Confirmation: Had my first appointment today with... - NRAS

NRAS
25,829 members29,483 posts

Confirmation

Had my first appointment today with Rheumy, RA confirmed! Lots of x rays, bloods done and been prescribed methotrexate. Feel really emotional about about it all, think I was hoping it wouldn't be RA wishful thinking! Oh and Osteo A in my finger joints. Not taken meds yet I'm in deniel 😲 suppose it's normal to feel like this on first day?

36 Replies
oldestnewest

Hi, it is very normal to feel this way. When I was first diagnosed I was relieved as at last I knew why I hurt so much🧐 Then I was terrified unfortunately for me I came home with steroids Methotrexate and Hydroxcholorine. At 55 I had only ever taken paracetamol, all the drugs and reading the side affects terrified me 😢 Two years later I am feeling my old self albeit nowhere near as fit. You will be in shock, you will feel angry, and you will cry. This is all normal👍 Take one day at a time, this site is a godsend 💕 and will help and answer any questions you may have. I truly hope this helps you as I know this site helped me no end in the beginning 😁 I had to learn to say no to people, and rest when I needed to. Although it is important to keep moving 🤸‍♂️

9 likes
Reply

Thanks doughnut😁 I've got to be strong and positive! I'm not helping myself with Silly negative thoughts about how I was, how it used to be...... I've been preaching to my clients the importance of living in 'the here and now' but I'm not getting it myself. God what a sorry state😣 I'm used to running up the hospital corridor not limping up it. Keep staring at the tablets🤤🤤I really should not of researched the negative side effects. How come it took you 2 years to get back to feeling you?

Reply

We are all different and some meds help some more than others 🤔 by the time I was diagnosed I was in a pretty sorry state🙈 I could only do stairs one step at a time . To shower and sit on the loo was hell (pain made me scream out) to bend. I was diagnosed with very aggressive seropositive RA🥺 Rheumy said I have had it for a while? I was told the strong drugs would blast the disease. Which it certainly did! But the drugs can make you feel a bit yuk. The way I see it is we are lucky to have drugs (although not nice) to help us. I can always remember an Aunt of mine was so deformed and wheelchair bound by this disease. You will be fine😁 💕

1 like
Reply

Hhrllo my lovely, Yes same symptoms as me, taking the stairs one at a time and debilitating pain using the loo, terrified of the bath! Could I ask what is sero negative RA?

Reply

To be honest I don’t really know the difference. I believe sero positive is the worst. But I stopped googling as I was sending myself ga ga x Others on this site may have that information 😘

1 like
Reply

I'm seropositve🤤🤤

Reply

But I've been told both experience the same symptoms with not much difference it's a weird one!

Reply

All I can say is listen to your Rheumy team, if you feel a drug is really not suiting YOU tell them. But don't read about all the negatives X,Y& Z experience & start looking for them.

It's quite normal to be apprehensive about Dmards, but many of us were diagnosed years ago & after trying a couple of them most of us find what suits us, pick up our lives & carry on.

I firmly believe if you think you will go ahead & feel better - you will.

So start taking the Mtx & the Folic Acid, & just get on with your life...hopefully feeling better each day.

2 likes
Reply

Hey jaxine.

Hope you are ok this morning.

Doughnuts words above are great.

Its so normal to be upset, don't berate yourself for that.. It'll be a journey, it has been for all of us..

Definitely take the meds hun, they are your doorway back to feeling OK again, I wouldn't take steroids.. Back in the 80s.. Lol! What an idiot, I was totally crippled, within a day of taking them, I could walk again. Steroids aren't good long term though. The first meds I had that helped was mtx. Am still on them over 2 decades later!

I do take daily probiotics to help my system cope with them.. Otherwise I did get cramps, but I had no other side effects.

We are all here for you.

Take care

Love jojo x

1 like
Reply

Thank you and great to hear that! What probiotics do you take? X

Reply

Hi. I used to take H&B ones, I now take probio7. Bit more pricey, but I swear they help my system cope with the mtx. They thought I had ibs, but when I started taking probiotics, all symptoms went away..

Take care.

Jo xx

Reply

Don't overthink stuff, MTX did not suit me but LEF did and remission followed. It might take time but life strange. Do not think life is over or will change as for a huge majority of us life is normal. Do rememember if 10% of people get side effects then 90% don't and that would be worth a £5 if it was Grand National Odds ! I know its a shock but reality is that there are much worse diseases to get and which have much nastier medications. I know its vital to stay active, don't read the PIL or believe Dr Google and the 'it cured me' at a modest cost posts; and most of all do say no sometimes as well as allowing time for the fatigue which for me is much worse in the winter. I'm looking for the May holiday today as determined to get fully fit again and need a warm break. lol xx

5 likes
Reply

Well said medway-lady!! Good advice needed that 😁😁 just went down hill today

1 like
Reply

lol xxx you'll be great. I'm taking huge doses of steriods for kidney failure and its like being on speed. Why can't side effects include eating chocolate but not putting on weight, hair colour returning to chestnust brown instead of steel gray, and being ordered to drink lots of wine instead of water. Life is too short for all of us so make the most of it. xx

4 likes
Reply

Gosh why are you having kidney failure? Is it the side effects of drugs? If so why did they allow it to get so serious! Sounds revolting for you.

Reply

Omeprazole caused AIN kidney injury, I hasten to add the RA blood test got it, as it took probably a couple of years to manifest and was silent. It is very, very rare so don't worry only a few people in the whole world have had this happen as it caused an immune response inside the kidney. The blood tests are so important ! I had no idea and used to moan bout them, becuase two previous week I was in Cypress and walked 7 to 10 miles a day with no problem. It happened in days and kidneys went from 98 % to 8% at the lowest point in just a matter of hours. But do not fear this happening it is so very rare I was told by Renalogist gone into the 'we have no idea just a hunch catagory of patient.' The NHS was great and I would still have taken the medication as it not like the the so called toxic ones like LEF or MTX etc. Omeprazole can be bought OTC ! It also became clear how a lot of stuff can affect the kidneys like vitamins, herbs etc my experiance of being questioned about NSAIDS (never taken as on Riveroxaban for sticky blood) made me aware of the risk we can take just by not knowing stuff. But then again life is a risk. Make you laugh I have all this medical stuff going on, rattle with tablets and chew others, yet my husband has a slight cold and then got stung by a bee whilst getting a box out of the loft and has collapsed in a heap on the sofa in need of hot lemon and whisky drink with the remote control. He needs ...... xxx

3 likes
Reply

So sorry to hear your story sounds dreadful! I'm on MTX is it really toxic?

Reply

Not as far as I know but others may disagree. It made my hair fall out in handfulls so was stopped after just 3 weeks, keep an eye on that. I felt like I was on fire inside so given Lefludamide (LEF) which put the RA into remission with no side effects but it takes a long time to work (months) and gave me a normal life. I'm lucky as one day I just woke up and the pain, swelling and fatigue had just well gone ! I'm not allowed it at the moment but hope to get back onto it when the kidneys get back to normal, although I don't know what happens yet if they don't. LEF changed my life for the better for years and try not to worry. LEF from America is called Arava now you could go to a party with that stuff, but Lefludamide probably isn't much fun.

I know its hard at first but RA is controllable and treatable so don't get bogged down with all the negative stuff your a social worker so know what is central to wellbeing and what is the risk worth taking for a better future.

3 likes
Reply

Think you loose all sight of what you offer your clients, when it comes to yourself! I was great at consoling others helping them to move forward, words of wisdom and all that but now it's me I'm being a silly pity bag! I will certainly look out for clumps of hair on my pillow sounds hideous😲😲

2 likes
Reply

It regrew ! lol x and I got a trendy new cut too. Every cloud etc. Thought about extensions then thought no lets go funky.....

1 like
Reply

My hair thinned rather than fell out on MTX then it soon settled down and I didn't shed as much, but it affects people differently. Propranalol beta blockers made my hair fall out when I had to take them short term about 10 years ago for an over active thyroid. I had been laying on the sofa with my head on a dark cushion and when I got up I saw lots of hairs. Perhaps I should have made a toupee or knitted a hat?!!! No there wasn't that much but it freaked me to see it collect in the mesh shower plug. Seriously it does worry you but I was told MTX usually thins the hair rather then makes it drop out. Medway was very unfortunate there. Sorry to hear that (and so sorry for your kidney and hope that will be healing soon as it sounds horrendous what you've been through. Feel better soon.). For fine hair I can recommend Kerastase "Volumifique" products. Not cheap at approx £22 but they last a long, long time. The conditioner does make your hair have a lot of body and so does the blow dry styling spritz. They are worth it to me to make the difference. Aussie "Volume" shampoo and conditioner also good at a quarter of the price too. I use both.

1 like
Reply

Keep an eye on the hair........but I have, & always have had, baby fine hair, comes out in my brush every day.

But I took Mtx for 7 years, with great succes,& the only effect was it seemed to make my hair go from ram rod straight to slightly curly!

So keep an eye but, but don't count every hair!

2 likes
Reply

Your side effects made me smile .. If only! 😆

2 likes
Reply

It will take time to set in Jaxine but the Mtx will stop the damage being done hopefully and they don’t need to add anything else but by your posts you’ll take it in your stride, we’re all in this together and here for you xxx

1 like
Reply

Yes I know your right, just getting my head around it all!

1 like
Reply

Just breathe jaxine - it is a frightening time and like others have said, takes a while to get your head around. It can be a bit of a journey, some trial and error with meds but once you’re on the correct meds and a treatment plans in place, things do get better.

Be kind to yourself and take any and all support here- it’s a fantastic site with a bunch of brilliantly knowledgeable and kind people. Take care.

Marie

Reply

Hi, I’m newly diagnosed with RA tooand glad I’m not the only one who really didn’t want to take the tablets. I’ve been put on tablets beginning with H , can’t spell it. And apparently will be given others in couple of weeks. I miss the old me who could easily do long walks with my dog. Feeling sorry for myself today.

1 like
Reply

Feel your pain Cornwall really do, I feel the same! Do you live in Cornwall? I cone from Cornwall myself and have a house there was just curious 😁😁 I've just been prescribed Mtx and folic acid.

Reply

Hi, I come from Plymouth originally, used to holiday in Cornwall a lot. Did you start taking your meds?

Reply

That's probably Hydroxychloroquine, which is a bit of a mouthful so AKA hydroxy or HCQ. :-)

It's one of the milder meds used to treat rheumatoid disease.

2 likes
Reply

Don't despair. Your meds will get you moving again and you will be able to walk even if it takes a bit of time to get strong again. I was totally immobile with bonkers rheumatoid madness 3 years ago and can now do 3 to 5 miles hard terrain quite fast too. I took ages to return as I was looking after my Mum and then selling her house and had trouble from an in law which set me back. Stress exacerbated the RA. I think you mean Hydroxy..... and I can't spell it either! LOL! Try find something creative you can do at home whilst you may not be going out so much and enjoy whilst you're in this limbo period to take your mind off any pain and I'm sure you'll soon be back walking once your joints have responded to the medication. You feel you'll never move again at times .. But you do! Hope you feel better soon. x

1 like
Reply

I understand. Its taken me a while to accept it all as many others have, and spent a long time having a hate hate then a love hate relationship with meds. I now accept and take them religiously, as they help me function and im glad meds are available now unlike years ago. Im also on methotrexate (2yrs now ) and hair has thined but its ok and only me and hair dresser knows no one else can tell. Really we know it is hard and a shock, be kind to yourself and trust those further down the road than you to help and support you. I did and still do.

2 likes
Reply

It’s a bit of a long game. I was shocked when mine manifested 3 years ago. I wouldn’t even take a paracetamol! Now mtx, sulfa and biologics. Took steroids for over two years as couldn’t function. Couldn’t get up one step, hold a pen - nothing.

3 years on things are much much better. Particularly since biologics. Stairs are still one step at a time, but most things are fine. Best for me is the exhaustion has gone and I’m writing this as I get up to go to a 6.30am business networking meeting. I’ve not been able to do that for a while!

Yes, life is different, but that’s ok. I’ve accepted now that it’s different. I plan ahead more for trips and stuff and I’ve got a wet room as no chance of getting in or out of a bath!

Lots of people, probably the majority get on very well on mtx, and hopefully that will be you too. I have no side effects with any of the meds. Phew! Lots of luck. we’re all here for you when you want to rant/cry/laugh.

2 likes
Reply

It took me 2 weeks to start hydroxy prescription- I just kept looking at them. Once I came to terms with the fact it was the only choice I had I began them.

I STILL 10 months on think I’m a little in denial 😊

3 likes
Reply

We are all different......I couldn't wait to start taking something, ANYTHING, to take away the Pain!

Maybe I'm just a naive wimp, but I knew very little about RA back then, & thought that any thing that would help me throw away my walking sticks &'walk without pain was worth a try!

3 likes
Reply

Hi Jaxine,sorry to hear you have RA.At least now you have the diagnosis and right treatment and you should start to feel some What better.😩I have my first appointment with reuhmy for a diagnosis and feel as anxious as you.Take care and get on those meds.I know 3 people on them personally and they work wonders.xx

2 likes
Reply

You may also like...