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Back from my hospital vacation and left on no meds! Help!

Posted , 5 users are following.

Lisa_Batts
Lisa_Batts

Those of you who know me will know that I've just spent 10 days in hospital due to my immune system along with antibiotics not being able to fight infection. Due to the fact that I had been unwell I stopped the MTX. Whilst in hospital one doctor told me it had nothing to do with MTX why I kept getting infections. I asked to see my specialist who explained nothing but to stop the MTX as we had our 4 month review coming today. I got a VM just saying my appt had been cancelled and they would ring with a new date which they haven't yet. So due to 4 weeks now with no meds my RA is swelling painfully and turning black again. I can't go through weeks of that again and am seriously thinking of taking MTX tomorrow as I have some left. My brain says that is stupid my legs say do it. Any advice please 😊☀️

0 likes, 15 replies

15 Replies

  • mrsmop
    mrsmop Lisa_Batts

    Posted

    You and I are in the same boat! I stopped my mtx about 6 weeks ago, my very late appt was cancelled last week and, lik Ed you, no new appt.. apparently my Consultant is/was ill.

    I don't know about you Lisa but I can't take my mtx an dc have no other options. My GPs are trying to help but keep telling me it isn't their area of expertise.

    So, that doesn't really help you, does it?!

    • mrsmop
      mrsmop

      Posted

      Sorry, my tablet is doing its own punctuation
    • Lisa_Batts
      Lisa_Batts mrsmop

      Posted

      Hey you ☀️☀️ really what is going on. Really don't know what to do. GPS won't help. I'm phoning my specialists secretary tomorrow. Why put you on a potent medication then leave you on nothing. It's ok. It only takes about 8 days for him to return my call by which time my leg should have fallen off and I can sue for loads of money so we can all go have a holiday.... I may need a piggy back though 😂😂😂☀️ Xxxxx
    • mrsmop
      mrsmop Lisa_Batts

      Posted

      I'm going to have my bloods done tomorrow at the hosp so I thought I would drop in on madame secretary. I do hope he hasn't left.

      my Consultant isn't allowed to speak to patients on the telephone. Even my GPs think that is mad

      A holiday sounds a great idea

    • Lisa_Batts
      Lisa_Batts mrsmop

      Posted

      Good luck with your bloods 😊 I am phoning my specialists secretary tomorrow although the consultants don't work Wednesday afternoons! I may have small feet but I can kick hard! I am NOT going back to all this swelling/pain etc after hell on 4 months of MTX. It's like starting from the beginning again. Hope you are doing ok lovely lady ☀️☀️☀️🌸🌸 xxxxxx
    • johnfs49
      johnfs49 Lisa_Batts

      Posted

      Hey Lisa,

      We all know you Essex girls get legless when you party, but you don't have to go the whol hog and loose one.

      I will piggy back you to the beach each morning and back in the evening.

      Remember that with just one leg, it would take only half the booze to get legless.

      On a serious note, your consultant sounds a real pain in the you know what.

      My consultant is great, always have a laugh and joke when i have an appointment. Never to busy to talk if i phone, always gets back in 24 hours if i leave a message.

      Never says get undressed, but get your kit off. Think she has the hots for me. Ha ha ha.

      She was actually on the TV a couple of nights ago in the embarrasing bodies program.

      You take care Lisa, i would always make time to visit or drive you to hospital if you need a ride.

      Oh i do have some super glue, a needle and thread to if the leg does fall off.

      XXX

    • Lisa_Batts
      Lisa_Batts johnfs49

      Posted

      John if I've replied twice I'm not losing the plot.... Well maybe a little! My phone isn't playing nicely. Oh how I would love to get legless but unusual for an Essex girl I don't drink. Wish I did right now though. My consultant cancelled my appt to try me on a new med because he 'went on annual leave'.... Boy did he not know who he was cancelling! I managed to get an appt for 21st but until then no meds for about 6 weeks!

      Thank you for your kind offer but dad says I mustn't talk to strange men 😂😂😂😂😂

      I hope you are well and enjoying the little bit of sun that popped out ☀️☀️ 😊😊😊

    • johnfs49
      johnfs49 Lisa_Batts

      Posted

      Glad to see you have some of the banter back Lisa.

      Me strange !!!!!!!!!!! Nah, a bit crazy at times, not sure if i'm funny Ha ha or He he, but i'll work that out one day.

      So, a bag of sweeties won't work with you then, may be i'll take your dad for a drink first.

      Reading all these posts makes me feel so very lucky. Been on MTX 20mgs since May 2003, not had any problems like most others have.

      Have my appt 24th, will get my bloods done this Wednesday as i will have a birthday drink Friday.

      A few more grey hairs and some more wrinkles, should i get a blue rinse next time i have my hair done ?

      You all take care, we are the MTX gang, so support each other.

    • Lisa_Batts
      Lisa_Batts johnfs49

      Posted

      Dear John..... I've always wanted to write that 😂😂😂😂

      Happy birthday for Friday... Have a drink for me.

      I wish I had been able to tolerate the MTX as it worked wonders for the psoriasis RA and having been off it for a few weeks the swelling has come back painfully and quickly. I do wonder whether it was mismanagement of the drug rather than the drug itself that put me in hospital. Can I please still play with the MTX gang if they keep me off it? 😊😊 just wondering I can be quite annoying with my doctor as I have the absolute audacity to ask questions 😂😂😂 perhaps they put me in hospital to shut me up!! 😂😂

      Telegram from Queenie due yet John? 🙊🙊🙊😂😂😂

  • nomoreflipflops
    nomoreflipflops Lisa_Batts

    Posted

    Hi Lisa. You poor thing suffering so much can you not ask you're doctor for steriods or would that not help matters? Hugs you're way x
    • Lisa_Batts
      Lisa_Batts nomoreflipflops

      Posted

      Hey you. Hope you are doing well 😊 when I was in hospital they whacked me on 30mg of prednisone and then one day they just stopped it! I had to tell the doctor you can't just do that and he agreed and put me on 20mg to decrease slowly until I get to 5mg and stay on that. I'm down to 15mg but I don't really like high dose as they make me want chocolate.... Mountains of chocolate! Also they make me a bit hyper which sounds fun but not when your head wants to do more than your body will let you 😊😀☀️
  • cheria
    cheria Lisa_Batts

    Posted

    Needing to get back with you about much of your posting, I will share that methotrexate very much so lowers the immune system. I will get back with you as to how I brought my immune system up. Do you take any other medications?
    • Lisa_Batts
      Lisa_Batts cheria

      Posted

      You, me and everybody else on here knows it lowers the immune system... It's just some of the doctors who disagree that is why I couldn't shake off infection! What do we know hey? 😂😂 I take folic acid 7 days a week, vitamin B strong compound, prednisone 15mg a day and a thiamine supplement. However as the doctor has now told me not to take MTX anymore I'm not sure I need to work on my immune system at the moment. I just want the pain, swelling and black purple knees to stop!
    • cheria
      cheria Lisa_Batts

      Posted

      Sadly we all have to work at keeping our immune systems good and inflammation down and there are many things we need to do to take care of ourselves that medicine can't do..we have to constantly be proactive.. What is causing your knees to turn black and blue? Or purple?? How painful is this??
    • Lisa_Batts
      Lisa_Batts cheria

      Posted

      Cheria I appreciate you taking the time to reply. Thank you. I am very proactive with looking after my health. I have done much research on things I need to do to help myself so I'm ok there. If I went into the causes and my illnesses this would turn into a book! All I can say is that 4 weeks with no medication is taking me back to where I started and if they don't start me on something now I will be at pain level 10 on a scale of 1 to 10. I can feel it getting worse each day. I'm phoning my specialist today so I should have an answer within the next 8 days... Maybe! 😊
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