why would rheumatologist take me off hydroxychloroquine

[teddy1307]

hi everyone I'm hoping someone can answer my question please. I had an appointment at rheumatologist on Tuesday and it was a different person from who i usually see. the lady that I seen was doing the usual checks. you know, pressing on my fingers toes wrists etc. i was in pain for days leading up to my appointment. after examining me she said that there was no swelling and wanted to take me off of hydroxychloroquine even though I've been on it for months. I thought that with rheumatoid arthritis I would have it for life so if she take me off the meds surely I'm not Gonna be better. I'm just so confused why would she be taking me off It? I hope someone can help as I'm so worried. during flares it is so painful as I'm sure all you lovely people understand I just don't know why she would take me off the meds. thanks for reading xxx

[Hessie5]

Hi - that’s very odd. I know it can impact eyes I was told by my Rheumatologist. Is she changing it to something else? What did she say when you asked? As agreed makes no sense.

[teddy1307 in reply to Hessie5]

hi hessie5 no she never said anything about changing my meds. I think I was just shocked that she said I was coming off them and came out the office wishing I had asked what I would be pit on to then. I just feel like im being told it's in my head now. xxx

[Hessie5 in reply to teddy1307]

Don’t beat yourself up - sounds like you were dumbfounded with it all. I would call, let them know how you feel and get in quick so you are not left without meds. Take it easy, try not to stress over it as it can easily be resolved with a call. Wishing you well. Hessie x

[teddy1307 in reply to Hessie5]

thank you so much hessie. I do get worried and uptight at times and after the appointment I just felt like she was saying it's all in head so I'm starting to to feel as though I'm going crazy xxx

[KittyJ]

I’m not sure we can answer that but it does seem strange not to tell you why. Did you ask why? Are you taking anything else or was it just hydroxy? I’d ring the rheumy nurse and ask them as they’ll be able to see what was written in your notes. I hope you find out.

[notsochunky in reply to KittyJ]

Hi KittyJ

The same thing happened to me. They are also taking me off Sulfasalazine leaving me with just Leflunomide. I have only been diagnosed for 18 months, and am not even stabilised yet!

The reason for taking me off the hydroxychloroquine was because I had been on it a long time (15 months), and Sulfasalazine, was because I am on Leflunomide and it is strong. That was exactly what I was told. There was a post earlier on the same subject if you search for it. I was told I can't have anything in their place because I don't qualify for biologics because my RA is not severe enough, which I agree with. I suspect it is an NHS cost cutting exercise. This might be me getting very cynical in my old age.

[teddy1307 in reply to notsochunky]

my husband said the exact same thing that it's probably cost cutting. she never offered me an alternative I wished I'd asked but I was just shocked. think I'm gona make an app with my gp and see what she says xxx

[JFlay in reply to teddy1307]

Hi teddy1307

I think that's a good idea because your GP will have a letter from the rheumy telling them about your appointment/treatment etc.

I usually get sent a copy, do you?

Also, you said you've been in pain/having flares, do you think they said about taking you off hydroxy because it's not working well enough? although I would think they would have said about an alternative drug for you. Do you know if your bloods are ok CRP levels? your GP should know this too. Just a few thoughts... I hope you get some answers!

[teddy1307 in reply to JFlay]

she never said anything about putting me onto another med 😭 to be honest I still feel pretty new to having RA if you know what I mean. when I was told I had RA they said it was to do with the markers in my blood results or something. I really think I should take someone with me along to my appointments from now on. I have bad anxiety and struggle talking face to face with people that I'm not around very often so maybe I'm just not taking everything in that docs etc are telling me. and no I don't get any copies of letters but I think I'll go to my gp and ask her what the rheumatologist has put in my notes. thank you so much for replying I appreciate it xx

[JFlay in reply to teddy1307]

Yes I do know what you mean! I was diagnosed in January and still finding my way around it all 😟

GP should be able to print off copies of the letters for you if you ask.

I think write things down before appointments and yes take someone with you too. All the best x

[KittyJ in reply to notsochunky]

That’s interesting, I too have been on hydroxy for a long time (28 years) but haven’t as yet been taken off it and they’ve never mentioned cutting down what I take they just add something else 😔 I’ll look for the other post.

I do think it is not acceptable that they are doing this to people whose condition is not stabilised. I hope you both get some answers and your RA is better x

[teddy1307 in reply to KittyJ]

thank you kitty xx

[Hidden in reply to notsochunky]

That's odd , I'm on Leflunomide and MTX together and have been for years.

[notsochunky in reply to Hidden]

I know. I should have asked for clarification, but I just wanted out of there. I have an appointment with the spn in 3 months so I will speak to her then. She is very good.

[Mmrr]

Did you ask her why and what alternative treatment you would now be offered?

If not, you could email her secretary and ask for an answer, but I don't think I'd be happy with removal of treatment without a full discussion with her and my questions answered.

[teddy1307 in reply to Mmrr]

I really should have asked Mmrr but I felt as though she was telling me my pain wasn't that bad. but believe me there are days I can't walk. I struggle to get dressed putting my socks on can be hard my hips feel as though they are on fire. my fingers are so stiff at times and wrists ankles and other parts hurt. but I feel she's telling me it's not that bad. I'm really upset and confused I think I'll speak to my gp. xxx

[Kerensa21]

To do that without any explanation seems poor practice to me. Like the others I’d contact patient advice line in writing/email voicing your concerns and pain levels. Hope you get some answers soon x

[teddy1307 in reply to Kerensa21]

thanks luv I've been left feeling upset and confused. have you ever left a doctors office and just thought oh god I wish u had said this this and this but didn't. that's what I have done and I feel very silly xxx

[Kerensa21 in reply to teddy1307]

I do it all the time! You are not silly; even when I started writing questions down to ask sometimes 🤣. x

[teddy1307 in reply to Kerensa21]

lol. I had questions I wanted to ask and I did but she just dismissed them. told her about severe pain in my arm and hand and she just said ok lol and she asked my 3 times if I was sleeping at night and 3 times I said no not really im in pain when ra is flaring up. but she never gave me any solutions or anything. xxx

[Kerensa21 in reply to teddy1307]

Tbh teddy I find mine a bit dismissive sometimes, can’t wait to get you out of door & forget it’s 6 months till you see them again 🙄x

[teddy1307 in reply to Kerensa21]

yeah that's the way it felt for me too kerensa. tbh I would have liked another xray or something to see if theres anything that shows up especially in my arm. thanks for your replies I feel a bit better having spoken to you lovely people xxx

[notsochunky]

Sorry teddy1307 for replying to KittyJ

[teddy1307 in reply to notsochunky]

that's not a prob luv xx

[KittyJ in reply to notsochunky]

You can reply to anyone you like notsochunky 😁

[Amy_Lee]

Though my condition was very stable, my rheumy still let me continued the dosage of mtx and leflunomide until my liver indicator was 3 times more than the normal, then she started to cut down mtx slowly. I am taking 7.5 mg mtx and 20 mg leflunomide. She told me that she may cut down leflunomide if my condition continue to be so good.

Certainly not acceptable when your condition is still not stable. I suggest you check with your rheumy again or get a second opinion from another rheumy.

[teddy1307 in reply to Amy_Lee]

thank you amy-lee. I think I'm going to speak to my doctor and ask them to explain it a bit better. I do know that she didn't mention putting me on another medication. she just had a feel around my fingers etc which I actually found painful and she said There's no swelling and my x-ray 6 months prior was fine. to be honest I feel as though since that last x-ray the pain has been more noticeable but do you think if I only had one 6 months ago that nothing would still show up on my x-ray now or is it possible there could be signs now xxx

[teddy1307]

just want to say thanks so much for everyone's replies. you have all be a great help and hopefully next time I see rheumatologist I can go a bit more prepared and try and pay more attention to what is said. I just struggle with anxiety and depression and find it hard talking to people face to face. also it seems that the depression has got worse since I'm not sleeping very well and the times when my husband or kids are having to help me get washed and dressed. I just feel like I was so used to taking care of my family plus going to work which i now don't do as my job was making the pain worse. I feel like a failure and just sick of crying. I've never been one to feel sorry for myself just usually get on with things but over the last 6 months or so as I'm needing more help with things I'm feeling worse mentally xxx

[Fra22-57]

I was told similar but refused as its given me great result.why remove something when its giving you benefit

[Iluvgardening]

So sorry you didn't get an explanation for being taken off your meds. I believe it was very poor management. I agree that it would be great for you to take someone with you to your next appointment, my daughter goes with me when she is avaliable , she helps remind me of questions or concerns I have to ask my doc. And, she remembers all my doctor says about meds or treatment. If you don't have someone to go with you, try writing down your questions. I even take pictures on my phone of unusual rashes or flare swellings to show my rheumatologist during my appointment. I hope you get the meds straightened out soon. I pray your pain will subside so you can get back to doing the things you love to do.😊

[Hidden]

Did she refer to the bloodwork at all? Hope you get straightened out quickly.

[teddy1307 in reply to Hidden]

I had a blood test that day and today I received a letter saying my next app is 6 months away. the pains in my arm are so bad it's waking me up plus she said I had bursitis in my hip I told her I was struggling to get dressed and walk etc but basically I've just to deal with it myself and tbh there are times when I wish they would just give me some sort of painkiller but it's so hard to get any sort of drug off them

I've been so depressed today to the point I was punching myself in the head and crying think it's because I've not had a decent sleep in so long it's catching up on me xxx

[JFlay in reply to teddy1307]

Aww 😥 you really need your GP appointment asap, they can at least prescribe you an anti inflammatory for the time being.

[Hidden in reply to teddy1307]

So sorry, Teddy. I hope you get settled soon. Can you purchase some over the counter pain cream you can try to help your arm? I needed it for my knees last night. It did help. Hoping for the best for you.

[teddy1307 in reply to Hidden]

thanks luv. I've been using some voltarol cream but it's not really helping xxx

[Hidden in reply to teddy1307]

I used Aspercreme last night but really prefer Topricin. My local stores don’t carry it anymore and I’ll have to make a trip to where I can get it. I saw a new one advertised on tv called Hempvana sold in the same store I have to go to to get the Topricin. Same price so I’ll see which I get.

[GreenJeans1736]

Wow! This sounds just identical to me and my dr at my last appt. I’ve been sleeping horribly and in so much pain I told her I’ve gotten worse and even bought a cane to help me when I get out of bed. She just, as usual, was sarcastic and dismissive with my concerns. And I also feel so uncomfortable broaching subjects with her or standing up for myself too. So yes I know exactly what you’re talking about.

I even went to another rheumatologist practice and that dr was the same way - even worse - so I ended up going back to my regular sarcastic one. 😢 it’s very sad and frustrating. I do like my GP dr and feel more comfortable talking to him. I hope you can get questions answered by you regular GP. Hang in there and feel free to express your frustration here. I find it comforting to know people understand and have familiar situations on here.

[teddy1307 in reply to GreenJeans1736]

thanks so much luv. it's so rubbish how we are just dismissed and made to feel like our pain isn't that bad. it's not nice to say but the drug addicts around my way get treatments at the drop of a hat when they want it even though a lot of them go into the chemist for methadone but are still taking heroin. just bloody annoys me that my docs won't give me pain relief. I don't know what I'll do aswell if I'm taken off the hydroxychloroquine xxx