Does RA cause sickness,I'm not taking any meds,as yet... - NRAS

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Does RA cause sickness,I'm not taking any meds,as yet but about every two weeks I get really sick,actually being sick,fever aching & tired

Caza profile image
Caza
28 Replies

When I come on here,as I do most days I feel a bit of a fraud,I'm nowhere near as bad as the stories I read on here & yet this illness,even though I'm trying hard to bury my head,is gradually taking over my life.I've read about the pills making people feel sick but can you get sick anyway? I came on this web site a couple of months ago,I thought my gp would throw some light on the confusing diagnose the consultant made,as in I don't have RA even though he'd told me on previous appointments that I had,he gave me pills anyway, which I haven't taken yet,as I need to know what's wrong with me first. My son is getting married at the end of this month & I'm really worried,if I feel like I do today I just wouldn't get there.help-

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Caza profile image
Caza
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28 Replies

Hi, I have nver heard of RA causing sickness, but I suppose intense pain might cause it?

What are the tablets called that you were given?

If you have some kind of inflammatory disease, then it seems the earlier it is treated, the better the prognosis.

You obviously need some help meanwhile. Can you get a second opinion?

Caza profile image
Caza in reply to

Hi Phoebe thank you for replying,he's given me hydroxychloroquine. I'm waiting for the results of a MRI scan of my knee,then I go back to see him again. My gp said she can't discuss it with me as she doesn't know enough about the illness, true full maybe but not helpful

Hi Caza - I take Hydroxychloraquine and Methotrexate and am constantly angsting about it. I have had episodes of extreme pain in my hands, wrists, ankles, knees and shoulders - wrists and fingers being the worst and longest standing places. But mostly now my joints are fine - unless I overdo things.

Your consultant would not have put you on a DMARD (Hydroxy) if he didn't think you have some form of inflammatory arthritis. It is important to take this because he obviously wants you to have some kind of cover at this stage until the results of your scan comes back and he can tell you more. Hydroxy is the mildest of the disease modifying drugs and you don't even have to have your blood checked on it although you will need an eye test to check your peripheral vision. But toxicity that effects the eyes is cumulative and rarely occurs at all and is reversible if you stop taking it. You don't even need to see an optician more often unless you are taking 600mg or more.

If you go to a recent question by Emma about RA and the statistics you will find a YouTube video on one of her posts. I watched this today and it reminded me of what rheumatologists are trying to do in getting this disease as early as possible with aggressive medication. I found it really helpful.

Can't help you about the sickness I'm afraid except to say that I've never been prone to sick bugs until the last few years when I've had more than my share. No one else in my family gets them and I don't know whether the recent episodes of intense nausea and sickness have been caused by MTX or by viral infections but my GP suspects the latter. I think some people just get sick when overwrought and I'm one of them - perhaps you are too?

It's very hard having all this hanging over you I know but I think you just have to trust your consultant - its a very hard thing to diagnose RA for many of us and Hydroxy is the least scary drug you will be offered. Hope this helps a bit.

Tilda x

Caza profile image
Caza in reply to

Very interesting. Point taken x

tiger profile image
tiger in reply to

Hi Tilda

I have tried to find the recent question by Emma about RA and the Youtube video without any luck. Is it Emma from NRAS?

Wendy xx

in reply to tiger

nras.healthunlocked.com/que...

tiger profile image
tiger in reply to

Thanks very much Tilda

Caza profile image
Caza

Thank you tilda,yes it does help. It could be viral but it just seems to be so frequent & as you say no-one else in the family seems to get them. I worked with children for yrs & never caught anything. I will start taking them after the wedding & I'll look up emmas question

I really doubt you will find Hydroxichoraquine a problem Caza - only that it might not do enough for your inflammatory condition by itself. I had no side effects to them apart from a rash on my face when I took the Methotrexate on same day but that's not been a problem again since and was more to do with the MTX.

I'm not sure if sickness if viral for me either but I think it happens when I get hugely overtired and run down - it's like my body just has to purge itself of toxins or something? A visiting friend from this site said last night to me that the stomach is king and if we are upset it often shows in the gut and if the gut is upset it often messes with our head!

Also sometimes I think that this disease poisons us systemically so that we may not be experiencing pain in our joints but we can still get very sick and flu-like with it so maybe this is the way it shows up in you? Everyone is different in the way this thing presents you know. Tilda xx

helixhelix profile image
helixhelix

Hi Caza, we can tell you about our experiences, but you really do need to talk to your doctors about how you feel about the diagnosis and maybe ask them to explain what the results were that made them sure you had an inflammatory arthritis of some sort, even if not RA, and prescribe hydroxy. As Tilda says they don't just hand it out for no reason.

But what you describe sound quite like how I was in early days, before my RA really went nuts. I kept thinking I was getting flu, and then it would go away again. And I'd fall asleep on the bus coming home from work I was so tired. I didn't bother to get it checked out and I regret that now as I waited until I had real problems with my joints swelling up and so on. And I now have permanent damage to my feet that maybe if I'd gone to docs earlier I could have avoided. And everything I've read since I was diagnosed says how important it is to tackle this early and aggressively if you want to try to stop this disease really munching away at you. You'll see from what you've read on this site that this disease is very variable, and it changes over time. So do remember that quite a lot of us on here have had it for years, and probably there's a bigger proportion that have very active RA. Quite a lot of people can have a mild form, but it still needs to be treated if you want to avoid being damaged.

So do please keep pestering your rheumy department till you get the answers you need. Good luck. Polly

Caza profile image
Caza in reply to helixhelix

I think you could well be right.I was out on saturday night,I really didn't want to be there,I couldn't get out of it. Although I left much earlier than the others my feet were badly swollen & were really painful,I can't wear shoes these days only flip flops sandals or wide comfy boots,I haven't really felt well since. As you say flu like symptoms.I don't think I have ever felt as tired in all my life as I do these days.thanks for your replies Polly & tilda x

I don't know how soon that wedding is but it would probably be worth seeing a GP or contacting someone in your rheumy dept asap and perhaps getting a steroid injection to tide you over because if your feet are that sore then it may really spoil your enjoyment of your son't wedding - which would be a terrible shame. Hydroxy takes about 12 weeks to work so the sooner you start it the sooner you might feel the benefit. If you were able to see a GP or your rheumy and get a steroid injection or take oral steroids then that would tide you over probably. It would also help demonstrate whether or not there is something inflammatory going on and might even stop the nausea if that is part of the disease for you? Good luck - Tilda x

Caza profile image
Caza in reply to

Hi,the wedding is the end of this month. I had a steroid injection in march,to be honest it didn't really do very much. Four weeks after the jab I had the worst flare up I've ever had. My gp won't talk to me about what's going on as I'm under the consultant. I should of gone back to see him last month but they didn't send through an appointment & I guess I'm embarrassed to ring as I haven't taken the meds that he told me to take. It's just at the end of the last appt.with him,he said I didn't have RA I have OA & I disagree. On my knee which is red hot & badly swollen the latest x-Ray has shown that it is not OA but I'm waiting for the results of my MRI scan. Sorry to rant but head in such a muddle & no-one to talk to- x

helixhelix profile image
helixhelix

Caza, you really need to chase an appointment with the consultant. Don't think about their feelings, or reactions to you not taking the meds, the important thing is your health not whether you annoy a doctor! Anyway, you can always just say you weren't sure about the drugs as he/she hadn't explained what it was for. And are you sure he said you didn't have RA, but OA? Not that you have a bit of both (a lot of us do), or a slightly different form of RA as there are lots of slightly different names. Quite often I find that I get so full of information seeing the consultant that I can't remember all the details properly. But either way you do need to see someone to get this sorted and on a proper course of treatment. And who is going to tell you about your MRI results? Might that be an opportunity? Pollyx

Caza profile image
Caza in reply to helixhelix

Hi,thanks for replying. Yes your right,I'll ring the hos today & get them to make an a ppt.for me. I've seen the consultant about three times now maybe four,I should right it down,at the first appt.he said he thought I had RA going on what I said,he wanted 2 put me on meds straight away but I said I would sooner wait & have the tests,I had loads of tests,at the next appt.he said the blood results were inconclusive but the ultra scan showed signs of RA,he thought I had RA & OA,he said he would give me a steroid jab to see how I got on,it didn't work. The third time I went back after a really awful weekend where I was crying with pain,he said I didn't have RA even though I'd had no more tests,I had OA.I asked him a few times to repeat what he had just told me,he did,I asked if OA would cause all the symptoms I had & he said yes.I asked him about my knee & he said it was OA. My friend has just had an op for that & the symptoms couldn't be more different. I said would the pills he'd said I should take be for OA & he said yes. He said he would write to my gp & get her to make arrangements for a xray & MRI of my knee,so making a very long story out of a short question it's the gp I get the results from. Interesting enough he's indicated to my gp that it's RA but in not so many words x

That's okay Caza rant away it's very frustrating I know - I'm in same boat re seeing the rheumy - I haven't seen him face to face since he diagnosed me and put me on MTX almost 8 months ago and have no specialist nurses to contact so rely heavily on my GPs.

Luckily my own GP seems to be quite knowledgeable about all things rheumy so I can ask him what things mean and what to do and he is pretty sensible and intelligent in the way he responds to most of my queries or he emails the rheumy about stuff he isn't sure about.

Can you see a different GP perhaps because they should be central to what is going on - not passing you off like that? I think the fact that you didn't respond much to the steroid jab might be the factor that the rheumy used to change their mind because if it was RA you probably would get more relief whereas OA is not normally responsive to steroids. I just don't know enough about OA to know if you can get a swollen, hot knee with it. They should be able to take fluid from the knee and find out whether it is OA or RA but don't forget there many other types of inflammatory arthritis apart from RA.

Arthritis is inflammation of the joints - it's whether the synovial membrane is inflamed too that is relevant I believe. I don't think you should be embarrassed at all - just phone the rheumy dept and ask about your appointment and ask to speak to a rheumatology nurse and find out why you were prescribed Hydroxichloraquine if the consultant thinks it's OA. Be proactive that is the only way you will get clearer headed about what's going on Caza. Don't just wait for things to happen because with the NHS as it is presently nothing ever will unless you push for it. Tilda x

Caza profile image
Caza in reply to

Hi, I've never been told about a rheumatlogy nurse,or half the things that people talk about on here. I don't know it's a muddle x

I don't have one either Caza - but it doesn't stop me pushing for things to improve for me and others! TTx

mspiglet profile image
mspiglet

Hi Cazza, I was diagnosed with RA just before my wedding and the stress of coming to terms with the illness and the wedding left me feeling sick and sometimes like I had flu. Once the wedding was over I found the nausea and flu feeling started to fade. Once the meds were settled it eased even more. I do find that when I overdo things or get particularly stressed it all returns. I also found reflexology/ massage etc really helped - at the very least to get stress levels back to normal. I hope the wedding goes well and that all gets sorted.

Caza profile image
Caza in reply to mspiglet

Thank you,I'm sure your right,having a definate name for what I have would help. It's hard to keep telling people you feel sick & so tired without saying why. Yes I will try reflexology/massage. I know I am worried about the wedding day as my children don't even know yet that ive been having tests,I'm sure I'll be fine & the day will be brilliant,then I can begin to concentrate on me x

thekeys46 profile image
thekeys46

Hi Caza,

ask your GP for a copy of the last letter from the rheumatologist. That will tell you his thoughts. I had to wait nearly a year before going on DMARDs as the rheumatologist didn't want them to mask things before a proper diagnosis.My inflammatory markers didn't disappear though and I had a progression of systemic disorders all thought to have been brought on by RA. I was eventually started on methotrexate, that was last August and my RF showed up as positive last November, was then started on salazopyrin and plaquenil in December. Was OK for a couple of months then started having swollen hands and broken blood vessels in hands and have been unable to work since February. I have been feeling nauseous lately too, sure whether its the medication or due to being anaemic.

Hope you get things sorted. I feel it helps coming to this site and listening to the experiences of others.

xx

Caza profile image
Caza in reply to thekeys46

Thanks for your reply. I did ask for a copy of all letters,the consaltant was non-comital. The gp thought that he was saying I have RA until I told her that he said I didn't,she read through the letters again & said actually he hasn't said what you might or might not have. No help to me. It does help coming on to this site,I think ive learnt more from here than anywhere else. There is a definate pattern now,I feel really really sick & then the tiredness kicks in & the flu like symptoms which lasts for about three days & then I just feel drained, I've decided I will take the meeds at the end of July & see what happens x

nomoreheels profile image
nomoreheels

Not like you AC, it's an ancient post!

AgedCrone profile image
AgedCrone in reply to nomoreheels

Having a breakdown .....with kitchen equipment suppliers complaints department!

The whole place appears to run with voiceless people ....just numbers to,press !

Good enough excuse???

nomoreheels profile image
nomoreheels in reply to AgedCrone

Have replied.

Caza profile image
Caza in reply to AgedCrone

Oops!

AgedCrone profile image
AgedCrone in reply to Caza

Hi Caza.....Goodness only knows why a 7 year old post popped up...I didn’t even know this site existed then!

Hope all the advice you got helped & that you are doing well?

I was obviously having an even worse day than I thought........I won’t mention the company who think being “on hold” for 30 minutes is OK every time you try to tell them a product you purchased from them is rubbish!

However I think the numerous emails I sent will probably give the staff member a good laugh before they delete them.

It’s a very satisfying feeling to tell the CEO of a company he heads up the worst company you have ever dealt with & that unless he ups his staff count the company to will soon be toast!

Caza profile image
Caza in reply to AgedCrone

🤣🤣

I’d forgotten about the post. 7 long years, I’ve learnt a lot since then. I remember feeling very confused at the time, I’d never heard of RD /Lupus & all the other things that he was testing me for. I just wanted to sit down with someone & them talk me through it. My consultant is very good & thorough but lacks time. This site has been a lifesaver.

Hope your problems with the kitchen got sorted.

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