CRAPPY DISEASE !

CRAPPY DISEASE !

Hi ,

I'm new here. I'm in my early fifties ( mind feels like I'm in my thirties , body feels like I'm much older) .🤣

Married and have sons , 17 and 18 . Work part time now ....... in , of all things pain management/ massage , in an aged care facility.

Diagnosed almost 12 months ago .

About five years ago I went to my gp, explained how my feet get sore in the mornings, mostly. I have a sister with R.A , aunties on my fathers side , aunties on mothers side , and a few cousins with R A , psoriatic Arthritis , and few in the family with systemic lupus. Dr ordered bloods , all ok except Rheumatoid factor just slightly elevated....So , thought I better get a referral to Rheumatologist! Waited for six months for appointment , feet pain became a little worse...... Saw "specialist rheumatologist" .......Told me I definitely did not have arthritis (any kind) and that I was just depressed.

😧😧🤷‍♀️

Can remember driving home thinking , well yes ....... ok , I'm working two jobs , do lots of driving , work 10 hour night shifts , have two kids , am looking after my parents who are unwell , had a very stressful time building a new house ( and ripped off $$ in build) , etc etc , and I was only 12 months post double mastectomy for breast cancer .....maybe I am a bit down .....

But I still had sore feet !!!!!!😂

So , all the stresses carried on ......and much more stresses developed (triple I reckon)....... up until 12 months ago .

Woke up one day and had a lot of trouble lifting my left leg , without severe pain in my groin ........settled after few days. Two weeks later....

Developed a swollen area on my hand , over my knuckle......was up north with a friend (little break as both our parents had passed away) ....

Hand was very painful , drs spent three hours attempting to remove my wedding rings from swollen hand. The young , female , very self assured dr kept telling me that I had definitely been bitten by a spider ....no doubt about it , she said ,!! ??? (Eventually settled after a week ) exactly two weeks later ......

At work , felt shoulder twinge ........throughout afternoon and evening increased pain which became agony .......husband took me to hospital ....told I had a torn rotor cuff injury to shoulder ....... in a sling for a week ........was improving , then suddenly other shoulder went the same!

Husband took me to see a different dr , he ordered ultrasound ........ "nothing serious..... it's a simple case of bursitis "..........

Different dr .....did bloods ....diagnosed with an inflammatory arthritis , referred to Rheumatologist ......confirmed RA . ( extremely high RFactor , positive anti ccp , and elevated ESR and CRP . ( inflammatory markers) .

Commenced methotrexate , worsening symptoms......Plaquenil was added . No real big improvement so went onto Humira .Have been on Humira for eleven weeks.I was feeling quite good on the Humira , however I was starting to get all the symptoms back .Today I have been to rheumatologist, and he decided he thought Enbrel injections weekly . Don't know anything about this drug , so about to google . I'm guessing it's similar to Humira ....I really hope injections not as painful though .....I honestly did find them painful! Maybe I'm a bit wimpy 🤗.

Bit of a long speel , so if you have managed to not get too bored with my RA story ,

I do thank you very much . ,!! Long story ....but despite my sister having this.....I don't really have anyone to talk to about all this , and it can all be a bit depressing .

I don't know how others feel but I have thought ,at times , that maybe " ignorance is bliss " . Do I really want to be knowing what's ahead of me ....... or is that silly ? We should be educated and informed and have the ability to make decisions in our treatment.........

It's a very crappy disease .!!!

Thank you

God bless

30 Replies
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Aww bless you darling,it is hard and i won't pretend to tell it isn't as it will be,but i will tell you when they get the drugs sorted you will have some semblence of normal,but it will be a long time before you get really sorted so be patient with the drs. Hugs.xxxxx

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😢. U brought tears to my eyes ......

Good ones I feel , Thank you .

you must have been all through this journey , ......

Bless you too, and I will now try to have patience with the drs.

It is surprisingly comforting to know there are so many , going through the same ....

I like hugs , so thank you ....

Big hugs to you .

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Darling your so welcome.Fell free to ask any questions you like it doesn't matter how silly it seems to you we will all have been there.

Yes i have been through tough times and at the moment i am still going through it.

Keep your chin up darling we are all for you.xxxxx

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Thank you ,

Sorry to hear you are going through a tough time ,

And I thank you for your compassion , despite what you are going through ....

Take care

Huge ( but gentle) hug to you . Xxx

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I wish i could do more,but i am always here if you want a chat.xxxx

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Thank you Sylvi ,You are very kind .

🌴🌹🌼🌷💐🌻🌸🌹

Xxx

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Hey! Where is that picture taken if you don't mind me asking?

Bitten by a spider .... you should get some sort of prize for the most ludicrous non-diagnosis to date (and there's a lot of competition!)

It is depressing, I know that. But things can and do improve, I so hope Enbrel turns out to be your wonder drug. I haven't quite worked out the timescale you're describing, but it sounds as if you've actually been diagnosed fairly early, many of us wait years. And the sooner you commence treatment, the better the outcome often enough.

Treatment can be trial and error. It has to be because the drugs target different parts of the immune system. I can't help wondering whether you stopped Humira a little soon. It's a hunch, not knowledge, but my first flare was dreadful and lasted for ages and I suspect that no drug would have really shown what it could do until the flare had started to run its course. I suspect you have a good rheumy though, one who is going all out to get your disease under control. That would be half the battle.

I think knowledge is power. We never actually know what is ahead of us but we may as well have our eyes wide open about what is happening currently and what has happened. We need the ability to join up the dots if we're to make good decisions and live well with the disease. Which is definitely possible!

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Hi ,

Thanks for the laugh.... I was in tears a few minutes ago !!!

Timescale ......is coming up to 12 months since diagnosis by Rheumatologist . Looking back though , I'm pretty sure I've had this niggling away for at least five years. No real flares as such , until about 15months or so ago , first the groin/hip , then the finger/hand , and then the shoulders. My Rheumatologist said I have aggressive disease .....he did say we were getting in early, to which I am thankful....... I have felt though that even whilst on the medications , week by week , I could feel that more joints were being affected . That was until I went onto Humira , and I was actually starting to feel like l was "getting better" , but in the last few weeks I can feel myself going backwards as they say . Dr said that the Humira was helping , but not as much as it should of been . I hope he's a good Rheumatologist......and knows what he's doing ???!!!

I hope you liked my photo. 😀

Photo was taken on a very cool day .....in Milford sound (New Zealand) .....January this year , on a cruise . They were having a heat wave here back home .........Beautiful place ....

I am really hopeful , I can join the dots.....and live well with this RA. ( trying to be confident! )

Thanks .

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Hi Strayleaves,

Sorry to hear of all your health issues -I do hope Humira helps.

For what it's worth my advice would be to leave Dr Google well alone until you are settled on a drug that suits you.

If you read horror stories it's human nature to think you will get all the conditions described...whereas a large % of us get on well with whatever drug we take.

I was diagnosed with RA many years ago...but only after searching out a rheumatologist that had a good reputation locally for myself, after being told by my GP when I was in my 50's "You must expect a few aches & pains at your age"! This when I couldn't move my right arm without squealing in pain.

But nearly 20 years later I'm "OK" ......so try to be optimistic ...it probably won't be easy, but once you are settled on drugs that help & have a caring rheumatology team behind you things won't look so bleak! Don't neglect your rheumatology nurses, they can be really helpful if you do get any hiccups with your medication.

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Hi Agedcrone

Thank you for your positive reply .

You are probably right ....leave google alone.......I downloaded all these books on RA , when diagnosed ......found I became quite depressed after a little stint of reading .......but then , I do want to be educated , and informed , and I do want to look after myself . How can I do that if I don't read and google ........or is it , just be careful of what you read ????!!!!

I'm guessing , when you say you have just woken up .......you are ? In. England ?

I'm in Oz. (Australia) 🙂

Thanks again for your positivity. Much appreciated

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Hi AgedCrone ,

Thought I might just add .....

I have noticed you talk about your Rheumatologist team ??? Don't have that ..., nor does my dr have Rheumat nurses......

Has a secretary though ....🙄......

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Yes I'm in England. Usually when we are first diagnosed here we see the Consultant rheumatologist. In the rheumatology department there are junior doctors (not necessarily youngsters) training to be CR's, younger newly qualified doctors who rotate around various specialities & qualified RGN's who have an extra qualification in rheumatology. I have found them very helpful & grounded. They don't Molly Coddle you( do u have that expression in Oz?) but I feel they do understand the nuts & bolts of your fears of new drugs better than the doctors.

There are also physios & occupational therapists. That sounds very efficient, but we often only get to see a Jnr doctor every 6 months, & only the CR if the Jnr can't deal with it. So it's not all plain sailing!

It's a slow old business getting settled on " your" meds. I thought I was there with Methotrexate, for seven blissful years, then it all went pear shaped & my CR had to find another drug that would suit me...which he did, & as I say I am now "OK".

But take it easily, give the meds a chance - but if you are vomitting every day (as I was on sulphasalazine) don't just soldier on...get some advice asap!

Hope you feel more settled soon...things really can get bearable, it just takes some longer than others to find an effective treatment.

Good Luck....let us know how you get on!

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Sorry ...re my last post...I meant Enbrel as your new drug...just woken up & not had my morning walk yet!!!

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Will keep you posted . Hope you had a lovely walk. 🤗

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Hi, sorry to hear you've had such a bad time. I took enbrel for 2 years without any problems until I had a flare then was changed to Orencia (abtacept). Good luck.

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Hi KayEP

Thank you for the reply .

Good luck to you as well .🙂

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Omg you certainly have been through it and sounds like a tough time for you ! It's hard to see light at the end of the tunnel at times ! Try to stay positive and keep your chin up as you will get through this with our prayers and kind messages ! Bless u xx

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Hi Susan

Thank you for your kind message and prayers . Maybe I should just take one day at a time . Maybe one pain at a time , one problem at a time ....

must admit one minute I think I'm reasonably positive , the next minute , I am thinking of the future , and a little fear creeps in .....

God bless you

X

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Hi strayleaves and welcome to the gang. You really are having a rotten time of it aren't you? If you need to have a rant, a moan or ask a question you've come to a good place. A lovely bunch of informed, knowledgeable people who know what it's like and who have been a lifesaver for me. Please remember that no question is stupid. Just a thought though. Most of those posting here are the newly diagnosed and worried or those poor souls having problems. Most are far too busy living their lives and getting on with things. Big gentle hugs

Jan

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Hi Gnarli

Thanks for posting .

Thank you . Have just looked at iPad and read about someone apologising for being negative.....then I realised I was being negative and maybe it's really not what people want or need to be hearing ......how crappy RA is . I guess though it is reality , but I just need to be more positive. ....... but then I guess it's no good pretending your great and cruzin along ........when you are actually really suffering ......physically , mentally , maybe spiritually as well.....

😯 🤔 🤣 😩

Goodness .....am I going in circles or what ....

Ok bedtime ...

Positive thoughts and prayers to all ......

And thank you 😊

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Wow, you've been hit hard. Glad you finally found some relief. I was on Enbrel for years (it hurts, but for less than a minute during injection. If I inject on the back of my upper arms, I find it hurts a lot less than in my thighs) and went into a remission. Got Crohns and put on Humira (Enbrel doesn't do both). I'm trying diet and exercise and stress reduction in the hope of a more permanent remission. Know all about bursitis, which apparently is one of RAs little uninvited friends.

I'm sending wholehearted feelings for peace and healing to you.

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Hi Charmq

Thank you .You certainly sound like you have been through quite a bit as well. I'm not sure how I feel about the Enbrel yet . Did you find the Enbrel injection more "ouchy " than the Humira . Is the injection commonly given weekly? I am keen to look more into diet in reducing inflammation....if you have any suggestions, I'd appreciate it .

Take care .

Karen

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Hi sorry to hear your pains. I have had PA for nearly 50 years!! Now back on Enbrel and much better. It hurts to inject in the leg but no pain in the tummy. That's where I do mine. Keep going. You have a lot to look forward to now you are on Enbrel

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Hi Rheumyjoy

Wow 50 years , that's quite a while . Did you come off the Enbrel because it wasn't working? I'm glad you are much better.

Must admit though that I cant really imagine having a weekly injection every week for the rest of my life ....bit daunting .....but if it works , then so be it .....fingers x then that it's going to work for me .

Take care , hope u r happy and pain free .....

Karen

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So sorry for you its reassuring to know other people feel like me. My poor husband is wonderful, like you RA moves all over my body manly legs and hands ,we have ordered a new electric beds in hope it helps me by raising my legs and being able to put the back up so I can get out of bed on my own instead of having to wake my husband up to help me quickly as I need the loo, please God let it help as we have broken the bank buying it ,hope you get on OK kindest regards Elizabeth x

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Hi Liggle

You are right , It is reassuring . I often thought it would be nice to be able to talk to someone else going through the same thing ,......now I feel like I have lots of new friends who are going through something similar. ,!!!! (Unfortunately for all of us)

🤗😀🙂☺️

I really hope the electric beds work better than you hoped. I'm sure it will be worth it .

And kind regards to you as well Elizabeth. X

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You poor thing, take heart though as once the right medication for you has been subscribed you will be back on track. I was one of the lucky ones, in as much, as the first drugs I was given suited me. I take hydroxychloroquine along with methotrexate and folic acid. Good luck x

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Hi Winkles

I really do hope I find the right drug , or drug mix ..... I'm happy for you that you sound like you are doing well ....

just trying to stay positive here....

Thank you 😃

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I think you are too kind in calling this disease "crappy". I call it bloody horrific. :) RA Sucks!!

Welcome to this site, I look forewards to chatting with you.

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Thanks for the welcome ! Suzannedale...

Yep 👍 your right !!! It's more than crappy .... its a cruel disease , and more !!!

take care x

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