Frustrated Newbie!!

Hi all, I was diagnosed with RA 2 weeks ago after a very rapid onset of symptoms starting in January. I'm currently taking diclofenac to help with the inflammation ahead of seeing my nurse on the 17th May to start Methotrexate. The consultant has offered and written me up for steroids in the interim should I feel I want them, but I have been very reluctant to take steroids as I am concerned about the weight gain - I am currently at weight watchers, trying to lose 2 stone to take the pressure off my knee joints!

Anyway! - As each day passes it is becoming more difficult to manage my symptoms, particularly in my hands and feet. Yesterday for the first time I had to go back and get my car to go out, as walking was soooooo painful, I was totally gutted! But the worst thing I am finding is the difficulty in using my hands. My wrists and thumbs on both hands and index finger on right hand and middle finger on left hand have all but given up, it is so painful to try and do anything! I am so frustrated. I am an active 47 year old who is looking for some to tips to help with the pain! Was really concerned and worried about taking the Methotrexate, but now I'm feeling - "bring it on, baby!!!"

Any suggestions would be greatly appreciated!

32 Replies

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  • There are so many posts like this as bad news spreads like wildfire, yes you may be unlucky and get side effects but the other choice is the pain your in now. I've had steroid injections with no weight gain and they do work so worth considering. As for the MTX it really is about probability like 10% chance of side effects means 90% chance you won't ! So try it with a glass of water perhaps at night and see what happens it won't kill you but may give you some side effects if so contact the nurse and go from there.But do stop reading all the bad stuff I take Leflunomide it has same possible side effects but for me is great and put the RA in remission. So the benefit far outweighed the risks and given odds like that on a horse race I'd be willing to put a £10 on to win. Hope that's made you laugh and good luck.

  • Thank you for responding!

    Have been very reluctant to take steroids as I've watched my dad and brother really balloon on them; they have Crohns, and I'm not wanting to carry additional weight if I can help it as my knees are bad. But I think I will enquire about the injections! Do they inject where it's affected and do they last long? Thanks in advance ;-)

  • In the bum and work all over. Side effect of Leflunomide is weight loss although no one knows why! I think feeling better means able to get about more and do excercise !!

    The jabs do not hurt and work quickly for about 3 months.

  • I think it's more like 70% of people who can 'tolerate' methotrexate.

  • And it works for around 60%.

  • 60% have side effects with mtx. I don't know why anyone would benefit from receiving a wrong impression of the side effects of a med. To be able to suffer through the often hard intial period before the med starts working ( hopefully) I think it is by far better to know the facts.

  • I would be interested to know peoples experience with mtx. I am so new to all this and when I started reading up on it was very reluctant to be prescribed it. However, my symptoms just seem to be getting worse on a daily basis and my bloods for ra and ccp are high and I have been diagnoised sero-positive (whatever that is!) I just want to get it into remission if that's possible. It has happened so very fast, I think I'm still in shock and possibly not accepting of it. Is it normal to be this rapid? Does anyone else have this experience? Sorry for all the questions! x

  • I think this forum has many with possitive experiences of meds. It usually unfortunately takes some time to find the right med and combination. I think every situation is different. If you have a sudden aggressive onset of the disease with clear diagnostic markers and if you are young and seropositive, you have a good chance that the meds will calm the situation. After the help of meds however if you are concerned of the side effects I do recommend that you look into dietary modifications. Elimination diets have helped many to control inflammation and decrease meds. Good luck. I know it is not esy in the beginning:(

  • Hi- sorry to hear that you have been diagnosed with RA; welcome to our forum ☺Your story sounds so like mine it's uncanny! Rest and gentle activities for now is all I can say and try to stay positive: there are all sorts of things which are out there to make your life easier. At the beginning, my choice, I had a steroid injection to ease the pain. Paracetamol helped too. Best wishes 😊

  • Hi Moomin8 and thanks for the welcome!

    What a shock it is to get this diagnosis - I just thought I was unfit!! Still not quite taking it in yet as it's all happening so fast! Thanks for the advice ;-)

  • Have you tried sleeping in wrist splints!?

    I find it helps a lot...but I know it doesn't work for every one.

    Even though I was diagnosed years ago my hands still play up......I ice them, then wrap them in a Hot pad & that helps too.

    You can find the the splints on Amazon.

    Mtx was great for me, so please keep an open mind. I took it after dinner...I thought if I was going to feel queasy I'd be asleep,& wouldn't know about it!! Worked for Me!

    ...

  • Hi again...I got my wrist splints from my hospital on my GP's request- I had gone to him with sore and swollen wrists and hands (due to early RA) which kept me awake at night.

  • Hi there,

    I have wrist splints and have been putting them on in the morning, will try and sleep with them tonight.

    I have been putting my hands in hottish water to ease them, but will try the ice first. Do you just put them in cold water first or something else?

    It's the day to day things that I'm really getting frustrated about; buttering bread for the kids packed lunches, picking up the kettle for my very much needed coffee etc!!

    Glad to hear the MTX is working for you - I am really keen to get started now with the hope that I can get back to some kind on normality - whatever that is in this crazy world!!!!

  • I bought a freezer pack that is bendy so you can wrap you hands in it......frozen peas will do to see if it helps.....then I wait about 20 minutes & wrap my hands in my little electric hot pad.

    Re lifting kettle...have a look on Coopers website at their little (2.5L) boiler...just press a button & boiling water instantly.

    I've decided life is too short to economise ......if I can buy something to ease pain I get it!

    Hope you get some relief soon!

    AC

  • Thanks for that! Am getting on amazon now for freezepack and heat pad, then onto coopers to look at kettles😊

  • Good on You!

    On Coopers it's called " instant water boiler" £39.99, but it's worth every penny..... tea,,coffee, cuppa soups, gravy,hot water bottle.....I couldn't live without mine...I fill it with a light plastic jug - in fact I have two.....extra one in bedroom formorning tea...l know that is excessive, but age has its privileges!

    I find if I make the effort to make my life easier I don't get so angry with this wretched disease.

    Wish you a pain free evening.

    AC

  • Thank so AC and you🤗

  • Only buy Wheaty bags for heat pack as the cheaper ones are nowhere near as good and frozen peas is a trick I use just remember to mark the bag so they don't get eaten.lol x

  • My heating pad is electric....about 24" square...like a mini electric blanket. I roll it up in a tube & secure it with an elastic band & put my hands in it.....or lie back on it, or drape it round my neck.

    About £25 from Argos.

    I find the wheat packs cool off so quickly I'm constantly in & out of the kitchen to re-heat them....but the herby ones do smell lovely!

  • I have some wheaty slippers, had them on my hands tonight, very nice!!! Really living it up ;-)

  • It would be worth having a chat with rheumy nurse (if you have a helpline) otherwise GP regarding steroids as there are a couple of options either tablets or injections. The tabs would probably only be offered as a short course and at a lower dose than your family had but I understand your apprehension. You also need to bear in mind that the MTX can take up to 12 weeks to work so there is no magic quick fix once you start them. Regular painkillers can help and it can be either hot or cold that helps. Cold would help my knees but warmth on my shoulders. Farm

  • Thanks for the advice 😉

  • Meeting a nurse for the first time on the 16th - it can't come soon enough!

  • Most rheumatology departments run a nurse helpline which you can ring for advice although with all the health cuts some hospital departments are not as good as others at answering. If you have a consultant letter it may show number and times of operation on there or maybe the hospital website rheumatology page. A fortnight may seem a short amount of time but when in pain it is a very long time. Farm

  • I had several courses of steroids when I was first diagnosed. They worked brilliantly although I prefer injections rather than tablets as they have less of an emotional effect on me. And I didn't gain any weight at all. I watched what I ate, but they didn't seem to affect my appetite. The advantage was since I was in less pain I was actually able to move around...so rather than sitting in a chair feeling miserable & eating biscuits I was able to do things!

  • You can always ask for methotrexate as an injection

    as the drug by passes your gut.So you should get less side effects.It comes in a pre loaded syringe and is really easy to do once you've been

  • Shown.

    Be careful using a cold compress,I've found them painful but heat is good and so are splints for night only. Your local hospital should help with them

  • Thank you to everyone who has responded to me! It has been really helpful and great to know I'm not on my own. I hope you all have a peaceful night xx

  • I use a little travel kettle to save stress on my hands, Argos has one for £8.79 at the moment argos.co.uk/search/travel-k...

  • Hi I am so sorry to hear about your diagnosis. I was diagnosed in March aged 50 and was a real shock and emotional rollercoaster. Lots of questions frustration and anger. I have been on steroids and have gained a bit of weight I am already 20lbs overweight but in order to function daily I thought a little extra weight gain will not kill me and will allow me to remain active. I have only just started on methotrexate which I don't really think is doing anything but making me terribly exhausted run down and am suffering with headaches ( like a constant hangover). I am far more concerned about the effects of MEtheotrxate which is a toxic drug than the steroids. I am looking at alternative ways to deal with the RA. I went to see a nutritionist who informed me that there is a strong link between wheat gluten Intolerance and RA. For the last 2 weeks I have had no wheat and gluten and I have had hardly any pains I start my day with organic celery cucumber and fresh ginger juice . My bloods have improved. I am going to continue and also starting acupuncture this week. I am adamant not to stay on these drugs (working in the pharmaceutical industry for the last 15 years ) has made me incredibly dubious about medication. I really hope you can get some pain relief and if you do decide to take steroids it won't have to be long term just to let you manage pain for now. I also have to have keyhole surgery for my knee which is on hold until I come off the steroids. Good luck try and remain positive it is hard but tell yourself everyday that you will get through this. Its only been a few weeks for me and I have found it really difficult.

  • Do have a look at Kai's posts😊Very thorough information on diets that have helped reduce inflammation. Good luck

  • Hi all quick update I have fallen off diet a bit but trying to get back on track. Had 3 sessions of acupuncture and although still feeling tired it is not as bad as before. Pains have almost gone except for minor pains in fingers and I haven't dropped anything for 1 week. I think the acupuncture has really helped and I was really dubious about its effects. Terrible headaches have subsided and pain and swelling in knee have gone down. I did not take my full dosage of methotrexate this week and will wait to see results of bloods. Fingers crossed.

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