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    Default I need some advice

    Good afternoon my friends,
    I was wondering if any of you have had any experience with this. I finally tapered off all prednisone. I timed it between my first round of Rituxin & my second since I knew they would give me a large dose of steroids. After my first round of Rituxin (this 6 months I mean not ever), I started having terrible back pain around my kidneys that kind of wraps around my belly. I tried everything to get rid of it. I notified my rheumatologist, she said that Rituxin can cause back spasms (who knew?). After a huge dose of steroids again at my second infusion the back pain went away & I jumped for joy. Then it came back! I was at the ER all night where they treated me like a drug seeker! I asked them to test my cortisol level & the ER said they
    Don?t do that. My rheumatologist says they are withholding Rituxin until this is figured out. The ER said my kidney function was fine. I don?t know what to do! I am following up with my PCP tomorrow & in the meantime I?m miserable!! Advice?


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    Default Re: I need some advice

    This is a new one to me. Do you get your inflammation markers (sedimentation rate and C-reactive protein) checked regularly? They would indicate if there was abnormal inflammation, and that might start effective treatment. Also, have you tried a heating pad or used aspirin or Tylenol to reduce pain?

    Hope you get relief soon...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: I need some advice

    Natrice,
    Tapering Prednisone is tricky. How much did you decrease, and at how fast a rate? If you read Pete’s old posts, it took him a very long time. This is the advice I am following. Like 1 mg. a month, then when you get to 5 it gets tricky. When I tried to get off too fast I had some weird reactions. This caused me to get back on it and the reactions disappeared.
    I am also getting my infusions now and using this as the time for prednisone decrease. Good luck to you. Please keep us posted.
    Masha

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    Default Re: I need some advice

    Quote Originally Posted by Pete View Post
    This is a new one to me. Do you get your inflammation markers (sedimentation rate and C-reactive protein) checked regularly? They would indicate if there was abnormal inflammation, and that might start effective treatment. Also, have you tried a heating pad or used aspirin or Tylenol to reduce pain?

    Hope you get relief soon...
    Hi Pete,
    I?m a strange one. My ESR is never high, including during a flare. I will get a positive ANCA MPO during a flare. I have tried over the counter pain relief with no success.


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    Default Re: I need some advice

    Quote Originally Posted by Masha View Post
    Natrice,
    Tapering Prednisone is tricky. How much did you decrease, and at how fast a rate? If you read Pete?s old posts, it took him a very long time. This is the advice I am following. Like 1 mg. a month, then when you get to 5 it gets tricky. When I tried to get off too fast I had some weird reactions. This caused me to get back on it and the reactions disappeared.
    I am also getting my infusions now and using this as the time for prednisone decrease. Good luck to you. Please keep us posted.
    Masha
    It took me over a year to taper off the prednisone. I know my body loves it. I tapered very slowly. After I got to
    5 mg went down 1 mg a month.


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    Default Re: I need some advice

    It sounds not fun. I have no solutions but it couldn't hurt to try a hot epsom salt bath. The heat and the magnesium might help. I feel for you too about needing something for pain relief and being treated like a druggy. I currently have a terrible night cough that keeps me up for hours and injures my back with the strain. Can I get some codeine cough syrup for occasional relief? Oh hell no. I was told I MIGHT become a drug addict. Drs have just gone koo koo on the subject of opiates. When I was young codeine cough syrup was available over the counter and somehow I didn't become a heroin addict.

    I do know that symptoms can change too. Hopefully this one gets tired of bothering you and moves ON.

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    Default Re: I need some advice

    Quote Originally Posted by NatriceRomeo View Post
    Good afternoon my friends,
    I was wondering if any of you have had any experience with this. I finally tapered off all prednisone. I timed it between my first round of Rituxin & my second since I knew they would give me a large dose of steroids. After my first round of Rituxin (this 6 months I mean not ever), I started having terrible back pain around my kidneys that kind of wraps around my belly. I tried everything to get rid of it. I notified my rheumatologist, she said that Rituxin can cause back spasms (who knew?). After a huge dose of steroids again at my second infusion the back pain went away & I jumped for joy. Then it came back! I was at the ER all night where they treated me like a drug seeker! I asked them to test my cortisol level & the ER said they
    Don?t do that. My rheumatologist says they are withholding Rituxin until this is figured out. The ER said my kidney function was fine. I don?t know what to do! I am following up with my PCP tomorrow & in the meantime I?m miserable!! Advice?


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    Hi Natty,
    Sorry for your pains. My "pred rational" says that it might be pred related: you have no pains while on 100mg. When its out of the body the pain comes. I think that the reduction from 100mg to zero is too BIG for the body to adjust. In my case, I couldn't reduce pred during the rtx times. On the contrary, I needed to add more pred after the IV to make it a gradual decrease. For example when I was on 10mg I took 20mg 2 days after the IV, then 15, and after thay back to 10.
    I know how hard you worked to be off pred and thats a risk of using it back. I understand. Just sharing my experience. I am allways on 5mg, sometimes on higher doses.
    Please update us how are you doing.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: I need some advice

    Quote Originally Posted by me2 View Post
    It sounds not fun. I have no solutions but it couldn't hurt to try a hot epsom salt bath. The heat and the magnesium might help. I feel for you too about needing something for pain relief and being treated like a druggy. I currently have a terrible night cough that keeps me up for hours and injures my back with the strain. Can I get some codeine cough syrup for occasional relief? Oh hell no. I was told I MIGHT become a drug addict. Drs have just gone koo koo on the subject of opiates. When I was young codeine cough syrup was available over the counter and somehow I didn't become a heroin addict.

    I do know that symptoms can change too. Hopefully this one gets tired of bothering you and moves ON.
    Cough syrupes never helped me when the coughing is WG related. I am sorry for your suffering. Did you see your lungs dr. ? I would go and check why do you cough so much, spirometry, X-ray etc. Please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: I need some advice

    So, I followed up with my PCP. She believes it is muscles spasms. I got a shot of Tordol & with an hour it helped! So, I guess you can add muscle spasms to the list of side effects of Rituxin. on another note, I told my PCP about my treatment at the ER and being treated like a drug seeker. She said... ?what do you expect? You have a chronic illness. People with chronic illnesses are seen all the time for pain in the ER.? I asked her if she knew the last time I was in the ER. It was like 8 years ago. & when I seek medical care esp in the ER, I expect to be treated like a human cause that?s what I am. My illness does not define me & that?s no excuse! I?m flabbergasted by this! I?m in the medical field, when I run into people with illnesses like ours-I will treat them more aggressively! Anyway, that?s my update. Thank you all for your concern.
    Natty


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    Default Re: I need some advice

    When I was in the initial stage of wegs, my pulmonologist prescribed tessalon perles for coughing. They reduced the coughing, but did not completely eliminate it.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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