Husband due a flare, ramble & thoughts

wifeofRA
wifeofRA Member Posts: 3
edited 26. Jan 2016, 03:49 in Living with Arthritis archive
Hi all,

I don’t suffer myself but my husband does. We’re 28, he was diagnosed with RA about 3 years ago. I’m looking for just a little advice or an ear really. I read all the internet and leaflets I can but each time it crops up I just feel lost and don’t understand at all. So RA is main diagnosis, takes 1 folic and 1 methotrexate tablet per week. But also psoriatic arthritis was thrown in there on the diagnosis as psoriasis on his scalp appeared a year before any arthritis diagnosis. He also has plantar fasciitis in his foot, again, an earlier condition before RA. They want to raise his medication dose but I feel like that’s losing, surely it’ll worsen the side effects, and make it harder when he comes off.

His family suffer from RA and all have had hip/knee joints, but not until 50+. No one so far has suffered in their knuckle or toe as he does, and no one diagnosed under 30. Once one part flares, they all flare, regardless whether its RA or plantar fasciitis. The flares are the worst, he hasn’t worked out how to deal with them yet, but is that even possible, to learn to deal with flare up and know what to do best? He’s in agony ranging from constant pain prickling or sharp stabbing every 10 seconds. It stops him sleeping and that is the worst time. He’s so angry, and frustrated, and crying upset, and it breaks my heart as I can’t help or soothe him. Ice packs are the only thing that’s hinted at a ‘quick relief’, but that doesn’t dull completely, and even then it’s temporary for half an hour. Does anyone know of anything better? There is a pack ready for heat also but he feels that doesn’t work as much.

The solution so far is constantly going straight for steroid injection. We have 3-5days of awfulness before he’s usually fitted in for an appointment where he’s injected, this so far has given 6 flare free months each time. And then we’re back round to the awfulness before rushing for injection. We’re both so worried of it coming back every 6 months, or sooner if unlucky, and I don’t understand as surely the methotrexate is meant to stop this? It’s a crap hand we’re still learning to deal with but it’s ruling everything, and I don’t see a future where it doesn’t. Surely it’s only going to get worse as he gets older?

A selfish thought is we also want to try for a family at some point in the next few years which he’ll have to come off methotrexate for. I’m worried how this will work; is he going to be putting himself through more suffering, or at risk of it getting worse during this time (which lets say he’s off it for a year). Or is there an alternative safe medication for him that still prevents the spread somewhat?

I hate seeing his pain, and I know he needs to join a site like this also just he has someone to talk to. Unfortunately his attitude is a defeatists one, which is also difficult to reason with. We’re on tenterhooks for the next flare which is why I’ve gone searching again and stumbled here hoping for..anything really. Maybe this is just my unload! Thank you for reading this far.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello wifeofRA

    Welcome to Arthritis Care Forums. As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    All best wishes
    Mod B
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    What an awful situation for both of you! RA is a nasty disease that affects everyone in the family albeit in different ways. Of course you must be desperate to help your husband. I've had it since I was 15 (I'm now 69) so my husband has lived with it too for all our married life.

    I wonder how much, for all his family history, you both know about RA. It sounds to me as if he's both scared of the disease and scared of the medication. Maybe, with his family history, he's seen family members very incapacitated and with deformities. However the medication is there to, hopefully, prevent that.

    I have never before heard of anyone taking only one methotrexate tablet. I take 15mgs (6 tablets) weekly and that is considered to be an average dose. (I used to be on 22.5mgs) I also take hydroxychloroquine. This, as you have described, is a powerful disease and it requires powerful medication to hold it in check. It 's not 'giving in' to take the medication: it's taking the only valid option. And, as for 'making it harder when he comes off'...RA is a disease for life so the medication also is for life. There is only one way for your poor man to feel better and that is to take the meds.

    The medication for RA and PsA is more or less the same. The plantar fasciitis has probably come as a resu lt of them so that, too, should be helped by taking proper disease modifying meds such as methotrexate, but only if he takes them at a reasonable dose. I really can't see one tablet making any difference at all.

    Steroids are really not a long term solution. They will hold back the symptoms but not the disease itself and they bring their own problems when taken long term.

    I suggest you read up on RA (look at the grey tabs above especially 'What is arthritis' and 'managing arthritis') and then give our lovely helpline people a call. Please don't worry alone. We are all here to help and do understand the pain and frustrations of arthritis.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hi there,

    I can`t add much to what SW has already said, but I too am surprised at your husband taking only one methotrexate tablet. The current thinking seems to be to hit the disease hard with either a combination of two drugs, or in some cases three, to have a greater effect on the severity of the RA.

    I don`t know if your husband has been prescribed any NSAIDs - anti-inflammatories, which need to be taken with a stomach protector such as omeprazole?

    Steroid injections are wonderful when they work, but eventually bring their own set of problems, so best not to get too used to them.

    As SW says, the medication is for life, but is the only way to have some control over how aggressive the disease is. Mine has been under reasonable control for some time, compared to my early days, which were crippling, but I still get very debilitating flares, and accept those as a fact of life.
    Do keep in touch, as there is a lot of support on here, and we`ll help where we can.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh heck, I feel for both of you, him because he's living with it and you because you are too, albeit in a very different way. Both of you are scared, yes? I reckon you are of the generation where supposedly medics can fix everything but now you're finding they cant. :(

    We now know that there is enough genetic evidence to prove that this dross runs in families, many moons ago nobody knew why but nowadays there is a better understanding thanks to research etc. I was born with auto-immune trouble so my arthritis was on the cards - still took me by surprise though! :wink: I'm not sure what your knowledge or understanding of an auto-immune arthritis is: it's happening but maybe you both lack the necessary information of what has to be done meds-wise to control it. I honestly cannot recall someone who was getting by on one meth tablet a week, and folic acid isn't a med, it's a supplement. I have PsA but to some extent the label is immaterial because the meds are the same. I inject 15mgs of meth per week and take some other stuff too because I have too. I keep my pain relief to the minimum, not through fear of addiction but because I prefer to keep it that way: pain is scary but useful as feedback.

    I wish you both well. DD
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
    Hello wifeofRA,
    It's nice to meet you, although I wish the circumstances were different!
    Just a thought, perhaps the one methotrexate tablet taken per week is a 10 mg one, I know they're not used very often, but I've had them in the past.
    Numpty
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    A good point, Numpty, though I'm not sure the 10mg ones are still 'legal tender' in UK. I remember them with affection because they saved me counting out a handful of 2.5s - and dropping them :roll: . When they first changed I asked about the 10mg ones but was told they couldn't do them anymore as too many people were accidentally overdosing on them. The 10mg and the 2.5 mg were, indeed, only slightly different in shade but I did wonder why they couldn't just change the colour or shape as with so many other meds.
  • wifeofRA
    wifeofRA Member Posts: 3
    edited 30. Nov -1, 00:00
    Thanks all for your replies, it is comforting to read and interesting to hear from different sides. I checked at the weekend and it is a 10mg tablet which is taken once a week. I didn't realise this was unusual, it is what was first prescribed and has never been altered. He doesn't take any regular NSAIDs.
    There is a routine check up appointment in February which i will be attending along with my husband, as I think it will benefit me to hear it firsthand and ask any remaining questions.

    Whenever a new steroid injection is given he is told it isn't a solution and will weaken his tendons and probably a whole host of other issues eventually. But when he's saying it's at it's worst the quick fix is the most appealing. I'm sure somehow this will have to change one day.
    In February i'm sure the doctor will discuss raising his dosage again, and so i'll find out about other medications which can be taken alongside methotrexate and whether it could benefit also. But it's great to hear that eventually for some of you it is manageable or under control. I realise it is still new for us in the scheme of it, all i can do is learn as much as i can really (thanks for pointing through to the links on this website), and it's great to know it's helpful here for when i/we need it. Thanks again
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Ah that makes more sense though clearly, if he is flaring regularly, his medication needs checking to ensure he's on the right dose. Please mention his regular flares at his check-up. It might be that either a higher dose (10mgs is not very high) or the addition of another med would make his life much easier.

    You say the 'quick fix steroids jabs' will have to 'change one day' but, really, the sooner the better. We've all used them but it's far better to let the DMARDS do their work than to use steroids as a regular top up.

    Please let us know how the appointment goes. I hope it's a good one and you both feel it has led to some progress.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Steroids 'fix' nothing, they merely mask the symptoms and the disease continues to rumble away unchecked. I'm amazed that he's been left on this low dose for so long - how often does he have his bloods done? I had the 'luxury' of one med only for a mere two months (I thought it would sort everything, how naïve was I?) and for years now I've been on various triple therapies (i.e. three different medications) - alas all were far too little and far too late so the damage is permanent and cannot be reversed. My PsA is under proper control (the bloods reflect this) but the meds for that do nothing for the OA which has occurred in some very useful joints. :|

    Please let us know how his appointment goes, it may be worth your contacting AC and asking them to send you some of their useful and informative leaflets about auto-immune arthritis, it's cause and treatments etc. It seems that neither of you have been given much information by his rheumatologist which is not helpful for you, is it? DD

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