Fed up

[Ellieellie]

Have been taken off Sulphsaldine and Methotroxate due to high readings on my liver suggesting a fatty liver. Have been told may need a liver scan. I have been on those meds for over 10 years. Rang speciality nurse at hospital, felt I was being a nuisance to her and talked down to. Not impressed. Have been requested to see my own Doc who I am seeing on Wednesday. Don't know if she is in a position to prescribe a substitute or simply refer back to the hospital. . Meanwhile I am in pain and stiff and am going on holiday on the 30th do really need something to keep me mobile. Just feel like they are not interested. I have had no problems up to now so have never had need to contact them. The nurse said what's your hospital no. When I explained I didn't have it on me as k hadn't intended to ring she said very condescendingly don't you think you should carry it with you.!! I bit my tongue hard not to say anything back.

[keeta]

If you were made to feel that bad (and we really Don. T need it when we are in pain.) I would speak to your own G.P. tell them how you feel..take care love .kathy.x

[nomoreheels]

Oh you don't need that do you? I had a similar experience the first time I had a nurse appointment but fortunately since not had to have any dealings with the one who made me feel as though I was wasting her time. As you've effectively been 'told' to see your GP then I would do so & explain why. Hopefully she'll be more understanding & be able to suggest what would be helpful until it's decided how & what with, if it is fatty liver, you will be treated. I hope she's more helpful & appreciates how things will be for you the longer you're left without your DMARDs.

Keep us updated won't you?

[Crusee]

Oh boy I would have thrown a wobbly there and then.(and can I throw a wobbly?) That is just not acceptable.

You are ill and you are asking for help of a professional who's job it is to help you,not be obstructive. I am not  surprised you are fed up.You could speak to your GP but the hospital you deal with should also have a  complaints policy.

It's worth pursuing that.

The job I do attracts complaints all the time because of the very nature of the job and people have kicked up a fuss and thrown teddies out of the pram and it gets them some of what they want.The customer is always right.Don't let this go you haven't got time to mess about with your medication it needs to be sorted.

Give 'em hell Elliellie and take care.

Crusee

XX

[Ellieellie in reply to Crusee]

Thank you. I just felt if I threw a wobbly I would just get their back up. I work with the public as well and if people are nice I go out of my way to help if not then am still helpful but just take longer.  Hopefully the Doc will be supportive but have feeling I will just be given the run around. I know I am not a special case and perhaps not urgent to them but it is urgent to me.

[Crusee in reply to Ellieellie]

Exactly.I adopt that attitude with people, be nice to the nice people and it gets them places, but sometimes when time is of the essence I let go with four cylinders.

I must admit that my rheumy nurse team are great so I don't get any problems but when you are in pain and want help you don't need that sort of attitude.

Hope you get sorted before you're holiday and you gave a great time.

Crusee.

XX

[Moomin8 in reply to Crusee]

Morning on this lovely sunny day🌞😎Sorry to hear of your liver concerns..it's pain eh? I'm going on my honeymoon in June and have asked to stop mtx for 2 weeks as it's an all inclusive 😉I asked for some prednisolone to tide me over as steroid injections don't work for me. The rheumatologist,  she say yes! My liver results were raised when I took 2 weeks of diclofenic a few weeks back (I'm still flaring since diagnosis back in December! ) but went back down, fortunately.  Consequently, I'm reluctant to take nsaids which isn't great atm. I was on 10mg methotrexate for 3 months and after rheumy appointment 3 wks ago, I'm to take 15 for 4wks then 20! I've actually decided to take 15 for 2wks, 17.5 2wks then 20. Just seems a little less harsh! I was wondering what your blood results were which highlighted your liver concerns and what the readings were- also, how long had they been like that? A friend of mine had a fatty liver (no ra though) and after an op to remove a massive gall stone and I think her gall  bladder  (don't quote me on that one!) her liver was fine😞

Sorry for the lengthy reply!

Happy hols! 

[Ellieellie]

The tests were done twice over the past two weeks. After the first they rang me and told me stop all meds. After the 2nd I was told to still not take them and make appt with Doc. When I rang hospital myself and spoke RH it was them that told me it indicated a fatty liver caused by the Methotroxate . Hope they can give me something else so I can enjoy my holiday and not be in pain or have major flare ups. Never really had a problem with meds until now. Not sunny here this morning - north east 

[Dawnee28]

Hi Ellieellie

Your situation is nearly identical to mine. I have to inject 15 mg of methotrexate on Tuesday's. Dr called to advise liver results very high and to stop injection. This is my second week off them and I am like you stiff and aching. In pain really.

I rang rheumy nurse in Tuesday and she got back to me yesterday apparently they had sent a letter to my dr to reduce meth to 12.5 per week which my dr never received. She also mentioned fatty liver and possibility of ultra sound scan. This is the second time since starting injections I have had to come off medication. I'm getting very frustrated as I too go on holiday to Greece on the 28th June and want to be able to enjoy holiday and get medication stabilised. 

I suggested to her that methotrexate was possibly not for me and perhaps change would be considered. 

Reply was too start taking lower dose and bloods done every week. I'm not happy with this I want to be pain free for holiday. I've spoken to some people who tell me that on different medication than methotrexate they got their life back which is what I want. 

Let me know how you get on. I have decided to give this a try for 2 more weeks at lower dose and then demand something  else to try. 

Best wishes dawn 

[Ellieellie in reply to Dawnee28]

I am not happy that I was outsourced to the GPs because it takes twice as long to get anything. I am travelling on the 20th this month so short window for me. I am covered by private health ins through my husbands work but have been told in the past that I can't marry them together. I will let you know what happens x

[Preacherman in reply to Dawnee28]

Hi EllieeIlie and Dawnee28, 

Methotrexate is not for everyone.  It's a great drug, but some people just can't take it.  Having said that, keep smiling because there are many medicines that can be taken in it's place.  A lot of folks turn to steroids because it's a great fix, works for almost everyone and seriously brings most of us folks back to normal, and that is a blessing because R/A is such a painful disease.  But please, and I'm preaching to myself too :), be careful, steroids are not good to take long term unless absolutely necessary and of course under the supervision of a Rheumatologist.  Blessings to you both!!

[Dawnee28]

That really doesn't give you much time at all. My right wrist was very sore  this week and I bought an Actipatch helped a little I keep it on below wrist brace all the time. Could do with a gigantic one I could put my whole body in though lol. 

I do hope you get sorted out and are able to enjoy your holiday. 

Last time this happened I also got a 5!day course of prednisone which made things a lot better pain wise. I wish I could stay on that all the time but not allowed.

Good luck and have a great holiday x

[andyswarbs]

Treat yourself to some avocado, one of the best things to help your liver recovery. 

[Ellieellie]

Well went to Docs )early appt) asked how can I help. Me...I had a letter asking me to come and see you. Doc... What about?.... Me.... explains..... Doc....oh, I wasn't aware......Me.... explains further and asks for prescription to help me cope with walking etc. Doc.... How did you know what to ask for..... Me..., have friend who is specialist nurse who has advised.....,Doc...hmmmm did you ring hospital... Me ... yes very unhelpful...Doc..., hmmmm ok I will give prescription for what is suggested and want you to see our liaison nurse with the hospital next week. Me.... ok . What a complete farce.!!

At least I got some meds.