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Thread: It's definitely a flare up

  1. #41
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    Thanks Anne! Just have to not give up. A month ago, I was almost there when the ungodly headaches were completely and utterly consuming me. Now, HOPE!!!!!

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    Quote Originally Posted by MikeG-2012 View Post
    Thanks Anne! Just have to not give up. A month ago, I was almost there when the ungodly headaches were completely and utterly consuming me. Now, HOPE!!!!!
    I remember some pretty bad headaches, too. A thing of the past! And I'm glad you mentioned the WaterPik. That is going to have to be on my Christmas list for myself.
    Anne, dx'ed April 2011

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    Week 3:


    I am so glad that today was a good day. Yesterday was awful! I "Hammied Out" all day from the pred. (If you haven't seen the movie Over the Hedge, please do so. There is a squirrel in the movie named Hammy, which is a perfect example of a person high and flying on pred.). Anyway, after a day of Hammy, I got home and had the emotional and physical crash from the pred too. Raged at the pile of dished on the counter, raged at the dogs for just about everything that they were doing to intentionally tick me off, cried at my raging, raged some more, cried some more... It was an awful night. I am a very emotionally calm, even and stable person, and yesterday just killed me to be like that. I know it's the pred, but the fact that I can't do anything about it makes the downer of the rage episodes even more emotional. I really hate Prednisone! Good news that I slept good last night and woke up this morning to a brand new day.


    The infusion went well again today. The Benadryl hit me a little harder than normal today, and was for the first time pretty sleepy/dopey at the end of the treatment. That might have something to do with the lunch too. The clinic where I've been having the RTX includes cafeteria lunch if you are scheduled over the lunch hour. Today, I "fed my pred" with a hot roast beef sandwich with mashed and gravy, chilli, and French silk pie--yummy. Did I mention that the cafe at the Monroe clinic is fabulous!


    Problem is that now that it is after 11:00 p.m., I'm still up, wide awake, and am scheduled to go into work in the morning. So all of you get a not so short post from the insomniac...


    My rheumatologist showed my wife and I the CT scan from three weeks ago, and it was ugly. Left lung showed a hole/pocket about the size of a golf ball, and right one had a similar hole, albeit a little smaller. I asked what to expect from these, and the doctor said that he hopes that over time, that if the wegs stays in remission, they will heal themselves. I hope and pray that they will. Got good news that I get to taper my pred back from 80 to 60 this week and to 40 after my infusion next week. I'll stay on 40 for a while for the lung issue, but I will take 40 over 80 any day. We talked about me being a failure of the drug Mychophenolate as an immune suppressant. After a month off the RTX, I will be starting a new immune suppressant, which I forgot the name of already. My choices are somewhat limited because a good number of immune suppressants are sulfa based, and I am allergic to them. This one is an older transplant drug that is not used for that anymore, but is still used in rheumatology offices regularly for vascular diseases and immune suppression. I'll post the name if I ever remember it.


    Went to the ENT later in the afternoon for my weekly nasal clean out and he said that the sinuses are looking better than they have in about three months. There's still crusting going on, but he thinks we now just may be getting ahead of the staff infection and wegs for the first time in a long time. Next week, same routine; infusion followed by ENT visit for a check and cleaning. A note to all of you who have regular nose endoscopy by your ENT: Take your rinse stuff with you and rinse immediately prior to your appointment. It really helps them remove the crusts and your nose won't bleed from their removal either. My ENT is very happy to wait a few minutes before they numb me up to do this. Makes his job easier if I'm more comfortable with his pokinig and prodding too. I take enough supplies to rinse out after the procedure too to get out all the loose stuff he leaves behind. I walk out of there feeling like I could drive a truck from sinus to sinus with my airways completely open. Feels so good!! (-8


    Anyway, I think that's probably enough for tonight. Hopefully more good news next week too.


    Have a great night evereyone.


    MikeG-2012
    Last edited by MikeG-2012; 11-22-2013 at 04:53 PM.

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    Good to hear things are looking up for you, Mike. Hope it continues.

    I haven't had the pred rages you describe, but have had the wakefulness and difficulty getting to sleep. I found that taking 3 mg of melatonin 60-90 minutes before bedtime helps me get to sleep. It also helps if I get some light cardio exercise (walk for about 30 minutes) during the day.

    Good luck and better health!
    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

  5. #45
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    I'm also glad to hear it's going well, Mike. The "pockets" in your lungs sound a lot bigger than anything in mine, which were described as "numerous small cavitary lesions". Others have had "nodules". I guess it happens a bit differently for everyone. I'm glad to hear there is a decent chance of them healing.

    80mg. would be a lot of pred to be on! I've never been on more than 60mg. I don't think I was ever like Hammy, but I do remember some pretty good rages coming out at unexpected times. Even at 10mg., I sometimes rage at my cats for being annoying.

    I don't remember hearing about any of our immunosuppressants being sulfa based. I've only heard about Bactrim, a preventative antibiotic that many of us take, being sulfa based. But your docs know more than I and maybe someone else can speak up and clarify this for me.

    I, too, sometimes use melatonin to help me sleep, but only take .75mg, not the 3mg. that Pete takes. Perhaps the 3mg. would work better for you. It is readily available here on grocery store shelves and is inexpensive.

    Best of luck for continued progress!
    Anne, dx'ed April 2011

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    Week 4, Treatment 4 -- A Reason for Thanksgiving

    Yesterday was my final RTX infusion. Everything went great. IV site this morning is smaller than the prednisone pimples on my arms. I learned that a good can of caffeine pop overcomes the Benadryl drip pretty well. Overall, my experience with the Rituxan has been a good one. I never had any side effects, and felt fine leaving the clinic. Now the wait is on to see if this takes, and I can have some lasting relief for a little while. The past twenty months since being diagnosed, has been more difficult than I could have expected. It has changed me, my family, my plans, and given me a whole new perspective on what is really important in my life.

    So, this Thanksgiving, I'm thankful for many things. First, I'm thankful for my faith, and that is all I will say to keep this within the rules. Second, I'm thankful to my lovely wife and best friend, without whom, I would have never made it through all of this. And lastly, for all of my friends and co-workers who have been so supportive this past twenty months.

    Happy Thanksgiving Everyone!!

    Mike

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    Having just read this thread from the beginning, it's great to hear that you are feeling so much better Mike.

    I couldn't agree more about giving thanks to our 'nearest and dearest' (colleagues included in that!) - I know we didn't choose to be as 'special' as we all are. . . but nor could they ever have envisaged playing such an important role themselves, being our 'rocks', supporting us in some of our darkest times!

    As I sit here (enjoying what I have to say is a rather nice glass of red!) I raise my glass to all those who are supporting someone with this disease. . . to our 'Wegs Rocks' . . we couldn't do it without you!

    Julesx

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    Quote Originally Posted by Jules View Post
    Having just read this thread from the beginning, it's great to hear that you are feeling so much better Mike.

    I couldn't agree more about giving thanks to our 'nearest and dearest' (colleagues included in that!) - I know we didn't choose to be as 'special' as we all are. . . but nor could they ever have envisaged playing such an important role themselves, being our 'rocks', supporting us in some of our darkest times!

    As I sit here (enjoying what I have to say is a rather nice glass of red!) I raise my glass to all those who are supporting someone with this disease. . . to our 'Wegs Rocks' . . we couldn't do it without you!

    Julesx
    Thanks Jules! I am feeling better. Still fatigue pretty easy, but with diminished lung function, I guess that is to be expected. Every day is a small improvement; some days smaller than others.

    I have to say that when I was in a lot, and I mean A LOT of pain, when my sinuses were flaring to epic proportions, my wife and co-workers were dealing with a steroid ridden, irritable, crabby guy. Somehow, they saw past the exterior and realized what I was growing through and helped me cope though it.

    The people that support us weggies all deserve medals!

    MikeG-2012

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    Hi Mike,
    I just ran into your thread and can't believe I'm going through the same thing as you. I was in remission for 3 yrs and then on Nov. 9th they came back. Nodules in my lungs. Back on 60mg Pred and 4 treatments on RTX. I had 2 so far. I also seem to be tolerating them well. Hardest part is the pred and dealing with my "normal" life of being a wife and mother of 3 small kids. Glad you here your doing well and I hope your new meds keep you in remissin for a long long time! Thanks for posting your story!

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    Week 5 - Pimples, Cramps, Bloating and Fatigue

    It has been a week since the last RTX infusion and the taper of the pred to 40 mg. Now, the fun begins. After tapering off the pred from 80 to 40 in two weeks, I'm noticing that I'm not so invincible. My breathing is a little for the worse after the taper to 40, and I notice that I am fatiguing a lot more walking at work. Oh, and did I mention that My skin looks like a teenager? Prednisone Pimples everywhere! I thought I was done with those 30 years ago! ARRGH! I did notice that if I use my tea-tree dandruff shampoo on my forearms! sides and back! it is helping to diminish the pesky little bumps.

    The past week, I've been waking up feeling fatigued in my leg muscles a lot more than usual, and overnight, I've had a few more leg cramps than normal. I'm noticing too that I must be retaining a lot of the water that I am drinking, because my feet, calves and ankles (which I've been calling cankles) are showing some noticeable swelling as the day progresses. Hopefully, this will pass as my body gets used to the lower dose of pred, and the bloating can start to subside.

    Overall, I'd say this week feels like a wash--no noticeable improvement. I see the docs next week, and will have another chest x-ray to see how the lungs are doing. So, for this week, slow and steady is my game plan.

    MikeG-2012

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