Hi...I am a newby to this site and would welcome any positive information as i,ve recently been diagnosed...and it,s all very confusing.....

[Mandy-Rose]

Hello...im newly diagnosed with ra{sero-negative]...ive been taking hydroxychloroquine for two wks now and am due to start mtx injections...the thing is,im more terrified of the side effects and the infections relating to a low immune system...im not handling this at all yet and cant get my head round it all...i feel im in for a life full of illness and its so upsetting...i would appreciate any positive information...thankyou.

[Clare-NRAS Partner NRAS]

Hello Mandy-Rose, I would suggest you give the NRAS helpline team a call on 0800 298 7650 as there is a great deal of information and support we can offer you that will help at this early stage. Also take sometime to visit the NRAS website nras.org.uk as there is a wealth of really helpful information. We also have an excellent booklet for anyone newly diagnosed and we can pop one in the post to you free of charge. Just call  0845 458 3969 or download it from our website nras.org.uk/publications/ne... 

Regards

Clare

[Mandy-Rose in reply to Clare-NRAS]

Thankyou...yes ive had a few leaflets posted out.

 

[nomoreheels]

Hiya Mandy-Rose & welcome. I'm sorry you've needed to seek us out but hopefully now you have you'll start to fell less concerned. It's something we've each been through, some concerned more than others which I think often depends on how much information has been shared with you, indications of how the disease works, how the meds work on the disease & such. But you're at the very start of treatment so everything's new, you're coming to terms with your diagnosis & you could say grieving for the you you used to be before being hit with, let's face it, a bit of a bombshell. Do bear in mind though some of us on here aren't all bobbing along so well, have varying severity & lengthy diagnosis so you may read some concerning things but that's how it can be sometimes on a support forum. We each react differently to the meds we need & some aren't as fortunate as others.

In 2008 I was diagnosed seropositive with OA added into the mix just to challenge me. I was lucky & diagnosed not long after I had trouble with my feet. I started my treatment on hydroxychloroquine (HCQ) (plus a couple of NSAIDs & a short course of steroids) & it worked well for nearly a year. Then methotrexate was added (MTX) but for reasons unknown that didn't control me so the HCQ was withdrawn & that let the MTX work better. I've had changes in treatment, particularly NSAIDs but remained on MTX (injections for 6 years) at varying doses & remained reasonably well controlled, enough to say I feel good. More recently I've had disease activity in my feet & just last week started sulfasalazine (another DMARD), still too early to see if it will be effective as I'm titrating the dose but I have hope for it.

I find it's best to read your patient information leaflet so you're aware of what you're taking & what for, possible side effects too but what I don't do is wait for the side effects to happen, there's no saying we'll have any but it's a requirement for the drug companies to list the ones found through extensive research & trailling. I think this way I cope better & go in expecting what my Specialist considers best for me at that time. That said, if I start feeling 'different' I check the PIL again & if it's something I need to report I will, I'll either ring my Rheumy nurse or mention it at my next Rheumy appointment. Thankfully I've only needed to do this twice & I just needed a dose reduction & an increase in folic acid. We are well monitored as well so this helps, if my levels are too high or too low my nurse rings me & advises what's necessary, usually not injecting MTX that week & having another blood test to see if my levels have returned to 'my' normal. I don't think the two DMARDs you're taking now lower your immune system enough to be any more than careful than you normally would be. Obviously avoidance is the best way so don't sit in a room with a people full of cold & ensuring your hands are clean, things like that & usually how things are passed on. I keep a small bottle of hand sanitiser in my bag & use it when needed, most often when I've had to use a public loo, even though I hand wash you don't know who hasn't & used the exterior door handle! No need to be uber careful though, that's more if you have need to go onto ant-TNF's or biologics.

I hope some of this helps, keep posting & replying because it really helps to learn about the disease, different treatments & how other people cope. We have off topic conversations too that can take us away from our worries & concerns, laughter is still the best medicine!

[Mandy-Rose in reply to nomoreheels]

Thankyou..i think at the moment i feel like im the only one in the world with this and just want to scream.

[nomoreheels in reply to Mandy-Rose]

Believe me you're not but I do understand that it can feel that way. If it helps scream on here, you're welcome to do so, I think most of us have done that at least once. Are you able to talk to your closest members of your family or friends about how you feel or do you not feel you understand enough yet yourself to be comfortable doing so? It may help if you read through some recommended sites together nras.org.uk & arthritisreasearchuk.org are both full of helpful info for the newly diagnosed & of course ask here, there's always someone around willing to support anyone at any time.

You will start to get your head round it all, again it's all so new & confusing but once you notice the difference your meds can make it & understand how things can be different to now it will become easier. Give it a couple of months & you'll learn more & understand that it can feel better than it does just now, also your coping mechanism will kick in. x

[Mandy-Rose in reply to nomoreheels]

To be honest i,ve spent each nite researching everything i can about it....im not in any pain anywhere yet...and cant think of anything worse than putting toxic drugs into my system for the rest of my life...i,d rather do it as naturally as possible..one of my concerns is ..how bad am i going to get...now thats terrifing!

[nomoreheels in reply to Mandy-Rose]

Many of us reeled at that thought in the early days Mandy-Rose but have researched & listened to the advice of those helping us & who know just how we're each affected. If I'm honest I was grateful for anything that would help prevent me looking as my nan did, who only had brufen & ointment to rub on her disfigured joints. 

Whilst eating healthily goes a way to self help foodplans alone aren't clinically researched enough for me to use that & alternatives to ensure damage is limited. You'll find your feet I'm sure & if you keep to recommended & reputable websites you'll understand how the meds nowadays aren't toxic to those who are prescribed them to help control a chronic disease. I followed a Mediterranean diet even before I lived out there & was diagnosed so 20 years or thereabouts & I'm sure it's helped my disease remain on the whole controlled & not much advance from diagnosis. I had a familial disease so the hands were dealt, I was more likely to have some form of autoimmune disease & fortunate in a way I only have the one. Exercise helps too, your Rheumy should be able to help with both. I also have OA & that's more difficult to keep that pain under wraps & I take strong meds but working with my GP has in the main helped. For me again exercise has helped strengthen those joints affected, oh & Pernaton gel which I always have close at hand for when my joints have a go. Do remember that having no pain doesn't necessarily mean that the disease isn't still having a go, it can be tricky like that & why we need to be monitored & see our Rheumy for reviews, DAS scores etc, your GP referred you for good reason even if you don't have more typical symptoms.

Once you're over the shock you'll settle, we all wish we didn't have it but if we can get it controlled quickly the chances are the less damage will be done. Being seronegative could be an advantage for you, though I wouldn't concern yourself too much about that. If I can suggest you express your concerns to your Rheumy, he's the one best placed to satisfy your concerns as he's the one who has all your test results & of course has seen you. Best thing I can think to finish with is don't worry, stress is best avoided if it can be prevented & you've now got us to bounce your concerns off too if you need to get them out there.

[Mandy-Rose in reply to nomoreheels]

Thankyou for replying...i hope i can calm down and settle soon..i think im still a bit in denial.

[nomoreheels in reply to Mandy-Rose]

Maybe this could help, another perspective healthmonitor.com/rheumatoi...

[smithfield in reply to Mandy-Rose]

Welcome Mandy Rose.Believe me you are not ,it can feel like a very lonely disease.Hopefully you will find friendship and support on this site. Yes it can be grim reading sometimes but it can .also be funny because we we all capable of laughing at ourselves and that helps.

Hope your meds work.

[smithfield in reply to nomoreheels]

Hi NMH sorry to jump on the band wagon but how are your feet? I ask because mine are so swollen at the moment I cannot get any of my shoe's on and they are all EEE extra wide plus a size larger to leave room for swelling.

Had steroid injection Monday and that usually reduces them but not so this time.So stuck at the minute tried elevation cold water soaks, ice No effect.

Just an update different story this time my file wasn't lost it was stuck in in chest clinic. That is the 3rd different version I have had. What it boils down to is funding has not been applied for yet.

Perhaps she did not give me a real steroid injection, for punishment , as I said I was going to complain. How about that for paranoia.

Sorry if this sounds moany.

X

[nomoreheels in reply to smithfield]

They're still a bit swollen, ankles too but yours sound worse. Don't really know if SSZ is working yet but do know it's making me feel a bit bleeeurgh. I'd see your GP again, not sure if your steroid just hasn't worked but as they're still so swollen they should really be checked out.

Your illusive file! This can be a problem when you're under more than the one department though it doesn't make it right. I really hope you hear soon when you'll start biologics, it's a cruel system. You're not moaning, please don't berate yourself for things you've no control over. x

[smithfield in reply to nomoreheels]

Thanks NMH Going to make GP appointment for early next week, an afternoon one so my feet are at their worst.

Tried to talk to the rhuemy nurse on Monday, but if it does not fit into her tick box she won't comment. RD is more than swollen painful joints. it is also about how we feel about ourselves, really swollen feet and ankles lowers myself image, which the disease knocks anyway but that does not seem to be recognised.

Off soapbox

Take Care xx

[smithfield]

Hi Kai why do you add if someone has... you have a right to express your opinions the same as anyone else.

X

.

[smithfield]

Hi Mandy Rose. Welcome glad you have joined the forum.

You have had some sound advice I started on MTX and put it off for a couple of weeks before taking it I was so scared ( I had not joined this forum then but wish I had). Mtx did nothing for my symptoms so came off it but had no horrific side effects. Having said that lots of people on here take it and do really well on it. Try it be positive if you can and hopefully you will be one of the people it works well for.

It is scary when you are first diagnosed I felt as if I was living in a fog I knew very little about treatments did not know what a DMARD was or about biologic treatment ( I think we should have a list of explanations somewhere, this is where someone will pop up and tell me there is one) . But on this forum I have gained some knowledge and from the NRSA leaflets.And it has helped me be better informed when I meet with the rheumy team.

All the best.

And NMH is absolutely right door handles carry more germs than toilet seats the handwash trick I learnt from her.

On that cheerful note I will go.x

[smithfield]

Thank you for the explanation .Just seems sad you have to add a clause to your posts.

You take care.x

[smithfield]

P.s. Love the cat.x

[Jacki08]

Hi Mandy Rose--- the anxiety  you are feeling is perfectly  normal- and you have come to the right place  for advice. I am also sero negative - which made it difficult  for me to be diagnosed and by the time my RD was discovered, my body was suffering   . It does take a while  for the drugs to work - but they have given me my life back.  I struggled with side effects of methotrexate - but have recently  started a different drug. Don't  worry about popping on here and asking questions -- we've  all  been where you are at the moment-- and all help  one another. Good luck☺xx

[farm123]

It is just a case of learning to read your body signs and being aware that if you do get an infection you may need to take action sooner than you would of and not to take that week's dose.  I have been on many different meds for a long time and have not had any more problems than normal and for the last 2 years my white blood count and neutrophils have been below normal ranges.  Once you find the right combination of meds to control you it is possible to live a relatively normal life.  Many of us on here are on the extreme end of this disease and those who are able to get on normally have no need of forums of this type.  NRAS or arthritis research websites have a lot of useful information regarding lifestyle, work and drugs.  Farm

[smithfield]

Yes you need a bit of humour newly diagnosed or oldtimerx

[nomoreheels]

Rather than taking the admin team time away from priorities we are encouraged to use the Report option where we feel it's necessary, this is why it's provided. They don't take deleting or amending posts lightly so if there's been need I'm sure they had their reasons. Rather than becoming embroiled in unnecessary to'ing & fro'ing whether somethings considered a problem or not members will more likely use the Report button as it's there. I'm sure if your replies are within the guidelines & appropriate there's no need to keep typing the addition. It's a shame actually you feel you need to, you have enlightened many.

[Beaches2]

Hi Mandy rose

You have asked for some positive information so here goes........it's true that the drugs can have various side effects, I found methotrexate hard going at first, but, it got better, now I have no side effects from it that I'm aware of. I hope not to regret writing this, but in 2 years of taking these drugs, I've had no more colds etc than I had before.....I am more careful re hand washing, using hand gel etc, but considering I work with children, that's not bad going! 

So yes, it's a really difficult diagnosis to get your head round, it's not easy getting to grips with all the drugs/prescriptions/ blood tests and just the thought of having this condition, but, little by little you will get there, and once you get on some meds that suit you, life will be just fine.....it is for me, and I was in a dreadful state when I was first diagnosed. 

Remember when reading posts on here, that this is where we come if we have a problem or are in need of support through a difficult patch, so not a true reflection of the day to day lives of most of us.

Hope that was reasonably positive, take care and good luck with your meds.

[Mandy-Rose in reply to Beaches2]

Thankyou..it wasi suppose it will take time...but i feel times not on my side ...if i put off taking the mtx...will the disease progress quickly?

[Beaches2 in reply to Mandy-Rose]

It's hard to say as everyone's condition is different. My rheumy treated aggressively at the start so onto methotrexate then quickly added another drug and now on 3. I had already read that early aggressive treatment seemed to give the best results so was ok with this approach. I just was desperate to feel better again.

I had an aggressive, explosive onset, so was floored with this over a matter of days. I suppose if mine had been the slow,grumbling type I may have felt more reluctant about taking the drugs.

Over my 2 years on this site I've seen lots of posts about people scared of starting the drugs, and lots of posts from people who start on methotrexate and a few months later are reporting that they feel fine again and are off enjoying life. It wasn't like that for me though, I battled for almost a year to find something that suited me. I'm mostly fine now though, working, exercising and generally getting on with life. 

I hope you manage to make the right decision for you.There are loads of posts on here from people starting methotrexate and lots of good advice from members. 

[gillianf]

Hi there.  Me too.  Newly diagnosed I mean.  Tried Sulphasaluzinefor 4 months but it didn't work. Just started in MTX injections myself  Did my very first one solo last Wednesday ALL ON MY OWN.  YAY. Actually they are like epipens so no big deal actually (says she bravely)  and they DON'T HURT.  Cannot comment on the side effects yet as too soon and too low a dose.  Going from 10 ml to 12.5ml and having first blood test to check on liver next week.  So far only a little nausea and tiredness but in I am  willing to give it a go as the RA is so painful.  Good luck with yours.  I agree it is very overwhelming but the folks on this site have been really positive.  RA Warrior site also very useful.  I also take folic acid to help with side effects.

[Mandy-Rose]

Thankyou for that..

[Rwill1998]

Hi Mandy-Rose, I got diagnosed with RA around 3 weeks ago, I also was terrified and upset and can imagine somewhat what you're feeling; walked out the first meeting with the Rheumatologist in tears and in the elevator....and whilst driving home haha.

I actually wanted to put off taking the medication for at least 2 or 3 months (because I was turning 18 and drinking seemed to be a bit of a problem whilst taking 2 and a half methotrexate pills - 10mg - each Monday) but I think I the best thing to do is start the medication as soon as possible to prevent further damage, get it under 'control'. I can't say much about side effects, I've only taken the methotrexate once so far, it did make me feel really sick in the stomach but that may have been because I hadn't eaten a lot that day. If you are getting injections I think you won't get that feeling. Your rheumatologist will monitor your health and if something is damaging to your liver they will reduce to dosage or switch around to different drugs; don't worry I'm sure you'll be okay

[Mandy-Rose in reply to Rwill1998]

Thanx...your so young and sound a lot more in control than i am at the moment.

[Ali_H]

Hi Mandy-Rose,

Sorry to hear you now qualify to join our merry band but glad to meet you! 😎

One thing about RA is does have it's slower moments when we get some resemblance of normal back at these early stages. I've found cleaning up my diet helps, listening to the fatigue voice and resting or taking things easier if I can... I teach full time so my term time week evenings are very low key and also my weekends on tired times... This weekend is a very easy one cos we had ofsted in last Wednesday & Thursday and it brings extra demands/stresses to the job so I'm trying to ensure a flare isn't started by this.

Keeping moving is a must even if it's just a light stretching during hard times it will help keep the joints mobile. 

Getting outside helps me even if it's only being wrapped up and sat in the garden reading I feel better for it. Talking to those that understand definitely helps as does having a good old fashion belly laugh 😀 with friends.

I hope you refind your balance soon

All the best

Ali

[Mandy-Rose in reply to Ali_H]

hi..thanx for that...this is just the advice i need and will keep needing till i accept that the medication is a good thing..and i have to take it..

[Amhoarten]

Hi Mandy-rose, I am a newbie too having been diagnosed 8wks ago.  To be honest I'm still very much in denial still.  At one point I was so sore and my joints were blown up like balloons.  I was given a steroid injection then I felt normal again.  At that point I was diagnosed.  I had the "but how I feel fine" thoughts.  I'm now on Methatrexate injections.  Like you was scared on toxic drugs.  I have mine on a Sunday and I actually call it toxic Sunday.  My rheumatologist told me the disease progresses at its fasted in the first two years and if they can hit it hard and fast in those two years the damage to joints has been proven to be less.  That's just what I was told and not fully understanding it all myself that's what I'm going with.  I'm due to have two more drugs added into my treatment plan.  I have found this forum a great place for support and to get answers.  We are all in this together.  xx

[flow4]

Hi Mandy-Rose, and welcome. I was diagnosed with sero-neg RA in November, then with psoriatic arthritis (PsA) in Feb when a rash showed up... Like you, I was started on hydroxy then added mtx, then the hydroxy was stopped when my diagnosis changed. I was terrified too. After 6 months of treatment and 2+ months of mtx, I feel much better in myself. I am getting some side effects - nausea and exhaustion in the 48 hours after I take the mtx - but generally my pain and inflammation levels are massively better than they were 6 months ago, or for most of the past 5 years.

I come at this from a different angle, because I was undiagnosed and untreated for a long time - I have been unwell since autumn 2011. Because I am sero-neg and I had a lousy GP (I have changed since), my symptoms weren't properly evaluated or taken seriously until they got really bad, and I just carried on in a lot of pain and feeling ill, but being treated like a hyperchondriac. In 2013, I changed GPs, and the new one quickly spotted that I needed a hip replacement! My hands and feet started deforming. 😖 A year later, last summer, my body started showing all sorts of  weird and dramatic inflammatory effects, including bursas, swollen eyes, IBS symptoms, various swellings and lumps... 

So, however scared I am of the treatments, I am much more scared of what happens if you go a long time *untreated. If they've caught your disease early, there is a good chance you will never have deformed joints or need joint replacements, like me. It is all very overwhelming sometimes, but stick around - you can always get support here. 😀

[nomoreheels in reply to flow4]

Well written Flow. Rather than getting too bogged down & concerned about what we're prescribed I think it helps to look at why it's necessary we adhere to taking meds for this disease & associated autoimmune conditions. They're necessary to aid the slowing down of progression of a chronic condition, one which has no cure to date (though it is a hope the future) & how we could otherwise be without those meds, looking at archive pictures shows the result. That for me helps understand the need for the meds. From the start I chose to look on my meds as antidotes not poisons, particularly MTX, because basically they're not for those they're prescribed for. 

[Mandy-Rose in reply to flow4]

Thanx...im getting so much support from everyone and im so appreciative.

[Mandy-Rose in reply to flow4]

thankyou...everyones advice is so honest on here....

[rawillbebeaten]

Hi Mandy Rose, I've had RA since 2001 and am still working full-time, driving, going to Zumba classes and walking my dog. I'm now 52. I've had to change some medication and that has disrupted things a bit over the last few months, but I have to believe it will settle again. I vividly remember the shock of the being told I had RA and would be on medication for the rest of my life. It rocks you to the core, but the experts WILL find the right combination of drugs for YOU. It may take a while but there are a lot of options. My 2nd thought after the diagnosis was "I will NEVER let this beat me" - I have to say that resolve is being tested now, but staying positive and getting information will help. My thoughts are with you as you come to terms with the shock. There's a lot of on-going research being done into RA and related conditions, and new drugs being developed. You may be one of the lucky ones that find the first drugs work for you and you get no side effects or bad symptoms. I really hope so

Michele

[smithfield]

I never have a problem with your views.x