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Benulab trial

Discussion in 'Living with lupus' started by Surferboy, Jul 31, 2017.

  1. Surferboy

    Surferboy Registered

    Haha! Lazylegs, I didn't think you'd fall for that old one :roflmao: Sorry. I know what you meant. My poor girls have to put up with this immaturity and terrible jokes everyday. I'm gonna be the embarrassing dads. Immature. Terrible jokes. Even worse loud singing. :rolleyes:
  2. lazylegs

    lazylegs Moderator

    You would think I would know by now as I get the same thing from my hubby and son-in-laws all the time.
    Surferboy likes this.
  3. Surferboy

    Surferboy Registered

    Morning / afternoon / evening (depending on where you are) folks, the trial is now over, and I am now back to normal out-patient care. I might just continue this thread for a few more sessions just to let you guys know how I get on after the infusions have stopped - placebo or real thing - and whether I remain steady or go the other way.

    I had an appointment on Monday, and as mentioned in a previous post, it was as expected a 'wam, bam, thank you, sir' kind of appointment. No more specialist one-to-one care :D But even then, it was good. I think I've just been spoiled over the year :lol:

    It was the usual. I gave bloods and urine sample. The dipstick read 3+. It normally reads 2+. I panicked a little. But when the actual lab result came out, the protein had reduced from 52 to 50. I don't understand why my dipstick result is so drastic!

    My DS-DNA was 170. C3 was 0.84. I'm next going to be seen in 2 months, but have been assured that if things do dip, I could have another Rituximab dose. I forgot to ask if Rituximab is more for the joints or kidneys. Can someone confirm please?

    The pains I mentioned in a few posts above have subsided thankfully. But over the last few days fatigue has crept in in the evenings. But I've played it safe and have hit the hay early. I need to make sure I do this as I'm starting a new job in a week's time, which is going to be even more fast-paced and stressful than my current one :eek: But here's to hoping it will all go well :thumbsup:
  4. lazylegs

    lazylegs Moderator

    Rituxan helps the joints. In some patients it helps both the kidneys and the joints but has not met the previous trial goals. Some doctors still use it as they have a subset of patients it works for.
    Surferboy likes this.
  5. Surferboy

    Surferboy Registered

    Thanks LL. Touch wood, the joint pains are still at bay. At least I know I have the Rituximab option if needed.
  6. Surferboy

    Surferboy Registered

    Long time no see guys :lol: I hope you all are keeping well and out of trouble.

    Firstly, a massive apology to all for not providing updates. I've been meaning to to do so, but things have been absolutely manic (as always).

    I started a new job in July which has taken up almost all my time, energy, sensibilities and slowly my health. I've been working up to 13 hour days and even when I stop, the duties and pressures continue running through my head. Not good! But for once, I've decided that there's more to life than money and work, so have decided to step back and go back to my old job - even though that now means that in about 6 months I may well be out of a job altogether. A BIG concern!!!

    Due to the above, a few weeks ago I had my first proper flare up since I started the Benilumab trial (which finished a few months ago). I could feel it coming on, but I continued to push myself as pressures at work were so much I could not afford to take time off. I then was given the green light by my wife to go away on a surfing trip with a friend. Alas, that didn't go too well! After 30 minutes in the water, another surfer fell off his board and his board went flying in to my face. The water below was now scarlet and I initially thought I'd lost teeth!!! Fortunately, they were all there, but I had a massive gash on my chin and so off I went to A&E. I now have a lovely scar. I also severely bruised my ribs (again).

    I stupidly returned to work on the Monday and went back to pushing myself. A few week later it was all over. I was totally floored and called in sick at work. I had an emergency appointment with my nephrologist who looked at my bloods and urine. Urine results were the best they've been since I was diagnosed with nephritis about 2 years ago - PCR range is now 35 - 50, which isn't too bad. But my DSDNA and inflammation markers are slightly on the rise. My nephrologist thinks this is due to the original Rituximab infusion now having worn off. She has suggested another infusion, which I have agreed to. This will now be in the new year (stupidly, I put work before the infusion!!!!)

    My preds are back up to 10mg. And I'm feeling a little better now. I have a few more weeks in this job, then I'm back to my old job. Can't wait.

    I'll then also get a chance to get my Lupus project back up and running. I'll give you guys more info on this as soon as I have something concrete to deliver :)

    Now, I have my other boss (wife) shouting up at me for the last 20 minutes so should go, or else I'm up for a verbal battering :eek:

    Keep healthy and out of trouble folks :thumbsup:
  7. x_claire_x

    x_claire_x Moderator

    Hi Surferboy,
    Sounds as if you have made some decisions that should help settle your body down...hope you feel much better very soon and have a peaceful Christmas if that is at all possible !!
    Surferboy likes this.
  8. Surferboy

    Surferboy Registered

    Thanks Claire.

    And what did I decide to do after I posted my message earlier today??? I started to clean out the junk in the loft so I can take all the excess junk to the skip before Xmas. I swear, I'm a sucker for torture!!! But now that's it for the evening. I'm going to put my feet up, have dinner and then round off the day with a film :D
    Lupusdude likes this.
  9. lazylegs

    lazylegs Moderator

    My mind thinks sure I can this, this and this done. The body on the other hand rarely agrees. I've found I do much better if I listen to my body. Good luck with the Rituximab.

    Happy holidays,
    Surferboy and Lupusdude like this.
  10. Lupusdude

    Lupusdude Registered

    Great to read all the updates and hear from my friends! Sounds like you're all doing fairly well.
    As for me, I don't know if I mentioned this yet, but I took time off from my bus driving job to care for my wife. The recovery was longer than expected and my employer had to terminate me. I figured it was for the better though since the exhaust fumes were not helping my lungs. My health has been much better since I returned to the benlysta injections. No side effects and my dsdna is dropping. So good news all around with that.
    I hope the holidays find you all in good health and wonderful family sharing.
    x_claire_x and Smile Of Life like this.
  11. Surferboy

    Surferboy Registered

    Lupus dude, sorry for losing your job, but if it's for the better all round, then in a way I'm glad this has happened. My friend is a bus driver. He was a fit and healthy young man, but just from the stress and pressures of driving around London, he has changed as a person and his health is not great. He has gained weight. He has high blood pressure. He has lost hair. And he has lost his vibe.

    I hope both your and your wife take this festive break now to relax and do all the chilled out things you want to do.
  12. Surferboy

    Surferboy Registered

    Right, update time, but firstly, hope you all are well and had a great festive period :)

    With the 31st of January around the corner, yesterday was my final day in my mega stressful role :D I now return back to my old job, which should hopefully be a lot less stressful. Unfortunately, this job might only last until September, after which I might be jobless altogether! Bring on the stress again!!! :rolleyes:

    I had a bit of a flareup after Christmas. I know why.... I well and truly overdone it during what was to be my "relaxing 2 weeks off"! Only myself to blame. :oops::rolleyes:

    Following my Rituximab infusion last year before I started my Benilumab trial, I had a second Rituximab infusion a week ago. Unfortunately, it hasn't kicked in yet so still suffering the joint pains and fatigue. Does anyone know roughly how long Rituximab takes to kick in?

    I'm seeing my rhumy next week so will have more bloods and urine tests.

    And I have progressed on my Lupus project and might call on the assistance of some volunteers who might be willing to help. Can't say too much right now but will reveal all as soon as I've had some more progress :D

    Be naughty guys... but at the same time look after yourselves :thumbsup:
    keebler likes this.
  13. Lupusdude

    Lupusdude Registered

    Done and done! Good to hear from you. I can’t answer the questions about the Rituximab, but someone will most likely come along and fill you in. Sorry about the flare. Those are always frustrating to me, but it sounds like your emotional well being is still intact. I could never be very positive during a flare so it’s nice to see how others handle them.
    Your Lupus project sounds intriguing and I’m looking forward to hearing more. All my best.
    Surferboy likes this.
  14. Surferboy

    Surferboy Registered

    Lupudude, I personally find that the more down I am during a flare the worse I feel. So I try to remain up beat as much as possible. Obviously if it's a real bad flare and I'm struggling with severe fatigue, finding it difficult just getting up due to the pain etc then it really is a challenge staying up beat. But please do try yourself to remain up beat as honestly it really helps.
  15. Lupusdude

    Lupusdude Registered

    I have to agree with you. One of the companies tied in with my health insurance has someone contact me every so often. I told then how I was feeling and they recommended going outside or just opening the blinds to let the sun in. I’ve been trying that for about a week now and it has lifted my spirits a bit. I actually have a tiny garden and I enjoy going out there to look at it. I think there are a total of ten plants and they don’t produce much in the way of vegetables, but it gives me something to do in my spare time. I’ve started reading voraciously and that keeps my mind off the negativity as well. Thanks for the advice! It’s always welcome.
    Surferboy likes this.
  16. lazylegs

    lazylegs Moderator

    When taking Rituxan on a regular schedule it kicks in in a couple of weeks. You haven't had it for awhile so it will probably take about 4 weeks. The B cell depletion from the Benlysta could help with the time schedule.

    Like you I get down when I go into a flare. It is difficult to stay positive so I try to get mad and get even. Beating down the symptoms gives me a goal and I feel in control.

    Lupusdude, I might not be able to out in the sunshine for very long but it does lift my spirits. My blinds are open first thing. Yesterday morning I got an added bonus when I saw my Daffodils had begun to bloom.

    Take care,
    Surferboy likes this.
  17. Lupusdude

    Lupusdude Registered

    Daffodils. Sounds beautiful! I don’t know if I’ve ever tried growing them (probably not), but maybe one day I’ll give it a try. I just came in from mowing down the weeds. Was in the sun for a bit, but it felt good because I’m so darn cold today! Been trying to gobble some red peppers to try and warm myself from the inside out!
  18. lazylegs

    lazylegs Moderator

    In my latitude they are very easy to grow. I planted the bulbs years ago and they come up on their own each year. When they dry up my Irises open. It's the easiest area to care for in my garden.
  19. Lupusdude

    Lupusdude Registered

    Interesting. Maybe I’ll give up on the vegetables and start a flower garden!
  20. Surferboy

    Surferboy Registered

    Haha! Gardening. I got hooked to it last year... Well, killing the weeds anyway. My lovely garden for some reason has been infested with the bleeding' things and I was trying all last summer to get rid of them. The pictures don't show just how bad it is. My lawn has also gone bald.

    I did though manage to cover one of the patches with new grass. Last picture.

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