Just been diagnosed with RA at 44 and petrified of the treatment and at the moment I'm managing fine so don't want the meds!!

[woodstar1]

The treatment is just scaring me to death and just want to try and cope as I am at the moment and if I really need the meds then I suppose I will have to try them. Anyone else feel like I do? Thank you in advance.

[nomoreheels]

Hiya woodstar1 & welcome. Sorry you're feeling as you are at the moment, it is a distressing time when first diagnosed. You are fortunate in the fact you're feeling well enough you want to be able to try & cope & not start the recommended treatment. I couldn't wait & was at crying point & I had done so even in the street when I couldn't walk any further for the pain & my husband had to go for the car to collect me. I was desperate to have something help with the pain, stiffness & swelling I had when first diagnosed. Please consider carefully as the meds offered are to help to minimise the risk of further damage & whilst I appreciate if you feel reasonable now this may not last. If it's methotrexate that's been suggested, which is usually the first line treatment along with anti inflammatories, bear in mind that it will take up to 12 weeks to absorb, by which time,even if you have a non aggressive form of RD, believe me you will be grateful for it. Were the possible consequences not explained to you by your Rheumatologist?

You will receive many more replies I am sure & please take from them when making your final decision whether you take the advice of your Rheumy or not.

Only you can make this decision, but I do hope you make the right choice for you.

[allanah]

Hi I agree with no more heels point of view. If you have inflammation in your joints this does increase the possibility of it affecting the joint even if it's only mild. I would listen to your rheumies opinion and even call the nras helpline if you would like to talk to someone . It's on their main page nras.org.uk

It's very scary at first Snd when you read the literature on the meds you want to run a mile! But in the main they are not as bad as the disease progressing and the consequences of that. But that just how I feel. I bury my head about having RA quite a lot but at the end of the day I know I have it and now have come around to accepting it , that I need help and support and for me treatment especially pain medication.

I hope you manage to come to a decision that is good for you but either way do keep chatting here ! Ax

[Prairie]

Hi I think we all feel at some stages with R A scared....I was like you at the very beginning...I even sat there and discussed with many consultants I woudnt try any of the drugs...they explained how taking the drugs would slow the disease down I wouldn't have any of it...after a year or so...my pain became unbearable my joints swelled so then I had no choice as to try the dmards. After couple of years trying different dmards my side effects were so bad I reacted to every one i tried. I became very poorly...each time i felt worse than the actual disease itself...unfortunately I couldn't take anymore. Some people can tolerate others cant its a case of trying to see which one is suitable...most people are lucky enough to find something that does work. Unfortunately for me that wasnt as easy...I became the complicated patient in which having been told I had the more aggressive RA I was also very scared...i then after millions of tests for other immune defiencies i was told I had secondary sjorgrens..which still today isn't a 100%. I have all the symptoms but my blood tests are negative for sjorgrens..even though this is another diagnosis . I do tolerate steroid injections which has in te past given me quality of life and a great help but long term for me they are no good as now I have thinning of the bones. Next stage My consultant didn't know what to do next for me in ways of medication so as from january this year ive been drug free...i have had quality of life back look well feel better than i have done in years...and im waiting on my referrel to me to meet a new consultant who specialises in RA and other immune defiencies...as my consultant needs help/advice as how to Medicate me...I'm starting to flare a little now with pain and feeling tired...so the sooner my appointment arrives the better for me. For all I've been well...we all need some kind of treatment to slow this nasty disease down...I'm still very worried and scared...at this stage after many years...as I don't know internally what the disease is doing to my body...even though Im drug free...I know myself I need something to help me...I hope you can understand this very complicated stages of my RA...and we are all different in ways of tolerate different drugs....I wish you all the luck on whatever path you take...my advice to you woud be sometimes we haven't a choice, it's taken out of hands...let me know how you get on....there are alot of lovely understanding well experience people on this site which have helped me...so never suffer alone..it's a long journey but as complicated as I am I take the good days with the bad and somewhere along the way as poorly as I was I also have had some better days...and fingers crossed im hoping this new consultant has some answers.... sending you big hugs Nicola x

[Beaches2]

Hi Woodstar and welcome from me too

Like nmh I had a very sudden and aggressive onset so I was desperate to take anything that would help. I was diagnosed 6 months ago and although I knew very little about current treatment for rheumatoid, I had some experience of the disease from working in a rheumy hospital many years ago. The treatment now is very different and is aimed at preventing the disease from progressing rather than just managing the symptoms, and is offered as soon as diagnosis is made to try and halt it in its tracks. It is obviously your choice whether or not to take the drugs and I can understand that if you feel ok now it may feel unnecessary, but please make sure you understand fully the possible consequences of leaving things uncontrolled so you can make an informed decision. The drugs sound scary, but they have to tell us of every possible side effect, most people get on just fine with them with minimal side effects.

Good luck with whatever you decide to do x

[Hidden]

I feel just the same as you and will not take any thing stronger than pain killers I have a great rummy doctor and I am being offered counselling to come to terms with long term medication for aggressive rd so don't be afraid of tell the doctor you fears its the scariest thing I have had to face alone but I have found great support on here. take care x

[artyone]

Hi nice to hear from u. Think we are a mixed bunch. I was diagnosed 5 years ago. Specialist wanted me on mtx . I said no drugs. I have a problem with tablets and am phobic about tummy upsets. This was three years ago. Since then we tried steriod injection in both knees, that made me so ill I ended up in hospital. My body does not like any drugs. Anyway I did have jab in my bottom after a couple of days feeling un well that really helped with the swelling. After 3 years my ra doesn't seem to be much worse,so I am pleased I didn't take the drugs. In the future I may have to try but for me I would rather be swollen and stiff, than have an upset tummy. Just think what suits your life style , and stick to your guns. This is your illness manage it your way. With all the knowledge from the doctors. They really do want to help and will do. Take care x

[helixhelix]

It's your body, and your choice so don't feel bad if you want to try without meds to start with. But what I would advise is that you talk this through with your rheumy and try to get him/her on side with your decision. What you don't want is to piss the rheumy off as you may well need these services later on. And docs being human can feel that if a patient is obstructive then they'll get pushed down the priority list for future appointments.

Like others I found the idea of the meds scary to start with, especially as I had hardly taken anything stronger than an aspirin before. But when I read up on what the disease can do if uncontrolled -not in terms of paints,but affecting heart and lungs - then I changed my mind. And am very glad I did as the approach of treating it aggressively to start with seems to have worked for me as I'm now fine. So take your time with the decision, but the meds are ok for most of us.

[Hidden]

Hi Woodstar1. So sorry to hear you've got RD. I agree with all the suggestions so far and would just add that years ago the drugs that exist now weren't around and this is why so many elderly people are seen bent and crippled with this disease. The benefits of modern therapy means that, if caught early, you should be able to live a relatively normal life with minimal side effects and the benefits far outweigh the risks. Most of us manage on medication and are very thankful it's there! Don't be too quick to dismiss it. Very good luck.

[magglen]

As someone who hated taking an aspirin for a headache I was also terrified of starting the medications but felt I had no choice. I wish I had started them earlier and prevented my hands and feet from becoming so distorted. I was very ill and almost bedridden for three months but now I am back on my feet and walked four and half miles with the ramblers yesterday [and I am nearly 80yrs old]..

[sparker]

Hi consider carefully your options. I was diagnosed 5 years ago at 40 and while I was in terrible pain during a flare my life was otherwise quite normal. I have now spent 5 years taking various drugs and have suffered terribly from the side effects. At my worst I was bedridden and terribly depressed.

4 months ago I decided to stop taking all of my medication and I have improved day by day. The icing on the cake came yesterday at my consultants appointment where I have now been declared in clinical remission!

I believe that you should ensure that you are mentally able cope with this disease, I think counselling is a must, and then I think you have to listen to your body and if you feel that you are coping well without RA drugs go for it. The medications for this disease while life saving for some can be terribly destructive for others.

Good luck for the future it can be a positive one!

[pineapple_head]

Hello and welcome! I truly understand your worries. What's being offered for RD/RA would scare the pants off anyone!! I was offered meds and refused for 1 year and eventually went on them and felt so well afterwards that I regretted putting myself through

pain, etc for one year! I agree I had to try 3 DMARDS before finding the one that worked but it was well worth the efforts.

On the other hand I have come across 2 women who went on methotrexate and never looked back. The first woman is on remission and med free and the second lady is still on methotrexate but pain free and back to normal life.

Everyone is different but be aware that this site attracts the RA obstinate cases. Most people who have RA and are well don't come here because they're too busy living their lives to the full!

Good luck and learn as much as you can about RA/RD so that you can make an informed decision. Nras have a helpline give them a ring!

[gracie47]

Hi I have had RA/RD for 16 years but have only just found this site. I have taken many of the different drugs and am in the process of changing drugs again but Iwas very afraid of them when first diagnosed and resisted for years.I have quite bad damage in my hands and feet and i do wish i had listened to the doctors and started treatment earlier but took me a long time to accept I had this illness and i was scared of all the side effects. I think as the others have said everyones journey is different and the more you can talk through all the options with people you trust the better. At least now there are sites like this to help people make informed decisions hope you are soon feeling well again.

[Hidden]

Hi woodstar1,

sorry to hear how scared you are feeling. Lots of very good words of wisdom here. If you would like to talk to someone about this then please feel free to ring the NRAS helpline on :

0800 298 7650 Monday - Friday 9.30am - 4.30pm

We would be happy to discuss things with you and give you as much help, information and support that we can.

Regards

Beverley

[francherry]

Hello Woodstar. I remember being in your position. I didn't want to take the drugs. My RD was mild for the first two years and then it accelerated. I'm very sensitive to medication and to cut a long story short because of bad experiences with medication had a 7 month self-imposed hiatus from medication. During this time I developed bone erosions (I have erosive RD) and was diagnosed with bronchiectasis (lung condition) which was a wake-up call for me. I decided to go back on the meds and for me it was the best decision I ever made. It has taken time to find the right drug (now on anti-TNF Enbrel) but my inflammation has gone down and bone erosions have stabilised which is great news. I agree with others about making an informed decision. All the best and keep posting.

[woodstar1]

Hi guy's I've just got in from work and have been inundated with responses to my query and worries. Thank you all so much for your kind advice and I now have even more to think about. Thanks again.

[binlid]

w all were scared and i admit every time i take my meds iworrybut am 18 months in and feel abetter than i did at the start so the drugs do work have tried a few though good luck with whatever you decide

[Susiej38]

Hi! Even though you say you are managing fine I would take very seriously what doctors suggest. The medicines are very scary, yes, but if your symptoms are ok at this point you may not have to take but very little- I've heard of people going into remission on a low dose of Methatrexate alone. I myself had sudden severe onset RA and had months of being only able to get from bed to toilet . I could not comb or brush my hair because I could not raise my arms and my fingers were useless to grasp a brush. I spent many days like a zombie on pain meds waiting for RA drugs to kick in. I could go on about how horrible this disease can be but on a positive note if you have found out early and can get it under control you are ahead of the game. I know it is very difficult to accept that we have this disease and you are young. My niece developed RA in her 30's and deals with it very well- she and her drs aggressively treated it, and she has never been in the situation I was in last winter. Good luck and God Bless you, Dear!

[swarovskifan53]

Hi. Sorry to hear of your diagnosis. Very scary. I was diagnosed 12 years ago. Started on sulphusalazine,good for 3years,then stopped working. Then on methotrexate,same again after 2years. Have been on methotrexate and ENBREL injections for nearly 7years and live a mostly normal life. With flare ups still, but much less. You must learn to pace yourself,don't try to work through the pain as this will make you worse. When you feel tired,rest,and hot baths with Epsom salts can be a great help for pain. I also find a drink of 1 tbsp of cider vinegar with honey and hot water 3times a day is very helpful. Also to cut out any acids in your diet,tomatoes,citrus fruits,normal vinegar etc. I have a book written by a woman who has had RA for many years. She changed her diet and hardly suffers at all now. And is on no meds at all! The book is called Curing Arthritis the drug free way by Margaret Hills SRN. Hope this helps. Good luck for the future! x