Author Topic: another weird?.. diagnosed at 21-if i would have stayed on plaquenil... ???  (Read 4576 times)

Styx

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My rheum wants to use pred..of all things I ask for plaq she says no, pred. I am beginning to despise her. Should I take pred..its such a toxic drug it scares me.

Tivia, you are right to be hesitant. I don't know your history, but if she's just prescribing prednisone for typical Sjogren's symptoms, that is completely insane.

I think you said previously that she is the only rheumy in your area?

Styx

Tivia

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Yes she is the only one, she is older and I dont think up to date on sjs info. The next one is about 150 miles away. I just got dx'd with sensorimotor polyneuropathy, and my kidneys are leaking protein, I dont know why she would want to go pred. But she was kinda mean when I asked about taking plaq again, and said I will put you on pred a small dose but you dont have joint involvement you dont need plaq >:(


Val we cant go back in time..but if we could oh the things I would do differently

Styx

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I just got dx'd with sensorimotor polyneuropathy, and my kidneys are leaking protein, I dont know why she would want to go pred.


Ah... that changes things quite a bit. With those manifestations, I would actually try to get on something stronger than pred or plaq, particularly if the proteinuria is severe or worsening.

Styx

irish

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When a person is having the issues that you are having, the kidneys leaking protein, neuropathy, etc. it is not unusual to put someone on prednisone. Prednisone is hard on our body, but it is also a wonder drug. You are working on some hard core symptoms that need treatment. Plaquenil is not a drug that will treat kidney issues or the neuroapthy.

The stronger meds are in order. Imuran, Cellcept, etc. Sometimes the Cytoxan isused too. You need to deal with these issues and ask your doc what she wants to use besides the prednisone. Also, have you been seen by neurology or a kidney specialist??? I would think that these specialists would be in order.

So many people just freak out over prednisone, but when it comes to the serious symptoms of autoimmune disease they are the first line of treatment. The effect of treatment is more immediate and they can be used with one of the big gun meds. This way you have immediate treatment of serious issues while the big gun meds are kicking in. It doesn't work to dig in our heels and refuse to take prednisone "because" of all the side effects. Yes, there are side effects, but saving a kidney is a big deal and requires big meds. Good luck. Irish

Styx

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Irish, I mostly agree, but I don't think "patients use too little prednisone" has been a big problem historically whereas I see prednisone being handed out like candy by doctors of many specialties with complete disregard for the long-term side effects (or whether it's applicable in the first place).

Styx

Aquarius

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Val, I believe in free will but also that some things in life are fated - written into our life script.   

No matter our past actions or the merits of our decisions, what is fated will come our way whether we like it or not.

There is a real possibility that had you made different med choices, it may not have changed the severity of today's dry eye condition - not one single bit.  Some circumstances are fully out of our control.       

anabanana

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Re: another weird?.. diagnosed at 21-if i would have stayed on plaquenil... ???
« Reply #21 on: February 12, 2013, 09:54:07 AM »
When a person is having the issues that you are having, the kidneys leaking protein, neuropathy, etc. it is not unusual to put someone on prednisone. Prednisone is hard on our body, but it is also a wonder drug. You are working on some hard core symptoms that need treatment. Plaquenil is not a drug that will treat kidney issues or the neuroapthy.

The stronger meds are in order. Imuran, Cellcept, etc. Sometimes the Cytoxan isused too. You need to deal with these issues and ask your doc what she wants to use besides the prednisone. Also, have you been seen by neurology or a kidney specialist??? I would think that these specialists would be in order.

So many people just freak out over prednisone, but when it comes to the serious symptoms of autoimmune disease they are the first line of treatment. The effect of treatment is more immediate and they can be used with one of the big gun meds. This way you have immediate treatment of serious issues while the big gun meds are kicking in. It doesn't work to dig in our heels and refuse to take prednisone "because" of all the side effects. Yes, there are side effects, but saving a kidney is a big deal and requires big meds. Good luck. Irish

Hi Tivia,
Regardless of not being treated yet, you've read a bit about my history and I recall saying that I think it is worthwhile to get on prednisone, as Irish said also.  Neurological and muscle involvement is treated with Prednisone as first line; now I am not saying long term, although there might be people here that disagree. I think it is very useful to see if you improve on Prednisone, because not everyone does, so it's not a solution for everyone...But, to see if you have improvement on it can be a guide to further treatment...I am of the thought, after everyone's input and what I've read and been told by a rheumy nurse (I frankly think nurses have better insight than doctors, because they talk to patients longer), is that a combo of prednisone and Plaquenil is the way to start.  It sucks about your doctors mentality, perhaps you could stretch your symptoms if you dont have pain (muscles and tendons can be arthritic too, thus producing pain, aching, my granny had a rheumatoid condition and had a lot of pain)to give your doctor a reason to give you plaquenil, can't hurt...I would not take steroids or any immune suppressants for long periods of time, although I know some people here do just fine on them...But especially steroids, the younger you are, the worse for you...I am in this place and earlier would not consider steroids because of my age, but I am open to see if it reduces or calms my neuro and muscle stuff. I am ready to do it. I have less hesitation about Plaquenil, because of all the positive outcomes overall I've read about it here :)
« Last Edit: February 12, 2013, 10:04:40 AM by anabanana »
Focal lymphocytic sialadenitis less than 1 focus, Dry everything, Neuro symptoms, Muscle weakness, Fasciclations, High inflammatory CRP,Tremor,Balance issues,Dizziness.
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