Feeling awful and fed up! : Hi all, I haven’t posted... - NRAS

NRAS
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Feeling awful and fed up!

Hi all,

I haven’t posted or replied to posts on here for a few weeks as I haven’t had the head space for anything. After being taken off Leflunomide first due to awful side effects then stopped Abatercept infusion I had 4 appointments with the consultant and nurses who in turn lost 2 lots of blood results, promised me a prescription for Azathioprine and went on holiday for 2 weeks without leaving it at pharmacy, then another nurse told me the wrong dose to take. I was also waiting for my first Toci infusion and was told funding hadn’t been filled in 6 weeks after seeing consultant. All this time I am slowly getting in more and more pain. Finally had my first Toci infusion in Wednesday, only to feel like I had been beaten up since. My neck and shoulders are agony and I can’t move my head at all and I ache and am swollen everywhere. So here I am lying in bed.. Tramadol did nothing so I’m taking Oramorph with very little effect. Should I go to docs? I’m in a very busy period at work and have 3 children to look after. 😭 sorry s pointless post but needed to get it off my chest. Thank you if you managed to read it all. Sarah xxx

35 Replies
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I know nothing about this infusion but just want to say I am sorry to hear you feel so wretched. Do you trust your GP more than Rheum? I think you should phone someone for advice. Hope you feel better very soon.

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Thank you. I moved house in April so have a new GP practice. I saw a female GP who told me to take paracetamol! I might try the other one this afternoon. Thanks for taking the time to reply. xx

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Sounds really horrid the vicious circle with meds and pain and nothing seems to help:( It also seems that you have a life filled with pressures. I wish I could say something to make it better. During all these years I am sure you have also had other tests and examinations like checking your thyroid and estrogene/progesterone balance? Hope you get help soon. Simba

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Thanks Simba. I don’t recall having the other examinations. I have been under the same consultant for 16 years and he has failed me many times that everything has been a fight to get what I need. He is retiring next year so I am hoping his replacement is better. Thanks for your reply xxx

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Very often in RA you have underlying problems with thyroid and hormone balance. Fixing these does make a difference in pain and symptoms. Perhaps you can get your GP to send you to an endocrinologist?

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I didn’t realise that was the case. I will ask my GP about this xx

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I have read it Sarah and my opinion is go back to see the doctors treating you darling.xxx

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Thank you Sylvi. I will try and get through to them after lunch. xx

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Agree with Sylvi - you need to tell them how bad you feel after the infusion. They may be able to suggest something helpful, I hope so.

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Agree with the rest give them a call and see if there's anything they can do, hope you get some comfort xxx

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Thank you all so much. I have called the doctors and they have no appointments today surprise, surprise! I have to call back tomorrow so another night of no sleep 😴

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Oh bless you. In your position I'd ring both GP and Rheumy and nag until some way forward can be found. You already have too much on your plate, which won't be helping. I truly don't know how on earth you manage your RD with your children and work and it's time you got some help from the medics. Wishing you better

J

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Thanks J. I have left a message with the Rhumy nurses but they usually have to be called a few times before I get a response. I have to manage as so many people depend on me so when I flare it puts me in bed. xxx

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Can you get a referral to a different Rheumy team......your experiences are absolutely not acceptable.

.I'd get in touch with whoever gave you the infusion. Hopefully they will have seen your reaction before & will know what to do.

If you are very lucky your GP may help, but95% of GP's have no idea what Reactions one can have to any RA drugs...mine asked if I have Retuximab every month!

Try not to worry about work...with three children to look after you should concentrate on getting yourself well.

I hope things look up soon.

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Thanks. This Rhumatology team covers a massive area and my consultant is over all of the consultants. They have recently merged with another trust which has made it worse. The GP’s have no clue at all in my experience xxx

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I am so sorry that you are feeling like this, your despair is tangible. There is sadly not much I can do, except offer you support. You have so many pressures, far too much for anyone to cope with alone.

There is no excuse for you being left in this situation without help. Is there anyone who can take on the fight on your behalf, and knock a few heads together? I do hope so.

Meanwhile, do come back here as often as you need . There is so much support on this forum, you are not alone any more, and we all understand what you are going through.

Take care xx

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Thank you for your support it is much appreciated and nice to know I’m not alone. xxx

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Hi, Don’t despair!!! we’re all behind ya, I was feeling just like you about six weeks ago, my advice would be to take your Tramadol alongside your Oramorph to help with your pains as I did, call your surgery and get a home visit from your GP, tell him you need something doing ASAP. I’m sorry the Toci infusions didn’t work for you, I got good results from that for four years but we’re all different! Take care and accept all help offered to you so you can rest, keep us all posted, and rant as much as you want!!! We all understand 😘💐

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Hi I didn’t think you could take them together? It was my first infusion of Toci so I will try and remain positive in the hope that it will work eventually. It’s my 4th biologic so need it to! Thanks for you kind words and support 💞

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I was prescribed both of them alongside paracetamol and took them both to control my pain, and still take them as and when I need them, even though Im taking prendisolone and having Cimzea injections. Controlling your pain is vital to getting a good nights sleep so you can function with some normality! 🤪😜🤗💕

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Oh wow thank you I thought it was one or the other! Cimzia worked brilliantly for me for 5 years! Sleep what’s that! I need it more than anything and will take your advice this evening. xxx

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Good luck!!! And sleep tight!!! 2 tramadol does it for me! 😴😴😴xx

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I was feeling the same 2 weeks ago, although still not fully recoveted, I insisted to speak and paid a visit to my rheumy’s assistant who tried to reassure me to continue with the medication and to exercise my fingers to help with the now joint pain in hands which I never had. Do contact them to get the answers you deserve. Wishing you well.

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Keep contacting rheumatology until you get some help. I hope someone listens soon.

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Oh heavens you poor soul. I honestly don't know how you are managing! Yes, go to docs and get some time off work if you can. That is an awful lot for you to cope with. I'm so sorry.

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Thank you all for your well wishes you are all so supportive it’s refreshing. At docs shortly so hope I get some help xxx

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Hi sorry to hear of your pain, and your touch journey, its so hard struggling family life as well. Can you phone a helpline or phone your gp for advice? take care xx

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Thank you again for all your replies. The doctor has prescribed Zomorph which is slow release - I’m hoping it’s more effective. I’m also waiting again for the nurses to call back, I’ve left another message with the helpline. I just need to turn a corner. Sarah xxx

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Great news!!! It’s a start! Wishing you well 🤗🤗💐

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Thank you. The helpline was useless told me to take pain relief. Of course! I hadn’t thought of that! xx

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😂😂😂🤪😜🤪xx

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Hi lovely

Oh you poor thing, 3 kids and a job, your a hero. I really really hope by now you have had some kind of help. And a new practice to cope with, more hard work for you. Keep your chin up and let us know how you get on . Big hugs xx

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Thank you. ♥️ I’m still off sick, however my boss has very kindly dropped my lap top off so I can keep working. 🙄 I’m still taking Zomorph which is helping but obviously not a long term solution. Hope you’re ok. Sarah xxx

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Hi yes you stay off work until you are better

I can't talk i should take my own medicine .I'm still going In when shouidbt be but still a new job don't want to give them any bullets to fire me with. But if this gets any worse I'll have to . I got phone call before to make an appointment for biological clinic ! Hurray. Well I think hurray. Ahhh you take care hun n keep us posted

Xx

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That’s good news. Fingers crossed you can get on a path and feel better. You take care too. xxx

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