Mixed messages ... I'm confused

[Best Buddy]

Hi.  When I first saw my rheumatologist last year, I too had to pluck up courage to take the Plaquenil( hydroxychloroquine); in fact it took me months to admit to myself I would be better ... And I am really benefitting from it.

However, on my next visit the consultant said that he wanted me to try one day a week to not have the drug as the least taken the better.  He said that after three years I shouldn't really be prescribed it and that some of his colleagues refuse (NHS) to give it any longer than that!!!  I was in total shock... How can a drug be taken off someone when it is doing them so much good?   Strangely, I have a friend who has lupus and she has taken it safely for 22 years and her husband is a pharmacist, so he reassures her and me that this is standard practice.

I am soooo confused.  He said he will review this decision in September but I am rally worried as I have so many other conditions to manage that I can't bear the thought of having to reduce this.  Anyone else heard of this???

[Suze]

I saw a retinal specialist last year for vision problems, which turns out to be due to a corneal dystrophy. At the time I was on Plaquenil (which did not cause my eye problems). However, he did say that there is a cumulative dose per kg of lean body weight that should not be exceeded. However, at the usual doses I don't think that this total dosage would be reached after 3 years.

[finallyadx]

I have heard that plaquenil is the drug of choice and the first line of defense in sjogrens and lupus, however it does come with some warnings for potential eye damage, but if you take the necessary precautions and visit an opthamologist within six months of starting it and then every six months you can most likely avoid the damage that they refer to and if it starts you can usually reverse or stop the damage if caught early enough...

I cannot say enough at this point anyway (only seven months into using it) about plaquenil.  It has given me back a good part of my life - I still have bad days and I still have flares but everything is so much better with the plaquenil.  For me, personally, it is worth the risk to have some good days at this time anyway.

I think you are receiving some good advice from those around you who know you, maybe (and I know it is much easier said than done), you should try to find another rheumatologist who better understands how sick someone can be with sjogrens and how beneficial plaquenil is when monitored appropriately.  I have not seen any other posts yet that talk about a rheumatologist not letting their patients stay on the plaquenil for more than 3 years if they are being monitored and taking the lowest dose possible for them to help.

Sending positive thoughts your way.

[CMNK12]

   Hey and welcome,
   I have not heard of that. I guess I would have to ask him since you have improved on the medicine, what is his plan of action? Is he planning on putting you on a different medication? Just what is his rationale? Maybe a second opinion or a new doctor is needed? That would confuse me too. Gotta love modern medicine. LOL Take care. CK

[gurs]

After all my research and years of dealing with this, I never heard that? only 3 years? are you kidding? this is a long term drug. Ive seen docs at Johns Hopkins, Cleveland Clinic, and my wonderful rheumy here in Michigan, and all say its crucial to stay on it, and its fine for long term. Just make sure you have your eye field testing done every 6 months etc, and your doc does labs to monitor?

If it were me, I wouldnt listen to that doc? Its your health, not theirs. I was on it for around 8 years to start and it kept things calm. I decided to go off of it, and boom...3 months later all my CNS issues started big time. I was miserable.

What else do they recommend you do then? there is nothing else for us to take that is less toxic as well?

Gursie

[4Kids]

We see studies and hear time and time again early treatment is crucial to long-term sufferers as it can help slow down progression. Maybe not even slow the disease process but it can keep our glands working and less inflamed and therefore produce moisture longer.

Why, why, why then do doctors tell you the least amount of drugs the better? Mine like to say oh good you are feeling better, let's stop taking the things that make you feel better. Six months later on a downhill slope they are like  hmmm, oh well you can go backwards and take the drugs again if you want. Um, thanks for the months of feeling really crappy you made me suffer and we do this time and time again.

I told my dr I would try no Plaquinel. I did and it sucked. I went back on and again, she thought I should try not take it. I said no I was not comfortable doing that. She said well this time could be different. I said I would think about it. I am just not going to do that right now. As long as I have that Rx I will take it. I think it does me a world of good and I am the only one who can measure this outcome because so many of my issues are internal ones. It's like 1000 little things that don't mean much separately (dry nose, dry mouth, dry eyes, fatigue that makes your face fall off, sore legs, no energy, pins and needles, shocks, sore hips, stiff hips, stiff ankles, hair loss, scalp patches, etc etc) but together they make the quality of your life really low. Plaquinel and my other meds have helped this. I am not willing to go backward, at least not at this time.

hth

[Best Buddy]

Thank you to all those of you who replied.  The trouble here in the UK is that when the GP makes the first referral to a specialist you are asked where you would like your treatment to take place.  There is no facility here for us to do anything other than a quick Internet search regarding a hospital and the services they provide and so we usually just accept the nearest specialist hospital, especially as it is all funded by the NHS....so it's not a case of shopping around....believe me, even tho' we a very grateful for our NHS, the system grinds slowly, very slowly, so we take what's on offer when we are offered it... Ar too deferentially if you ask me.

My own consultant is as really nice man but we don't get full print outs of blood results as standard here and so I seem to stand out as unusual in that I ask about things and like to be in the driving seat as to what is happening with regards my treatment and diagnosis. In fact, he tells me to go home and research xyz for myself as he know I want to be included in everything... Heaven knows I have waited so long to find out what is wrong with me. As I said on a previous post I am struggling with so many joint issues and other autoimmune conditions and no one sees me holistically. 

I am glad that you all agree that taking plaquenil away from me in little over 2 years hence would be disastrous.   
Continue all your wonderful support!
BB

[Best Buddy]

Thanks for the suggestion but it isn't a reliable tool as not all doctors are listed here and not everyone takes time to rate their experience anyway.  Worth a try though.

The NHS at least have permitted us to decide on where we are treated but we still tend to go on GPs recommendation as they at least have some inside knowledge.

[Best Buddy]

She is a very good GP and yes, I am sure if push came to shove, she would try to come to some arrangement.  She has been instrumental in diagnosing and referring me for a number of conditions I have to manage and that's me as an intelligent woman who, in some circumstances, admits  know more than she does! A wise doctor indeed who acknowledges that she is the gate keeper and manager of my treatment not the be and end all!

[Best Buddy]

Oops, sorry, that should say she 'treats' me as an intelligent woman!

[LittleBlue]

Hi Best Buddy. Im in the UK. I found this on the net re an NHS hospital in Wirral, maybe it may help. It seems to point to a maintained remission, and if so, decreasing medication on alternative days inline with it. Im a newbie to all this too.  Im in the midlands so I will ask my rheumy when I next see him:

Rheumatology Department, Wirral Hospital NHS Trust revised/updated February 2004
Rheumatology Unit
–
Wirral Hospital NHS Trust
PROTOCOL FOR MONITORING
HYDROXYCHLOROQUINE (PLAQUENIL)
PRIMARY CARE
DOSE:
•
Maximum recommended dose Hydroxychloroquine 6.5mg/kg, usually 200mg
daily
•
If remission maintained then may be reduced to 200mg on
alternate days.
•
Recommend annual check with optician
MONITORING
Referral
to
the
Ophthalmologist
If any patient:
•
Has visual impairment or eye disease detected
at baseline assessment
It should be noted that in elderly patients there is often coincidental
ocular
morbidity from cataract, glaucoma
and age related maculopathy.
•
Develops change in acuity or blurred vision whilst on treatment (as assessed by
reading chart).
Patients should have eye test (optician) and if necessaryseek advice and
contact helpline
Other Symptoms
•
GI symptoms
Usually mild and will settle
•
Headache
If severe
-
contact helpline
•
Skin rash/ depigmentation
May need to discontinue therapy if severe
•
Tinnitus
May be due to drug. If no other cause stop drug

[Scottietottie]

I stopped taking Plaquenil to try to cut down on tinnitus. I'd been taking it for about 8 years. The tinnitus has reduced but not gone completely.

[gurs]

Agree with you 4kids 100%....I still dont think these docs get it...most prob feel we are complainers and just have to deal
with a bit of dryness, and thats it!!! Little do they know that is only 'Part of it"...I wish they could find more evidence and how similiar this is to MS....seriously!!!!! Im sure most of us could handle the dryness issue, but alot of us have mixed connective and other health issues from this disease as well, not to mention the fatigue..oh my lordy!!! You cant even begin to explain it to someone because they have no idea whats thats like either..tired of all telling me to get more sleep..ha ha.

I no plaquenil is no miracle drug, but what else do we have that is less toxic? Im all into the health supplements, and have been for years, but they only manage my symptoms, but they dont stop the progression of this disease (in my opinion).

Hope you can find some answers..dont give up.,.this is YOUR life, not your doctors.

Gursie

[Best Buddy]

Thank you all for your messages. 

That's really helpful advice from the uk hosp...I am near that hospital but I am not receiving treatment from there.  Good to know littleblue that you understand our system over here too.  I hope that I can continue to take it long term
BB

[LittleBlue]

Aww the very idea of sacking our Gp or Consultant eh?  I have a good rheumy but the ENT consultant I originally saw was one of the most awful people you could ever have the misfortune to meet. I would love to have done a Lord Sugar on him and said; "your fired".