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Discussion Starter · #1 ·
I'm just wondering if anyone has ever considered or actually done this? I'm so sick of taking meds that make me ill, and more meds to combat the side effects of the other drugs...and I just think maybe I'd feel better on no meds at all?! I'm sure everyone feels the same as me...let me know your feelings on this one! xxxx
 

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Hi Mooks,

I strongly recommend you not stop your medications. Some of the medications need to be weaned slowly down to avoid adverse side effects. I do understand hating to take pills all the time, but considering the alternative I find it worth it. Speak with your doctor if you really think you need a medication holiday.

There have been a few times I didn't think a drug was helping until the doctor cut my dosage. After just a few days on the lower dose I could tell the difference.

Take care,
Lazylegs
 

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Dear Mooks,
I take an awful lot of meds. Some have unpleasant side effects but having got the right mix to help me I don't vary it. I fully agree that it can be hard.I once became so upset with it that I told my Consultant I felt like stopping them all. He warned me that would be extremely dangerous. I reckon we are all allowed to get fed up now and then.
x Lola
 

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Oh boy, Mooks, I hear you! I understand your frustration so well. It's so tempting sometimes to just stop them all, especially if we've been on them a long time. After a while you even wonder if they are helping any more, right? Well, I can tell you from personal experience, it's not a good idea to stop them cold-turkey, unless you've been given the go-ahead by your doctor, but even then, you may very well find that the meds were helping you much more than you realized. I've tried a few times now, with my RDs blessing, to cut back on different meds, and I paid the price, even doing it slowly and gradually.

Instead of stopping them, why don't you just give us a good rant about how you hate them, why you hate them, and anything else that will release some of your anger. Go beyond what you've just posted. Let loose and let us commiserate with you....because we really, really do understand how you feel. The only other thing I can suggest is talking to your doctor about adjusting the ones that are making you ill. No one can tolerate that indefinitely.
 

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Hi Mooks

I sure understand where you are coming from. I guess there must be hardly a person here on the boards who hasnt thought about stopping their meds at one stage or another. I know the thought has crossed my mind lots of times. Its understandable getting fed up with taking medications, getting side effects, taking other medications to help side effects, etc etc.

It really, really isnt a good idea to do this without talking to your specialists first though. Its terrible feeling sick all the time and I can understand your frustration. Just dont stop your meds completely without talking to your doctor first.

Much love and understanding hugs
Joan:rose:
 

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Mooks, I have stopped all me meds at one point. I also ended up in the hospital from it. So i do not recomend it. I was taking prednisone and stopping it "cold turkey" can cause your stomach to...well i'm not exactly sure what it does but something like the flu i guess. I got so ill i wasnt able to keep anything down and ended up getting so dehidrated i had to go in. I doubt you enjoy the hospital as most people dont and i was there for about a week. My doctor informed me that even missing one dose of prednisone or any med can have that affect on you. I am supposed to go in if i forget a dose and get sick like that again and they will give it in a shot form.

I have lowered my medicine on my own and i kind of take it when i feel i need it which probably isnt good either but i have such a hard time with piils anyway. I hate that everytime i sit down for a meal it has to go along with a pill. They had me on 4 blood pressure meds and i was monitoring my bp at home and it started to get low so i started to cut back and everything has been fine so far but i dont advise doing this.

I guess just DONT quit anything cold turkey because it can have worse affects than it did when you were on it. Talk to your doctor maybe there is a medicine that doesnt have as bad of side affects.
 

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Aww Mooks (((((((((((hugs))))))))))))

I hear you too :( There are many times I wonder just how much good they are doing me. But as others have mentioned it's not until you go off one of them that you realise just what a bad way you would be in without them.

This is prominent in my mind as recently I explained to my Specialist how I had worked out it was the anti-inflamms making me nauseous in the mornings. He promptly took me off them with some protest from me (as at the time he offered panadol as a substitute :rolleyes: ) Anyway I gave it a try and after one week I was back to square one. With them I still got some joint pain and muscle pain and the odd fever. Without them I was in agony and immobile as the week went on, i.e. back to the bad old days I had almost forgotten. I was shocked! Needless to say he has prescribed another one and thankfully after 2 doses I can see a tiny bit of difference, I am hoping that in another week I will be back to the 'normal'lupie me.

Meds and finding the right balance is a pain in the butt and takes good communication and endless patience for both doc and patient. Moreso for us I think as we have to go through the months of trying and waiting and hoping only to be disappointed and having to try something else.

Hang in there Mooks, take comfort that many of us have been where you are now but have finally got some kind of comfort level with our meds. I wish the same for you and very darn soon too.

hugs
Lily
 

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Mooks i also read your thread about wanting to have children. I think you should stick it out for as long as possible if you want to get healthy enough for that chance
 

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Hi Mooks,

I understand, your being fed up with taking pills, and more pills. I have felt the same way, and wondered, if I could get by without mine. My dr, even gave me the choice to stop Plaquenil, and told me the CellCept would do the same job for me...

He was so, wrong. I stopped the Plaq, hoping to save some money, and I went into such a tailspin, that I ended up in E.R. It ended up costing more money, and I got so very ill.

I don't ever intend to go off my medications again. I will not even let my dr. suggest it again. I do not have a choice. If I want to live, I have to take all my medications, side effects and all.

Maybe, your dr, can work with you to get the right dose and combination, of medications..to minimize side effects. Maybe, if he can do so, effectively, you won't dread taking the pills..so much.

Hope, this helps you, a bit.

:) Sandy
 

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Discussion Starter · #10 ·
hey guys, thanks for all your replies. ok so stopping them would be a bad idea! but its the fact he is making me try one thing after another. ive now got to try azathioprine and if that doesnt work i have to try ciclosporin (both which have nasty side effects, and i have a sensitive tummy anyway so i know ill be sick!) and only then can i have this rituximab. i dont know why they cant just go straight to the best one!!! its driving me crazy!! and its so embarrassing like the other day i was at a "sleepover" with lots of girls i hardly knew as it was a friends birthday and in the morning i had to get all these meds out and i tried to do it discreetly but i bet everyone was looking wondering what was wrong with me!!! i just want to be a strong woman not some frail little girl!!!!!!!!xxx
 

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(((Mooks))) my darlin, you are a strong woman. Aside from all the things the other girls were dealing with (hair, make-up and what colour to paint their nails;)) you are having to cope with this damned illness on a daily basis:mad:.

I wish you the very best for the azathiaprin and hope this is the med for you.

Take care

PS I don't mean to be disparaging to your friends:blush:
 

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Hi Mooks,

I think we have all gone through these "I hate meds" periods and have many times thought of putting the whole lot in the bin but, at the end of the day, we know that we are dealing with a serious disease and that it is really not a good idea at all!

On the aza. I used to be hyper sensitive to any meds - can't take normal anti-inflammatories more than 2 days in a row due to severe nausea...couldn't take cymbalta due to sickness and severe headaches... but I am ablsolutely fine on aza and was from day one. You never know, it just might be the med that makes a big difference for you.

It is important to start on it slowly (not at full dose on day one) and let your body get used to it. Talk this over with your doc, especially in light of how you often react to meds.

Finding the right med can be very frustrating and very time consuming but the docs will often be trying you on the med with the least side effects to start. Aza is considered very safe compared to many other options and some people are even able to stay on it through pregnancy if needed (I guess that would be up to your doc at that time).

Good luck,
Katharine
 

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I've been on Aza (Imuran) for three months now and it finally kicked in about two weeks ago. It's really helping me and may very well be good for you too. I have been able to stop the MTX injections which makes me very happy because I feel that Aza is less toxic. It did make me queasy the first several days, but only because I had to jump immediately from two to three pills a day, because I had tried (at my RDs suggestion) to stop the MTX right away and the pain came roaring back. Even so, I was only queasy for a few days and as an added bonus, lost 4 pounds (yay!) which I'm still keeping off. It continues to curb my appetite (double yay!) but if you have any problems keeping your weight up, that could be a problem. But most of us would enjoy that little side effect. Give the Aza a chance. It takes time to kick in.

In the states, many of us can't go on to the "bigger guns" in medications until we've tried the less expensive options. The insurance companies demand this trial period. I wonder if it's the same sort of thing with your type of insurance?
 

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Discussion Starter · #14 ·
jesse, i think its because rituximab isnt licenced for use in SLE yet in the uk, so the nhs wont provide it unless you have tried everything else and are still really sick. Its silly though because its a much less toxic drug with real results! if you read about it, it looks really good! I know i shouldnt moan because you guys in the us have serious problems with getting meds and it must be a complete nightmare(i watched that film sicko about the situation there and it really is awful) but at least in america people seem to know what lupus is and theres alot of money going into research!
 

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Hey there,

I don't know what you've read about rituxan exactly, but it is very much a last resort med that has not yielded conclusive results for lupus patients in studies so far. Some people on the forum have had it and it's helped them in the short term, others have had it and it's helped them in the long-term too
and for others it has not helped at all. But there is very little in the way of conclusive studies concerning rituxan's efficacy for lupus.

NHS aside, docs are 100% right to give patients every other proven med they have in their disposal (plaquenil, mepacrine, imuran, metho, cellcept, cytoxan etc) before they even consider putting patients on rituxan. And I can assure you it has nothing to with its price. It does have to do with its efficacy and possible long-term side effects and with trying to weigh the good effects on can get from a med vs the possible bad effects that med can have.

I realize some docs in the UK aren't very lupus-aware, but surely your rheumatologist is? If not, then it might be time for you to find a new rheumatologist who can provide you with options concerning meds and treatment. If your body can't tolerate imuran then there's still a lot more meds to try before one reaches the stage where rituxan is considered.

Here's a link talking about a very large Genentech and Biogen rituxan trial that yielded very poor results for rituxan in lupus:

http://www.efluxmedia.com/news_Ritu...hares_of_Genentech_and_Biogen_Drop_16992.html

Now I'm not saying one shouldn't try rituxan because of that study, but what I am saying is that one should cross that bridge when they come to it and at the moment you, thankfully, don't appear to be anywhere near it. Also when and if other meds fail for someone they need to discuss their options thoroughly and carefully with their doc so they can reach an informed decision about what to do next. :)

:flowery:

Zoi
 

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Hi Mooks,
Can understand how you feel about all the meds. I was actually taken off all mine by my Rheumatologist while in hospital. He did a drastic reduction on the Prednisilone, stopped the Voltarol and the Methotrexate dead. In a day or two I totally siezed up and had terrible symptoms and pain. Its taken me nearly 3 years to recover properly from that.
Im sure you wouldnt just stop the meds just like that you just feel like doing it sometimes. I can understand that.
As you can probably imagine I lost all faith in that Rheumatologist and so did my GP so I was refered to another one and have never seen him again since the day he said.. Ooo you look ok today you can go home. In the next few weeks I thought I was going to die but I gradually pulled myself back to some sort of life and after going back on the Prednisilone 3 years later Im nearly drug free.
Think is best that you make sure they review often just what you are taking though because they do seem to keep adding stuff and if you dont ask they sometimes dont realise you are still taking all the other drugs too. They seem to go on repeat prescription at my doctors and I can order them when I want and Im not sure the doctor actually knows which ones I am taking and which ones Im not.
I also dont think my Rheumatologist knows much about Lupus.
Hope this new one works for you and you dont have to add any more to the mix.
Good luck
Sal x
 

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((((((((((((((((mooks)))))))))))))))) hnag in there, yes i know you wont stop them cos you know you have to have them, but your just so cross about everything to do with it hey? i do too, infact this last few weeks im feeling sick just thinking about taking them all,

Its a lot isnt it to take for breakfast, grrrrrrrrrrrrrrrr!! im glad you have a good gp who is looking after you, im lucky i have good rheumy and gp.

but all these meds yes do come with there lovely side effects, you hang in there hun

take care thinking of you Lin xxxxxxxxxxx
 

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Mooks, don't believe everything you hear, especially what's in the moive "Sicko." There was definitely an agenda there and it was slanted unfairly. Having said that, there are some here who have difficulty getting the medication they need, but many of us have excellent insurance, short waiting times, etc. I'm lucky to have such insurance, as does everyone I know, but it's clear we need to do something for those who are not so lucky. No one should be denied health coverage, and we're struggling with how to fix that. From what I hear, NHS is also lacking in some ways and in Canada, many people come to the states to get care because their wait list is so very long at home. Clearly, neither plan is as good as it needs to be. I hope our new administration will be able to come up with a solution. He's really got his work cut out for him.
 

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Hi Mooks,
I do agree stopping all meds is not a good idea. I did but not by choice, it was a choice that was out of my hands. I think the right thing to do would be to speak with the doctor and convey your feelings to them and ask that if there is a possiblity of getting off a few for awhile. If you really are not happy with all the meds they should try and see if there are some that would work like some of the other so you take one and not 2 or 3. You could even try new things that may work better than the ones you are on now. Stopping the meds won't make you feel better it will only have you starting over again. I do understand how you feel and that there are more days then not that all of us would like to be med free but take it from someone that has been there I would rather deal with the meds than deal with the disease without the meds.

Take a deep breath and tell yourself this is you now and figure out a way to be happy the way you are today, there is no going back to ourselves. We can only find a happy place for the new us, and honey you are not alone there are thousands of us that will help you gladly in anyway that we can.

Be Happy with the NEW You,
Tammy
 

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Well I will say don't stop you meds I know they suck, I believe that my fear of all the medications and trying to avoid the doctors because I kinda knew all along that if I did not have Lupus(dx after 15 years) I had something, i was just blessed or lucky(depends on how you see it) That I did not cause major damage to my body by doing so. I want to also say, that I understand you not wanting to seem different or weak around other people/or friends. But I want you to know that it takes more strenght to face your illness(as fustrating as the drugs maybe), and trying to become as health as possible. I think your strong, I hope you can also see yourself that way.
 
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