Tocilizumab and hiospital

Hello everyone,

I came out of hospital yesterday for the second time. My GP called me last Thursday after my visit she went to speak with another doctor at the practice as she was concerned about the swelling in my both my legs. She asked me to go to A&E to check if I had another DVT even though I am taking warfarin which the clinic increased the dose my INR reading didn't change from 1.3.

You may be wondering what this has to do with the infusions. Well, I am going through a really bad flare up right now caused because the nurse at the hospital has had an accident and the Rhumey Clinic have been unable to find a replacement since the 1st week of June. Senior management have stepped in to try and solve the problem, up to yesterday, they still haven't found anyone. I was told that they are doing everything they can and that they have several patients who are having flare ups and waiting to start infusions. I am going to Canada next Wednesday without being able to have 2 infusions I was due.

After reducing the steroids to 7.5mg from 20mg I have now had to increase the dose back up to 20mg. It is the steroids that have now caused me to become diabetic. I had such a hassle trying to get the blood sugar monitoring kit before I left the hospital. I was told by several various hospital staff including the pharmacy that they will include the kit in a container with the rest of the medications before I leave.

This of course didn't happen. I was first discharged without my pain medications as they were (controlled medications) and were not put with the rest, I had another really BAD flare up and ended up back in hospital the next day in server pain, my sister was unable to get me out of my chair to her car to take me back to the hospital and we had to call an ambulance. I was in hospital another 3 day to get my pain under control as best they could. They have changed a lot of my meds, and due to the steroids being increased, I am now on diabetic medications.

All this because I am unable to have the tocilizumab infusions!!!!!!

Do they honestly understand that taking over 2 months + on going trying to get a replacement nurse!!!!!

I went to see my GP this morning and feel better about things apart from being unable to get the infusion.

If anyone knows about the diabetic testing kits, could you please let me know.

I hope everyone is keeping well, I will be back when I get back from seeing my family in Canada.

Sue xx

12 Replies

  • Sue I'm so sorry that's an absolute disgrace, they could have transferred you to another authority for the infusions. Kick off Sue don't let them get away with it. I'm amazed that the only have one rehumy nurse to do the infusions. Start complaining to pals now. Tell them your going to your MP, you have the right to a life. Email everyone and copy your chief executive I did it works. If you have just one email address for someone in your health authority, Google the name of your chief then use the same format as the email putting the Chiefs name in.

    Let us know how you go. And phone everyone I did. I hope things improve my friend.

    Shazbat x

  • Hi Shazbats,

    I don't have time to have a infusion now before going away, I am trying to relax and will be meeting with my GP clinical nurse tomorrow, I was told she will advise me in regards to the diabetes as I don't have a clue. I have had a look online for the test kits.

    The Consultant Rhumey I saw advised I should see my GP and request a transfer to the hospital where I was admitted which is closer to where I live.

    I also saw the Consultant Rhumey whilst I was in hospital and he knows my Consultant..

    I just hope that in 6 weeks time when I return they will have it all sorted. I don't want to do anything beforehand as I may decide whilst over there that I will make Canada my permanent home.

    I am glad all is well with you Shaz, I just want to get sorted here, packing, and seeing the nurses for the blood, my GP will then write me a prescription to make sure I have enough meds to cover me whilst I am away.

    Take care, chat when I return.

    Sue xx

  • Have a wonderful time my friend I hope the RD is kind to you x x x

  • What a shocking story, I am with Shazbat, you should everyone. Contact your MP, go to the papers....trip of a lifetime to visit grandchildren in Canada blighted by uncaring hospital!!!....great headline!

    Don't worry if you can't face it until after your trip, you have at a minimum 6 months to register your complaint formally.

    I do hope you will get to Canada in spite of everything, and that you have a wonderful time with your grandchildren. I would find it very hard to be so far from mine.

    One thing that you should do if possible is to write notes detailing everything that has happened, dates, times, people involved, witnesses, etc so that if you do decide to take it further you have the facts at your fingertips. Perhaps your family might want to help.

    Whatever happens, do have a great visit, I hope you manage to have a stressfree holiday. M xx

  • I will do as Shaz advises when I get back if they haven't sorted things out.

    I just want to look forward to seeing my family. thanks for letting me know I have 6 months.

    I can't wait to see my family, it has been 18 months since I last saw them.

    Take care,

    Sue xx

  • Hope you get sorted out before the trip. Where are you going in Canada?

  • Hi Lucerito,

    Nothing will keep me from that flight.

    I use to live in Toronto suburbs and considering returning permanently.

    if I can sort out the medical side of things.

    Take care, hope you are keeping well.

    Sue xx

  • Hi Angel,

    What a story. Ridiculous. It is almost maltreatment! I feel really sorry for. All the stress before you leave for Canada, and the diabetics you got from the steriods.

    In Holland you can buy diabetic kits to control your blood sugars in the drugstores.

    But not the insulin of course, there fore you nerd a prescribtion from the GP.

    I hope you will feel better soon, get medicines and can enjoy your stay in Canada!


  • Hi Bas,

    The one thing about getting diabetes due to steroids is that once I they reduced and I no longer need to take them I also can stop taking the diabetic medications.

    I have been checking online for the diabetic kits, I don't need insulin, although they did have to give it to me in the hospital.

    I will get 2 mths prescription next week after I have had my blood tests. I am also on medication for low salt, potassimum levels. The doctors in the hospital changed some meds, added meds and removed some meds. even changed the times i was taking some of the meds.

    When I came home it was hard to get my head around it all

    I am starting to feel better and can't wait to see my family.

    I hope you are feeling better Bas, look after yourself.

    Sue xxxxxx

  • Words fail me - surely they can at least train a different nurse to cover at least temporarily. Re. the diabetes: your GP surgery can get you a diabetes testing kit & then the testing strips & lancets can be by prescription. And a nurse at the surgery can show you how it works. I think some Pharmacies sell them as well - & they are not difficult to use. Steroid induced diabetes can be controlled by tablets for at least some of the time, so you may not need insulin at all. And, as you say, when the steroids go down so does the diabetes. But I would push for a testing kit as even steroid induced diabetes can cause permanent damage when you are not looking - & let's face it RA causes enough damage as it is. Have a great trip, RAinK

    PS, a lot of medical professionals are not aware of steroid induced diabetes or how to manage it - hmm, a bit like RA - so you may have to be pushy - hmm, what's new!

  • Thanks RAinK,

    My very thoughts, they shouldn't depend on one nurse and much training does it take to set up an infusion. They are making every excuse in the book.

    I don't mind buying a test kit, not sure which type is best. One of nurses at the clinic said she had to buy one for her husband and it was very difficult I feel I am been given the run around and I only have a few days before I go away.

    I just want to get on that plane then hopefully I will relax finally.

    Take care, thanks for your advise.


  • Hi Shazbat,

    Since we were in touch, I have now got my own flat and settled in, just a couple of pieces of furniture left to build. Thankfully my daughter in law loves building IKEA furniture so with the help of my son most of it is done.

    I am waiting to hear about the infusions, I have had all the tests and all is fine. I was speaking to a lady where I go to Aqua motions on a Monday, she is on infusions, I don't know which one but she told me that she has to pay 2k a month for them. They cost 50k a year but ohip pays half the amount. I asked the Rheumatologist how much will the infusions cost me and she said let's wait to see if I am approved?

    I don't know how much I will have to pay but I won't be able to afford 24k a year now that I am retired.

    My next appointment with the Rheumatologist is July 6th so I will find out then hopefully.

    How are you, are you going to Bulgaria again and with the changes regarding delivery of meds how is that going. I hope you are feeling okay and not in a lot of pain. I keep in touch with my family in the UK and they keep me up to date on the weather etc. I know of a couple checking out living in the UK and decided to stay in Canada as they found the UK too damp and he has RA and in pain for most of the 3 months they were in the UK.

    Well Shazbat, take care, keep well my friend.

    Sue xx

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