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Discussion Starter · #1 ·
Hi - just joined and have taken comfort knowing I'm not alone. Becoming more convinced I have myositis - I can relate to the descriptions of symptoms. Started getting pain in upper arms last April which has been getting progressively worse and is now in both shoulders, my neck and down into my arms and hands. Have had various other symptoms over the 26 years since I was diagnosed but recently have become worse since I reduced the Plaquenil. Been told I have to come off it completely as I've been on it just over 20 years. Feel I have a long road ahead as it will take me about another year to come off it completely then I have to 'try' something else. Anyone else come off Plaquenil with similar problems?
 

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Hi Lainy and welcome to the lupus site.:)

I moved your post so it wouldn't get lost with someones else's post. This way you will get responses just for you.

I am sorry to read that you are coming off of plaq. Why is it that your doctor wants you off of it? Is it because you have been on it for over 20 yrs?

What other meds are you on?

You are right you won't feel alone here. The members here are the best.:) They are willing to share their experiences with dealing with lupus. There is very up to date information on lupus.

Take care,
Lyn
 

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Hi Lainy and welcome to the site.

I have not come off Plaquenil so can not speak about that but wanted to welcome you to the site.

I hope you like it here as much as I do.

Join us in the chat room sometime.:wink2:
 

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Discussion Starter · #4 ·
Thank you so much for your welcome. It's comforting to know there are people who understand. Sorry I posted in wrong place - not used to this sort of thing. At the moment I feel like a broken record, I can hear the sound of my own voice complaining - wears me down so I can imagine how people around me feel. :ermm: I was told last year when I saw my consultant that I had been on Plaquenil long enough - he said it wasn't so much the dosage I was on but the overall amount I've taken over the 20 years. I halved the dose and I go back in Dec when I think he'll get me to take one, miss a day, take one, etc etc then I'll go back in 6 months then miss two days, etc, etc till I'm off them completely. This will take about a year. Meantime I've not been given anything else. Now starting to feel more symptoms and of course I have less immunity - don't want to look too far ahead to what may happen as I reduce the meds, don't want to get depressed as well. :sad: I work 35 hours a week, so first thing is to try and reduce this. Work/Life Balance is offered by my emplloyer so I have an appointment today with HR to look into this. Thanks again for your support it means a lot.

:) Lainy
 

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Welcome to the forum Lainy
I am sorry for your predicament. I have never heard of anybody being taken off Plaquenil simply because they have been on it 20+ years. If there is no clinical reason, it's crazy considering all the side benefits Plaquenil brings as well as the very obvious ones like symptom relief.

It is true ( from all I have read) that dosage is cumulative so the risk of eye toxicity increases over time. I have variously read 6-10 years. But for heaven's sake if that is the main concern all that's needed is an eye test !
I presume that there are ophthalmologists even in Scotland:hehe: which would be the ideal, but I get my eyes tested for retinopathy by the optometrist at the SpecSavers on the High Street.
Perhaps there are not so many people on the forum who have been taking Plaquenil so long but overall the top doctors must be accurately informed when it has been used to treat lupus for so many years now and so much studied. Apparently there are other factors that can increase ocular toxicity - renal and liver complaints, and taking more than the maximum recommended dose that's been wrongly based on real body weight not ideal body weight.
One possibility is that he has some information that hasn't yet appeared in print. I must have been taking either Plaquenil or its stronger cousin chloroquine for at least 20 years including at least ten on maximum doses of the chloroquine which is generally reckoned to be a higher risk.
However, my doc at St Thomas' told me I needn't worry about eye tests ! I feel confident that if there was any risk he would have advised me to get them checked.
I now get an annual eye test free because I am over 65 but whatever anybody assures me, I would pay for it if need be, because it is too important to risk. I once mysteriously went deaf for a week, when I decided that my sight was overall the more important to me.

As I said maybe there aren't so many people who have taken Plaquenil 20+ years but I can say that apart from my own experience I have never heard of this, not in over ten years of reading forums and reading everything I can lay my hands on about lupus above all those aspects that directly concern me such as the anti malarials.

There is an alternative anti malarial called Mepacrine in the UK ( Quinacrine in the USA) that does not affect the eyes. It does much the same as Plaquenil often with the added advantage of being more energising. Plaquenil replaced it on the market for anti malarial prophylaxis so it is not readily available. The chemical has to be compounded: purified and made up into pills for human consumption. Many doctors are not aware that is is still available. I have to get mine from the hospital pharmacy on the consultant's prescription because my GP refuses to prescribe it as it is not licensed medicine. Some GP's will prescribe it on the consultant's recommendation and Boots will compound it.



It can be taken along with Plaquenil so you could gradually add one while reducing the other if need be. I dont understand why you shouldn't be started on another sort of medicine while you are reducing the Plaquenil What is the point of having you on nothing with all the suffering and poorer quality of life that will bring?

I don't like critizing doctors because there is often no choice or very difficult to make a change. Perhaps this information will empower you and you can have an informed discussion with him and get a better deal for yourself. Treatment these days should be a partnership. Maybe you can see another consultant in the same place for a second opinion if going to a different hospital is out of the question. Doctors in the same department can disagree. I hope you have a caring GP but suggest that anyway you let them know about your misgivings.

The mysositis is an obvious concern and one wonders what treatment plan he has for that. It shouldn't be left uninvestigated and unaddressed.

If you think you might be depressed you probably are so don't hesitate to seek help. It can be caused by lupus as well as reaction to the problems lupus brings. A suitable anti depressant can make all the difference between coping and not coping. Good luck with HR.

Lots of luck - please let us know how you get on

Clare
 

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Hi Lainy and welcome to the site. Claire has given you excellent advice. I hope you manage to get things sorted.

Take care and let us know how you get on.

Deb
 

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Hi Lainy,

Welcome to the site.

Sorry to hear you are not doing well now that your dosage of Plaquenil has been lowered. I think you should contact your doctor and let him know the symptoms you are now experiencing. There are other medications that might be helpful for you.

Recently I went off Plaquenil after being on it over 20 years. I decreased the dosage to 200 mgs for 2 weeks and then dropped off of it completely. My other medications were able to keep the disease managed. Had I not done well my doctor had said he would add another medication to help out. If I had experienced symptoms like yours I would have been on his doorstep seeking help.

Take care,
Lazylegs
 

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Hello Lainy and :welcome:

I can't really add to what Clare's said (indeed I'm not half as well informed :wink2:) but wanted to welcome you to the forum anyway.

I would certainly question this coming off plaquenil, especially with no other alternative being proposed. I mean, even if he has very good reasons for it, the disease is still clearly there and active and needs treatment.

hugs :hug:

Katharine
 

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Discussion Starter · #9 ·
Hi Clare

Thanks for your help - Wow! I just accepted what my consultant said. I assumed that having to come off Plaquinal after 20yrs was the norm. All I could see in front of me what a steady decline as I reduced my medication. As the years go by symptoms change, some come and some go but generally things have got worse just with the natural progression of the condtion. I can only imagine how I'll feel without medication. My next appointment with my consultant is not till Dec - will need to try and bring that forward so that I can address this sooner rather later. Today I've set the wheels in motion to reduce my working week from 5 to 3 days so hopefully that will help. This will be a temporary arrangement so if my health improves I can increase again.

Re the possible myositis - my consultant says these symptoms are just part of condition - he neither confirmed of denied the diagnosis. No other treatment necessary - no real investigation either. When this happens I feel a bit of a nuisance as if I should be accepting what's happening to me as a matter of course and stop 'complaining'.

Thanks for all your comments - I appreciate your support. I really need to get this sorted out before I end up a lot worse.

Lainy
 
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