What Now?

[28maggie11]

Having trouble with Rheumatogist and hopefully in the process of being referred to another hospital. I was told by nurse (Rheumatogist didn't want to speak to me) that they are running out of biologic to treat me. I can't take methotrexate. Been on benepali which didn't work, humira caused a rash, rituximab infusions which stopped working and then toxicilzumab. This was the last and rheumy was happy it worked on my RA but it caused extreme pain in shoulders. I tried it for 16 weeks then stopped it for 5 shoulder got much less painful. Tried it again for13 weeks shoulder pain started being really bad. Not been on any RA meds for 20 weeks and treating myself with cannibis paste and balms. Fingers crossed I see another consultant soon as I am gradually going downhill. Have phoned hospital been ignored. Gp has contacted on my behalf ignored first time and got a peculiar reply second time. Exhausting. Ps I have been very nice but adamant at stopping a drug that was practically making me home bound

[oldtimer]

Unfortunately it happens that overstretched doctors just can't go the extra mile to accommodate someone who is, in their minds, 'difficult' to manage. It means spending time and effort thinking about and organising something different for that individual and they just can't do it any more. I can understand how it happens, but it shouldn't. I hope that you can find another rheumatologist who can take a fresh and unbiased look at you and find a treatment that suits you as an individual.

[medway-lady]

Did you keep a diary of your symptoms and it does seem complex. I failed on MTX but LEF was great and now AZA and Benapli together do work well. But of course we are all different and there is no one size fits all medication which is so unfortunate. Some of the RA meds do take a long long time to work. LEF sure did and caused a lot more pain in my shoulders and wrists and hands then about 14 weeks in the pain went and I was in remission and stayed that way for years. I think you do really need to talk to a doctor and asap as no medication for that length of time is really no good for you. I'm not sure about the Cannabis and can't comment. I hope you find some help very soon.

[28maggie11 in reply to medway-lady]

Yes kept a diary

[charisma]

They could try you on JAK Inhibitors. I should starting one in the next few weeks/months. This one rinvoq.com/

CBD paste and oil as legal substances do not contain much of what experts deem essential for them to be effective viz whole plant products. I had tried them but took hours to get any relief.

I hope you can get better help soon.

[28maggie11 in reply to charisma]

Ty

[Madmusiclover]

How rude! There are still more for you to try. Good luck.

[Mmrr]

The rheumatologist does have an obligation to treat you, they are employed by the health board to do so and are failing in their duty not to do so. You could write to the rheumatologist secretary being very polite but stating that you are unhappy about your treatment and understand that there are many more options available to you such as JAK inhibitors.

I hope your new referral comes through quickly.

[Sheila_G]

Sorry you are finding life so difficult. I hope you get a referral soon and the treatment you need.

[Durrell]

Golly Maggie, I think you wise to seek out a different Rheumy, I have tried several drugs & like you had to stop for whatever reason & my Rheumy always says I’m not to worry as there are plenty of drugs you can still try, I’m always apologizing for being a problem patient ie not text book, but he says few of us are & he has others like us, so we are not alone & just being on this forum proves that there are many, waiting to change, receive a new treatment plan that works for them, it’s extremely frustrating, but that’s RA I think it’s a real shame the nurse said that to you, I’m sure she didn’t mean it detrimentally but more scratching the head, what’s next?? Although I am following a more natural route now, though not if meds yet!! 🤞it all takes time.. good luck in finding a more caring & helpful Rheumy