Consultant feedback

[Stowe]

Has anybody had the reply I received from my consultant. I went to see him and said the mecication methotrexate and Hydroxychloroquine do not seem to be covering my arthritis pain when I am stressed. I wanted to include a third medication to the mix to see if that would cover the pain, mainly in my foot and rash on my eyelids. He said I need to control my stress levels (easier said than done) and that he doesn't think it's a good idea to add another medication. Not sure what to do now, other than try not to get stressed, but when you have a boss who thinks covid has gone and it will only be a cold and is pushing you to go back to a office that every week has a covid case, it's difficult not to feel stressed. Sigh.

[MadBunny]

I can understand his reluctance to prescribe another medication if it's physically not necessary, but his comments about stress weren't particularly helpful. Would it be possible to speak to your GP to see if you can get any help with stress management.Or a rheumatology nurse🤔

[Stowe in reply to MadBunny]

I think I might wait till I have the next nurse appointment and see how I feel then as they were happy for me to go onto another medication, plus I'm moving in the next couple of months out of the area, so it might make sense to move register with a new consultant and take it from there.

[MadBunny in reply to Stowe]

Good idea.

[sylvi]

What can your boss do to accomodate you regarding your work. Explain to him how RA affects you and take some paperwork to explain about RA too darling HUgs,xxx

[Stowe in reply to sylvi]

I have a meeting in a month's time to discuss the back to work situation, I'll have a think about it all. Xx

[KittyJ]

I do agree with him. Sorry but taking another RA med when you don’t need it is a bit of a strange thing to want to do if it’s your stress that’s causing it. Better for you long term to tackle the stress because nothings going to work while that’s going on. There’s lots of help with this online and lots of apps you could try.

[Stowe in reply to KittyJ]

I can see where he was coming from, I think as I have pain in my feet on and off, but is made worse with stress was why I was wanting to ask about the increase 8n medication, I'll give it a bit longer and see how I am.

[AgedCrone]

Surely the fewer drugs you need the better? The more drug is piled upon drug…the harder it is to know what is working well & what isn’t. Why not consider your rheumatologist’s advice ……maybe having some stress counselling about getting back to work would ease your stress? Difficult as it is to accept……life is slowly going to have to move on….. including for those of us who were CEV.

None of us will ever have experienced a pandemic like we have just been through- and hopefully we never will again - it’s a learning curve for everybody and we will all be approaching it differently.

But as you are finding it so difficult to face going back to work why not see if you can get some professional help to ease your way?

We just can’t all stay home for ever ……so we have to find a way back & if your doctor says taking more drugs isn’t necessary……some other ways will have to be explored.

I’m sure a lot if people are seeking help at this point so it might not be easy…but we have all got to try to move on.

[Stowe in reply to AgedCrone]

Yes I would rather not be on more drugs but equally I would rather not have pain in my feet that hurt me to walk either, hence trying to see a way forward with extra medication to help the pain, I will carry on as I am until the next nurse appointment. I have been working for the last 2 years and doing more work than at the office, I don't need counselling about going back to work, as I have always been working, I would like compassion or at the least understanding from my manager of why I am hesitant of currently going back to the office when the covid numbers around here are rapidly increasing, yes I get that we have to get back to some sort of normal but atm for me that doesn't include sitting next to somebody in the office who may have covid and pass it onto me.

[Twitty999 in reply to Stowe]

My worst pain with RA was in the soles of my feet! Like walking on glass!. I had an Ultrasound scan on them which showed massive inflammation. I was on the highest dose of Methotrexate & Hydroxychloroquine. My Consultant then agreed to stop the Hydroxychloroquine & put me on the 6 monthly Biologic Rituximab infusions along with the Methotrexate & after 3 months I was pain free!🙏🏻 . That was 2 years ago & I continue to be painfree. I hope this is helpful to you x

[Stowe in reply to Twitty999]

Hello Twiþtty999, thank you for your reply, that is really good news for you, I am really pleased for you. My pain comes and goes, some days hardly any other days loads especially in my feet, I think I will mention to the nurse if my feet are still hurting in 6 months. Xx

[virtualreality]

That does sound stressful. Is there any chance of accessing Occupational Health input around working from home as a workplace adaptation, if that's something you need? Just thinking that having some support might ease some of the immediate stress of the situation, and hopefully some of your continuing symptoms along with it. As you say, reducing stress levels is easy to say but not always quite so easy to do! Best of luck with finding a solution that works for you.

[Stowe in reply to virtualreality]

Hello virtualreality, thank you that's a good point, I think I will see how the next mtg goes with my manager next month and then if I need to get occupational therapy involvedi will. It will sort itself out.

[ATSF]

I’am shortly going back on MTX by self injection having tried pills on 4 previous occasions with pills with no benefits and loads of side effects. I was given the hydrox> in error 6 weeks a go for a week before being discovered by myself and I felt very good. It was then changed to HYDRALAZINE HYDROCHLORIDE which should have been given at the hospital pharmacy in the first place and felt the same. I still have severe pain in almost ever joint. I now are hoping that the MTX will work with it. I have two close family members on MTX that is completely successful except for the odd low level flare up.

[Stowe in reply to ATSF]

Oh gosh that sounds like your in a bad way, thatmust be awful being in such pain, I find if bad enough with 1 or 2 joints let alone all, I really hope the Methotrexate helps you and you start to feel alot better. I have been good on Methotrexate other than the pain in my feet and hand now and then.

[ATSF in reply to Stowe]

Thanks for your thoughtful reply. I now don’t give which joints are effected but which aren’t it’s quicker. These are my right elbow (replaced), left knee (replaced), left ankle, foot and toes. If you have a partner like mine to look after you it reduces the pain considerably, you also after grin and bear it. I get a lot of relief from microwave heated pads used up to about 10 times in each 24 hours.

[Stowe in reply to ATSF]

Wow you really have been through alot. Aww that's really good that your partner is looking after you, but still must be hard. I used to use the microwave heated pads as well, I tend to now use a hit water bottle alot to ease the pain in my back.