Ignorance

[dozzer15]

I had a hospital appointment today not related to my rheumatoid disease and during a conversation with the nurse I said its having rheumatoid too that complicates things and mentioned that a lot of people muddle it up with osteoarthritis. She said yes a lot of people discount osteoarthritis at least you can get treatment for rheumatoid. I couldn't believe my ears, I said yes but it doesn't just affect the joints and the treatments are not very nice and don't always work. I would have liked to say a lot more but thought what's the point she's a nurse she's not going to listen to me anyway I might as well save my breath x

[nomoreheels]

As one who has both I'm inclined to agree her I'm afraid. I'm in no way comparing the two but luckily my RD is controlled with my meds, not so for my painful OA, in fact at times as painful as uncontrolled RD. If I were to have the two sitting side by side uncontrolled I'd be a jibbering wreck. I have given in & accepted the help of BuTrans patches, very much against my will & not a decision I took lightly but I just needed something to help with the pain & with that comes lack of restful sleep so the nights are long & the days a nightmare. At the mo I'm needing to rest my painful back, knees, hips neck & head every afternoon & I'm losing valuable daylight hours! I'm slight so can't afford to lose any more weight, have a healthy diet & there is little else except for exercise, which I do to the best of my ability, that can help. So please don't think of it as just an old peoples condition as most do. I've just turned 54, oh & menopausal too lol or not so lol & have a lot of life left in me to live & want to get going, or at least be able to walk my dogs again without fear of them pulling me over

Done!!

[d-creasey in reply to nomoreheels]

Agree with everything you say.

[Castlepoint in reply to nomoreheels]

So true & very well explained - being able to forget pain and restriction & go for a lovely long walk would be heaven !

Castlepoint

[allanah]

Sort of agree with no heels I'm afraid. I have OA and RA and they can't do anything for the awful OA pain. At least I can try with the RA.

But I agree with you that RA affects more than just joints and is an auto immune disease and can have serious consequences. So maybe I think both are bad and awful for those who have them x

[dozzer15]

I also have osteoarthritis in both hips so I wasn't discounting it but this nurse was so blase (wrong spelling I think) about it as though she thought we can just take a tablet and that's it. I just said to her that because I had breast cancer in March I had to come off all my rheumy meds which meant I had flares so bad I was fainting. I can't have anti inflammatory drugs because I have Barrett sarcophagus I'm not allowed my enbrel injection because of the cancer and I get numerous water infections which means I have to keep stopping methotrexate. I just meant that treatment is not as simple as just taking a tablet x

[nomoreheels in reply to dozzer15]

Ask your GP to prescribe an antibiotic that you can take alongside your MTX, assuming you're not on a high dose. I inject 15mg & have had them in the past safely. Or maybe your MTX could be reduced until you finish your course & the infection has cleared. Have any investigations been done to see what is causing them? If they're happening regularly I would think it's worth doing, particularly needing to withdraw MTX often. It's no fun going without our meds is it? I had 3 months enforced break last year & was terrible, nearly crawling to the Rheumy for her to reinstate them & my RF shot up to 1280.

Has your Rheumy not discussed other options with you for NSAIDs? They are also available as injections or suppositories for those with Barrett's Oeosophagus? It may be worth asking to help ease your pain & inflammation.

Please don't suffer more than necessary for the sake of asking a few questions. They can only say yes or no & if it's yes then all the better!

[dozzer15 in reply to nomoreheels]

Yes I've had every test going I am under a urologist as I have irritable bladder. I'm on 25mg MTX and I have been on long term low dose cefalexin for 12 months I have discussed suppositories but they say they would have the same affect as oral ones which make me vomit even if I have one tablet and tramadol has the same affect too. The strongest pain relief I can tolerate is codydramol which is not really effective. They started me on Rituximab infusion. I had the first one then should have had the second one last thurs and that's supposed to last approx 6 months but I had a water infect and couldn't have the second one so all being well I'm having it this thurs now. Fingers crossed x

[nomoreheels in reply to dozzer15]

That must be difficult & guess you know where all the loos are when shopping. I would think you've been doing pfe's to try to control the urgency but I would have thought they'd have tried a different antibiotic at higher dose you can take with MTX safely having tried for so long. Have they not discussed maybe trying botox with you? I believe it's licenced for use for OBS.

It must be pretty miserable having both & OA too. Even more so when your RD is in effect not being continually treated & really feel for you. I'd push to see if pain relief could be administered subcut. Maybe even buprenorphine could be an option. As I've said it's started to take the edge off my pain & as it's released directly & hourly mine's certainly eased since using the patches. I would think your pain is really of concern not having your RD meds constantly in your system as it's a stop start situation whilst you're being treated with antibiotics & that can't be the best treatment for you.

I really hope in the meantime that you're able to have the rituximab to tomorrow. Do let us know. x

[dozzer15 in reply to nomoreheels]

Hi Yes I have been having botox in my bladder every 6 months for the last 2 years and it has changed my life even though I have to use catheters to empty my bladder. I've been under first a gyneacologist and then urologist for 20 odd years for waterworks problems. I went the longest time last year over into this year without any infections but then I've had 4 in the last 4 months the worry is that they are running out of antibiotics to give me as I am allergic to so many of them. I am hoping that when I have my second Rituximab infusion that my rd will settle down. I need to get my positive head back on now it's silly to let one insensitive remark upset me so much. X

[nomoreheels in reply to dozzer15]

But little wonder under the circumstances, you've quite a lot to deal with, not to mention the burden of concern about what can be done next. My bug bear is with the people who make assumptions without the first idea of what it's like to live in our bodies each day, whatever our issues, particularly so when it's someone who should have a modicum of knowledge. Sometimes it's best just to walk away but it still rankles at the time. x

[allanah in reply to dozzer15]

Yes I see your point x

[Hidden]

I have both too - neither very badly yet in terms of arthritis - and I don't think there's much point in comparing them because they are different diseases. However I totally agree with Dozzer about the ignorance of some - and sadly this can often include health professionals. If I could tolerate the drugs I've tried then I would probably have nodded politely about the comment "at least you can take a pill" a bit more, but so far I haven't been able to.

Horrible as it is OA will only ever be mechanical and, depressing as that fact is, joints can eventually be replaced and it is at least a known quantity.

Autoimmunity however affects me far more and I suspect, even as my OA progresses, it always will. For me it isn't about pain, it is about uncertainty and not knowing what is causing the more bizarre aspects of autoimmunity that is part of my RD. And if RD is uncontrolled it can go in so many directions that many people have no concept of. And for me the fear of the drug side effects is another source of emotional turmoil. Give me physical/ mechanical pain over this any day. Both together would finish me off I feel.

Ps most people with RD will also get OA too whereas most people with OA do not automatically get RD.

[Hidden]

Hi Dozzer there are so many ignorant people out there I think we all have to learn to let their hurtful comments wash over us. We know how ill we are and our rheumy team knows too. I was a nurse when I was diagnosed with RA and I had no idea what it was. I worked on a brain injury unit. Lol

[Sunflower62]

Hi Dozzer.. She had no place commenting on your RD in that way. I can't currently tolerate any of the RD biological drugs. So there is not treatment for me. Yes there are other diseases but you were there about yourself and nobody else. Please don't let her upset you. X

[dozzer15 in reply to Sunflower62]

Thank you. I've been awake all night wondering if its just me being too sensitive I get upset so very easily these days but she wasn't very nice. Anyway I'm letting it go now I can't afford to keep losing sleep x

[Hidden in reply to dozzer15]

Being very unwell makes us vulnerable and we crave sympathy and understanding. So when a health professional makes a flippant remark such as this you are bound to take it badly as I would too.

The thing that always upsets me is if I haven't managed to convey the alternative reasoning because then I think this person will just continue with their insensitivity and hurt others.

Maybe we all need to have a one line reply ready for these wounding comments. I hope my response would be "well I see where you are coming from but I have both and unlike OA, RA can be a multisystem autoimmune disease and the drugs are very toxic for some of us".

If you get the next time sorted out in your head that will hopefully give you closure and help you sleep with a smile?

[dozzer15 in reply to Hidden]

Yes I will do that thank you. If you have Facebook there's a site on there called creaky joints. There's a guy on there who gives a 1 minute explanation and he's absolutely spot on you may be able to get it without fb not sure but he's really good x

[Hidden in reply to dozzer15]

Thanks Dozzer. I do have Creaky Joints email alerts - I actually met the two main admin guys, Ben and Seth, at the EULAR congress this year - both very friendly and bonnie young men! But I don't have FB and also they have recently changed their website and invited me to join. I wanted to but it's obviously geared towards US system and you have to name your rheumy etc. I didn't want to give out so much confidential info somehow? I will look out for your one liner chap though! Twitchy x

[dozzer15 in reply to Hidden]

Oh that's a shame all I had to do was like the page on fb no questions or anything and I'm picky as to which posts I read x

[Hidden in reply to dozzer15]

I know I'm really old fashioned in some ways, but I leave Facebook to my three sons and just use email and HealthUnlocked for my social networking - these take up quite enough of my time! Tx

[dozzer15 in reply to Hidden]

You don't sound old fashioned to me, and it's good that you have things to occupy your time x

[Hidden in reply to dozzer15]

Thanks Dozzer I'm not really old fashioned you are right. I keep busy because I'm a worrier and if I have too much time to dwell on things I get miserable.

We each have our own way of dealing with RD plus other stuff and mine seems to be keeping busy - a form of displacement probably! X

[Sunflower62]

It's not you! Please don't think that. Having any long term illness makes a person supersensitive I take everything to heart that I'm trying so hard now not to let anybody or anything upset me as I know this just makes my symptoms worse I tried to let everything go over my head is not easy sometimes as people can make flippant comments without even realising how much they are upsetting a person

[dozzer15 in reply to Sunflower62]

Thank you. Yes it's true and as a rule I can just ignore these kind of remarks I think I just let it catch me off guard a bit but I'm going to get my positive head back on today. By the way I love your name x

[Hidden]

Are you sure this nurse was being unsympathetic? Maybe she didn't have time to explain herself fully. I think rampant OA is pretty awful. A bit of 'wear and tear' is one thing, but serious OA is potentially very disabling and very reduced mobility can itself lead to further health problems. Some joints can be replaced, that's true, but many more cannot. With OA it is very much a matter of degree and if it's severe there is so little that can be done that sufferers can be quite desperate.

It's not a matter of which is worse, it really isn't.

[dozzer15 in reply to Hidden]

Yes I understand what you are saying I have osteo in both hips but treatment for rheumatoid is not simple. I think It would have been better if she hadn't said anything at all. X

[pineapple_head]

I unfortunately have both. I had a flare up with my RA a few weeks back and had a kenalog which eased the RA, unfortunately the pain from my spinal stenosis is still there. That's the difference. I had to sleep on my sofa last night with my feet on the armrest because the pain from my back was dreadful. The pain and spasms were shooting down both my legs and kept me awake all night. Fortunately my RA is still good because my kenalog is still working.

I think that's the difference between both disease. With RA, you may be able to get a treatment that works but with OA, you struggle until they have to surgically open you up :-(.

I'm at working age and I'm not old.

Hope that clarifies this and thank you for bringing up this discussion.