Daughter starts treatment: My daughter recently... - NRAS

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Daughter starts treatment

twinks1954
twinks1954

My daughter recently diagnosed with RA after birth of second baby. Aches in knees which progressed to feet, hands and now shoulders. Had blood test and no signs of inflammation but Rheumatoid Factor of 31. CCR and CCP came back normal and had ultra sound scan on hands and no inflammation showing. Seen Consultant privately for initial diagnosis and now to attend Frimley Hospital. Starts methotrexate this friday 15mg. Are pills 5mg each as wondering how many pills that would be. I may be wrong but get feeling Consultant still isnt quite convinced that it is RA. Excuse my ignorance but is prednisone given if inflammation or for pain or both? Would not like her on that if given the choice

27 Replies
oldestnewest

Hi Twinks,

Sorry your daughter has recently been diagnosed with RA, especially as she has a young family to cope with.

15 mg of methotrexate is my dose and the tablets are generally 2.5 mg so that’s 6 of them. There are larger dose tablets but as they all look similar it’s very easy to get mixed up and that’s dangerous. Also doses are changed sometimes so it’s easier to increase or decrease the smaller dose tablets.

Often at the start they prescribe prednisalone on a tapering dose to control the inflammation and pain while the Mxt starts to work. It can be very helpful.

I hope all goes well and your daughter responds well to the treatment.

L.

twinks1954
twinks1954
in reply to Downtime

Many thanks for your reply and I do appreciate it. I hope things are going well for you and meds are working. Its the newness of it all that has got me and making me sound like a wuss and an over protective Mother lol. She did have steroid injection before xmas and was pain free for 3 weeks. She is so strong and taking it all on the chin and such a doer. Joined gym and trainer has worked out fitness plan and joined pilates also goes swimming when she can.

Hidden
Hidden

I started on 7.5mg, which is three tablets. But she will also be prescribed Folic Acid tablets to take (not on the same day as Methotrexate) Anything from 1 to 6. I take 6 on Saturday to Thursday and I take MTX on Friday. The tablet form of MTX is only prescibed in 2.5mg at whichever dose her consultant suggests. There is also an injected form, some people prefer it that way as it reduces any side effects (e.g. nausea)

twinks1954
twinks1954
in reply to Hidden

Many thank for reply. Yes Natalie decided to take MTX on a friday before bed as hubby home at weekend and no nursery for children incase she is foggy headed and nauseas with meds. Seeing GP this afternoon to collect prescription. I did suggest she drinks a lot of water and that may help with the nausea. I did read that MTX can be injected and helps reduce side effects

Did your daughter. have her estrogen/progesteron ratio and thyroid checked. These hormons are known to go out of balance after pregnancy and give the same symptoms as RA. Before starting immunosupressants that have known to have an effect on these hormons it's quite important to make sure, especially if the most important indicator CCP. of RA is negative. Good luck, it's not so easy to see the clear picture and sometimes it's of use to get a second opinion. Simba

Many thanks for your reply. Yes she had those checks and checked D3 level also. I was very surprised at number of new Mums who are diagnosed with RD and at first GP said it was probably hormones and would settle when baby was a year old. Grandson is one now and pain spreading for her. I say pain................... its more aches

Hidden
Hidden
in reply to twinks1954

I was diagnosed when my youngest son was 3 years old. He now has a partner with RA. At least he'll know what to expect. :-)

twinks1954
twinks1954
in reply to Hidden

And I bet its made him even more caring. Consultant did say if any meds dont suit her to come back as they have plenty more to try. Wondering how long she should stick with a med that is making her feel worse? Its the newness of it all and the unknown and this site is great for tips etc. Wondering does it ever go into remission and you can have weeks, months and even years with no aches and pains

I would be a bit weary though starting with mtx at this point since nothing actually in her blood results is pointing at RA. Pain can be caused by a multitude of factors. Mtx is a very strong med that affects the whole body in many ways. Have you thought about getting a second opinion? I do not really understand what the facts were for making the diagnoses of RA (?)

Only thing in her bloods that showed was Rheumatoid Factor of 31. She saw Consultant at hospital and I got her to see private Consultant CCP and CRP

CCP and CRP showed nothing

Here are NICE guidlines for RA treatment. You can see that ( plaquinil) Hydroxy is listed as an alternative firstline monotreatment instead of MTX as well. Hydroxy is the least toxic of the DMARDs and not a cytotoxic med like MTX.

pathways.nice.org.uk/pathwa...

I think she's best following the advice of the Rheumy who examined her Simba don't you? Suggesting alternative meds when her daughter hasn't even trialled MTX isn't going to help. There's plainly a reason MTX has been thought to be the considered DMARD for her.

Exactly she should take up these important points with the rheumy before making this serious decision. I am sure that talking through the situation will give it more clairity. As it is it seemes that there are many questions that need answers that will help mother and daughter to understand the situation. This is ofcourse only my opinion and I probably only have part of the facts. I do however find it important for patients to always have as much as possible of the relevant facts and I believe the knowledge and experiences of other patients can be of value in grappeling these..Simba

Do we know she hasn't? I'm sure her Rheumy will have informed twink's daughter, delaying things by asking for a second opinion won't necessarily clarify anything. She's starting MTX this evening so happy with the advice she's been given, really not something we should be interfering with at this late stage. MTX is a very good med & that along with pred is what's been prescribed after careful consideration I'm sure.

Many thanks for your pointers Simba. Paying privately to see this Professor of Rheumatology at a Nuffield Hospital with Natalie was our second opinion. Had 3 consultations with him and series of tests completed.

Good luck😊👍🏻.Simba

This RF result by itself is not enough evidence for diagnosis of RA.

I'm sorry your daughter is having such trouble, it must be particularly difficult & a concern with having a newborn. I would think she's in need of more support than she probably would otherwise.

Her Rheumy is being cautious & I would think seeing if she responds to the MTX & pred that it will help towards a diagnosis given her inflammation values aren't raised, no bad thing, he's not dismissing her out of hand.

As has been said MTX tablets for RD are only prescribed in 2.5mg to avoid overdose accidents. They are also available in 10mg but they are only used for cancer treatment, we're prescribed low dose MTX (anything up to 25/30mg) high dose are only used for cancer patients. So her 15mg will be 6 tablets which is the dose I started on. Her Rheumy may specify how he wants her to take them but it's usually once a week (very occasionally splitting the dose over 2 days but this is not the norm) & he'll probably recommend she chooses a day most convenient to her. When I started it nearly 9 years ago I was advised I divide my dose with meals so took 5mg with breakfast, lunch & dinner & had no side effects of note, a little hair thinning initially but it settled the longer I took it. I'm on MTX injections now (an alternate way of taking it, usually considered if tablets cause intolerable side effects) & inject on Wednesdays. She'll also be prescribed 5mg folic acid, these are intended to stop or ease any side effects such as nausea, mouth ulcers etc, she'll be told which days to take them, anything from once a week to 6 times (as I do), they're not taken on the day she'll take her MTX. MTX is a folate antagonist, it's unable to determine which cells it works on & unfortunately that includes folate which we need for DNA, why it can sometimes affect our hair growth, in fact any cells which are continually growing, in a similar way we're advised to take a lower dose of folic acid before pregnancy & up to 3 months. Taking the folic acid helps to replenish what we lose because of needing MTX to treat RD.

The prednisolone has been prescribed to work on any inflammation she has & therefore the pain caused by it in an effort to help make her more comfortable, so it's for both. I would think also to see if she responds to it, if she does then she has inflammation whether or not it's not been picked up on the blood test or ultrasound the pred will confirm either way. Again I would think she'll only be on pred short term, often a month's course is prescribed which isn't harmful & often doesn't need a tapering plan so can just be stopped, it's less of a concern than long term use. It seems you know they're not the best med to be on continually if we're to spare our bone density but really are necessary in your daughter's instance!

I hope some of this helps. Do let her know if she wishes to talk to us herself she will be made most welcome. Also if you have any more questions we'll be happy to help where we can bearing in mind we're not medical professionals so can only give our experiences & knowledge through living with RD. By the way RD (Rheumatoid Disease) is an alternate name for RA. Many of us now prefer to use this as Arthritis is often misunderstood as being the more common degenerative OA. I have both so do appreciate OA is also painful, it's just to distinguish RD is an autoimmune disease.

Many thanks for your reply. Thats interesting about not picking up inflammation in blood tests because when she had steroid injection.... she felt back to normal again and no more aches. Have you been only on MTX for past 9 years? She has 3yr old and baby just turned 1yr. He recently joined his sister at Nursery as daughter on maternity leave. Little fella is so heavy to carry and we babysat them and carrying him upstairs.............. dont know how she does it. Son in law is fantastic support and pro active and I gave them this sites details to join when she feels she is ready. Gave Natalie one year membership for NRAS and they have meetings on different topics ie physiotherapist, Consultants etc who attend and is near them in Camberley plus get to meet other members.

I do agree as the few people that she has told they say they know someone with arthritis and will be better when sunny weather comes.

The steroid will be reducing inflammation, it's preferable to not have anything that can mask inflammation & give an inaccurate reading but it's not always possible. Makes sense to have unmedicated blood tests & examination. Steroids can work really well as she has experienced.

I started treatment back in 2008 with hydroxychloroquine (HCQ) but it became less effective after around a year when MTX was added (this is double therapy, three DMARDs taken together is triple therapy). Once MTX was working HCQ was stopped & needing an increase in dose I changed to injections. I've since tried double therapy MTX & sulfasalazine (SSZ) which was stopped once I reached 2000mg because I felt really low on it & it wasn't really helping. I then tried MTX & leflunomide (LEF), that was stopped because it caused peripheral neuropathy & carpal tunnel syndrome, confirmed by neuro exams whilst still on it & repeat exams once it was stopped showed improvement. So, my MTX dose was increased to 20mg which is just about holding but I'm concerned for how long, especially as I'm to attempt tapering off steroids as well. An increase to 25mg isn't an option due to increased liver values.

If it helps you'll find a list of abbreviations we use regularly under Pinned Posts.

It's a real bonus Natalie has support, particularly from her husband but also yourself, she may need more so be ore soared just in case. She'll doubtless appreciate anything particularly with just starting treatment. Helpful both little ones attend nursery. She can at least have forty winks whilst they're there, especially if she experiences RD fatigue.

I'm sure she'll find being with NRAS helpful & being in contact with others at the group meetings, you never know she may meet other mums with little ones & be able to swap ideas of how to cope best.

So you've already had the misunderstanding between the two arthritides! Actually I find warmer weather helps both RD & OA but not humidity, that's as bad as damp. My joints respond better to warm than cold, other the opposite, it's an odd condition.

You've had sensible advice already. But just to add if you've never experienced how you feel with RA it is hard to imagine it, so easy to say "oh don't take prednisone". Quite frankly when I was early in the course of the disease and it was not fully controlled I would have hit anyone who suggested taking the prednisone away from me. They are the devil's tic-tacs, so I do understand why you might be against her taking them. But it is her choice.

The prednisone is usually given to calm down inflammation while the slower acting drugs have time to work. And inflammation causes pain, so it does reduce pain. Also if she is dealing with two small children it will help with energy levels as RA can make you feel totally rubbish.

Cwendyn
Cwendyn
in reply to helixhelix

I know where you’re coming from! Doc said he thought I should stop Pred. I said I’ll buy them off the internet then so he didn’t stop them I would have been totally immobile. Thankfully, no need for them now on Benepali. Phew!

Hidden
Hidden

It's only very high doses or long term use of pred that you have to be careful with. When diagnosed with Vasculitis I was taking 40mg (8 tablets) daily for 2 years, with Methylpred one gram infusions 3 times a week for 3 weeks. That's normal for Vasculitis, but you rarely have that much for RA.

Good point well made and wouldnt want to be in line of fire if suggested to her lets take away this nasty prednisone lol. The fatigue is big thing for her at the moment. Really floored her the constant tiredness. Part of the symptoms of RD and also part disturbed sleep as grandson up several times in night albeit it with teething or a cold. Good thing is that when children are in nursery Natalie does nap on sofa and she would never have done that before.

Another thing I did wonder as still in winter and Natalie does suffer with chest infections. If she is prescribed antibiotics does she stop MTX? I'm assuming GP would always be aware if that is the case

If it's a bacterial infection it depends of the antibiotics thought best for the job, she may well be able to continue on MTX until she finishes the course &/or the infection is clear. There are some that it's advised aren't taken with MTX. Trimethoprole-sulfamethoxazole & other sulfa-based antibiotics that reduce the excretion of MTX, they can lead to the body holding onto more than it should & risking side effects & toxicity. Amoxicillin can be used if necessary but close monitoring is advised, other penicillins are generally not advised. Again should the chosen antibiotic for the infection be necessary it only means she needs to halt taking the MTX.

Hi, I was like your daughter at first, got a false blood result in the beginning, but went on steroids for month, instant results, but RA showed it ugly head after I’d finished the course.

Started Methotrexate tabs, ( 8 tablets once a week, same day, make sure you take Folic acid on the other 6 days, it helps with nausea) last November with good result initially, but then started on injections due to chronic nausea, unfortunately the side effects just made me feel terrible, so on Leflunomide & Sulfasalazine now, double whammy.

Didn’t know this initially, but it can takes several attempts to get the right medication for you, don’t forget you can ring the RA Help advice line to speak to our lovely knowledgeable RA nurses. Best of luck. X

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