Hello I'm new to rhumy

[Selbel]

Hi I've stumbled across this site seems everybody knows what there talking about found out some scary information regarding the treatment didn't realise mxt was chemo? Not that I'm on any treatment as waiting to see rheumatoid consultant on Friday after waiting nearly 7weeks! So thought I would say hello

[JacquiThomas999]

Hello sorry that you have joined the club.

Make sure you have written down all your symptoms, questions and medications.

Also if you can take a friend with you.

Wear clothes that you can easily get on and off and take a good book. You may be there some time.

Good luck.

[gwynedd]

Hello and welcome.

When i first started on this journey the medication was scary, i researched the meds and as such expected all the nasty side effects. The reality is that I've had some nausea and tiredness the day after mtx only and that's about it. So my advice is to not get overwhelmed by the meds, wait and see what your rhuemy recommends, discuss options. I've learnt this is a long road and one I'm probably not getting off 😉, so I take each day as it comes and enjoy the good ones. This forum is a great place to ask questions, get support or just to have a good old moan 😀. Good luck with your appointment on Friday.

[medway-lady]

It would be if it was prescribed in 100of times the dose we get. And a lot of medications are used for different things so simply ignore the panic of chemo drugs. Its in fact a lot misleading especially for anyone who has had Chemo. MTX works well for a lot of people not just here but in America and Canada etc. I take Leflodamide and live a completely normal life so welcome and do not be scared, the scary bit is living with pain and fatigue and all the rest of the symptoms of RA.

Remission is possible and bad news spreads so much faster than good. Treatments are good for most people and improving all the time. Only 7 weeks thats not bad around here its more like 17++ hence I'm private as well as NHS.

[LD1954 in reply to medway-lady]

Hi I am a Medway lady too. My GP said I would get a referral in about 6 weeks but I doubt very much it will be that quick...

[JacquiThomas999 in reply to LD1954]

I managed to get a cancellation. Saw Rheummy 10 days after referral. Fingers crossed.

[medway-lady in reply to LD1954]

I so dislike Choose and Book but the Spire is in it now and thats a good choice if the wait is a long one. For me years ago it was several months, hence saw consultant at the Spire. Same guy as MMH, he's lovely. Very funny and helpful, explains things well and does take time. MMH are good in my experience no complaints at all. 'cert for the coffee !! lol xx

[LD1954 in reply to medway-lady]

I have also heard he is very good so I will wait for an appointment to come through, although if it seems a bit long I do have cover via Benenden, but its not the easiest place to get to. Thanks for the reply.x

[nomoreheels]

Hiya & welcome. Pleased you've found us & I hope it will help being here, ask away & we'll help if we can. To start though we can clear the confusion about MTX if nothing else! For many here it was their first DMARD so it's commonly used, in fact first used over 30 years ago for autoimmune diseases & even regarded the gold standard treatment. Whilst it's initial use back in the '40's was in treating cancer it was found, in much lower doses & in a different formulation, to be helpful at dampening down inflammation & other symptoms, the big difference is we take it once weekly & cancer patients are administered it daily. As with any drug it works for some but others don't do as well. I've been on it nearly 7 years after my first DMARD hydroxychloroquine stopped working & you'd have to fight me to stop it it's worked so well where 2 other DMARDs (HCQ & sulfasalazine) haven't so much. Try to keep to reputable sites if you're searching on the internet or you will scare yourself silly. Try nras.org.uk, arthritisresearchuk.org or arthritiscare.org.uk & the NHS Choices is helpful too nhs.uk/pages/home.aspx

I hope your first appointment is productive, it's a relatively speedy one, within the guidelines so that's good! Let us know how you get on. It might help if someone close can go with you as there can be quite a lot to take in at one go.

[Selbel]

Thank you yes I've read about the drug sounds quite aggressive the question I would like to ask about as it's a cancer drug am I going to lose my hair? I've read you only have it once a week so not as aggressive as daily?

[nomoreheels in reply to Selbel]

I'm not going to lie, some do but like mine did it usually settles down & to be honest it was only noticeable to me & my hairdresser when I first had my hair trimmed after starting it. I keep my hair short anyway because I can't style it so well nowadays, OA in my hands affects my grip. It's nowhere near as you would imagine chemo patients have & is temporary but I understand how it can seem alarming, especially to the newly diagnosed & those never having needed much more than a paracetamol. One positive for me (& a few others here) is it's regrown with a positive wave in it & it's a different texture so my previously straight hair has more body! We're prescribed folic acid to counteract side effects as MTX is a folate antagonist hence possible hair thinning, I take 5 mg 6 days a week, just not the day I inject. That said it's not the only DMARD with this side effect, leflunomide is also known to affect the hair & I'm due to start this in the next few weeks & to be honest it's not concerning me, I'm looking forward being better controlled but that's me, 8 years in! Unfortunately all the DMARDs being specialist meds do have the possibility of side effects but we're dealing with a rubbish disease that can disable given the opportunity so just trust in your Rheumy, ask all the questions you need answers to & anything else we're here for you to share our experiences.

[Beaches2 in reply to Selbel]

Hi, it's horrible thinking you might loose your hair on top of dealing with this, but although some people might find their hair does thin a little, for most it's only minor. My hair did start falling out a bit when I added leflunomide to methotrexate......so I was on the 2 drugs, but it soon settled and although I'm still on them both, my hair is fine now. If you do take methotrexate, you will be given folic acid tablets to take as well and they reduce a lot of the possible side effects.

i know it's difficult but try not to worry, see what your rheumy recommends first and take it from there........loads of support for you on here when you need it x

[Mandalou in reply to Selbel]

Hi Selbel and welcome.

You will be given lots of leaflets at your first consultation most likely depending on your diagnosis or probable diagnosis. Blood will be taken and urine and I had X-rays done of my hands, feet and chest. This is to record a base line for future reference.

They will look at your inflammation levels by using an ESR test and a CRP test. The ESR is a measure of general inflammation but the CRP is more specific and sensitive.

( I won't bombard you with all the nuances of how these levels can end up affecting what treatment you are entitled to, that's for another day.)

I had to strip off down to my bra and pants and lie on a bed where every joint was examined and squeezed and my scalp and even my belly button were examined for signs of psoriasis. Which could have indicated psoriatic arthritis.

I was told my GP had done exactly the right thing in having me on large doses of oral steroid as my symptoms were so sudden and completely disabling. As my first appointment drew nearer my GP wrote out a rapid tapering schedule to safely reduce my steroid intake so my symptoms came back and they weren't masked so the Consultant could see the full onslaught of swelling and pain, though rapid it was done very safely and stringently so I was not at risk of adrenal failure.

Having been told I had what is called sero negative inflammatory arthritis either rheumatoid or psoriatic ( as I have family history of psoriasis) even though I have no psoriasis symptoms the consultant said not to worry as the first lines of treatment are the same.

She said as I showed negative for Rheumatoid Factor and had a negative anti CCP test I should be relieved as traditionally though not exclusively those with sero negative RA have a less severe form or are less likely to progress to the severely damaging form.

Having a negative R factor test does not preclude you from having a positive R factor test in the future.

Anyway, all I'm trying to say is as others have said, please don't freak out too much about the drugs.

My very best advice for you and you sound extremely level headed and pragmatic so far , is to absolutely own your disease. Be your own best advocate.

Not always easy as its a minefield but you will become an expert and its in your own best interests to do so.

Wishing you the very best of luck on your journey. You are amongst good company here.

Mx

[Mandalou in reply to Mandalou]

I blinking rambled on when all I meant to say was that yes I have suffered a fair bit of hair fall.

My Rheumy nurse said to be prepared for it. I'm on Hydroxychloroquine and Enbrel which is a Biologic.

Sorry to have interjected in the middle of a thread peeps.

Mx

[Selbel in reply to Mandalou]

Thank you x

[Jollygoodglyn]

A year in on Methotrexate I feel I am a bit of a fraud for being on this site. I haven't really got any symptoms. Fingers a bit numb but nothing as low as the time I was asked to open a bottle of water outside the rheumatologists office and had to decline. I was responsible for a group of travellers at the time of the Charlie Hebdo attacks. My jaw seized up, I had a frozen shoulder and I couldn't hold the zip on my bag. It did cross my mind that symptoms were stress related. As I say, a year in, having lost my job as a result of fatigue and fighting throiyh the pain without complaint, find myself wondering what the fuss was all about. Life changes? Reduction in alcohol intake, much sleeping mid afternoon, and, curiously, visits to the gym are now an essential part of life, rather than a vanity project.

[Hidden in reply to Jollygoodglyn]

Ha ha ha ha - I LOVE your post Jollygoodglyn - I think it is an end to be consummately desired to have few or no symptoms, yes? I think you are perfect for this site, especially as you can probably tell us if you did anything different than most of us?

Yeah, stress is not our friend for sure with this disease.. Thanks for a great post

[ruth_p]

Welcome. My journey through arthritis has been a long one. I was diagnosed 21 years ago with JIA when I was 14. I've been on mtx, leflunomide, steroids and several different anti inflammatories and now my third biologic. However the side effects of most of these drugs have been minimal except those from the steroids (weight gain, moon face, cateracts and two hip replacements). I haven't had any hair loss from the mtx or leflunomide. The folic acid counteracts the side effects of the mtx and I take it 6 days a week. I am lucky to be well enough controlled that I work full time as a Reception Teacher and go to the gym 4 times a week. My head teacher was also very understanding when i flared last year and i had half a term off work and a staggered return once my new medication worked. I hope everything goes well at your appointment and like the others said go prepared with questions and your symptoms and try to take someone with you. Good luck.

[Selbel in reply to ruth_p]

Thank you.. x

[Jefflin]

Hi! I've been on Mtx and Leflunomide and my hair is as thick as ever 👍 So it's not a certain thing that you would get that side effect.

[Adalisone]

Hello, I've got my first appointment with rheumatologist tomorrow, feeling quite nervous not knowing what to expect. Good luck for Friday

[Selbel in reply to Adalisone]

Good luck also x

[ruth_p in reply to Adalisone]

Goid luck toyou too x

[mickeysmom34472]

welcome, sorry you have to be here but this is a great forum!. L was diagnosed 5 months ago and I am on methetrexate as well as folic acid (to

keep you from getting sick) and meloxicam for pain. If you read up on it , it is a little scary and people's reactions will scare you. I had no reactions. I was scared but I couldn't take this pain anymore as it was taking over my life. I just said a little prayer and threw all 4 pills down at once and... nothing. I always say, if I have any cancer in my body that I don't know about maybe the mtx will take care of it. Good luck, don't be scared, everybody.

's different and if this doesn't work for you, they have plenty of others. Make sure you ear food before you take them!

[mickeysmom34472]

ps. I am also from the United States