Newly diagnosed and scared: Hi was diag 4 months ago... - NRAS

NRAS
26,485 members30,390 posts

Newly diagnosed and scared

Ninnin67
Ninnin67
42 Replies

Hi was diag 4 months ago with an aggressive (hospitals word) positive Ra . Been on steroids since and am being presured into mxt ,but am so scared re side effects etc. Plz could anyone offer any advice. Boy am i struggling at moment with hands and feet ,never knew RA was this awful .Thanks

42 Replies
oldestnewest
oldtimer

Sorry that you have had to join us here but you will find it a supportive and useful group.

Have a look at the treatment pages on the NRAS website as that helps to put the side effects into proportion a bit - but anything that is effective has unwanted effects as well as the wanted ones!

I can remember being very apprehensive of going on methotrexate and delaying by about three months while I 'thought about it'. But the effects of the disease untreated are awful and life changing. There are many people on here whose disease is well controlled on methotrexate with minimal problems. Others have not had such good luck, and after a trial will have to look at other medications.

Methotrexate is the 'gold standard' treatment that suppresses the immune system so that it stops (or reduces) the attack on your own tissues.

You also will want to look at other things that you can do to make sure that you are as healthy as possible - good diet, exercise when you can, not smoking, and keeping alcohol intake to a low level.

7 likes
Reply
Deeb2908

I am at the same 'stage' as you 4 months just come off steroids ready for the first rheumy appointment but hands and feet awful and just hating it all right now but trying to stay positive and open minded, Until I see what works or does not or what is said by consultant I am just reviewing reading and diarising everything ready for the next stap of meds and the route I need to take for me.

Good luck but this site is fab I have to say x

1 like
Reply
Dobcross1

Yes, I know exactly how you feel- that was me 11 months ago. To say I didn't want to take methotrexate is an understatement! I am now on 17.5mg injections each week and though not where I want to be yet I'm getting there. In terms of side effects I had a few to start with but they passed and you learn to manage them - ie drinking plenty of water the day I inject means I don't get nausea. But some people have no side effects at all. It's up to you I can only say that methotrexate has given me my life back and I'm grateful for it - and I never thought I'd say that!! Good luck whatever you decide..

4 likes
Reply
sunnyweek

I can remember when I first started methotrexate being worried about it. In the end I remember just swallowing the little yellow pills. The hospital increase the dose gradually if needed so they should only start you on a low dose. You may not have any side effects at all, they have to list them. I was on 25mg for seven years. They could make you feel a whole lot better. I hope they work well for you.

Reply
Ruth12345

Many people have been where you are on here, we get it. There are many meds so don't get despondent. My only advice I would give you is be patient, I was told that but wasn't and didn't help myself because of that. As has been said this is a great site, but many people who are cracking on with their lives don't come on here so don't think that all people have issues. There are some people that have stayed on here and know so very much. I wish you well.

4 likes
Reply
nomoreheels

Hiya Ninnin67, welcome from me too. Well, I've been diagnosed seropositive 11 years & been on methotrexate 10 years, it was my second DMARD. Truly you're not the first to be concerned about starting MTX, I'd even say most everyone who's first DMARD it is concentrate on the side effects they've read about... Google has a lot to answer for! Well, again truly, you don't, we don't, your Rheumy doesn't even know how well or not you'll do on MTX, not until you've started it & been on it a good 12 weeks. You see none of the DMARDs work straight away, they need to build up to have any effect, equally side effects, you won't know until you start it whether you'll have any be they tolerable or otherwise. Often any initial side effects ease, whichever DMARD you're prescribed. One positive though, we are coprescribed folic acid to help should you have any undesirables. You see MTX can cause our our folate levels to reduce, hence replenishing our stocks with the folic acid. The dose frequency varies according to Rheumy's preference, I've been prescribed it once a week, twice a week & currently every day except the day I inject MTX.

Your Rheumy has chosen MTX for a reason, you said it, you have seropositive aggressive RD, if you're being pressured I guess it's only because it's considered the better option to bring you under better control, as has been said it is considered the gold standard treatment on diagnosis. There are other DMARDs if you want to discuss options with him/her, but I'm a bit concerned, how are you being pressured, what has been said to make you feel that way? You shouldn't be made to feel you have to take something you really would prefer not to but equally if not fully au fait with it it's your Rheumy who should answer any concerns you have. We need to form a good doctor/patient relationship & any reasons for being uneasy with a particular med should be talked through, he/she has your best interests at heart, Rheumy's want to help not harm their patients.

As you'll have been told MTX is only taken once a week. When I first started it my Consultant suggested I split the dose & take them with meals to reduce the possibility of side effects. So, I started on 15mg & took 2 tablets with breakfast, lunch & evening meal. It really helped me but often it's suggested the whole dose is taken at bed time, the idea being you sleep through any side effects but my Consultant didn't recommend that, his theory being it could cause disturbed sleep. If having given them a good few weeks tablets don't suit you there is the option of trying it in injection form, the only DMARD we have this option of.

If there's anything we can help with you need only ask. All of us have been just where you are, we understand you've probably had so much info to take in & it's a huge learning curve never mind coping with the pain of RD we all had before being settled on our particular med regime. Meanwhile it might help to have a look through the NRAS site nras.org.uk. For any other info try to keep to similarly reputable sites, you'll scare yourself silly unnecessarily otherwise!

5 likes
Reply
EdieB

Hi Ninnin. I have been on 25mg of Methotrexate injections for almost a year now. Other than feeling a bit sluggish, I can’t pinpoint any significant side effects. I am now starting monthly infusions along with the MTX.

As others have said side effects and reactions are individual.

Good luck!

1 like
Reply
medway-lady

Worst bit is over you know what is causing your difficulties, honestly most people who are too busy enjoying life to bother with posting much lead entirely normal lives. MTX is a widley used medication and you can read a lot about it. I'd just say if 10% get side effects then 90 don't! so just give it a try with an open mind. If it does'nt work then there are lots more but MTX is the first one the NHS use and it is still very good. Its not silly to be scared but it is silly to believe that life is going to be awful from now on, it won't be but it might take time to get the right drug.

Reply
helixhelix

Others have made great comments. So just to say I too have seropositive aggressive RA, and for the last 9 years methotrexate has been my best friend. It has allowed me to live a normal, mainly pain free life, and I wouldn’t be without it now. But I was terrified at the beginning too!

9 likes
Reply
Hidden
Hidden

Same, diagnosed about 7 months ago. I've been trying natural methods first - on an anti-inflammatory diet and I use ibuprofen as needed, generally 1 200 mg in the morning and 1 at night. I also do a ton of exercise. Not sure how long this will work, but I'm scared about toxic meds making everything worse. Does anyone NOT use DMARDs?

2 likes
Reply
CagneysMum
CagneysMum
in reply to Hidden

Hi Frupie. Some great advice there that I’d agree with. I’d also be really interested to learn more about your ant-inflammatory diet?

1 like
Reply
Hidden
Hidden
in reply to CagneysMum

it's pretty strict. No dairy, no added sugar (just sugar in fruits), no gluten, no processed food. I do eat seafood, but no meat. I've lost 40 pounds since february without even thinking about it. I feel happy about that :) I'm the healthiest I've ever been - except for the stupid rheumatoid ;) Lowered my glucose, cholesterol.... I was pushing 180 pounds in January. Diet/exercise seems to have stopped all of the acute flare ups of joints. Now I get stiffness and soreness. I usually try and walk that off in the morning. I do realize that someday I may need a DMARD. My mom had rheumatoid and I saw what she went through with the drug toxicity, the infections, the complications, the hospital and doctor visits.... and I want to try another path.

Are you on medications?

1 like
Reply
CagneysMum
CagneysMum
in reply to Hidden

Yes - I inject 20mg methotrexate weekly, take 1 hydroxychloroquin tablet a day and 1 folic acid a week. Also take cucurim, vitamin D, omega 3, Biotin and kefir. I’ve cut out dairy, gluten and processed foods but hard to know which of this all is helping most. I was in a really bad way a year ago (in a wheelchair) and now leading a normal life and working full time ...with hardly any pain. Last year I was happy to welcome any drugs that might help but my longer term aim is to reduced to as few as possible. Must confess to bring a bit of a sugar addict though 🙁

1 like
Reply
Hidden
Hidden
in reply to CagneysMum

Sounds like you're in a good place. I loved sugar too, total addict. Used to bake a lot. My rheumatologist prescribed hydroxychloroquin but I'm reluctant for now. I guess the pain levels will dictate. How long has your medicine been working for? Do you have side effects? Did it kick in right away? Do you still get stiffness in your hands?

Reply
CagneysMum
CagneysMum
in reply to Hidden

Methotrexate didn’t help much on its own but was really effective when they added in the hydroxychloroquin. Originally 2 tablets a day but now reduced to one. I did start to lose a lot of hair with the methotrexate so started taking biotin as my rheumatologist suggested - and it stopped the hair loss completely after about 2 months. I don’t get stiffness often but my shoulders were really locked up and painful - everything else was ok. So I had steroid shots in both shoulders a month ago and they are great now. GP thinks is may be osteoarthritis that has started sine the RA kicked in 18 months ago. 12 months ago I was scared silly about what my life would be like, now I’m back at the gym and booking lots of holidays with my husband. Lost 35lbs over a year but still need to lose more.

1 like
Reply
Hidden
Hidden
in reply to CagneysMum

Yikes! it only took 18 months to go after your bones? I'm in the US and I'm pretty sure my Rheumatologist didn't prescribe methotrexate because I don't have insurance. Methotrexate needs a lot of monitoring. She said the Hydroxychoroquin needs less monitoring. Thanks for answering my questions. It's good to know that there is hope when it gets bad.

Reply
CagneysMum
CagneysMum
in reply to Hidden

Sorry I’m in the UK so treatment is free and they monitor my bloods monthly and review me at clinic every two months. I appreciate its very different in the states.

1 like
Reply
Hidden
Hidden
in reply to CagneysMum

I should also add that the diet lowered my CRP to normal. My ESR is normal as well, though I don't have any number to compare it to because my doctor didn't give me an ESR test early on.

Reply
Ann2019
Ann2019
in reply to Hidden

I don’t use them. I was diagnosed with seropositive ra 15 months ago. I’ve been to the rheumy 3 times now, and she’s never prescribed anything yet. If she did, I don’t think I’d take them because of their toxicity and what I’ve seen happen to a few people I know. I do a variety of things to make it manageable for me and it’s worked out fine so far.

Reply
Hidden
Hidden
in reply to Ann2019

Do you use any ibuprofen? What things are you doing? I find reflexology works great. I'm going to try acupuncture soon. My mother, who had rheumatoid, died of complications of the disease and the medicines, methotrexate/prednisone. It really damaged her bones, her ogans. From her diagnosis to 10 years later, she was a mess - infections, cracked ribs, hook-shaped back, very disfigured hands, feet, hip replaced... That is the reason I'm avoiding meds too.

Reply
Ann2019
Ann2019
in reply to Hidden

I do take ibuprofen and some supplements; vitamin d, multi vitamin, magnesium, turmeric, msm, glucosamine, chondroitin, hyaluronic acid, and boswellia. I also avoid gluten, dairy and sugar, but I sometimes slip. I don’t really trust the meds that are used, so if I’m ever prescribed them, I’ll have to weigh quality of life versus the health risks. I also have found it helps to take an epsom salt bath every week. I try to go to the gym twice a week, and I walk and ride my bike when I can. I just signed up at planet fitness, and they have these hydrotherapy lounge chairs, which are wonderful for anyone with arthritis issues or osteoarthritis.

Reply
Hidden
Hidden
in reply to Ann2019

Exercise is so important. I don't think a lot of people with rheumatoid know that. I've read up on the meds - pros and cons. I listen to a few rheumatology podcasts by doctors and they just guess at what's going to work. Each person's disease is different. They all seem to subscribe to the theory now - treat early and aggressively. That doesn't sit well with me. There aren't a lot of stats on how many people go into remission on DMARDs but it's not very high. Preventing inflammation and flareups seem to be key. So far, I've been good with ibuprofen, diet, exercise, but they say it's a progressive disease, so I imagine it will progress - unless I somehow beat the odds. I just don't know how or when it will progress and that's frustrating.

1 like
Reply
Ann2019
Ann2019
in reply to Hidden

That’s one of the frustrating things about this disease for me and I know others, is that it definitely contributes to fatigue around certain joints, and achiness and some swelling, and that sadly interferes with your activity level, making it emotionally difficult to deal with, in my mind. I used to exercise a good deal more before my diagnosis. I try and do some kind of exercise 2-3 times a week, but it’s diminished from before. I suppose something’s better than nothing, so you have to look at the positive. At least I have t got any worse since my diagnosis 15 months ago, and I’m not on any ruff meds.

1 like
Reply
Hidden
Hidden
in reply to Ann2019

it's good to know that someone can make it 15 months without meds. you must be doing something right. I take just about all of the same supplements except for the hyaluronic acid. I'll have to look that up

Reply
daisychains58
daisychains58
in reply to Hidden

I don’t. I was diagnosed with zero negative RA July 18 and put on high dose of steroids, 50mmg pred and mtx 20mg. I was in most horrific condition and in hospital for 3 weeks, my knees looked like balloons and the pain was indescribable, like my knees were being eaten away from the inside. Plus my elbows and wrist was affected as well. I stayed on mtx for 2 mths, it made me sick and then Arava for another 2 months, made me sick, neither gave me any relief, then had bi lateral knee replacements in November. I also did 2 months of clean eating and supplements when first diagnosed but it made no difference.

I didn’t start back on dmards after surgery as I didn’t believe I had RA even though I had all of the symptoms and bloods to confirm.

Fast forward 12 months I’m down to 3 mg prednisone and will continue to drop half mg every 3 weeks plus strong pain killers and the odd naproxen. I had an ankle replacement 4 months ago and am doing physio to get walking again as I couldn’t walk for over 12 months without crutches. The ankle was unrelated to the RA, i had OA for ages and my knees were OA as well.

Conclusion, I had some massive inflammatory storm raging throughout my body plus heaps of stress. My elbows and wrist are ok, and I have no deformity in hands feet etc happening. My last blood tests have all returned to normal except. CRP was 17, was 150 at its worse. Other bloods went out of whack from the dmards but are now normal finally.

I still get really tired it I overdo it and stress I believe plays a huge role in flares. I don’t have the brain fog like I did but get it if I don’t sleep well or get run down. I’m far from great but am Improving slowly with physio, my ankle is still healing so I can’t weight bear completely on it but compared to a year ago, I’m fantastic.

Who knows, we are all different. I’m just happy I am on the road to walking again, last year was the worst of my life and I’ve had some bad ones. I’m 61. Also I was smoking when I was clean eating, I know very ridiculous, but have since quit. I believe the toxins in the smokes are really bad for whatever condition I have. I take some basic supplements, drink lots of water, kombucha, sauerkraut and eat relatively well. I don’t drink alcohol very much either. I also think healing the gut can help with a whole heap of health conditions. Sorry for the long reply but it is a very complex disease which seems to have a myriad of names.

All the best, we just have to hang in there and try and stay positive.

Reply
Hidden
Hidden
in reply to daisychains58

Good for you for quitting smoking! That's big all by itself. Sounds like you are improving. Stress is a big factor. For me, I know that's my trigger. That's the hardest thing to get under control. That and not getting enough sleep is also an inflammation trigger. I also believe that healing the gut can help if not put this nasty stuff into remission. All the best to you too! Continue to get better!

1 like
Reply
ChaiNocchi

Same here, aggressive seropositive, diagnosed 6 months ago in February, immediately began taking prednisone, and began taking 15 mg per week of oral methotrexate in April, increased to 20 mg per week in May. I am now tapering off the prednisone, at 4 mg per day, and I feel wonderful. I work full time, go to the gym, and volunteer on weekends. Like you, I was afraid because I don’t like to take any medication - but I also don’t want irreversible joint damage!!! So for me, medication is the lesser of two evils. I stick to a mostly anti-inflammatory diet and I feel great, like I don’t even have rheumatoid arthritis.

3 likes
Reply
Cwendyn

It’s horrid isn’t it. You’re wondering how this happened and will you be like this forever. 3 years ago, I was where you are. From nothing to being immobile in five weeks. Couldn’t dress, wash my hair, walk up one step. Nothing. It was frightening. Today, I’m back running a very busy business, have a great social life. Sometimes a bit crampy, but that is all. It does get better and you will be fine - most people are.

It took a while, I’m not going to lie to you. It was very much trial and error. Now a combo of mtx and benepali biologic have got me to this stage for the last year. I have no side effects. Tomorrow and Thursday I have 7am meetings and busy days with two new staff members and huge expansion plans. I was out with friends yesterday and last month on a cruise. Three weeks, I’ll be in Crete. I’m saying this, because you’ll be thinking that this is impossible and I’m here to say, it’s definitely not. Three years ago, I thought it would be.

Listen to your rheumy. They have years of knowledge and experience behind them. You will hear scaremongering stories. As with any meds, there are always risks. Look at the insert for aspirin. With regular blood tests, anomalies will he picked up early. Earlier than a doc would ever pick anything up as a general rule. Without meds, the consequences could be far worse. Not just with bone erosion, but heart, lung, vascular issues.

Live your life. You deserve happiness and you will be fine. It may involve a little patience though 💛💚🧡

5 likes
Reply
daisychains58

What an inspirational reply, thankyou. So many positives and Your living proof this disease can be controlled leading to a normal active life. Thankyou for sharing.

1 like
Reply
Joyce52

Hi sorry to hear you’ve been so unwell.

Like you I was scared to start methotrexate . I got very ill as I decided If I was going to take it.

I went each week to my drs surgery for the injection because I’d make excuses not to take it left to my own devices!!!

I kept my appointments began to feel the benefits. I went from being stuck in a chair / painful to drive , to be able to move around more .

I got used to the injection -happy to do myself now.

I think the side effects and health concerns are comparable with other treatments. At least it’s a very tried and tested treatment with regular blood tests to check for problems.

It took a few changes of dose to be able to get the benefit and the side effects balanced. I’m on a low amount which just makes me slightly sick /tired for a few days . I think that’s reasonable to be able to be able to have a few better quality days.

I hope that helps you decide I know how you’re feeling .

1 like
Reply
mickam

I sympathise but I would say that there is no point being worried about Methotrexate particularly as you have yet to try it. Some people have side affects, I did with the tablets, but many other people take it with no problems at all. i know that a recent diagnosis can be extremely daunting but try not to worry about things which have not yet happened, and may not, there will be enough genuine reasons for concern in the future. If a drug doesn't agree with you tell your consultant. After all you cannot be forced to take it.

Reply
mikefox

You might not suffer any side effects of they might be mild or manageable. Steroids are no good long term because they don't stop your immune system destroying your joints and other things like your heart valves. Steroids only reduce inflammation and pain. Steroids mask the damage that the immune system is doing. Methotrexate suppresses your immune system so it lessens the damage to your joints. I have a very aggressive form of ra and methotrexate didn't work. Was then put on sulfursalazine and hydroxychloroquin which also didn't work. I was eventually put on biologics which are effective. It can be a long road but eventually they will find a drug that helps. Biologics are very effective but cost a lot, therefore nhs tries cheaper drugs on us first. That's fair enough, but it might mean several months of trying drugs and continued pain, maybe even worsening pain before they sort you out.

Mike

4 likes
Reply
Karalyn53

I’ve been taking methotrexate tablets for nearly 3 years now when I was first diagnosed with RA. I was like you, very wary about taking them having read all the side effects that could happen but I am very lucky to say I have had no side effects and in no pain now at all. I do feel a bit uncomfortable the day I’m due to take my tablets but as soon as I take them I’m good again. Hope you’re one of the lucky ones too.

1 like
Reply
Troygirl

I have been on steroids (prednisone for 9 long months) waiting for "biologocals" to work. Still NOT working!!!

All I can say is be real careful with the steroids. I now have developed Cushingoid and do not even look like myself anymore!!

What other choice do I have...be bed ridden or take the dreaded prednisone and be able to go to work?

My dr hands out prednisone like candy, but he will NEVER hand out a pain pill that may have stopped me from developing steroid toxicity!

2 likes
Reply
daisychains58

Sorry your doctor doesn’t consider pain relief other than steroids. It’s a catch 22, none of them are good for you but living in chronic is no fun either. I’ve been on steroids for 12 months and am slowly weening, hopefully off them altogether soon. 3mg more to go.

What is steroid toxicity? I’ve not heard of it.

Reply
Troygirl

Cushingoid!

Reply
Troygirl

I cannot wait to get to 3mg. Congratulations!

Reply
Lina282

Hi, I am on Methotrexate injection as well and I was so scared to start with it after I read a lot about side effects.

It helps a lot so it's better with it than without it for me. I started with the tablets but had nausea and bed stomach then they offered the injection format. Helps a lot with joint pain and swelling.

Good luck and hope you can have some relief from the medication.

1 like
Reply
Nanna71

I am less than a year diagnosed with RA and have been on MTX tablets, now up to 25 mgs, plus sulfasalazine 2 gms, and prednisone - now down to 15 mgs daily and trying to taper right down but having trouble because apparently have another disease PMR. All this to say I was quite nervous about starting the MTX having read all the bad news online but never got anything re: side effects that amounted to anything worth being upset about. A couple of mouth sores early on, some hair loss which has stopped and now nothing that I know of. The prednisone, however is giving me grief from thin skin, easy bruising, and long time healing for minor scratches.

This is nothing compared to the pain I was in with the RA. I would put up with worse to get rid of that crying like a baby just knowing how much it was going to hurt getting out of bed. Really. I am 72 years old and never took anything including supplements before this. Hope I am encouraging for you.

3 likes
Reply
turtlemom2
turtlemom2
in reply to Nanna71

The prednisone is the one medication you need to be the most worried about as it has side effects that are down right upsetting. It can even affect your mental state months afterward. Prednisone is meant to be a short term medication.

Reply
Nanna71
Nanna71
in reply to turtlemom2

Yes, it can cause much. However it is not doing me too much harm. Pred. is the only medication for PMR so likely why I am having difficulty coming down. But, so far so good - now down to 14 mgs. per day. Started at 50 mgs October 2018. Looking for trouble when my adrenals need to kick in - about 7 to 10. Anyway, prednisone is, as I said, the only medication for PMR but you're right about it being for short term with my RA. That's what my doctor says it is too. I had not planned on getting PMR at that time. The good news is, PMR is self-limiting while RA is a life sentence.

Reply
turtlemom2

I am so so sorry you were diagnosed with this horrid RA. It took me a while to get there. I too was so very scared to take MTX and I tried it for three months then had to switch to Leflunomide which to me has been a life saver. So, I guess my point is if one drug doesn't work for you then try another. I tried several before I found this one that really works with almost no side effects. Don't be scared. Attack the disease back! This disease can take your life if you let it. So don't. The drugs are frightening but when they work they give you your life back.

Reply

You may also like...