MY MOM HAS RA. TRYING TO LEARN ABOUT THE DISEASE. - NRAS

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MY MOM HAS RA. TRYING TO LEARN ABOUT THE DISEASE.

PPhoenix77 profile image
9 Replies

Hi everyone,

My mom is suffering with RA and is in a lot of pain. She has been taking Methyltrexate for a while now. She is in a flair through the holidays and is doing too much. Decorating and cooking. I joined this site to try and help her through this tough time.

Thanks for listening

Christine

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PPhoenix77 profile image
PPhoenix77
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9 Replies
Mhairi54 profile image
Mhairi54

You're such a wee sweetheart joining this site to support your mum. You have no idea how important it is to have a good support system around you when you are feeling like that. My best advice would be to just be there when your mum needs someone to talk to. It is really hard, as more often than not you'll not have any solutions, but just having someone there for her to speak to is so important. I'm not very good at talking about how i feel, so tend you bottle it all up, particularly around people who don't understand how I'm feeling. It's not healthy I know, but I hate feeling pathetic. I have a friend who has endometriosis, who also deals with constant chronic pain and fatigue, and it's so good to speak to her about how I'm feeling. Your mum is very lucky to have you.

PPhoenix77 profile image
PPhoenix77 in reply to Mhairi54

Thank you. You are so kind. Yes she is a bottler also. I never knew how hard it can be.

sylvi profile image
sylvi

You want to gather together as much information as you can so when she needs answers you will have some to give to her. You are a lovely young lady who is prepared to do what she can to support her mum. The other bit advice i would give is cuddle her often as cuddles always helps us who have these insidious diseases.xxxxxx

nomoreheels profile image
nomoreheels

Hiya Christine, welcome. Your mum is so fortunate to have such a caring, inquisitive, insightful daughter. Support & understanding is so very comforting for someone with an autoimmune disease, particularly as in your mums case RD. I know because my husband is also, I'm not sure I would cope as well as I do through rough times without his understanding of how things can be for us.

I'm also on methotrexate, have been for 8 of the 9 years since being diagnosed seropositive. If your mum is in pain that's indicative of not being very well controlled. Do you know if she's discussed this with her Rheumy? He should be made aware if not, he can adjust her meds or add new ones to her treatment plan to deal with her pain if the cause is inflammation or her dose needs amending. Just thinking as she's a bottler she needs to tell him how it is, I've been told more than once that Rheumy's aren't mind readers! Attending her appointments with her will be welcomed I'm sure if you or another close family member or friend doesn't. Sometimes if in pain we don't fully take in what's discussed at appointments so another person with you helps, discussing afterwards what her Rheumy has recommended or if he amends me doses, things like that.

As you're willing to learn as much as can as well as being here with us answering any queries it might be helpful to have a look through the NRAS website nras.org.uk or Arthritis Reseach UK is also a other good resource arthritisresearchuk.org. Do bear in mind though some treatments may differ between the UK & other parts of the world so maybe you could search out a site in your country to have a good read through, one in the US I've found helpful is Arthritis Foundation arthritis.org

Anything we can do to help you help your mum just ask, or she could also join herself if she wishes to, she'd be made most welcome. 😊

PPhoenix77 profile image
PPhoenix77 in reply to nomoreheels

Thank you for your support. I read all your posts. Methyltrexate alone isn't working. That's a fact! She is going to see her Rhumy after the holidays. What would the doctor try next?

Christine

nomoreheels profile image
nomoreheels in reply to PPhoenix77

Thank you for yours Christine! I hope you find my posts & replies helpful. Well, it's not easy to predict which or what your mum will be recommended next, maybe an NSAID, or maybe if she's still flaring he'll suggest a steroid injection. It could be that she's simply done too much, easy this time of year, & that's all that's needed to become controlled again. If not maybe if she's on tablets changing to injections is an option (they have greater bioavailability & many do much better on them) or an increase her methotrexate dose if she's on lower than 25mg. Her Rheumy may consider double therapy with MTX & another DMARD or maybe a complete change dropping the MTX & trying possibly hydroxychloroquine, sulfasalazine or leflunomide. If she's in the UK the according to guidelines to progress on to biologics she'd need to have active RD, to have tried MTX plus one other DMARD & have 2 x DAS 28 scores of 5.1 or above on taken on two occasions at least a month apart. So from that she'd need to be prescribed one more DMARD & if that didn't control her well enough she'd may be considered for biologics as described. So, basically I don't know! It's not too long a wait until she sees her Rheumy though so hopefully she'll be one the way to feeling better soon.

medway-lady profile image
medway-lady

I'm sorry but think your a bit, going in a way, down the wrong route. Most do not suffer with RA, I certainly don't and think its "mum help" she might need, not because she has RA but becuase mums do sometimes do too much. If she is worried then I'm sure she will talk to her care team as it may be she needs another medication either an alternative to MTX or something added to it. Don't think its as easy as helping as if your mum is in a lot of pain it may well be beyond your help and we just don't know thw circumstanses which have made her tired. People with RA get fatigue yes, but also get bugs etc and a visit to the GP may just be in order.

I think your very kind but do stress RA is controllable and no one should be unable to acheive remission with the right meds. Its also about pacing yourself for some, but thats the same for any of us over 60 ! lol

RA does not affect me much now although it took time to get to this stage, do encourage your mum to not accept pain etc as normal with RA for most its just not.

Kai-- profile image
Kai--

.

See if mum might appreciate Sally’s 👵 experience, PPhoenix77/ Christine: healthunlocked.com/cure-art... 🤔

(Mum’s darn lucky 🍀 to have you, dear daughter. ☺️👍)

Abundant, realistic hope 🙏 & practical help. 💁‍♀️

Plenty to learn 👩‍💻 ( healthunlocked.com/cure-art... ) 👩‍🏫 along the way. 🛣

Keep taking good, loving 💓care of your mum & yourself, dear lady. 🙏 🍀 🌺 🌞

.

🎄 🔖 🎁 🎅 ❄️ ☃️ 🌨

.

catwoman4 profile image
catwoman4

Not sure whether mum is on tablets or injections, I switched to injections a while ago and this at least helps with the sickness feeling. Mum needs to speak with rheumy people because the correct dosage of meds , once sorted, should help her a lot. I had a good few flares until mine was sorted, and I have hydroxychloroquine and folic acid too. Don`t let her think she can steam into any jobs/tasks, she needs to pace herself and stop to rest periodically. No-one should have to suffer the terrible pain that a flare causes, so if she hasn¬t already , then get to see the experts fast, badger them if you have to , I was given strong co.codamol when I flared which was a great help until correct dose sorted it all out.

Good luck with it all, it will get better

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