Newly diagnosed with 2 questions :-)

Hiya. I'm a newly diagnosed 33 year old RA sufferer, I'm a Homemaker to 22m old twins and I was previously a qualified veterinary nurse for 8 years. My Mum suffered with severe RA for 30 years before her passing away in 2009. There is a string family history of RA in my family and I know I can ask my family. Ut would love to ask here too. I'm Due to start Methotrexate....it's been a long road here, started in February (more on that another time!). i know I'm probably in a state of denial but I have 2 questions. Firstly, the pain, it seems to "jump" from joint to joint. Sometimes my left wrist, then the next day my left knee, then perhaps a finger, then the wrist again...is this normal for RA? Or will it be normal for me? Is thee a Norma?! Secondly, how long to people find the depo-med injection lasts? I had it last Saturday to tide me over before the treatment started but just wondered as a guideline what people felt? It took a good couple of days for me to feel a difference, by Monday evening I was feeling better. Many thanks and Happy Christmas x

21 Replies

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  • Sounds like nerves and you need to educate yourself if you really want to feel better. . I've been threw it all.. you need rest and support from your family. . Dang you are strong but you still need help.. take deep breathing exercises. . Try yoga. It helped me but I had hip replacement. . Grrrr.. education u need to know your options

  • Hi and welcome to this great site

    I was diagnosed this time last year and this site has been my lifeline!

    I remember that back then the pain did jump from joint to joint.....felt like people must have thought I was mad cos one day complaining that my left knee was sore and the next it would be my right knee! I started mtx and then other drugs in the new year and since then not had that jumping around pain,more settled in a few troublesome joints.

    I was so scared when I was diagnosed, my only real knowledge of ra was from years ago when I was a student and worked for a short time with ra patients ( I am much older than you :-) ). I was so relieved when I discovered that the modern treatments are very different and the prognosis these days is worlds apart from what it was back then.

    Steroid injections seem to last a varying amount of time......my experience is from around 4 to 6 weeks. Have you got a rheumy helpline number to phone ? Mine have been great and I've phoned a few times if steroid has worn off and Ive had problems. Nras also have a helpline to phone if you want to discuss anything.

    I hope things go well for you and mtx works well.......there are loads of posts on here about starting mtx if you want to have a browse.

    Happy Christmas 2 you too.....22 mo twins will keep you busy :-) x

  • Thankyou for your response. it is certainly a very active site and I will have a browse. Yes, 22m old twins keeps me very busy! The pain certainly keeps me on my toes. I think the main problem is I'm used to seeing RA in my Mum who was wheelchair bound and reliant on 24hr care by the time she died, every joint was disfigured and sore so I have very little experience of how the disease starts etc. I will speak to my gp today to get back into the NHS route as I had to pay to see a consultant privately as my old GP didn't believe there was a problem despite severe pain in both ankles and the both wrists, the blood tests were all negative so she didn't see the need. Now I know about Sero-negative after a lovely chat with NRAS but the gp told me there wasn't the funding, so I went private and now I need to get back into the NHS system! I'll be fine once I speak to my GP and get the wheels turning...

  • With a strong family history you are going to be even more anxious than most people in the early stages of diagnosis. I can remember my grandmother being irritable - and you couldn't touch her because she was so painful, as well as being crippled up and unable to do things. But things are very different with today's treatments and normal(ish) life is what to aim for.

    It takes time to get sorted out but you should be aiming at minimal pain, good function and a working life.

    I think I have managed that most of the time (now retired) after nearly forty years of managing the condition. the pain and stiffness will come and go, but with aggressive treatment and exercise as soon as the pain and swelling have started subsiding, you can keep the function going. Yes, there may be long term damage and the illness progression varies from person to person.

    Don't take too much notice of what is said on here either! Although it's a great support, remember that most people only come on if they have problems. When they are coping OK they usually don't bother!

    Read all you can about modern treatments and recognise your anger about the unfairness of life.

  • That is a great response. Thankyou, what you said makes great sense. Knowledge is power

  • What a fantastic reply, I have been fighting this disease for 27 years and I couldn't have put it any better. Keep fighting xx

  • Hi jlmack,

    welcome to our site. Glad to hear that you had a nice chat with us. Did we send you the link to the guide to the interface between the NHS and private treatment? Here it is again just in case:

    bma.org.uk/search?query=Int...

    Regards

    Beverley (NRAS Helpline)

  • Thankyou Beverley, that is very helpful. I'm glad I've got the diagnosis but the hoops to try and get back in the NHS system! Wow. Even down to paperwork. It's crazy! Only self funded because my GP refused to refer me. Just having a bad day, but it was made a lot better by a rheumatology nurse who didn't know me from adam but could see I was stressed that I'd turned up for an X-ray (as told my the consultants PA) to be told they couldn't do it because Privat Patient was circled on the form not NHS! But she gave me splits for my wrists as she could se e they were sore, information leaflets, phone numbers and most importantly held my hand, offered reassurance and a hug. my GP only worked this morning so it looks like another week has gone by to start Methotrexate...roll of Monday for the GP chat to get a chest X-ray, MRI, blood tests and start meds, all over christmas! Sorry for the rant, but it's been a long day

  • That's OK jlmack. Sometimes that is all you need, a little rant to get things off your chest and you know that the people on here will be sympathetic and understand. And remember that you can call the helpline anytime that you need to.

  • Thank you Beverley for the link. I too can do with reading this through as I have limited private healthcare cover.

  • Glad it was a help to you too Mistydawn

  • As it happens the first person to calm my fears about methotrexate was our vet! She was such a well-informed and honest person that when she said 'no need to worry about that one' I cheered up immediately and indeed it was a good drug for me.

    Steroid injections can last for ages - I've had one that didn't seem to work at all, one that lasted about 6 weeks and one that seemed to make a big difference for some months! Hope you get much relief from yours. And yes, inflammatory arthritis can and does jump around. I tend to think that's a rather better situation than when it 'settles' in one joint and results in persistent swelling. Horrid, though.

    Denial seems to be par for the course too. Not surprising I guess. These diseases aren't necessarily as life changing as you might fear - many of us live life to the full, even when the disease has presented quite dramatically at first. Don't forget that most of us who contribute to forums such as this on a regular basis have stubborn disease, there must be many more out there whose disease is so well under control that it bothers them relatively infrequently.

  • Welcome jlmack. Firstly I hope you react as well to MTX as I do but should any issues arise please don't panic, many are easily sorted. It's a very good DMARD for many but, as with any of the effective meds, can have some side effects. Your Rheumy should go through it all with you hopefully & explain the ins & outs. My RD can get jumpy, with electric shock type pain, usually when I'm not particularly well controlled. I also have OA & although others with both can determine the different pains I for some reason have difficulty doing so but know it's not always symmetrical.

    What may help you is to try & put the image of your mum's experience of RD to one side. You do sound as though you recognise that the meds available to our Rheumy's nowadays in the main means that doesn't happen nowadays, not unless it's left untreated or particularly erosive. Questioning if there's a Norma I guess you're pretty clued up! Your veterinary experience will serve you well in understanding more than most newly diagnosed people I would have thought.

    All members here will have had experience of all things RD, the many differing ones & some with success but many struggling. It's natural if someone's not doing too well they want or need to reach out but there are those of us who generally do well on our mix & choose to be here to share experiences & offer support support where it's needed. I think it's a case of being aware & filtering what may apply to you & what you can gain from to learn more about your issues or help others with, that's the beauty of being on here for me. We have a lighter side too so it's by no means all doom & gloom but you'll see that, we're not always on a downer & often have off topic jollity!

    I hope your steroid holiday lasts a good while for you, at least until the MTX has reached it's potential & would guess that's what they've aimed for so should cover you until then, up to 12 weeks. Don't be backwards in coming forwards though & do ask your nurse or Rheumy about anything, there the ones who will have the best idea given they know dose, which particular steroid & reason for injecting.

    I hope all goes smoothly & you enjoy joining in here. I don't know if you've taken a look at the NRAS website yet but it is a wealth of all things related. You'll be the site here nras.org.uk if you wish to. You may have having rung the helpline but it can be helpful, I've found anyway. Try to grab a mo & have a wander through it, if that's possible with two littlies, have a cuppa & rest back.... stress & RD don't make good bedfellows. I guess you've a good support network? You'll probably find you need to rely on those closest more, particularly whilst you settle into your meds & a differing regime.

    Merry Christmas to you & your family. Your twins are a lovely age for this Christmas, they'll be just starting to realise, more than last year anyway I would think. :)

  • Wishing you good luck on your new meds. One day at a time. Above NMH's couldnt have said it better!

  • Wow. What a supportive group. Thankyou. Yes! I know about RA through mum, my old job and from fund raising for NRAS when mum was alive and since her death. I've met a few of the ladies, they came to mums funeral, which was lovely and thoughtful. I ran 10k for them in 2010. Support network may need beefing up! I have in laws but both sets are return and very busy with other grandchildren and their parents who work...my dad lives in Panama and my sister lives in the Midlands, so 3 hours away. My 2 go to nursery every Friday for a full day and have done for over a year to give me a break, so depending on how the medication goes we may need to enlist more help! Just money is tight and I need to speak to my Health Visitor. Oh well...it could be worse!

  • You have had some great replies and I hope you are feeling better about your condition now. This site is so informative and supportive.

    It must have been very hard for you looking after two little ones and coping with untreated RA at the same time but once the MTX has kicked in and suits you then you will feel like a new woman. Good luck.

  • Would you all recommend getting a prescription prepayment for the medication I'll be starting? I have low vitamin D and high blood pressure too...

  • Definitely! Unfortunately it won't be a "one pill will sort it out" situation so it works out far less expensive to do that. My rescript has grown to 3 pages long now, 11 meds so would otherwise work out very expensive for me! If you're already on meds then you'll be adding probably at least a couple onto your rescript, maybe more so certainly worth doing.

  • I have the same issues, it's all so confusing isn't it?

  • Aw bless you hun, I too lost my Mum to ra in 2008 and I find it so hard as I also want to ask her questions but of course we are unable to :( soooooooo sad................................................................................................. It took ages for me too to start treatment but the standard is methotrexate, hydroxychorolquine and sulphasazaine, these are called DMARDS - they try these first and then if you have no response after say 6 months (possibly of each) they will then maybe consider funding for anti tnf treatment. Sorry I have digressed .......

    I too wake up the same could be my left wrist with right ankle, left knee, fingers, left shoulder, left ankle etc it does certainly surprise me each morning and you just never know where it will be next.

    I have not had a steroid injection into a joint yet as mine like yours seems to be all over the place but at present I take 20mg prednisilone daily as I tried Humira and failed and now waiting for Rituximab to be funded, but I think its a personal thing and can be a good few weeks but what always troubles me is that of course if we have no pain we use the joint - so what happens after that? Probably moves to another area again.

    I wish you luck with continuing to battle this horrid illness and offer my love and sympathy coz its so hard not having our Mums to talk to. I am always here if you would like to talk.

    Love and light xx

    PS: you should give yourself a pat on the back for coping with twins and this illness, im sure your Mum would be very proud of you, well done xx

  • Hi I too was diagnosed at 33, 8 months after having my 4th child, it started in my knees, and one doctor told me it was due to being overweight after having my son... needless to say I haven't been back to her! 2 weeks after that appointment another doctor took bloods and gave full MOT and it came back with RA! I went on Hydroxychloroquine, the Methotrexate and various others before Leflunomide which I have now been on for 10 years (just in the process of Anti TNF which is really scary but the lovely people on here have convinced me to give it a go). Brilliant med, it transformed me from always being in pain and not being able to get down the stairs and walking properly, to being fully mobile for years, it still is working but flare ups are now becoming worse!

    I too lived in denial for years, only ever talking about it when I went to clinic. Yes the pain jumps around, you get used to it, this week it has gone through all of my fingers and seems to like my thumbs today, it will probably be in my jaw tomorrow, out of all the joints that's the worse for me, I don't like being hungry!

    I have been having up to 4 Steroid injections a year for the past 3 years, they tend to last for about 6-8 weeks but then gradually the pain returns, however this can be weather, coughs and colds or emotions dependent, bad news and colds always course flare ups.

    If you get to the stage of not coping call the RA helplines, you should have one from the RA nurses, but if you don't, call the hospital consultant booking line they will help direct you to the proper phone numbers, there are no bravery awards with RA.

    Try to keep mobile and work through it as much as you can, I know it's painful but it helps! Having 22 month old twins I'm sure you're always on the go!

    Good luck with the meds and hope they work well for you, if they don't there are plenty more to try and there will be one for you, don't feel guilty for telling the nurses if one doesn't suite you, like I used to do, they are there to help you!

    Alison

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