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Feeling ill

Discussion in 'Introduce yourself' started by wolf1, Feb 21, 2017.

  1. wolf1

    wolf1 Registered

    Hi all.
    I'm not new here but couldn't find any other way to post.

    I've been having a lot of problems lately, feeling quite ill. My doctor over the last 3 weeks have been taking my blood regular to find out what's wrong. My haemoglobin has been dropping slowly since late last year and now showing 100. The norm I was told is about 135.
    I had a phone call to say go back on monthly bloods and that all is ok.
    I phoned my doctor and said "I feel really ill what's wrong then?"

    She called me in to see her for an MOT so she called it. My ankles, hands and stomach were swollen. She sat me down and said "I had all the Simptoms of being poisoned by Cellcept". When they checked my bloods I didn't know that they were looking for the big C, but thankfully I haven't got it yaaaaaaay.
    I have four different shaped haemoglobin, one normal shape, tear drop shape, and the other 2 I can't remember. It looks as though the Cellcept is attaching my bone marrow, but my doctor isn't a rheumy so she didn't want to be quoted on what she said till she got hold of my specialist. I'm just waiting to hear from her now.

    If I hadn't complained when I did, my doctor would have felt me alone thinking I was ok. Lucky I told her how I felt. She checked her medical book and sure enough to, it was a Cellcept problem.

    After having that scare of Cancer I'm afraid of taking my Cellcept now. I haven't taken them for the fourth day today. I haven't been told to come off them, like I said, my doctor isn't a rheumy, but a very very good doctor in my eyes. I had to hug her before I left.

    I hope I'm doing the right thing by stopping them for now but it frightens me to take them. I hope it's safe to just stop them, I've been on them 3 years.

    Sorry for the long vent lol.
    Hope everyone is ok as can be.
    Wolf1
     
  2. lazylegs

    lazylegs Moderator

    Do you have a rheumy? If not is your doctor going to consult with one or the drug company? You need some firm answers and guidance about this issue.

    It is never advisable to discontinue a medication without supervision but I understand why you would. In the past I have been taken off Cell Cept when I have been ill. The longest was 4 weeks. Short term I didn't notice a difference. The longer I was off of it though my Lupus symptoms took hold. Other than my original symptoms I didn't experience any other symptoms from the withdrawal.

    Hopefully you get some answers soon.

    Take care,
    Lazylegs
     
    wolf1 likes this.
  3. x_claire_x

    x_claire_x Moderator

    Sorry to hear what has been going on Wolf1...... I have never heard of this with Cellcept and I am very interested to find out how that happens...so I will go on an investigative journey ... I am on Cellcept and been fine so far on it.
    Is your Rheumy aware of what has been happening....really they need to be informed and hopefully consulted with your Dr. What advice did your Dr give before you left the surgery...she must have given you a medical plan of action etc ?

    These meds need to be supervised really as just stopping your immunosuppressants without any supervision could be pretty tough on your body and your disease may go a bit awry.....the disease can't be allowed to run amock unchecked, that could be pretty serious in itself.

    Hope you can get some good advice from your Rheumatologist.................take care.........Claire
     
    wolf1 likes this.
  4. keebler

    keebler Moderator

    Hi Wolf,
    I don't have anything to add. I just want to send you a great big cyber hug. :grouphug:
    Take care,
    Lyn
     
    wolf1 likes this.
  5. wolf1

    wolf1 Registered

    Thanks lazylegs, yes I have a rheumy. My doctor has been intouch with her and I was told this morning that my rheumy is sending me an appointment very soon. I don't feel to bad at the moment but it's only six days I've been off it. So see how things go.
    That's what I'm worried about is a flair,
    Fingers crossed.
    Wolf1
     
  6. wolf1

    wolf1 Registered

    Thanks Claire. When my doctor looked at the serious side effects, she realed me off to the T. My doctor wouldn't tell we what to do because she's not a rheumy and didn't want to make a mistake. She found it through a load of blood tests. It's affecting my marrow.
    I'm hoping to hear from my rheumy soon. I'm just to affraid to carry on taking them after my scare.
    Take care
    Wolf1
     
    x_claire_x likes this.
  7. wolf1

    wolf1 Registered

    Awww, thanku Keebler that means a lot. It's nice to know I have great friend out there.
    Keep safe
    Wolf1
     
    keebler likes this.
  8. wolf1

    wolf1 Registered

    Hi all.
    Once I hear anything I will get in tough and let you know what's going on.
    Many thanks for the reply's
    Take care all
    Wolf1
     
  9. Jessica1

    Jessica1 Moderator

    Just sending a big hug too and hoping that you don't have too wait long.:grouphug:
     
    Last edited: Feb 27, 2017
    wolf1 likes this.
  10. mea

    mea mea

    :grouphug: Sorry to hear this ,hope you get answers soon.
     
    wolf1 likes this.
  11. wolf1

    wolf1 Registered

    Hi all.
    I have an appointment with my specialist on the 3/4/17 so I will let you know what's going on. I've been off Cellcept now for nearly a month, my mind seems to be a lot clearer, I couldn't put a sentence together properly a few weeks ago so there is a bit of a difference there that I've noticed
    I'm still stumbling tho so hopefully that will stop soon. Not feeing brilliant but a little better than I was. If I have to go back on Cellcept I will but I should go back on weekly blood tests then.
    Never mind, see how things go on the 3rd now and I'll let you know if I've had a row off my specialist or not lol.
    Keep safe all
    Wolf1
     
  12. x_claire_x

    x_claire_x Moderator

    Hope you get some answers at this appointment .....wishing you the best :0)
     
    wolf1 likes this.
  13. debatat

    debatat Moderator

    I hope your appt goes well, and you find out what is happening.
     
    wolf1 likes this.
  14. wolf1

    wolf1 Registered

    Hi
    I saw my specialist yesterday and she is keeping me off Cellcept. She has told me there are not much meds left to treat me with. Have to think of infusion.
    For the time being, I have had a steroid injection to keep me going for 3 weeks or so, had more lupus bloods to see if my lupus is still causing problems or in remission.
    If ok I won't have meds for the time being, or there are a few meds left to try but I don't know which ones.
    Also waiting to see my doctor to find out what's happening about my haemoglobin because it is still low. Also hoping to have heart regulating meds because I'm missing beats terrible so my specialist told me to sort it with my doctor.
    Hope I'm sorted soon.
    Wolf1
     
  15. Jessica1

    Jessica1 Moderator

    Dear Wolf, I also hope that you're sorted soon, it must be so frustrating for you. My twin cannot tolerate any medications so far (she has anaphylactic shock) and I've seen her try so many, it's very sad and seems unfair that I keep popping my daily cocktail of pills and there are others like yourself who have to try so many different things.

    Forgive me if I'm completely missing something here but are you having symptoms that they're not sure if it's your Lupus or not? I'm trying to work out why she would give you an injection but think you might be in remission...maybe this is to keep you going while they find another medication for you.

    Sorry if I've confused this, it's late and I should probably be keeping my thoughts to myself until my brain is working quicker!:confused:
     
  16. wolf1

    wolf1 Registered

    Hi jessica1
    Thanku for your post. Sorry for your twin too. It's hard trying all these meds, it's taken a best part of a year going through all my aches and pains. My doctor found out what was happening thru my bloods. Now that I have come off cellcept I'm starting to feel better plus I'm starting to eat more because I'm tasting it which I haven't had much of a smell of taste since I was on the meds.
    She gave me the steroid because I'm in a lot of pain and I've have been swelling in places so it's most proberbly to help me with that. Plus collapsing a lot too. It may be to do with my fibro as well.
    I also asked about Benlista if it was over here yet and she said yes but there's only one person she knows who's on it and it causes palpertations so she wouldnt like to give it to me because I'm suffering from palpertations at the moment, and it's not known well enough about other side effects either.
    Hope your sister and yourself are as well as can be.
    Keep safe
    Wolf1
     
  17. Jessica1

    Jessica1 Moderator

    Thank you for your kind words, Wolf1. It sounds like you're waiting for a few answers...it's good that you're enjoying your food again, I just hope it doesn't take too long for them to put together a plan of action / treatment to get you back on your feet again.
    Take care,
     
  18. wolf1

    wolf1 Registered

    Hi all
    I have an appointment on the 15th of May with my specialist so with any luck I'll find out which way to go( have meds or go without).
    I am feeling better than I was but my haemoglobin is still playing up. Can't have anything to help me yet till they find out if I have an anemia problem that can be sorted by folic acid or I have anemia illness. So waiting on that now as well.
    More bloods on Tuesday, see what comes out of that.
    Keep safe all
    Wolf1
     
  19. Jessica1

    Jessica1 Moderator

    Hello Wolf1, I'm glad that you now have an appointment and that you're having your bloods done on Tuesday. In the scheme of things, the 15th isn't long enough to wait but it probably feels like a lifetime away. Fingers crossed you come out of a good appointment with your specialist:fingers:
     
    wolf1 likes this.
  20. mea

    mea mea

    Good luck with your appointment. Glad you are feeling better.
     

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