Situation

Hi, saw consultant for first apptmt last wk. He decided to start me on hydroxychloroquine for stiffness and swelling, but he is not sure what condition is. Which leaves me confused. He says can't say if it is RA yet (which is good as far as it goes) but agreed there is some sort of problem and it could be 'evolving'. Bloods negative but doc says that could be red herring or too early in condition to show antibodies etc. Plan seems to be throw drug at it and see if it gets better. Not sure what I think about it.

Now my GP is saying they won't give me the prescription the consultant asked them to as they think I need monitoring on it so they want hospital to dispense it......consultant told me I didn't need monitoring....aaaaaaaaaaa. Why didn't he just give me script instead of this all around the houses effort to get it from GP? Takes so long. I just am so sick of this and want my hands, knees, elbows, shoulders, feet etc to go back to normal - especially so I can get my wedding ring back on - don't like not wearing it. Last time I could get it on was in October :-( Now I have permanent sausage fingers and look like am leaving husband (which I am not)

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  • Im sorry you are going through this hassle, i havnt heard of your gps reaction before, if suggested by a consultant unless there is something else that concerns him i would have thought it should be your choice. I hope once you get it the benefit follows.

    Blessings.

  • Hi BFS, my consultant treated me for symptoms that I had & not the blood results. You don't need monitoring on those meds just an eye test before you start them & then again every 9-12 months. After 6wks of taking hydroxychoroquine I felt so much better & all the symptoms calmed down. I had to have a ring cut off, so in my case I am so pleased he threw this drug at me!!

  • Thank you.........feeling very frustrated because GP surgery just confirmed the GP will not give me this prescription now and wants to speak to her senior doctor who is not in until Mon. Just spoke to consultant's secretary and she is going to get consultant to call GP direct on Mon to sort out - just so frustrating! Seems such a battle to get something that has been written down for me to have! I didn't anticipate this hurdle to actually get medication - just want something to start making me better.

  • You will it'll just take time. I got my first supply from the hospital via my consultant & since then by repeat prescription from my GP. For me,the worse thing for my condition is stress,which at the beginning of this 'journey' (I hate this word but can't think of an alternative) is hard not to do but it's a really complicated condition & will take time to find out what's right for you. Mondays not long & let's hope it works as well for you as it has for me.

  • Hi thanks. Are you on hydroxychloroquine then and did you have side effects?

  • Yes, I've been taking it for over four yrs now. Slight rash & nauseous for a couple of weeks. Its made me sun sensitive so stay in the shade use suntan lotion & wear sunglasses 😎 although that's eased over time. I have stupidly taken myself off it a couple of times & ended up not being able to walk. I've always eaten well exorcised well but these days I'm more careful with not getting stressed out & I make myself rest more, easier said that done I know.

  • Oops exercised 😂

  • If only we could exorcise RD!

  • These diseases can be a bit of a b%^*r to diagnose precisely, and they do evolve and morph. So I've heard to doctors using reactions to drugs as a way to get to a tighter diagnosis. Most often it's trying out a steroid shot, as if that helps it confirms that there's something inflammatory going on. But my sister was also offered hydroxy "as it might help"....and it did!

    Usually no monitoring required apart from eyes. Was it a very junior GP I wonder? I've been on it 6 years plus ans no problems.

  • MyGP surgery was recently inspected & got a telling off for doing repeat prescriptions for consultant prescribed drugs without adequate monitoring of blood tests etc. In our area patients are seenby 3different hospital trusts none of whom have compatible computer systems with the GP & have refused/failed/ignored requests to send results manually. Result is that us patients have to sort it out.

    There is also a cost in providing the drugs& manyGP practices now saying is hospital prescribes then it should provide & take full responsibility for monitoring. All part of the joys of the bureaucratic system -- and very frustrating for sick patients to cope without.

  • Can you not get someone in your Consultant's team to contact your GP?

  • As has been said sometimes it's not clear cut which form of Inflammatory disease/arthritis is starting or that you've had enough suggestive symptoms for your GP to take RF bloods & he/she's up to speed enough to know the earlier you're referred to Rheumatology the better. You seem to be in limbo, not having a 'label' to pin on how things have changed may be a little frustrating, I understand how that can make you question just what's going on.

    I was diagnosed in 2008 though I had clear results & diagnosed seropositive at my first appointment but my only obvious outward signs of RD were in my feet, I was also prescribed HCQ as my Consultant wanted to start with a slowly slowly approach, see how I responded. A while after I read that this quite common where I was living at the time, not only for less severe onset RD, which would fit for me, but for other diseases where there's no clear diagnosis, HCQ is prescribed for other conditions as well you see. It was only once I was starting to get symptoms in other joints it was decided it wasn't enough to hold the disease down & as I was taking 200mg twice a day there was nowhere to go, it couldn't be increased so methotrexate was added.

    Prescribing when on HCQ is usually on a shared-care basis, your Rheumy writes to your GP & requests he prescribes it. If your Practice or GP hasn't had need to sign a shared-care agreement before maybe this is where the confusion has arisen? Usually HCQ isn't monitored as such, not in the same way some other DMARDs need to be so maybe that's also caused confusion, if your GP thinks you'll need to have drug monitoring bloods taken on a regular basis? Hopefully once your Rheumy has spoken with your GP things will change.

    I share your feelings on not wearing your wedding ring. I had a huge flare when I came back to live in the UK & my appointment with a Rheumy to reinstate my meds was delayed. I had to have mine cut off because it was cutting off he blood supply & it felt really weird as my h was still wearing his. I wonder how many people thought I was out with someone else's husband?!

    I hope you respond to it, though as usual with DMARDs it can take 12 weeks or more before you know if it's going to work for you though hopefully you'll start noticing subtle changes as I did. As I said it worked for a year before I started double therapy. We're all different so it's not easy to say what or if you'll have any side effects but I had light sensitivity, I found wearing sunglasses helped but I was prone to headaches, thought to be because I'd become sensitive to light. You have had an eye test haven't you? It's necessary just so your Rheumy knows your how your eyes are before you start HCQ. In very rare cases it can cause retinopathy & other changes, more often on higher doses than we take for RD but it is listed. It's also recommended you have eye tests annually, just to make sure all's well. I had them more regularly & at hospital because of the light sensitivity. It can also cause sun sensitivity though, I didn't though & I was living in a sunny country at the time but it does go to show how we each respond differently. Best to be aware though next time you go on your hols or when our summer comes! Usually just wearing a higher factor sunscreen & being aware if you're becoming sun sensitive is all that's needed but it's knowing how you react to the sun really. 🙂 ☀️

  • Hi thanks for the answer. Did you manage to start wearing your ring again?

  • Yes. Once my meds kicked in again but it did have to be sized up two sizes & could do with being done again as I can't push it to my knuckle any more & it bugs me when I can't turn it, silly I know. I was sorry it happened because both mine & my h's are made from my mum's, my Nan's & his Grannie's rings which were all melted down to make the two & now mine has some random 24ct in it. Suppose it could be worse! 🤔

    Have you got any further with who's prescribing your HCQ?

  • Hi yes I did thanks after some more to and fro. Now started on drug, waiting to see if makes a difference. Some tummy pain but nothing else so far. My hands seem to be going in a flare again so it is quite depressing.

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