Hospital's strange reaction to methotrexate - anyone have similar experience?

Posted , 6 users are following.

I take Methotrexate (and Humira) for my RA.

I am in Australia. I recently had a five day stay in a public hospital after a fall, and was admitted to hospital though Accident and Emergency. I was put in a public, 4 bed general ward for two days and then moved to a private ward when one became available.I had assumed the move was because I have private health cover which would pay for the private ward.

I saw my Rheumatologist in hospital as he has privileges there, and he said just to miss the dose, and take it when I get  home. None of the nurses made any specific references to the Meth. until one nurse from the Oncology Ward was relieving. She asked if was I flushing the toilet twice each time I used it and disposing of any waste, I suppose like tissues, in the biohazard bin - which I hadn't noticed  was near the door. She was, overall, rather unpleasant and a combination of critical and patronising.

When, post-hospital, I  had my next scheduled visit to the Rheumatologist, I mentioned this to him and he was really annoyed. He said he had had so many arguments with the head nurse of the oncology ward at this specific hospital about the dosage size of Methotrexate for  RA being negligible and completely harmless, and even if it wasn't, I hadn't taken it for  several days prior to my admittance and  that it passes out of the system within 16 hours of having been taken. He said the head oncology nurse believes in isolating anyone who is taking any dose of Meth.

I had a double knee replacement five years ago in a private hospital and was there for five days and at a rehab place for fourteen days and no one there mentioned anything at all about it.  None of the pharmacy information sheets I was given included anything about needing to carry a bell to ring like a leper.

Has anyone else experienced this? Is it a common reaction to Methotrexate? Or is the head nurse of the oncology department have a bee in her bonnet about this? If it is just her, for any elective surgery in my future, I will select a different hospital. Unfortunately, for emergencies, that's not possible.

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  • Posted

    I had a hip replacement a couple of years ago at a big Brisbane hospital, same treatment, scared the hell out of others in the room, until I demanded the nurse explained to the others that I was not a danger to them, they were the danger to me, because of my compromised immune system.

    2nd time around I noticed I was in a room by myself, maybe a little paranoid by a senior nursing staff member.

    Again I already knew that you do have to be careful, and I understood about all tissues etc being put into cyto-toxic bin rather than normal rubbish, even warn other Dr's, dentists, etc if I have to have any sort of procedure done.

    Probably going overboard, but better sure than sorry, I do know my sister, now senior nurse had needle stick injury years ago, and for months she had to be off the wards, just in case she had caught something, very scary time for all the family, so I do not blame them for being paranoid in the least.

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    • Posted

      I'm a nurse and understands about being stuck by a needle what possible affect it could have. But have you experience healthcare staff acting like you have a plague cause taking MTX? Btw I'm on MTX take 8tabs wkly.

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    • Posted

      Needle stick is a very different thing! Years ago they probably still kept healthcare staff off because of the risk of AIDS. That no longer applies in many countries.
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    • Posted

      I knew you had to be careful, but everyone had previously given me the impression it was because my immune system was suppressed eg don't get sunburnt, keep an eye on cuts for potential  infections, keep skin moisturised, floss, etc, not because I was an actual danger to anybody else. I have three monthly blood tests and never once has a phlebotomist said anything along the lines of "Ooh, methotrexate. I'd better put on double gloves" and when I was  in hospital none of  the other nurses had on gloves when taking my BP or performing normal tasks like administering pain meds -  maybe they did and I just didn't notice  (but I don't think so), but they certainly didn't specifically "glove up" when dealing with me.

      I can appreciate your sister's anxiety about potential fallout from a needle stick injury - any needle stick injury in any situation is a worry, but especially so in a hospital -  but I really don't understand why I am a greater danger to anybody else than is the average patient. I can understand if it was a case of, because I have an impaired immune system, that I may be more likely to be harbouring an infection. However, this is not the impression they gave. The biologic I take also suppresses the immune system, but didn't get a mention. It was specifically taking of Methotrexate - as if it had some type of toxic effect on others and causes an evil miasma that almost permeates the environment.

      It sort of raises red flags in my mind about what Methotrexate is actually doing to me. 

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    • Posted

      Yes, I was treated as though I had the plague, bin beside the bed with CYTO-TOXIC, nurses dressing the purple gowns and purple gloves.

      This is what the other patients in the room noticed and wondered about, because I was soooo obviously being treated differently to others in a 4 bed room, and why I asked the nurses to explain to them that I was no danger to them.

      Because I have been on MTX for 15 years for arthiritis, I refused to take my dose, due on the Friday, the day after my surgery, missing one dose does not seem to be a problem for me, such a fuss was made about me refusing my meds.

      And then when it came to my 2nd hip replacement, again due Friday, same day as my surgery, chemists in pre-op-clinic, said just keep taking as normal, but on day of surgery I was specifically asked had I taken my dose of MTX, and said NO, I did not think it was a good idea, male voice in the background said smart girl, referring to me, but when I got to the ward, treated as though I had again taken my MTX, all nurses treated me as though I had something nasty.

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    • Posted

      As a former nurse it is good practice in general to use universal precautions for all pts. MTX is considered a chemo mild one and understand about the disposal of oncology wast. Hospital staff need to be mindful amd considered to pts on the receiving end. No one once to be treated as a leper. Perhaps they should had put you in a pvt room to begin with. As to holding your MTX while taking surgery that was a wise decision,MTX increase bleeding time,I'm on coumadin for PE and my INR ran higher 3.6 therapeutic range is 2-3. Some nurses become robotic and forget pts are people with feelings and emotions.

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    • Posted

      Because of my RA, or in reality psoriasis arthirits, for the last 15 years, I have educated myself about medications and being a little doubtful about MTX and other RA meds, I ask questions, and even then more questions.

      I was prescribed Arava or Leflunomide, at 20mg dose, and within days had developed really nasty feeling headache, and I don't suffer from headcahes, went to my regular GP, who was supposed to follow up with routine care, between specialist appts, and told him I felt terrible, blood pressure through the roof, I pointed out to him the only med I had changed was the Arava, he looked up in his computer, and said no relationship, I argued with him and said it must be, he gave me a prescription for strong blood pressure meds, which I had filled.

      When I got home, I looked at the arava bottle and there on the side of it was the manufacturer, I rang them and asked for medical advice, explained what had happened, and they immediately asked for my regular Dr's phone number, about 20 mins later got a very abrupt phone call, "you know those meds you were talking about this morning don't take them anymore", and the sod hung up on me, he didn't even bother to write a letter to the specialist, I mentioned to specialist what had happened at the next appt, and she started flicking pages of my file, saying no letter here mentioning that. GRRRRRR!!!!!.

      I have been tipped off by my regular chemist who I told my story to about GP, and he said that's funny we have just had an alert about blood pressure with this arava, apparently only about 2% of patients have this issues with this particular med, annoying is it worked, arthritis was gone, but side effects were going to kill me, some years ago now, but was I one of the ones who did have a reaction to the med.

      I do the same for my husband, he has heart failure, and I have made a study of his condition, just for your interest, when they did an angiogram, he has NO blockages in his arteries, apparently his sister who also has a heart condition has the same, no blockages.

      I have even said to the heart Dr's are you not interested in why these two heart patients have no blockages, as I understand it 98% of heart patients issues are caused by blockages or plaque in heart arteries, and only this year have I had a young cardiologist show any interest at all, 7 years on since husband got sick, now wanting to test our children, starting with echocardiogram, to see if they have any plaque.

      Only explanation I have is genetic, maybe of interest to some is I have traced this family back to central London, 1800's or so, and I have been able to trace out a couple of other branches as well, so if Dr's really interested I will be able to give them the family tree and descendants, all from public and census records.

       

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    • Posted

      That is very good! And I encourage every and anyone to be proactive in their medical plan and that of their love ones. Drs uses the same thing we have access to,the internet! Our body is the strongest thing we have listen to it! If you are feeling a certain way or having symptoms after starting a new medication and your PCP tell you differently like in your case don't stop keep going and find answers. Even if you have to tell your Dr you can't continue with a certain medication. It's your body and your life!

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  • Posted

    A strange head nurse I think. They don't make that sort of fuss in Europe.

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  • Posted

    I am in the UK and have had numerous orthopaedic surgeries over the last few years. I have always been told to stop my methotrexate inj 4 weeks before and 4 weeks after an operation. No one has ever been worried about the fact I am taking the medication. Not sure what the Oncology nurse had a problem with. She is obviously used to large doses in cancer care but shouldn't have treated you like a leper. As a former nurse that was definitely bad nursing practice.

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    • Posted

      Thanks. Yes,  perhaps  that's it - just an officious head nurse for oncology at that specific  hospital who has collected a cadre of like minded people around her. As I said, my previous hospital visits for my knees, no one mentioned it, and, during this stay,  the actual rostered staff in the general ward didn't seem fussed at all.

      When I had my knees replaced, it was all done very quickly - probably three/four weeks from seeing the Orthopaedic surgeon to the operation, and nothing was mentioned about not taking the methotrexate beforehand (which they should have) and afterwards the staff quite happily administered my weekly 10mg dose without a problem.

      If I ever have to have elective surgery again, I will investigate the hospital's attitude to methotrexate beforehand. The last thing I needed wast his woman's reaction at that time.

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  • Posted

    I thought you might all be interested in this document from the Welsh Health Board on safe handling and administration of INJECTED methotrexate. It appears to me to apply to the drug itself and the possibility of spillage. 

    http://www.wales.nhs.uk/sites3/Documents/814/ABHB0442%20SCmtx-GuidelineAdmin%26SafeHandling.pdf

    and this one about the use of oral methotrexate in oncology, the relevant bit is on pp21-23:

    http://www.grpct.com.au/wp/wp-content/uploads/Clinical-Guidelines-for-the-Administeration-of-Oral-Chemotherapy-in-the-Community-Setting.pdf

    which describes the procedure for ONCOLOGICAL doses - and says somewhere earlier that this document is not applicable for methotrexate used in other disciplines. It is obvious from this WHY this oncology nurse made such a song and dance - because she is obviously unaware that rheumatological doses are a very different matter.

    THIS

    https://www.ouh.nhs.uk/oxparc/professionals/documents/methotrexate-scp-july-2015.pdf

    is a policy document for use of methotrexate in rheumatology. The only mention of safety precautions is the safe disposal of needles. 

    You have to assume that this nurse hasn't been trained properly in the precautions for rheumatological use in hospitals - which are primarily being sure that the dose is only dispensed once per week, not daily which could be life-threatening. The precautions for that aspect are very strict. 

    Hope you find this useful.

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