Sorry if this is rambling......My GP thinks I have RA, following blood tests. I was really shocked as I thought the discomfort in joints in my right hand was just something and nothing (my other half said I should see someone as I kept going on about it!). I had gone about other symptoms as well that I thought could be thyroid related as I am on levothyroxine for underactive thyroid. I knew auto immune problems can ' hunt in packs ' but did not see her thoughts on a diagnosis coming at all. She did say it's possible that it is not RA but unlikely, and a rheumatology appt would be made (23rd April).
So, straight onto NRAS for information, which has been great. Apart from trying to take on board the enormity of it all, can I ask what may seem stupid and / pathetic questions to you, but if it is RA, and medication is prescribed, can you start on injections and avoid tablets altogether? I cannot swallow tablets unless they are tiny (levothyroxine is ok), and have always managed to get things in liquid form or had something I could crush up. What would a rheumatologist's response to this be, do you think?
Can I also ask about nausea, as this seems to be a side effect of many of the drugs for some people. I really don't deal well with nausea etc. How do you cope with this day to day if it affects you?
Last question, do you think I need to take my other half with me for a first appt to help him understand as well?
I know these questions may sound daft, so apologies, but thank you for getting this far into my post!
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Pigletts
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Hi I hope really it's not RA but if it is tou will be well looked after by your rheumy team.
Yes you can get methotrexate the usual first drug in oral and injection firm. Chat to your prescriber.
For your first visit it's always good to take someone with you ! I also take a list of questions, as I forget when I only have a short time. I also took photos of any swollen or red joints and I started a " pain diary" to show when I had pain, classed it between 1 and 10, and time I had it to show the doc.
Thanks, it does sound as if rhuematology teams are supportive. I am not in pain as such, more discomfort I think, although it does vary from day to day, does this mean I could be in the early stages, if it is RA? I am assuming though that the more pain you are in, then the more severe it is, or can you have had it for a while with no pain?
Different people get different pain. I can be fine one minute and sore the next. Interestingly you mention bell ringing so I would tell the rheumy about that too as there are obviously tendons nerves and ligaments too that can cause pain. The classic signs of RA stiffness swelling soreness often have a feeling of flu or fatigue too . So good luck it may or may not be RA , theres a whole group if different disorders similar so see what the doc thinks. He may do scan and xrays and blood tests before giving it a " title!"
I must start compiling my very long list of questions or things to tell them, I will definitely tell them about the ringing as I dont want to do anything to make things worse. Good point about there possibly being other things going on, I will bear that in mind.
I do get tired and am often asleep in front of the telly way before 9pm, which drives my other half mad when we sit down to watch something together!!!
Not daft at all Pigletts! The trouble with meds is that they come with notes that tell you every side effect known to man will be yours if you open the packet! Like you I was very squeamish about nausea and swallowing things but the fact is that only methotrexate caused me nausea and that annoying rather than anything else and I learned a new skill, I can now swallow about 10 large pills in one go! ( it’s taken 10 years). I always start slowly and low with new meds but please be reassured that you will be ok with all this.... and hopefully you will feel better! xx
Hi Pigletts. On my first rheumy appointment, I told my doctor that I have a super-sensitive stomach so he put me on the Methotrexate injections. I have had a little bit of nausea which I didn't think was anything to do with the med but he thought it probably was and gave me a prescription for an anti-emetic. It passed on its own eventually - I didn't take the anti-emetic. Also, it's always worth having someone with you in case you forget something (as I do) so I ask my husband as he usually remembers. 😊
Thanks, if tablets are mentioned I think I will tell them that I can't swallow tablets, and I do have a bit of a sensitive stomach especially when stressed, and I think I will be stressed attending the appt and thinking of afterwards!
I will see if my husband can come with me, I think.
Thanks, great tip! I was thinking that the medication would have to be swallowed whole, but I would check, and have done over the years, always asking if anything is prescribed, can I have it in liquid form or crushable?
Don't crush them unless you have checked it's OK. I've a feeling I've seen advice against it somewhere. I'm sure you'd be fine with the tiny pills. Folic acid also comes in small pills.
I have been taking Methotrexate for 3 weeks now and other than a little fatigue on the day I take it I haven't really noticed any symptoms other than being able to get off Prednisone by the second week, which was great. Something you might want to do is take a Mucinex DM pill with the Methotrexate and then 12 hours later take another one. I started doing it by the second week and have felt no fatigue induced by the methotrexate since I started doing it.
I totally know how you feel since I've been told by my rheumatologist that it might or might not be RA and that I should just wait a little more to see how it develops (crossing fingers). Good luck, make a list of all the questions you have and always stay positive, I know it's hard but with early treatment and lifestyle changes I've heard we can expect to lead rather normal lives, which is already a blessing due to the severity of this condition.
Thank you, that's positive, although I know everyone is different with having side effects, or not. Do you have to be on several medications? I don't take anything for the pain / discomfort as it's not got to the point I need to, although if I had a job using my hands a lot I think things may be different.
I am a bellringer, however, and wondered if anyone else is or was a bellringer, as my right hand is sore after practise and ringing for services these days , I wondered if continuing with ringing is doing any actual damage to my joints, as I would give up if it helped them. Not sure if a rheumatologist can answer about ringing, unless they know about bellringing that is.....
I hoped the rheumatologist would tell me definitely yes or no RA, I didn't realise they can be unsure about diagnosis?
At the moment I'm only on Methotrexate since my symptoms have been mild and x-rays didn't show any damage but before starting the treatment I took Prednisone 5mg to clear up symptoms before the Methotrexate kicked in. Be careful with Prednisone and try not to take it for too long since it can have nasty effects long term. Sometimes I take Naproxen as a preventive measure but it really hasn't made a big difference...If your hands are sore I would definitely recommend looking for something that won't overuse your hands so much.
About the rheumatologist, I was told by 3 doctors that I didn't have it, to go home and enjoy life, since my symptoms weren't typical of RA (I had no fatigue or clear symmetrical joint pain). If you don't feel completely at ease with your first appointment please look for a second opinion and so on, until you feel that you've found the right answer that's gonna give you peace of mind.
If someone is not really in pain, would steroids be prescribed, or are they for inflammation rather than pain, so are always prescribed? I really don't want to have steroids, my dad was on a high dose for some time, because of Giant Cell Arteritis, and although he has recovered from that, the drugs he has to take because of having been on steroids for so long are many and varied.
Thanks for your advice about seeing the rheumatologist, my list of questions is getting ever longer, poor consultant!!!
Yes, I wouldn't recommend steroids if you can manage the pain and discomfort since it can also make you feel treatment is working when it's actually the steroid that's doing its job, something like that happened to me but I'm glad I'm off steroids, just waiting on Methotrexate to do its job.
it's worth it, it's really a pain knowing that you forgot to ask a question and that you'll have to wait a month to have it answered =/
Thanks, that's good to know you don't always get put on steroids as a matter of course. All the best with your medication kicking in!
I'm sure I will forget something, I always do when I see doctors, but it sounds from what people have said that other members of a rheumatology team may be able to help in between appts, which is good.
Yeah, you can always call your doctor even if you don't have an appointment, at least I've done that with mine. They usually won't ask you to come in just to answer a simple question.
Pigletts welcome to group always lots of info on here plus real people dealing with it. Consutlant will definitey listen so make sure they understand pill issue, I started on pills but went ot injection due to nausea.
Yes, some get nausea its hit or miss and don't forget the ones who work well on the meds might not be on here so you wont hear their stories.
Take your partner and write down daily or weekly what is going on as you will foregt something and it will be the thing that really bugs you!
My husband does the note taking so I don't have to talk and write and just the support him being there is huge.
Thank you for your welcome, great to hear consultants will listen about the tablet issue, I have had to tell doctors about it over the years as I don't want to waste medication that I know I won't be able to take.
I must admit, reading about RA and drugs etc has really come as a great shock to me, but it's great to find a supportive group here that have been there and done that!
Hiya Pigletts, welcome. Well, obviously I do hope that you aren't diagnosed but you're correct in thinking if you already have one autoimmune disease others can tag along unfortunately.
You're specifying methotrexate by asking if you can start on injections if diagnosed. Well, this will be something only your Rheumy can answer I'm afraid. Generally though they like us to try tablets first, unless there's good reason not to but it is only taken once a week. They are small tablets as well, that said they are also only 2.5mg so, say you started on a mid dose of 15mg, that would be 6 of the little things to get down. Now, when I started MTX my Consultant suggested I took them throughout the day with meals, so as I started on 15mg I took two tablets with breakfast, lunch & evening meal, that way I’d be less likely to have any side effects & he was correct. I did have slight hair thinning initially but he increased my folic acid from one to two per week & it soon stopped. They’re prescribed because MTX inhibits the metabolism of folate which limits cell division & can impede the production of red blood cells the so can cause nausea, hair loss, mouth ulcers, even anaemia, common symptoms of folate deficiency. I'm hoping I'm telling you this & you'll never need to know! Anyway, this is assuming if you are diagnosed you start on MTX, there are other DMARDs which as you’ve been reading the NRAS site you'll be aware of. I was diagnosed with both seropositive RD & secondary OA age 48 in 2008 & been on MTX 11 years, 10 of them by injection & I take 5mg folic acid 6 days, just not MTX day.
I hope this isn't info overload, but if you have any questions we'll be happy to help where we can. Use this time to write down symptoms & any questions you need answering, bullet point is best so as not to use up time your Rheumy needs for you. Oh & definitely take your other half with you, not only for him to better understand but it will help you recall what's said in the appointment if you are diagnosed. It's surprising how much information leaves your head the moment you leave the hospital! There's much to take in so it might help to take notes, or maybe your better half?
Thank you for all the information, I like to know what I may be up against, if a diagnosis is given. I had seen about the folic acid helping, although annoyingly I would have to ask them how small the tablets are! If tablets are really small, that may be ok for me, I realise how daft saying I can't swallow anything but tiny tablets, and would rather have injections, sounds!
Folic acid tablets are small, not much different to MTX tablets as I recall. Not at all, if you have problems swelling I understand. My mother in law always had to have hers crushed up, more so the worse she because health wise. The only trouble with some is losing the protective enteric coating that helps them to be easier on the tum. Injections are easy as the MTX is delivered by a pen device in the UK.
Great that they are small! That's what I understand about some tablets, that they have to get to your stomach whole. Injections sound like a good alternative, especially for the digestive system maybe.
Do not worry you will be well looked after take your other half with you or a good family friend for your Apt .also change your diet and Keep Active and speak to others with your same symptoms you will also be comforted and Prayer Changes Situations.Trust God to perform A Miracle for you .God is Faithful and A Miracle Worker .I wish you your Heart Desire and for Speedy Recovery.
Thank you, it's really annoying when you think you have done as much as you can over the years to be healthy, then you are told you may not be as well as you think you were! Being told I was hypothyroid was bad enough, now this!
You can get methotrexate in injection form - it’s my personal preference and avoids the potential gastro symptoms. I did pill as well (at first - though the injection is a bit stronger/goes straight into the blood) and never was sick to my stomach, but over time my mom (who has RA) did have stomach issues from the pills. She switched to the shot and was great. Bring your other half and a list of questions. Ask him to make sure you get them all answered and be a listener. I’ve learned that recently - you don’t get to be in front of the rheumatologist often and in the emotion of the moment, you can forget certain important questions.
Hi Pigletts. I've only been recently diagnosed myself (last September) and it came as a terrible shock as I've always been so fit. I went initially to see my GP for a swollen wrist and toe and an aching shoulder which just wouldn't go away. I had X-rays but nothing showed up. Like you I was then sent for a blood test and then an immediate referral to hospital, within 2 weeks. On my first appointment the Consultant saw my fingers and wrist were swollen and said he thought it was probably RA. I was sent for a chest X-ray, a general health check and further blood tests and was given a steroid injection. He put me on Hydroxychloroquine 400mg daily (2 pills) which are not sugar coated and quite big so hard to swallow. I was also given Vit D capsules. Quickly afterwards I received a letter from the hospital and given access to my hospital record via an on-line link (very useful) and I was given a few leaflets to read too. I have no side effects from Hydroxychloroquine except dry eyes initially; it is a strong drug which can cause damage to retinas so I was sent to see an ophthalmologist too (all o.k so far!). On my next appointment at the RA hospital clinic (2 months later) I was seen by a specialist nurse who did a thorough examination and asked me lots of questions as she felt the Hydroxychloroquine wasn't enough for me. I was put on Methotrexate after that as well (initially 4 pills, going up in stages to 6 pills which is what I take now). Methotrexate pills are tiny and you only take them on one day a week. Like some others I find Methotrexate knock me out and make me feel tired but only on the day I take them so I am o.k with that and arrange my life around it. I have had no other side effects but I have to take Folic Acid pills (also small) 5 days a week. Methotrexate can cause liver/kidney problems so I have to have blood tests every 2 weeks to see how I am tolerating it (again, all o.k so far). I have had a few ups and downs with flareups and adjustments to medication, but at the moment I feel the combined therapy is helping and since diagnosis my pain level has gone from 7/10 to 2/10 and swelling is much reduced. I feel very well looked after - I have 3 monthly appointments with the RA nurse and have seen the Consultant twice and have another review with him at end July. There is a lot to take in at first so taking someone with you to appointments is a good idea; you could also take a list of questions. I find this Forum very helpful and the National Rheumatoid Arthritis Society has a great website. Good luck with your journey.
Thank you for your reply and positive words about you rheumatologist and team. Great to hear you are doing better with their help and with medication.
I thought I was doing well for a 51 year old hypothyroid, quite fit, 2 Pilates sessions a week, bellringing, long walks with husband and dog ( although ironically we need to shorten these now as our dog has arthritis, he is getting on a bit), so I am really cross that my body may in fact be letting me down!!
Hi Pigletts , you have some fab replies here so i will just add a small thing. I was, and still am, on levothyroxine for underactive thyroid after having a goiter removed. This was for 3 years before RD diagnosis. The symptoms you describe with joint pain and tiredness can come with hypothyroidism as you probs know. Specially if you need your levo dose upping.
Having said that its so very good that your gp is on the ball and is sending you for tests. I think I prob ignored my mild (at the time) symptoms of RA , putting them down to menopause, thyroid issues etc and it wasn't until I woke up not able to function due to pain and swelling everywhere that my gp referred me and i got a diagnosis of RD . I wished that I had caught it sooner and got it treated earlier. I just had no idea .
Thank you for the thyroid angle! I was only diagnosed hypothyroid about 2 years ago, that was a complete shock as well as I had only gone to my GP about constant headaches! I do get tired, but then it is difficult to know what is normal / not so normal tiredness.
I thought that my GP wanted to see me this time after lots of blood tests due to the hypothyroidism and maybe about upping the levothyroxine dose. She said there is a chance it may not be RA but there were 2 tests she said which really did indicate it.
I have discomfort, I would call it, in my right hand thumb joint, index finger where it joins the hand, on the side, and weirdly my 'ring' finger below the knuckle where there is a slightly raised area that seems to be a purplish colour, my GP asked if I had knocked my hand as it looks like a bruise, but it has been there for sometime now!
All the best to you!
Tell your rheumatologist about your difficulty with tablets. Most of the time the methotrexate tablets I get are tiny, not much bigger than a pinhead. Maybe the consultant could specify that you need those.
Thanks, I will tell them and see what they say! The smaller the better!
I was told to use a straw to swallow but I find if I have a mouthful of water and then pop in the pill before swallowing, that seems to help. I’ve been told I have Seronegative R A and have been on steroids before I was diagnosed. Now they want me to take although I can’t make myself take them after reading side effects, I’m 80 now and my doctor agreed with me that she can understand my reluctance to put up with the effects. I’ve been told I have erosions in wrist and ankle joints but I haven’t been told to give up table tennis or swimming. I hope you get on well with everything
Interesting tips, thank you! Sorry to hear about your dilemma about steroids, all the best.
Just realised I didn’t say it is Methotrexate I don’t want to take. By the way I’m Kathleen, not Brian Gilbert. Got it wrong when I joined. Old age must be catching up with me very fast 🤣 best wishes
Ah, I see, the list of possible side effects do look scary but I suppose they have to list everything that's been reported by a certain number of people taking them?
I did wonder about your name, when you signed off as Kathleen!!
Sounds like your GP is being proactive in getting you sorted I would say yes take your husband with you on the first visit another set of ears is always handy, write down any questions you have beforehand
Methotrexate is usually the first drug they will try you on and it comes in tiny tablet form or injection the first battle will be finding the dosage for you.
RA has come on leaps and bounds even in the last 20 years since I was diagnosed so they know their stuff
No question is stupid a pain diary is good and score your pain 2-3 times daily as you will find the pain becomes less as you take pain killers throughout the day score 1 to 10 with 10 being the worst.
Also record your early morning pain score and how long it is before it starts to ease
I thought I had just replied to you, but maybe not, so am sending another reply. Apologies if you get 2 very similar replies from me, doh!
Thank you for your advice, I hadn't really thought about them needing to get dosage right to start with, keeping a diary is a good idea to help with this.
From the NRAS info I have read, it does look as though there have been some good advances in drugs, thank goodness.
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Well much debating I have had my first Hydroxychloroquine tablet
I Don't Understand Why Other's Have RA \"Flares\". My RA is Constant and Always Painful.
well farewell everyone I don't have RA
I have RA and developed a rash
Not sure if I actually have RA
