Newly diagnosed

Been to see the rheumatology nurse today and given a prescription for methotrexate and folic acid. Havent taken any yet, going on holiday on Sunday for 3 weeks. Blood test and appointment booked for when I get back. Im worried about how this all will affect my work (I work in a supermarket) I was diagnosed with PMR last September , do I still have this? or was it the start of RA? I am so confused about what is actually wrong with me. I rattle with all the tablets I have atrial fibrillation as well (very recently discovered and still under investigation). Seems like I have everything wrong with me all at the same time :(

24 Replies

  • so sorry you have rd I was asked to go on methotrexate but need to look into this chemo drug it has a lot of bad side affects I am a reluctant drug taker hope you find the combination of drugs that suits you

  • Hiya & welcome. Not really sure where to start here. My thinking is that if you didn't present much swelling maybe PMR was a misdiagnosis as this can, unless a Rheumatoid Factor test was carried out when you first saw your GP, present in a similar way to RD in some people with little or no visible swelling. My GP suspected RD as soon as she examined my very sore swollen feet & the RF test confirmed her suspicions & xrays & further tests were performed which gave a definitive diagnosis, but if you didn't have much swelling, usually in hands or feet, it is possible you had RD from your first visit. I would have thought though if you do have visible swelling & pain an NSAID would have be prescribed too. I do hope you're RD becomes well controlled with MTX as it is generally the first treatment given as can have very good results. It isn't without side effects in some, me included but I've done really well on it in the past 6 years.

    Regarding the MTX & folic acid, were you prescribed both to start taking immediately & you have decided not to take it until you return from your holidays or did your Rheumy nurse suggest that's what you do? I only ask as I think the blood test is probably your monthly drug monitoring test & the bloods are take as an indication how your are reacting to the meds. Sorry for the questions but without answers not sure & am equally confused. You'll get used to asking questions of the people treating you in time as without knowing you'll be in the dark & it's necessary to know to be able to recognise any changes in yourself.

    And don't worry about rattling, we all do, it's necessary to keep us somewhere close to normal!!

  • I didn't start taking the MTX as soon as I was given it but did start the Folic Acid to make sure that it was well into my system so once I started MTX the side effects weren't too bad. Clemmie

  • I was told I could start taking it straight away, go on hol and enjoy a drink or two, and then have the blood test when I get back. When I first went to the dr I had weakness in the arms, shoulders, hips. I couldnt even lift a kettle of water to make a drink. I had no swelling in hands feet and a little in hips as I had had a hip replacement about 12 weeks previous. The consultant put me on steroids (15mg) and within a week I was much better, that was reduced down slowly until I was taking 7 mg, then my other hip was replaced and around 9 weeks later I was presenting symptoms of swelling in feet, painful feet and they thought it was gout :( it carried on and when I saw the Rheum Consultant a few weeks ago he upped the steroids back to 15 mg but it didnt improve the feet at all and then it started in my hands and wrists (fingers more than hands). so another blood test showed raised RA factors (counters, whatever the term is) so he has put me on methotrexate. The Rheu nurse seems surprised that paracetamol doesnt help with the pain :( first thing in the morning I can hardly move because of pain in feet and hands.. and sometimes left shoulder/neck. My feet are so swollen that most days I cant get my shoes on and they are velcro adjustable.. it goes down and gets easier as the day goes on.

    I have taken the folic acid tablet tonight and intend to take the other stuff tomorrow.. I just hope it works and I can have a decent holiday, last years was ruined with the PMR :( By the way I am still taking the prednisolene prescribed for the PMR.. at 5mg per day :)

  • Just seen Beaches reply & she's given good advice about the MTX taking a little while to work. It could be up to 12 weeks before you notice a difference but it will be working on the RD even so. It's possible other meds will be added when your Rheumy sees from your blood test how you're reacting to the MTX but if you feel you need extra pain relief or inflammatory meds have a word with your Rheumy nurse before you go on holiday to see if they can prescribe something to help you pro tem. Thinking particularly of your inflammation as the likelihood is if your feet are swollen now they'll swell more in the heat if you're going somewhere where it's likely to be hot.

    Has your Rheumy questioned the problems with your neck? This is a problematic area for me too & I was diagnosed cervical spondylosis & wondering if that could be the cause, although it could be part of your PMR if he considers the two are interlinked if indeed he still thinks it's part of the whole as you're questioning if you still have it.

    I think the best thing would be to ask your Rheumy at your next appointment to explain in simple terms (by that I mean no medical jargon you won't understand) what is going on in your body & what he thinks is the best plan for you by way of controlling you. Reading between the lines it doesn't sound as though you've been given much information as to how he's going to treat you & it's hard in the beginning understanding all that's going on isn't it but it does help to know. It will help you cope better if he takes time to explain to you as not understanding what's going on can be stressful & that won't help you. I had a fab Consultant when I was first diagnosed who told me everything in simple words & drew diagrams & I went away feeling much less scared & unsure about the future.

    Enjoy your holiday & hope you're able to get something for your pain & inflammation before you go.

  • Hi and welcome from me too,

    Hope you find this site as useful as I have in trying to understand the condition and treatments. It's all very confusing at first isn't it? I got given very little info at my first appt, just here's your prescription and next appt ( or maybe I was in so much pain and so shocked I didn't hear what was said?)..... I did get a helpline number though for rheumy nurse and they have been great. Perhaps you could call them and have a chat about your diagnosis and treatment plan?

    Pmr is another auto immune condition as rheumatoid is and although it would be possible to have both, these conditions are closely related and often difficult to diagnose accurately in the early stages. Are you still on steroids for pmr? If not, I would suspect they now feel rd is your diagnosis.

    The most important thing now though is that you have the right treatment for you to help get things under control and prevent possible joint damage in the future.

    Try and relax and I hope you enjoy your hols x

  • Hi Lynn

    Sorry just seen your post at same time as mine. Sounds like they are still unsure if you maybe have pmr as well. Hopefully not and pred will just help you through this early part

    relieving some of your swelling and pain. Sorry to disappoint you but methotrexate builds up slowly in the blood, can take up to 12 weeks to work and I had to have other drugs added in to the mix as well. It's very frustrating as it can take some time to find the right combination of drugs for you. I am 6 months now since diagnosis and although much better than I was, still don't have this properly under control. I have had regular steroid jabs to help things along as well! X

  • What pain relief do others take... I have been taking paracetamol but it doesnt really help, as told codeine but that sends me to sleep and as I could sleep for England as it is... I dont want to take that if I can help it.

  • I have been taking etoricoxib (Arcoxia) & co-codamol for the last 2 years but have taken celecoxib (Celebrex), nabumetone (Relifex) & meloxicam (Movalis/Mobic). All except co-codamol are NSAIDS in one form or another.

  • Hi Lynn

    I too take Celebrex when I need it, it's an anti inflammatory prescribed by gp. You will also need stomach protector tablets with NSAIDs as they can be hard on the stomach. Gp will prescribe as well. Paracetamol works ok for me, but needs to be taken regularly, think it's every 4 hours but check on packet. Works best taken this way rather than waiting for pain to be bad. Your gp or rheumy nurse might also suggest other painkillers for you and it's probably best to check with them with your possible heart problem as well.

    I also used heat pads and ice in the early days, ice probably being better for swelling. Wrap a bag of frozen peas in a tea towel and leave on affected area for 10-15 mins.

    Try not to worry, you will get used to all this stuff and things do get a lot better once you are being treated and understand what is going on. Feeling tired/ exhausted is part and parcel of the early stages before your inflammation gets under control, that too should improve with time.

    There is a link on here for the NRAS website which has a great section for newly diagnosed people and there is also a helpline number there to discuss any concerns you have.

    Good luck and hope you manage to enjoy your hols x

  • well this post has given me more information thanks nomoreheels and beaches2 your input is very helpful there is so much to learn about rd and its treatments the hospital don't always have time to tell you what you need to know

  • Stop worrying from all the replies you aren't alone.

    You must take these tablets, if you aren't sure why or what they do make an appointment at the dr and ask him/her about your worries.

    Its your body you control it. Ask.

  • Co-morbidity is my least favourite word! . I was diagnosed with PMR a year ago. My knees, feet and hands were very swollen, but soft tissue in between was agony too . I had difficulty swallowing or moving at all, temp. about 101 . very frightening. At initial consultation, I had steroid injection of 160mg; that helped but only for about 2 weeks. By then, blood tests showed sky high markers. Anti CCP test is RA specific; normal range 0-5. Mine was by then 240! So I asked consultant if this meant I had RA and not PMR, to which he replied that it was Polymyalgia-onset RA. Double whammy (his term). After two more systemic steroid injections, I was put on MTX and Folic acid ( other stuff since added ). I am also on steroid tablets. They alleviate PMR pain, but disturb my emotions. I was at 40mg, now down to 15. Initially I came down too quickly, but now tapering by 1mg pm. Below 10 mg, I'll go more slowly but PMR might keep me at 15mg for a while. Codeine 30mgs 4 times a day and Paracetamol. I can't tolerate NSAIDS.

    I read what Beaches2 said, but I didn't think PMR was an auto-immune disease. I must check that .

    I hope this makes you feel less alone . I lost out on my holiday last year. Booked for Canada but no chance to take out insurance before the beast struck costing me £900. Ouch! I do hope you are able to enjoy yours. You deserve it. Take care.

  • Morning Jora. PMR it seems is a bit on an anomaly. I admit I did question it too as I understood it wasn't an autoimmune disease & what I found is that views within the med profession differ as to whether it is an autoimmune disease or "is an inflammatory condition of unknown cause" as NICE states. It does appear that this is being questioned as studies have found the incidence of antibodies in some cases. Generally the latest consensus is that is of unknown etiology & generally of higher incidence in the elderly though this doesn't seem to have proved conclusively so maybe more investigations will be done in the future to determine conclusively. I found this link interesting reading

  • Good Morning, nomoreheels. Many thanks. That's very interesting, or it would be if I could get my head around the academic content. I'll try again later when I'm not so brain foggy. As I am 70 on 14 July ( my personal Bastille!) I fear I do qualify as elderly. Conversely, I was pleased (only for myself) when the consultant told me that onset of RA normally occurs earlier. Good that my vanity hasn't deserted me, I suppose!

    You are such a tremendously generous contributor to this forum. Thank you.

  • Kind of you to say but that's what great about this type of community, it raises issues & related diseases most of us wouldn't even know about or question & knowledge is power, either that or I'm just plain inquisitive! Only recently I've benefited as was experiencing some different aches & pains I just related them to my RD & someone put a name to what it possibly is so I'm now "armed" & added it to my ever increasing list for my next Rheumy appointment. Sorry, the link is from BMJ, a medicals' professional publication & therefore not easy reading for us mortals but if you have a less foggy mo it's worth the read. I get foggy days too, in fact had an aberration this morning & I've totally lost a day somehow so took my folic acid & I'll be a day out on injecting my MTX now!

    No more thinking yourself as elderly me dear, you're as old as you maybe not good wording, I feel at least 100 some days, a teen in my head but actually my birth certificate says 53 - how did that happen?!! By the way, we're nearly twins as my birthday's the day before you lol! ;)

  • Well, I have managed to read it now and yes, it is interesting. Many thanks. Mind you, whether or not I remember it by tomorrow is another matter!

    I could try blaming my diminishing memory on RA, and/or the medication, but in truth I know it's also age-related. Many of my peers are no better than me. I went to a drama festival last Sunday. 4 short plays in one afternoon . By the time we had got to No.4, I had a devil of a job remembering what the first one was about!

    Health at Home rang today. My first Embrel is delivered next week, then I wait for the nurse. I wonder if it will turn out to be my 70th birthday present.

    Night night.

  • Hello

    Welcome to this site all are helpful here.

    Start taking the Folic Acid first, that will assist your body when taking MTX,

    Personally I feel that the RA Nurse would have waited with the MTX until you get back from holiday, although I would bow to their decision.

    Enjoy your holiday


  • Hello

    Welcome to this site all are helpful here.

    Start taking the Folic Acid first, that will assist your body when taking MTX,

    Personally I feel that the RA Nurse would have waited with the MTX until you get back from holiday, although I would bow to their decision.

    Enjoy your holiday


  • Thank you so much for all your replies. I am speaking with my GP later today and am going to ask for some co-codamol 15mg tablet to take on hol with me as 30mg sends me to sleep... This morning my fingers are pork sausages and I cant bend them, my feet are really objecting to being stood on... I am shuffling around like someone 190 yrs old... when I am only 54 :( When I had my hips replaced I was hoping I could take the dogs for a walk and get back some normality but no chance of that anytime soon :( The Rheumy nurse said that the trauma of the surgery could have triggered the RA. She also suggested that I take the methotrexate after evening meal in case it makes me feel sick, if it doesnt make me ill can I swap and take it in the morning with the rest of my meds then I am less likely to forget.?? Apart from pain relief I take all meds once a day in the morning.

  • Feel for your Lynn, especially with your feet (I waddled more than shuffled!). It will get better when the meds start working, it's just being at the start of treatment you're struggling as we all have. I had a break from all my meds when waiting for my Rheumy appointment to reinstate my meds when we returned to the UK & I was as you describe in that 3 months so that proved to me just how well I'm controlled when on the meds that suit me, so don't worry. Be prepared though, unless you're fortunate you may have to try few different meds until the mix that controls you well works for you but that's the nature of RD & none of us have the same reaction drugs, would that we did we'd all be very happy bunnies lol!

    When I was on MTX tablets (I inject now) I took them over the course of a day with breakfast, lunch & dinner & found that helped somewhat & lessened the side effects if the way your Rheumy nurse's suggestion doesn't work for you. I found taking them all at once the side effects were worse but of course you'll only see what suits you best by trying, as I said we all react differently. Just one little extra thing for the future, you say you take all your meds in the morning. I have one NSAID that's my Consultant advised to take in the evening as it reacts with others I take in the morning so pay specific attention to any meds your Rheumy advises to take separately as some aren't as efficient when taken together & may also also have an effect on your tum, even if a stomach protector is prescribed. ;)

  • Potentially, it can affect your work by dealing very effectively with the RA and therefore reducing pain and disability - so a big positive, if the treatment works well. You may be wise holding off starting the MTX until after your holiday though, if your nurse agrees, as it can take a few weeks to get used to it and get over initial side effects.

    PMR appears to be a very overused diagnosis by GPs - it is a very specific disorder, with fairly strict diagnostic criteria (including an extremely high ESR) and very rare in people under the age of 50. Chances are if you are now being treated for RA, then it really was RA all the time. Sorry about all that is going on, but at least you seem to be being treated properly now.

  • No one has said anything about meds not "getting on together" and taking at different times. I am on 2 heart tablets and 1 blood thinner, water tablet, steroid and high blood pressure tablet, all of these are 1 tablet per day. I take paracetamol for pain, 2 x 4 times per day, and now the folic acid once per week and the mxt 6 tablets per week (15mg) I took the mxt tonight after tea and so far havent had any side effects (fingers crossed)

    Earthwitch my GP hasnt diagnosed anything so far, I was referred to a rheumatology consultant and he made the diagnosis of PMR and now RA. I was treated for gout at one bit but I dont believe it was gout as I didnt have any of the common symptoms, just pain in the one foot.

  • It's just a thought but if your meds have been prescribed by different health professionals at different times it might be worth having a prescription review if your GP Practice offer that service, unless that was done by your Rheumy. I do know having researched for my f-i-l when he experienced problems that warfarin can have interactions with a number of drugs & had to be prescribed a different anticoagulant. I have a reliable link if you wish or need to learn more for when or if you're prescribed other meds for your RD treatment, I think it may be of interest.

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