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    Old 09-26-2009, 10:48 PM   #1
    velvet rose
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    Treating lupus without prednisone

    I don't want to be on prednisone. The side effects are too horrible and psychologically damaging. My mother has lupus, and seeing what she went through on prednisone--I just can't take it. I just moved and won't see a rheumatologist for about 3 weeks. Are there any other ways to treat lupus besides prednisone?

     
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    Old 09-27-2009, 02:41 AM   #2
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    Re: Treating lupus without prednisone

    Velvet, yes, there are meds other than Prednisone, but what's appropriate always depends on severity of symptoms. For major organ involvement (kidneys, brain, heart, lungs, ETC.), stronger meds (steroids &/or immunosuppressants) are required. But people without major organ involvement can benefit from the lightest class = antimalarials like Plaquenil. The "sticky post" about resources (at top of thread list) has suggestions for books available in libraries that cover this question thoroughly. Hope this helps, best wishes, Vee

     
    Old 09-27-2009, 10:14 AM   #3
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    Re: Treating lupus without prednisone

    Velvet, I am one that would have to forgo the steroids as well. I had an adverse reaction to them during a round of epidurals that affected my blood pressure and heart. I am no longer a candidate for steroid therapy. I know if it were life and death, they might be used. But I am adamant about not having the same reaction occur again. I do have to say that I have a history of medication reactions that is extensive, so I was not surprised when this one happened. I try to research any new treatment modalities online and I happen to have an excellent Rheumatologist that stays up to the minute on new trials, etc for Lupus and Fibromyalgia, both of which are his specialties. So if I run across something new, I feel comfortable approaching him with any questions on possible treatments. I know there are other treatments available to me that do not involve steroids, and of course, it would hinge on the amount and type of involvement. At this time, I do not have any organ involvement from the lupus but that could change as we all know. I just wanted to say I understand about your concerns with steroids. I did not like the "feeling" I had even when I was not having an adverse reaction to them, so I do understand.

     
    Old 09-27-2009, 01:16 PM   #4
    velvet rose
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    Re: Treating lupus without prednisone

    Thanks so much guys for replying and understanding. You've both given me hope. Do plaquenil side effects include skin reactions?

     
    Old 09-27-2009, 05:36 PM   #5
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    Re: Treating lupus without prednisone

    Plaquenil usually doesn't have skin effects. Some might have an allergic reaction to either the med or the filler in the pills. In fact, my primary benefit from plaquenil is keeping my rash under control.

    BTW...I have had great success with prednisone in low doses.

     
    Old 10-02-2009, 03:48 AM   #6
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    Re: Treating lupus without prednisone

    Velvet, I am like you I told My doctor I would rather die than go on prednisone my reactions are so bad with that drug I just will not take it. I can only hope the plaquenil helps otherwise it will be immune sups for me.
    Good luck with it
    Tess

     
    Old 10-09-2009, 06:30 PM   #7
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    Re: Treating lupus without prednisone

    Good luck to you too and what are immune supps?

     
    Old 10-10-2009, 10:00 PM   #8
    Tess295
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    Re: Treating lupus without prednisone

    Not exactly sure Dr said if this does not work he will use drugs that they use for cancer to suppress my immune system completely but if they do that I will have to give up work so crossing fingers Plaquinal works. Does everyone have stomach probs with Plaquinal my stomach hurts so much most days that I have to take strong pain killers to ease it and even then it just eases the pain it does'nt take it away.

     
    Old 10-11-2009, 01:18 AM   #9
    velvet rose
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    Re: Treating lupus without prednisone

    Quote:
    Originally Posted by heidiclouser View Post
    Plaquenil usually doesn't have skin effects. Some might have an allergic reaction to either the med or the filler in the pills. In fact, my primary benefit from plaquenil is keeping my rash under control.

    BTW...I have had great success with prednisone in low doses.
    Did you have any side effects from taking prednisone in low doses? Do people that take prednisone have acne as a side effect? How severe is the moon face?

     
    Old 10-11-2009, 04:41 PM   #10
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    Re: Treating lupus without prednisone

    My doctor will not put me on steroids either because of weight gain and I do not need any more extra weight. Also I become very unstable emotionally--so they are out. I tried Imuran, but was allergic and nearly died. After that we went to Plaquenil last January and I have been on them since. Only 2 side effects I have is it is turning my hair lighter (blonde to clearish) which is not a bad thing I guess and nausea in the evenings.

    My situation is complex as you can see by my sig below and the Plaquenil etc was at first for the Vasculitis since it was more pressing than the others. In November we will do an annual review (we do small reviews every 3 months) and see if the new drug Benlysta is ready for the Lupus which should help everything else. My insurance won't pay for anything unless it is specified for a particular disease I have--if you know what I mean?

    I truly hope the new drug gets out before the new year. Maybe we will all do a lot better and avoid steriods altogether.
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    Last edited by septemberwoman; 10-11-2009 at 04:42 PM. Reason: spelling

     
    Old 10-11-2009, 04:46 PM   #11
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    Re: Treating lupus without prednisone

    Quote:
    Originally Posted by Tess295 View Post
    Not exactly sure Dr said if this does not work he will use drugs that they use for cancer to suppress my immune system completely but if they do that I will have to give up work so crossing fingers Plaquinal works. Does everyone have stomach probs with Plaquinal my stomach hurts so much most days that I have to take strong pain killers to ease it and even then it just eases the pain it does'nt take it away.
    Hey Tess, will your doctor allow Maalox? When my stomach gets bad I swallow a bit and it settles it somewhat. I also try Pepto. Mine doesn't hurt but the nausea can get bad at times
    __________________
    Lupus, MCTD, Vasculitis, RA, Radiculopathy, T10 &12, L4&5, S1> DDD & Facet Arthritis, OA, HTN, Fibromyalgia, and Hashimotos

     
    Old 10-11-2009, 06:20 PM   #12
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    Re: Treating lupus without prednisone

    This topic seems to never go away. Each person's lupus is different and is treated differently. I'm 15 years in this journey and have tried all kinds of treatments. Some points....plaquenil is an anti-malarial. During WW 2 they found soldiers in the Pacific who were taking quinine to avoid malaia had relief from aches and pains. Thus plaquenil was developed.....it helps with pain for some. Immunosuppresants are cellcept, imuran, and methotrexate. They actually suppress the immune system (thus the name). Cellcept is commonly used after organ transplants. Methotrexate in larger doses is a chemotherapy drug. I'm not sure what other uses there are for imuran. Prednisone is a steroid that is commonly used as an anti-inflammatory. Most commonly used for asthma it is mostly used in high doses for short periods of time.

    I've used plaquenil on and off for 15 years. I think it helps keep my skin rashes under control but does little else for me. I've taken prednisone on and off (mostly on) for 14 years. The body naturally produces the equivalent of 7.5 mg of prednisone so doses below that are inconsequential. I've been as low as 4 mg and lost all the extra weight I gained initially at higher doses. I do take forteo and vit d supplements and get regular bone density tests. Overall I think the benefits of prednisone are greater than the risks.

    I was an early user of cellcept and took it for about 5 years. It worked great and I actually felt "normal" again and greatly reduced my prednisone dose. Then I was diagnosed with a nonaggressive form of lymphoma associated with suppressed immune systems. For that I get regular rituxan treatments....a drug similar to the one being developed specifically for lupus and mentioned in a post below. Rituxan has been used to treat RA and there is some evidence that it helps for lupus. I do feel some increased energy after a treatment. I had a violent reaction to imuran and methotrexate contributed to an increase in liver enzymes. So I am currently out of traditional treatment options. Once my doc is convined my liver issues are related to the methotrexate he has some out of the box ideas for me to try.

    My point? Each person must decide what med/meds work for them and what risks they are willing to take. I'm a risk taker but can be risky with the great medical team I've put together over the 15 years. I also have pretty good medical insurance that pays for the $4000 rituxan treatments. If you keep on top of it I don't think the risks of prednisone are all that bad. And the benefits are definitely there. I have very little pain any more.

    So be leery but don't categorically exclude an entire class of treatment.

     
    Old 10-12-2009, 06:19 PM   #13
    The Terminator
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    Re: Treating lupus without prednisone

    I've had Lupus since I was 17. I'm now 45. I would quit prednisone if I could but honestly without it I wouldn't be here. I only take 5mgs a day but have had many side effects especially osteoporosis. I take Palquinil for joint pains and it's worked great for more than 15 years. Truth is everyone is different and needs to listen to their bodies and their doctor. That and never give up.

     
    Old 10-14-2009, 01:06 PM   #14
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    Re: Treating lupus without prednisone

    I was on prednisolone for 8 years, alongside Azathiaprine. My steroid dose was decreased very gradually, and about 2 years ago I came off it altogether. I had no adverse effects from the steroid when I was taking it, and have suffered none since coming off. I do remain on Azathiaprine and it seems to be doing a pretty good job of controlling my SLE on its own.

     
    Old 10-14-2009, 08:22 PM   #15
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    Re: Treating lupus without prednisone

    I agree knowing what works for you and what dont is very important. I for one can not take prendizone or any steroid in pill form. I am hypersensetive to them and have sever reaction within 1 day. I can however get shots or use steroid inhaler. Could not even handle the Plaquenil I broke out in a total body rash after 2 weeks on it. Treating any illness is going to be different for everyone. Its like pregencies, no 2 are the exact same. Trial and error, and dont give up.

    Teeha

     
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