to being crippled with pain in my right groin every time I put my foot down. We were two miles from the nearest tram stop and my friend was practically carrying me by the time we got there. I initially thought it must have been an injury of some sort, but when it spread to my left hip a few days later I realised what was happening. After a couple of weeks it was in both hips, knees, big toes, and my fingers and wrists were stiff and covered in painful nodules. I was amazingly lucky in that I stumbled upon a homeopathic rheumatologist, who cured me in six months. (I hasten to add that where I live only fully-qualified doctors are allowed to practise homeopathy or acupuncture, so I wasn't running any risks.) Although I've never been told this by a doctor, I'm guessing that my SS is the secondary kind, as it started after the RA - albeit nearly 15 years later.

What I'm saying here is that you don't necessarily have to take medication to cope with SS. There's no cure for the condition, you can only take things that will keep the symptoms under some kind of control. We all make our own choices, and some swear by Plaquenil or Methotrexate (which is actually a chemotherapy drug). But I know I'm not the only one on this forum who chose the non-medication route. (You there, Barbara?)

Sjogren's isn't like cancer. It can't be cured in the first place, so it won't become incurable if you wait too long before starting treatment. I can't tell you what to do, but if I were in your shoes I'd hang in there for about six months to see whether there are any signs of remission before opting for medication. Unlike cancer treatment, it won't make any difference whether you start medication now or in a year's time.

Thanks Lilly,

your only confirming what I thought myself but when your new to all of this its all a bit frightening but as the Rhymatholigist said himself that the Plaquenil isn't going to help the dryness which wasn't a huge issue anyway and has only gotten worse since I started taking it I suppose all in all its obvious I should stop and re evaluate. Thanks so much for your input.

get well soon,

Brenda😉

hi Brenda, i was diagnosed with SS , a month after I devloped Pityriasis Roscea which was a few weeks after I had been diadnosed with Barretts Esophagus which had followed a chest CT scan which sowed I had small lesions in my lungs (and fibrosis at the tips) ..all in all I was diagnosed with various health issues within a matter of months and i had never heard of any of them until then.. I had very painful elbow I couldnt straighten out or do anything using (had to use my other hand for drinknig tea and hubby helped cutting up food etc ) i also had painful knuckles, wrists and knees and a dry month (cracked lips at sides of mouth ) the rhuem diagnosed SS and presrbibed Plaq to be taken 2x daily, and it worked within a very short space of time...my aches and pains went and saliva back to normal., so I stopped the Plaq. On follow up to the rhuem he was shocked I had stopped but then also asked if I had some to take if symptoms returned, when i said yes to that he was satisfied. I was on plaq for a few months and now been off it for longer than i was on it..my painful knuckes and wrists come and go (esp if i use my fingers for anything which requies strenous work or lift anything heavy) however I havent resumed the Plaq, as my elbow is still OK.(the worst offfender )  my tendons between my shoulder and upper arm hurts when I over excercise with light weights (also have osteoporosis) so i  just stop thw weights for a few days then resume. I probably would take the Plaq if my excruciating elbow pain returned but then stop it as soon as it resolved. ..its a standby and gives me comfort and resolve to not jump to taking it when i can cope without..for the time being I suppose I am in remission.

​Good luck.  

Hi, 

thanks for your message it really is reassuring to hear that it is possible to start and stop when necessary. I didn't take my dose yesterday or today and I feel so much better, the rash isn't burning now and is starting to fade and I don't feel dissy , I didn't have major pain anyway, a little in my fingers but like you mostly after heavy work,  a little in my knee and hip but as I said nothing that two nurofen didn't solve. I'm using the moisturise toothpaste and mouthwash for the dry mouth and eye drops for the dry eyes though thanks to a tip on this forum I discovered that a hot compress works even better to relieve sore eyes, so I cant justify taking serious drugs that can cause serious side effects and even permanent health issues when I can manage without them, the specialist himself said I only have a mild case which is why I can't understand him putting me on such a high dose, and if I have had this for at least ten years and survived ok I think it makes sense to continue as I have been. My only worry, and I can't seem to find this out online, is that by not taking the Plaquenil I'm risking organ damage or if you are relatively symptom free at least sever symptom free, is that not an issue? Thanks for the support and keep well.

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!

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. 

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.

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!